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Author Topic: My very own lymphoma  (Read 11303 times)

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Offline Buckmark

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  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
My very own lymphoma
« on: November 13, 2013, 01:23:23 PM »
Folks,

If perhaps anyone has noticed that I haven't posted much lately, it's because I was recently diagnosed with non-Hodgkins lymphoma (Burkitts).  It started back in September when a lump appeared under my chin, virtually overnight.  Through a series of scans and biopsies, I found that it was lymphoma.  I then was referred to an oncologist (who I like very much) and have been through a series of diagnostic procedures, plus a surgery to implant a port in my chest for chemo, which I started last week.

The good news is that this is a "high grade" lymphoma which is very susceptible to chemotherapy.  I'm at Stage 3, as the cancer is also in another lymph node in my abdomen.  It's not present in my spinal fluid or bone marrow (huzzah).  The bad news is that my chemo is delivered over the course of a week through a portable pump that I take home with me, and I go back for a refill every day that week.  I'll repeat this cycle every 3 weeks, including "prophylactic" chemo for my spine / brain via a lumbar puncture.  Having been through two lumbar punctures already, I can say they are not nearly as bad as they sound (but still unnerving).

I'm grateful for my family and friends who have rallied around me.  My sister spent the past 2 weeks here in Austin with me while I went through my first round of chemo.   My other sister is coming to visit for my next round I've got a long road ahead, but at least I now have some idea of what to expect.

I implore everyone with HIV to pay special attention to any lumps or bumps they noticed on their body.  Lymphomas are commonly associated with HIV+ folks, especially long-term survivors, and you need to act quickly and decisively if you suspect something is wrong.  Even if your HIV is controlled and your viral load and CD4 counts are perfect as mine are, you have to be vigilant

Oddly, this all started in September about the same time as another of our forums members here (hope_for_a_cure) who also posted about having Hodgkins lymphoma.  We're going to kick butt together, and could use all the positive thoughts, energy and prayers you can send our way.

Hugs,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline 2tcells

  • Member
  • Posts: 93
Re: My very own lymphoma
« Reply #1 on: November 13, 2013, 01:53:05 PM »
How big was that lump.? And how big are these lumps and bumps we are supose to be looking for? I have 2 tinny bumps like the size of the tip of a ball point pen on my upper leg is that something to worry about?
7-4-13 diagnosed cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
1-9-14                     cd4- 62    vl- 43
4-3-14                     cd4- 110  vl-ud yay!
8-5-14                     cd4- 95    vl-ud boo

Offline Miss Philicia

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  • Posts: 24,140
  • celebrity poster, faker & poser
Re: My very own lymphoma
« Reply #2 on: November 13, 2013, 02:21:57 PM »
2tcells, if something like this concerns you merely point them out to your doctor on your next visit. The good thing about having HIV is that we all are seeing doctors regularly. He will be better able to assess your concerns.

I would caution other newly diagnosed members not to become paranoid from reading Henry's thread, or the fact that two long-term survivors have been diagnosed in the past month with lymphoma. It is all too easy to become overly anxious.
"I’ve slept with enough men to know that I’m not gay"

Offline Jeff G

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  • How am I doing Beren ?
Re: My very own lymphoma
« Reply #3 on: November 13, 2013, 02:38:43 PM »
I agree with Miss P . Henry , Im glad you decided to post . You are loved by all who know you and being able to support you and let you know we care is a true blessing . Jeff .

Offline Fisher

  • Member
  • Posts: 281
Re: My very own lymphoma
« Reply #4 on: November 13, 2013, 02:58:26 PM »
Sorry you have to deal with this, Buck. Sounds like a bit of a hassle. Hope the Chemo doesn't drain you too much. Thinking of you and your smile and wonderful disposition.
- fisher
07/14 CD 391 %20 VL UD
04/14 CD 486 %23 VL <20
11/13 CD 351 %21  VL <20
10/13 CD 390 %16  VL <20
06/13 CD 315 %19  VL  22
02/13 CD 396 %14  VL <20
12/12 CD 392 %13  VL 320
11/12 CD 428 %13  VL 1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 – Western Blot
05/83 – 04/98 - Monogamous Partner Being Negative
ARS - Los Angeles Dec '82

Offline buginme2

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Re: My very own lymphoma
« Reply #5 on: November 13, 2013, 03:12:39 PM »
So sorry Buckmark

Offline wolfter

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  • Posts: 4,559
Re: My very own lymphoma
« Reply #6 on: November 13, 2013, 03:19:15 PM »
My heart sunk a little after reading - I'm truly so sorry.  Perhaps you and James can reach out to each other for mutual support.  He too recently had the port installed and started his chemo.

I'm definitely sending you both all the positive energy I can garner.  Feel free to reach out if you ever need an ear.

hugs and luv
Greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline hope_for_a_cure

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  • Posts: 1,502
Re: My very own lymphoma
« Reply #7 on: November 13, 2013, 03:24:19 PM »
Hey man!  Glad to see your post on here today.  My oncologist emphasized that especially during the early treatments, we should drink LOTs of water.  Those tumors are already being dissolved and as you may guess, the small particles are going to pass out of our body when we void.  LOTS of purified water will make it easier on our kidneys.... we need them for more fun stuff as you know.

I hope you are getting decent rest too.  Yes, we will kick the crap out of this and lets plan to have a victory dinner when we get together next summer at AMG!


Best!

James

 


Online mitch777

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Re: My very own lymphoma
« Reply #8 on: November 13, 2013, 03:50:42 PM »
Hi Henry,

Ugh. :(

I've been staring at this screen not knowing what to say.
Just know that I will be thinking of you during the coming months and I'm so sorry that you have to go through this muck.

I hope you will keep in touch here so we can route you on along the way.

(((((((Hugs!)))))))

Mark

31 years hiv+ (oct. 2013) with a curtsy.

Online tednlou2

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Re: My very own lymphoma
« Reply #9 on: November 13, 2013, 04:13:16 PM »
Henry,

I know you will kick some ass.  I am glad to hear the prognosis is good.  I have known a few with this.  One was a childhood friend.  Being HIV neg, the swollen nodes sent off immediate alarm bells.  He said they had checked for everything, including HIV, so that's how I know he was neg.  So, I do wonder how many poz folks, and their docs, would dismiss this as just HIV-related.  Good to be vigilant, without being obsessive.

Take care, rest, and we will wait for the all clear.  My friend just posted this week that he was getting his chemo port removed.  This surprised me and was educational.  He was given the "all clear" months ago.  I guess they wait and monitor for several months, in case he should need it again. 

Edited for spelling

Offline WillyWump

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  • Posts: 7,185
Re: My very own lymphoma
« Reply #10 on: November 13, 2013, 04:49:23 PM »
Oh Geez no :( I hate that this is happening to one of the nicest people I've ever met.

I'm so sorry you are having to deal with this Henry. But I know you will kick some Lymphoma ass and get through it. We are all here for you buddy, and remember I am only an hour or so away and more than happy to help day or night if you need it. If you are up for a quick visit this weekend maybe I will bring you a World Famous Wump Casserole  ;)

I'm praying for you (and Hopey too!)

Big super hugs!
-Will
« Last Edit: November 13, 2013, 05:15:12 PM by WillyWump »
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Alain

  • Member
  • Posts: 680
  • I am.
Re: My very own lymphoma
« Reply #11 on: November 13, 2013, 04:56:37 PM »
Henry,

I am very sorry that you have to go through all of this, and I know that you will give it your best.

Your affirmation "my very own lymphoma" is what caught my eyes, and as it might sound weird to others, its telling me that you are in charge sort of speak and determined to do whatever you have to.

I am glad that your family is around helping you. Please know that you are not alone.

With fondest thoughts,

Alain


Offline Theyer

  • Member
  • Posts: 2,519
  • Current ambition. Walk the Dog .
Re: My very own lymphoma
« Reply #12 on: November 13, 2013, 05:02:46 PM »
Ah Henry I am so sorry you have to go throe the treatment , but very glad that you have posted , If the Gods will accept a prayer from this sinner then theres one more gone up for you.
Lots off Love and every good wish there is Henry
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Lou-ah-vull

  • Member
  • Posts: 948
Re: My very own lymphoma
« Reply #13 on: November 13, 2013, 05:33:47 PM »
Henry,

I too am so sorry for this turn of events for you.  I hope all of our prayers, warm thoughts, and well wishes will help you through the healing process.  I am typing this in the airport lounge in Newark waiting to board an overnight flight for an eight day pilgrimage to Jerusalem and Israel.  Now that I know about your condition, you will be on one of those slips of paper I will insert into the Western Wall in Old Jerusalem (the Temple Mount)-- of the most sacred and holy places in the world.  I hope things will be much improved by the time we gather in San Diego.

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Online bmancanfly

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  • Posts: 582
  • Medicare For All !
Re: My very own lymphoma
« Reply #14 on: November 13, 2013, 06:32:47 PM »
Damn.  :(      Sorry you have to go through this.  I hope the treatment goes well and is not too unpleasant.

"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline BT65

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Re: My very own lymphoma
« Reply #15 on: November 13, 2013, 06:41:21 PM »
I love you Henry.  Just so you know.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline OneTampa

  • Member
  • Posts: 2,219
  • "Butterflies are free."
Re: My very own lymphoma
« Reply #16 on: November 13, 2013, 08:10:57 PM »
Henry,

I am so sorry to read about your cancer challenge.

Sending super strength good vibes to you and hoping you kick the pest
over the fence and out of sight.

Take care.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline J.R.E.

  • Member
  • Posts: 7,180
  • Joined Dec-2003 Living positive, since 1985.
Re: My very own lymphoma
« Reply #17 on: November 14, 2013, 07:37:05 AM »
Hey Henry,..

Ed and I are sending you positive energy and keeping you in our daily thoughts.

Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline bocker3

  • Member
  • Posts: 3,390
  • You gotta enjoy life......
Re: My very own lymphoma
« Reply #18 on: November 14, 2013, 11:32:20 PM »
Henry,

So sorry to hear this news.  Of course, you will kick this lymphoma right out.  Your calm and steady nature will certainly help.  Glad you have solid support - do not be afraid to ask for help when you need it. 

Will send all the positive thoughts that I can down your way (as well as James way too).

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Online leatherman

  • Member
  • Posts: 6,225
  • Google and HIV meds are Your Friends
Re: My very own lymphoma
« Reply #19 on: November 15, 2013, 01:32:24 AM »
oh my. i'm very troubled to hear this news. Best wishes to you as you get chemo-ed for a speedy easy recovery :-*
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Online GSOgymrat

  • Member
  • Posts: 5,031
  • HIV+ since 1993. INTJ
Re: My very own lymphoma
« Reply #20 on: November 15, 2013, 10:49:52 AM »
I hate that you are having to deal with this. I hope chemo goes well and that side effects are minimal.

Offline LiveWithIt

  • Member
  • Posts: 391
Re: My very own lymphoma
« Reply #21 on: November 15, 2013, 07:47:22 PM »
So sad to hear about this new illnes, hope you beat it quickly. 
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline NY2011

  • Member
  • Posts: 141
Re: My very own lymphoma
« Reply #22 on: November 19, 2013, 09:17:45 PM »
i wish you the best. please stay strong and fight this. 
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: My very own lymphoma
« Reply #23 on: November 20, 2013, 05:03:31 PM »
Henry  :(    I'm at a loss for words, and didn't know just what to say about all of this, I do know that when I 1st meet you @ AMG D.C. I thought that you were such a nice guy, I know you can beat this, and I think your a lot stronger than you may think, so please be well, and keep up your treatments as I know you will, and I'd like to see you again at another future AMG, just like I did before  ;)



HUGS


DEN  8)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Jody

  • Member
  • Posts: 1,825
Re: My very own lymphoma
« Reply #24 on: November 20, 2013, 06:01:08 PM »
Dearest Henry, I am sorry I missed this post until now but please know I too hope that the chemo kicks butt and that you will be in remission very soon.  You are indeed one of the very nicest guys around and you deserve the best. 

And to our friend James, also a speedy and full recovery.

Keep on truckin' guys.

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline Lou-ah-vull

  • Member
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Re: My very own lymphoma
« Reply #25 on: November 22, 2013, 02:52:50 AM »
Henry...just got back from eight days in Jerusalem a few hours ago.  I actually put your name on a slip of paper and placed it in the famous Western Wall (aka the Wailing Wall) at the Temple Mount.  One would be hard pressed to find a holier place on this planet!  I even wore (as all men who go to the wall do) a yarmukle (a first for me!)

Keep reminding yourself how many people are thinking of you and supporting you through this.

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline WillyWump

  • Member
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Re: My very own lymphoma
« Reply #26 on: November 22, 2013, 10:11:31 AM »
.  I actually put your name on a slip of paper and placed it in the famous Western Wall (aka the Wailing Wall) at the Temple Mount. 

This is so cool Gary.
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Theyer

  • Member
  • Posts: 2,519
  • Current ambition. Walk the Dog .
Re: My very own lymphoma
« Reply #27 on: November 23, 2013, 07:11:18 AM »
^^^^^^
agree

Finding my self often thinking how you are Doing  Henry, when you have finished and recovered from the chemo I would be intersted in  hearing  more about your chemo regime .

So here's to your last chemo day Henry.

Michael

"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Buckmark

  • Member
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  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: My very own lymphoma
« Reply #28 on: November 25, 2013, 11:47:08 AM »
I've tried to follow-up on this thread a few times, but it has been hard to find the right words to tell everyone how much your support and prayers mean to me.  To know that so many people are thinking of me and care so much really lifts my spirits.  I still have a long way to go with my chemo, and I'll look back here when I'm having a down day (or week).  Fortunately, this week seems pretty good, certainly better than last week.

And for Gary, for you to put my name in the Western Wall is just so cool and thoughtful and amazing.  I still cry when I think about it.  Thank you so much for taking the time to think of me.

My love and hugs to you all...

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Jeff G

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  • Member
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  • How am I doing Beren ?
Re: My very own lymphoma
« Reply #29 on: November 25, 2013, 12:56:25 PM »
Hi Henry , you are not alone . Its hard to find the right words in this kind of situation but I hope we both can take comfort knowing how much everyone on this forum cares about you and loves you . You are always one of the first to offer support and now its your turn to feel the love . 

You can rest assured that every day positive energy is coming your way .

Online mitch777

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Re: My very own lymphoma
« Reply #30 on: November 25, 2013, 04:12:16 PM »
Glad to hear you are feeling a bit better this week Henry. Hope you are feeling up to a nice Thanksgiving surrounded by family, friends, and good food. :)

Not a day goes by that I don't think about you.

m.
31 years hiv+ (oct. 2013) with a curtsy.

Offline WillyWump

  • Member
  • Posts: 7,185
Re: My very own lymphoma
« Reply #31 on: November 25, 2013, 08:45:51 PM »
Love you BUNCHES Henry.

((( Extra big hugs ))

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline bocker3

  • Member
  • Posts: 3,390
  • You gotta enjoy life......
Re: My very own lymphoma
« Reply #32 on: November 25, 2013, 10:27:55 PM »
Henry,

Thinking about you every day.  So glad you are having a good week.  When a bad one comes along, just know that we are all here sending positive energy your way Thank goodness there are soooo many positives here!! (I read that humor is therapeutic -- even bad humor).

Sending hugs down to Texas.......   :-* :-*

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Online tednlou2

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Re: My very own lymphoma
« Reply #33 on: November 25, 2013, 11:02:24 PM »
Henry,

Glad to hear this week is starting better for you.  Even though we've never met personally, know that you're in my thoughts. 

Offline Theyer

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Re: My very own lymphoma
« Reply #34 on: November 28, 2013, 06:16:42 AM »
Oh Henry how great it is to read a Post from you and off course it is beautifully worded. You are right Henry ( about many things ) when you say many people have you in there daily thoughts and are wishing you well. I know its a fucking awful struggle at times Henry and am delighted that this week is somewhat better.

Keep on keeping on Henry and be sure that many are wishing you well.

Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline BT65

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Re: My very own lymphoma
« Reply #35 on: November 28, 2013, 12:10:22 PM »
Henry, I love to read your posts.  Whatever seems to be going on, you always have something sweet to say. 

I'm thinking of you, and wishing you the very best with this treatment.  {{Hugs from Hoosierville}}
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Basquo

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Re: My very own lymphoma
« Reply #36 on: November 29, 2013, 09:07:40 PM »
Henry I just read this last night and it's taken me until tonight to reply...yet I just don't know what to say that hasn't been said already. I think you have had a lot of challenges before and maybe they were just toughening you up for this one. You know I work not too far from you so if you need anything from the store or a light bulb changed or just want to talk, give me a call. Santi and I are thinking of you.

Hugs,
Creighton

Offline Lou-ah-vull

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Re: My very own lymphoma
« Reply #37 on: December 15, 2013, 11:42:57 PM »
Henry,

Just arrived in Las Vegas tonight for a little R & R before the madness of Christmas and New Years and had reason to remember our great time here a few AMGs ago.  I know you are facing difficult challenges and I wanted to remind you that you are always in my thoughts and prayers.  Hoping that things are already beginning to get better….

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline Jody

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Re: My very own lymphoma
« Reply #38 on: December 16, 2013, 09:36:00 PM »
Here's hoping this year's holiday season will bring good news for you dearest Henry and that a complete recovery is near for you.

Hugs,

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline skeebo1969

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Re: My very own lymphoma
« Reply #39 on: December 17, 2013, 09:45:43 AM »


   I've looked at this white box for 10 minutes now, and nothing seems appropriate.  I can only draw from the courage you show to say I am very concerned.  I'll keep you in both my thoughts and prayers.
I despise the song Love is in the Air, you should too.

Offline Buckmark

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Re: My very own lymphoma
« Reply #40 on: December 17, 2013, 10:16:54 AM »
Henry,

Just arrived in Las Vegas tonight for a little R & R before the madness of Christmas and New Years and had reason to remember our great time here a few AMGs ago.  I know you are facing difficult challenges and I wanted to remind you that you are always in my thoughts and prayers.  Hoping that things are already beginning to get better….

Gary

Hope you enjoy your R & R, Gary.  You deserve it! 

To give everyone a quick update, my week is starting out on the upswing, after a down week last week.  I'm anticipating the holidays will go well.  My next treatment is scheduled to start December 30th, and my sister Louise from New Jersey will be arriving then to help me through it.

My sincere thanks to everyone for their words and thoughts and prayers of support.

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Jeff G

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Re: My very own lymphoma
« Reply #41 on: December 17, 2013, 10:22:57 AM »
I'm so happy you are doing so well . We never know how tough we are until we experience something like this and you have been one tough guy through this . Whats next Henry, alligator or bear wrestling ? 

Online mitch777

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Re: My very own lymphoma
« Reply #42 on: December 17, 2013, 01:03:32 PM »
I'm thinking alligator wrestling. He has that cute boonie hat. ;)

Glad you are feeling better lately Henry and that the break between treatments came during the holidays.

xox,

m.
31 years hiv+ (oct. 2013) with a curtsy.

Offline thunter34

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Re: My very own lymphoma
« Reply #43 on: December 17, 2013, 01:09:05 PM »
Not a day goes by without thinking about you, Henrietta.  Thanks for the update, and have yourself a merry little Christmas.
AIDS isn't for sissies.

Offline BT65

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Re: My very own lymphoma
« Reply #44 on: December 17, 2013, 03:12:30 PM »
Henry, I hope you're able to relax, lay back, eat, and enjoy the holidays.  Still thinking about you, and wishing you the best!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Buckmark

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Re: My very own lymphoma
« Reply #45 on: December 17, 2013, 04:26:14 PM »
I'm so happy you are doing so well . We never know how tough we are until we experience something like this and you have been one tough guy through this . Whats next Henry, alligator or bear wrestling ?

How did you know?  My first step is to line up an internship with The Turtleman from "Call of the Wildman".    :o
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Jeff G

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Re: My very own lymphoma
« Reply #46 on: December 17, 2013, 04:37:48 PM »
How did you know?  My first step is to line up an internship with The Turtleman from "Call of the Wildman".    :o


I think he may want an internship with you my friend .

Offline bocker3

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Re: My very own lymphoma
« Reply #47 on: December 17, 2013, 07:37:03 PM »
Henry -

You continue to be in my thoughts.  I do hope you are able to enjoy the holidays with some relaxing and general "me" time......

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline weasel

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Re: My very own lymphoma
« Reply #48 on: December 18, 2013, 02:09:21 PM »


    Henry ,
                I hope your Holiday Season is good for you and the
      New Year brings you a cure for you cancer .

                                 Praying for the best ,
                                                                      Weasel
" Live and let Live "

Offline Growler

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Re: My very own lymphoma
« Reply #49 on: December 23, 2013, 02:53:55 AM »
Henry and James, keep up the good fight  ;)

Growler
“If loving someone is putting them in a straitjacket and kicking them down a flight of stairs, then yes, I have loved a few people.”

Offline ratcat

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Re: My very own lymphoma
« Reply #50 on: December 26, 2013, 11:26:02 AM »
Some tips for you...real ones.

1.  No sugar.  Don't touch it.  Cancer feeds on sugars and carbs so minimize those too.

2.  switch to an alkaline diet.  google it.

3.   Stick with the chemo/Western Medicine as well

4.    Beat it!!!!!! You can do it.

5.     When I thought i had cancer I even went as far as to add sodium bicarbonate(aluminum oxide free) to my drinking water.  What the hell, it can't hurt.


Offline nickinny

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Re: My very own lymphoma
« Reply #51 on: January 08, 2014, 09:13:10 AM »
Hi Henry.  I want to let you know that I also had Large B-Cell Non-Hodgkin's Lymphoma, stage-4.  It was in my liver, kidneys, spleen, stomach, and bone marrow.  It was no picnic getting chemo for five months and all the things that go along with it.   Most importantly I want you to know I am now cancer free.  I had my last chemo July 2013 and my last CAT scan on Dec 12, 2013. It showed no evidence of disease!  I know you can do this.  I found being positive in thought helped immensely.  I really do not know what else to say Henry.  I just want you to realize this can be beat, even when you feel your lowest.  I am usually a person who can talk circles around everyone else, I work as a mental health and addiction counselor, but here I cannot find the words.  Good luck and know I am thinking the best thoughts for you.
"this too shall pass"

Offline Buckmark

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Re: My very own lymphoma
« Reply #52 on: January 09, 2014, 09:38:00 AM »
Nick,

I'm so sorry to hear that you have had lymphoma, but so glad that you have beat it.  That's what I continue to hear from multiple sources:  this can be beat.  So I choose to believe it.  Some days it is more difficult than others, but then that is the nature of battling any disease.

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline wolfter

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Re: My very own lymphoma
« Reply #53 on: January 09, 2014, 09:46:04 AM »
You're definitely in my thoughts Henry. 

greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Lou-ah-vull

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Re: My very own lymphoma
« Reply #54 on: January 10, 2014, 02:07:59 AM »
Me too... I check almost every day just to see if there is any new news.  Hang in there...and we are hanging in there with you!

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline Buckmark

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Re: My very own lymphoma
« Reply #55 on: March 23, 2014, 12:30:42 PM »
I'm way overdue to provide an update on my lymphoma treatment.  About a week ago I finished my 6th week of chemotherapy.  That is the 6th and final treatment in this round.  My, how time flies. In addition to IV infusion of chemo over the week, it also concludes with a lumbar puncture and "intrathecal" delivery of prophylactic chemo to my spine / brain.  I am so tired of lumbar punctures, but at this point I know almost all of the hospital staff in the "short stay unit", not to mention my oncologist's staff.  Overwhelmingly, they are gems.

Along the way, I came down with blood clots in my left arm 2 weeks ago, requiring a trip to the ER and having to give myself injections of blood thinners until my oral warfarin kicked in.  Back in February I had a brush with PCP that required a bronchoscopy because it was difficult to confirm.  That's when we found out my CD4 count was just 104 (likely due to one of my chemo meds called "Rituxan"), and now I'm taking dapsone as a prophylactic for PCP.  Le sigh.

Now I get about 4 weeks of rest, followed by new CT and PET scans in early April. Either I'll be clear of cancer, or I'll need more treatment.  Obviously I'm hoping for the former, and it is certainly possible given my super-aggressive "R-EPOCH" treatment plan.  But it is not a given, and only time will tell.  In the meantime, I'm going to focus on getting some of my strength back, and also getting my appetite back.  While I'm not having nausea problems, there is little in the way of food that seems appetizing to me.  Any food that is heavy or fried seems particularly unappealing, so I won't be visiting Wumpy's nutrition thread.   ;)   Ditto for alcohol.

I want to thank everyone for their thoughts and prayers of support.  Whether we have been in communication, or you've just been thinking about me, it really helps to know that everyone is here.

Hugs,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline bocker3

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Re: My very own lymphoma
« Reply #56 on: March 23, 2014, 01:11:40 PM »
Thanks for the update Henry -- been wondering how things are going for you.

Will keep you in my thoughts -- and hoping for some good results in April!!

You know we are all here for you!

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Miss Philicia

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Re: My very own lymphoma
« Reply #57 on: March 23, 2014, 02:19:08 PM »
Thinking of you Henry. You've really been through the wringer with all of this.
"I’ve slept with enough men to know that I’m not gay"

Offline Jeff G

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Re: My very own lymphoma
« Reply #58 on: March 23, 2014, 02:29:02 PM »
Thanks Henry ... You have been a good friend to all that know you and you can count on our unconditional support just as you have shown us over the years  . Hugs for Henry .

Offline hope_for_a_cure

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Re: My very own lymphoma
« Reply #59 on: March 23, 2014, 02:46:30 PM »
Now I get about 4 weeks of rest, followed by new CT and PET scans in early April. Either I'll be clear of cancer, or I'll need more treatment.  Obviously I'm hoping for the former, and it is certainly possible given my super-aggressive "R-EPOCH" treatment plan.

I want to thank everyone for their thoughts and prayers of support.  Whether we have been in communication, or you've just been thinking about me, it really helps to know that everyone is here.

Hugs,

Henry

Henry,  The downtime from chemo is going to feel great.  I too am hoping your scan results in April show huge improvement.  Keeping you in my thoughts and sending you my best!

Edited to add:  I would submit that its probable your scan will come back NED.   

James
« Last Edit: March 23, 2014, 02:51:38 PM by hope_for_a_cure »

Offline Jody

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Re: My very own lymphoma
« Reply #60 on: March 23, 2014, 03:21:54 PM »
Henry, I hope that April will bring not only springtime but great health news for you to be healed from your ordeal.  May all good things come your way, you good man you!

Hugs, Jody :)
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline Theyer

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Re: My very own lymphoma
« Reply #61 on: March 23, 2014, 03:50:11 PM »
Henry I am sorry you are still on the treatment treadmill, though there is nothing quite like the last one in a series . Sounds like the rest period has been well worked for and how typical off sneaky PCP to drop by. You are often in my thoughts and I send as much comfort vibes as I can muster to you , so thanks for giving us this update.
All the Best
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Dachshund

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Re: My very own lymphoma
« Reply #62 on: March 23, 2014, 04:11:22 PM »
Wishing you the best Henry.

Online mitch777

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Re: My very own lymphoma
« Reply #63 on: March 23, 2014, 05:20:57 PM »
You have always remained in my thoughts Henry. Thanks so much for the update.

I hope you gain your strength and appetite back now that you have finished with round 6 and that April gives you the best of news!

I can't even begin to imagine what you have been through but I feel the tide turning.

A big long tight (((hug))).
Mark
31 years hiv+ (oct. 2013) with a curtsy.

Offline WillyWump

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Re: My very own lymphoma
« Reply #64 on: March 23, 2014, 08:16:12 PM »
Keep up the good fight Henry! I'm no soothsayer or fortune teller, but I have this feeling that you'll be rewarded with good news in April. I'm always praying and sending good thoughts for you.

And dont worry about the fried foods, I'll take care of eating those up while you are out of commission, but I'll be looking forward to a trip to Catfish Parlour once you are better :-*

Hugs and much much love,

-Guillermo
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Lou-ah-vull

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Re: My very own lymphoma
« Reply #65 on: March 23, 2014, 09:28:10 PM »
Henry,

Add me to this list of voices who are happy to hear from you again.  I have made it my personal project since last fall to pray for you daily and I have no intention of stopping!  I have always been convinced of the power of prayer (it's that "network of souls" I love to quote every year in the Memorial service!) 

Grateful that you have updated us on your progress and grateful that you get a much needed "treatment break."  Prayers for the best news possible in April.

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Online tednlou2

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Re: My very own lymphoma
« Reply #66 on: March 24, 2014, 12:23:41 AM »
Henry,

Wishing all the best for great news next month.  It is great hearing from you.  Even though many of us have yet to meet, I know we think about and pull for each other, as if we have. 

Take care and hoping you get energy and appetite back, during the month of rest.

Ted

Offline BT65

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Re: My very own lymphoma
« Reply #67 on: March 24, 2014, 06:17:59 PM »
Wow Henry, you sure are going through a lot of shit.  You're so courageous, I'm in awe of you.  You're one amazing man.

I will definitely continue to keep you in my thoughts, and look forward to good news in April!

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline buginme2

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Re: My very own lymphoma
« Reply #68 on: March 24, 2014, 07:59:17 PM »
You have been through so much, I can't imagine.  You are one tough cookie.  Hang in there.  I'm rooting for you.  Get well and get some rest. 

Offline weasel

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Re: My very own lymphoma
« Reply #69 on: March 26, 2014, 09:40:36 AM »

     Sounds good Henry . I'm still praying for good health for you   :)

      Thanks  for posting the up-date .   Really is so much going on
    in your life !  Waiting for the  ALL CLEAR !!!!!


                                  A big HUG from   Carl
" Live and let Live "

Offline pozniceguy

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Re: My very own lymphoma
« Reply #70 on: March 27, 2014, 12:50:45 PM »
Great news  Henry...glad  the  treatment  break  is starting now....spring  has  sprung  just for  you....enjoy the  break...all the  positive thoughts and love  will  be  flooding in  .... look forward to full  recovery....

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline Buckmark

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Re: My very own lymphoma
« Reply #71 on: May 07, 2014, 04:14:49 PM »
I got the results of my most recent PET scan today:  negative.  No signs of cancer anywhere.  I'm officially in remission.  I'm overwhelmed, and I'm still absorbing the good news.  Thankfully my 2 sisters and brother-in-law are here to celebrate with me.  One sister has been here since last week.  My other sister and brother-in-law arrived today at 1PM -- I was able to give them the good news when I picked them up at the airport.  Now we can really celebrate the news few days.

No more chemo!  I will have follow-ups with the doc every 3 months.   And my doc wants me to consult with a radiation oncologist to see if I may need prophylactic radiation.  Given that my tumor initially appeared on my chin, it may be more likely that Birkett's lymphoma could recur in my brain or spine, so zapping it with radiation may be called for.  Radiation wouldn't exactly be a picnic, but simpler and shorter than my chemo regimen.  I also need a CT scan to find out why my lower left abdomen is still somewhat painful -- but we know it isn't cancer.  I would have had that CT scan already if my insurance company hadn't balked at having both PET and CT scans at the conclusion of chemo (cheap bastards).

Things are looking up today.  I feel like I've had a huge weight lifted off my shoulder, even if I do have a little more treatment ahead of me.

My thanks to everyone who has supported me and prayed for me.  I'll provide another update in a few weeks as I learn more.

Cheers,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Theyer

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Re: My very own lymphoma
« Reply #72 on: May 07, 2014, 04:34:54 PM »
Henry , welcome to the club , your delight and relief travels. I have followed your journey and this is the best bit.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline WillyWump

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Re: My very own lymphoma
« Reply #73 on: May 07, 2014, 06:48:09 PM »
FANTASTIC HENRY!!!!!! ;D

Im am so relieved and happy for you! Such such good news!

Now let's go get some all you can eat catfish dammit!!

Big ol hugs to you!

_will
« Last Edit: May 07, 2014, 06:50:58 PM by WillyWump »
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Jeff G

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Re: My very own lymphoma
« Reply #74 on: May 07, 2014, 06:53:38 PM »
This news made my week ... I want to feed you and Willy catfish to celebrate so yall come on . 

Offline Jody

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Re: My very own lymphoma
« Reply #75 on: May 07, 2014, 07:59:55 PM »
Thanks for sharing the great news Henry, you deserve the very best.  I was just thinking about you this weekend as it had been over a month since you last posted I believe.  Enjoy your celebration and we will all cheer you from the four corners of the globe good man!  :) :) :)

Jody :) :) :)
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Online mitch777

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Re: My very own lymphoma
« Reply #76 on: May 07, 2014, 08:30:42 PM »
That just made my day.

(((Mark to Henry)))

Onward!  :)

Actually much more than made my day.
31 years hiv+ (oct. 2013) with a curtsy.

Offline Lou-ah-vull

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Re: My very own lymphoma
« Reply #77 on: May 07, 2014, 11:21:21 PM »
Henry,

I am ELATED to see this news.  I have prayed for your recovery and your strength daily since this whole odyssey began... Some of that connection happened when I had that powerful moment at the Western Wall in Jerusalem last November.  I check daily to see if there are updates in this thread.

You have shown great character and courage in sharing this story with us...it is incredibly inspiring.  And this good fortune could not possibly happen to a better guy!

I leave for a two week cruise up and down the Alaskan coast on Friday.  I will be sure to toast your good health and your great news when we sail from Vancouver on Sunday. 

Congratulations and continued good news.

Your friend and prayer partner,
Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline britchick

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Re: My very own lymphoma
« Reply #78 on: May 08, 2014, 01:10:39 AM »
Thats fantastic news! :)
Have a great celebration with your family!!!!!!!!!!

britchickxx

Offline BT65

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Re: My very own lymphoma
« Reply #79 on: May 08, 2014, 02:44:23 AM »
Great, Henry!  I'm so excited for you!  If I were there, I would definitely go out with you and Will for catfish (or I would meet you at Jeff's).  Please take care. 

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Ann

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Re: My very own lymphoma
« Reply #80 on: May 08, 2014, 05:51:27 AM »
What a welcome relief! I'm grinning ear to ear and doing a happy dance as I write this. Congrats Henry!

Hugs and smoochies,
Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline zach

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Re: My very own lymphoma
« Reply #81 on: May 08, 2014, 07:43:16 AM »
outstanding henry! good job man, screw cancer
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Dachshund

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Re: My very own lymphoma
« Reply #82 on: May 08, 2014, 08:36:10 AM »
Just fantastic news Henry!

Offline bocker3

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Re: My very own lymphoma
« Reply #83 on: May 08, 2014, 10:29:11 AM »
Henry-

The best news of the week, by far!!!  Celebrate, dance, sing, jump up and down, do whatever the hell you feel like.

I am so happy for you - sending a virtual hug until I next see you in person, when is will squeeze the hell out of you.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline J.R.E.

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Re: My very own lymphoma
« Reply #84 on: May 08, 2014, 11:53:23 AM »


This is GREAT news Henry ! We're wishing you the very best !!

Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline weasel

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Re: My very own lymphoma
« Reply #85 on: May 08, 2014, 01:10:29 PM »

    That is wonderful news Henry !!!
    I am thrilled for you .   

                                                           Carl 
" Live and let Live "

Online tednlou2

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Re: My very own lymphoma
« Reply #86 on: May 08, 2014, 10:42:08 PM »
I am so glad you got this news.  As I said before, we may not all have met, talked on the phone, etc, but we worry and pull for each other as if we have known each other closely.  I am so happy you got this great news.  Continuing to send positive energy that this will be completely in the rear-view mirror. 

Offline hope_for_a_cure

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Re: My very own lymphoma
« Reply #87 on: May 09, 2014, 09:18:21 AM »
This is the best news I have heard in a LONG time!  Isn't it a great feeling to get good results from a scan?  Hard to put into words but I know exactly how you feel.  One more treatment left for me and I will burn my chemo shirt! 

Best to you Henry! 

Edited to add:  Keep those chakras clear!  lol
« Last Edit: May 09, 2014, 09:21:46 AM by hope_for_a_cure »

Offline Buckmark

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Re: My very own lymphoma
« Reply #88 on: May 09, 2014, 11:08:04 AM »
One more treatment left for me and I will burn my chemo shirt! 

Great idea!  I need to get rid of the button-down shirts I typically wore on chemo weeks.  Too many bad memories.  The surgeon who implanted my port said she would give it back to me after I get it removed, as many of her patients have "port smashing" parties.

Quote
Edited to add:  Keep those chakras clear!  lol

Meditation and visualization has definitely helped me through all this, and will continue to do so.  That, and the support of all my friends and family.


"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline OneTampa

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Re: My very own lymphoma
« Reply #89 on: May 09, 2014, 01:05:06 PM »
Henry,

I am so happy for you!

Grinning and showing my remaining 783 teeth.  :D ;D
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline thunter34

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Re: My very own lymphoma
« Reply #90 on: May 09, 2014, 05:47:02 PM »
I'm two days late to this party, but AAAAAAAAAAAAAAAAHHHHHHH  !!!!

You go, Henrietta!
AIDS isn't for sissies.

Offline Buckmark

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Re: My very own lymphoma
« Reply #91 on: May 09, 2014, 06:06:44 PM »
AAAAAAAAAAAAAAAAHHHHHHH  !!!!

That about sums up how I feel right now.  I know I still have follow-up work to do, and will need to be vigilant.  But, as this has taught me, one day at a time…

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Fisher

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Re: My very own lymphoma
« Reply #92 on: May 09, 2014, 10:30:28 PM »
Yes!  AAAaaaaaaaaaahhhhhhhhhh! Happy for you Pal
- fisher
07/14 CD 391 %20 VL UD
04/14 CD 486 %23 VL <20
11/13 CD 351 %21  VL <20
10/13 CD 390 %16  VL <20
06/13 CD 315 %19  VL  22
02/13 CD 396 %14  VL <20
12/12 CD 392 %13  VL 320
11/12 CD 428 %13  VL 1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 – Western Blot
05/83 – 04/98 - Monogamous Partner Being Negative
ARS - Los Angeles Dec '82

Offline phildinftlaudy

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Re: My very own lymphoma
« Reply #93 on: May 10, 2014, 07:57:13 AM »
I am just elated -
Such great news Henry -
I also am grinning ear to ear...
Your strength, courage, and fortitude during all of this has truly been an inspiration.

Many, many more years of good health...
Keeping you in my continued thoughts and prayers.

-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Buckmark

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Re: My very own lymphoma
« Reply #94 on: May 13, 2014, 08:14:15 PM »
I met with the radiation oncologist today.  The bottom line is that she believes I should go through a course of "preventive" radiation to zap the lymph nodes that were involved in my lymphoma.  When I asked why, she said is was pretty much standard practice for HIV-related lymphomas.  She couldn't immediately point me to any studies which indicated this.  I could only find some anecdotal evidence when I did a google search. 

Phooey.  I don't really want to go through radiation treatments.  On the other hand, I really don't want a recurrence of lymphoma.  The radiation regimen is a relatively short duration:  17 treatments, or just over 3 weeks.  And, according to the doctor, it's a relatively low dose of radiation.  I'll probably get a sore throat and dry mouth from radiation to the lymph node under my chin, and some nausea / diarrhea from radiation to the lymph node in my abdomen.  The doc thinks I'll get through it just fine, but she probably says that to everyone.  Though from what I read, the side-effects will likely show up when I'm getting closer to finishing up my treatments.

I need to call back the doc tomorrow, and ask for some reference / study information on radiation for HIV-related lymphomas.  I want to be sure this is really necessary.

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Jeff G

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Re: My very own lymphoma
« Reply #95 on: May 13, 2014, 08:28:36 PM »
I thank you for sharing . My step dad just went through a month of radiation for prostate cancer and they gave him the same possible side effects but he didn't have any thankfully .

I'm happy that you are doing everything you can to stay healthy even when its hard, I have never once doubted you would fight with everything you have and you have done just that .   

Offline pozniceguy

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Re: My very own lymphoma
« Reply #96 on: May 14, 2014, 12:19:26 AM »
time  for the  Happy  Dance  there  Henry...... take all the  joy  you  squeeze out of it... if  the  radiation will be  an  "extra"  do it..... but keep  the  happy  thoughts.... so  glad  you  have this  huge  relief

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Online tednlou2

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Re: My very own lymphoma
« Reply #97 on: May 14, 2014, 12:42:52 AM »
I met with the radiation oncologist today.  The bottom line is that she believes I should go through a course of "preventive" radiation to zap the lymph nodes that were involved in my lymphoma.  When I asked why, she said is was pretty much standard practice for HIV-related lymphomas.  She couldn't immediately point me to any studies which indicated this.  I could only find some anecdotal evidence when I did a google search. 

Phooey.  I don't really want to go through radiation treatments.  On the other hand, I really don't want a recurrence of lymphoma.  The radiation regimen is a relatively short duration:  17 treatments, or just over 3 weeks.  And, according to the doctor, it's a relatively low dose of radiation.  I'll probably get a sore throat and dry mouth from radiation to the lymph node under my chin, and some nausea / diarrhea from radiation to the lymph node in my abdomen.  The doc thinks I'll get through it just fine, but she probably says that to everyone.  Though from what I read, the side-effects will likely show up when I'm getting closer to finishing up my treatments.

I need to call back the doc tomorrow, and ask for some reference / study information on radiation for HIV-related lymphomas.  I want to be sure this is really necessary.



We are always told to get a second opinion.  She may be right, but I would want more info, too.  I suppose oncologists in cities like San Fran, L.A., and NYC would have more experience with poz patients and lymphoma.  I would think another reputable doc in this area could be contacted for consult, without having to actually fly and see them. 

Whatever happens, I wish you continued success.  If you have to do the radiation, I hope you have very minimal side-effects. 

Offline Buckmark

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Re: My very own lymphoma
« Reply #98 on: May 27, 2014, 02:16:29 PM »
Radiation.  This past week or two I've done a lot of investigation into radiation treatments for my type of lymphoma, and it is really a mixed bag.  Doctors seems very split on on its use to prevent recurrence.  I called my doctor and asked why she thought radiation would be beneficial in my case, as opposed to cases where radiation is not indicated.  Her response was that since I had "bulky nodal" non-Hodgkins disease (i.e. rather enlarged tumors in my lymph nodes), radiation would be beneficial to "mop up" any remaining isolated cancer cells.  I have found references to studies which support that, and others that don't.  Secondarily, my doc believes HIV puts me in a high risk category for recurrence, also adding to her radiation recommendation.

I've been perusing several discussion forums for people with lymphoma, and their experiences are just as mixed.  There are those for whom chemo alone works and prevents recurrence, those who are successful with chemo and radiation, and those who have recurrence despite both treatments.  There's really no way to predict who falls in which category, and of course no guarantee of preventing recurrence.

I do have an appointment later this week with another oncologist to get a second opinion (what an ordeal).  In the meantime, I've gone ahead with the CT "simulation" scans needed to prepare my course of radiation.  I don't have to go through with it,  yet somehow I think I'll be kicking myself if I don't.

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline zach

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Re: My very own lymphoma
« Reply #99 on: May 27, 2014, 02:21:41 PM »
thats some heavy shit you're facing. sounds like its a total judgement call with the mixed results/reviews

whatever course you choose, best of luck, cancer sucks
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

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Re: My very own lymphoma
« Reply #100 on: May 27, 2014, 02:42:11 PM »
It sounds like you already are leaning towards doing the radiation treatments but need to make peace with the decision one way or the other . I can't help and be selfish because I care about you  ... but its your body and your choice and I resist the urge to say much else other than you have my unconditional support . 

You are helping others by sharing your story along the way

Online mitch777

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Re: My very own lymphoma
« Reply #101 on: May 28, 2014, 05:30:24 PM »
Sometimes living in a black and white world is comforting. Sorry you are dealing with shades of gray Henry.

hugs.
31 years hiv+ (oct. 2013) with a curtsy.

Offline bocker3

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Re: My very own lymphoma
« Reply #102 on: May 28, 2014, 05:38:56 PM »
Henry,

Sorry about this latest struggle.  Sounds like there isn't a real right or wrong choice.  You need to do what you are comfortable with and it does sound like you are gathering all the right info to make that informed choice.

I don't have to go through with it,  yet somehow I think I'll be kicking myself if I don't.

You didn't ask for an opinion, so I'll refrain, but I can't help think that this last sentence of yours contains your answer! 

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Buckmark

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Re: My very own lymphoma
« Reply #103 on: June 02, 2014, 10:15:19 AM »
Well, I suppose that opinions, even second opinions, are like assholes:  everyone has one.  I saw a radiation oncologist for a second opinion last Friday.  He was sooooo noncommittal.  I think that some professionals are hesitant to contradict their colleagues.  His view is that, for my case, he would "offer me" radiation as there are "potential" benefits, but there are also risks and that I'd need to make a careful decision.  Duh.  It was surprisingly difficult to get an opinion out of this guy.  I think it reflects the conflicting view of radiation for lymphoma.

So here's what I know:
  • The use of radiation for treating lymphoma after a clear PET scan has conflicting views.
  • There are a couple of studies that show benefit (preventing recurrence) from undergoing radiation, for my type of lymphoma and at my stage.
  • From looking at some well-used online forums for cancer patients, people with lymphoma struggle with this decision all the time.  Misery loves company.

Bottom line:  I start radiation this Wednesday.  I think there is benefit.  I know there are some risks, and there are no guarantees.

Please remind me of this decision in a few weeks when I am complaining about side-effects such as sun-burned skin, a raging sore throat, or nausea or diarrhea.  These should be short-lived since I'm only going through 17 treatments.  My last treatment is June 27th (the first treatment is just a practice run -- no real radiation).  The worst long-term side-effect may be that my lower salivary glands may be destroyed,  I'll be swigging Biotene mouthwash currently, and my lower teeth will deteriorate. 

The tough part of this decision is that I'm sorta starting to feeling like normal, except for peripheral neuropathy, and some unspecified abdominal and hip pain for which a CT scanned showed no problems.  My energy level has really started to spring back.  Now I'm going to subject myself to radiation, but I don't want to slide backwards.

I keep repeating to myself:  it's just 17 treatments, just 17 treatments.  The cool part is that my sisters will be coming to visit me again.  :)

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Jeff G

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Re: My very own lymphoma
« Reply #104 on: June 02, 2014, 10:26:40 AM »
Henry ... good for you . I am a selfish man and I personally am happy to hear that you are going the extra mile to assure this is behind you . Its hard to give a polite I support you no matter what statement for me on this subject so forgive me for being very happy and relieved that you are going through with this . Hugs .

Offline wolfter

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Re: My very own lymphoma
« Reply #105 on: June 02, 2014, 10:46:41 AM »
It appears you've done extensive research before making the best possible decision.  When there is conflicting data, all we can do is decide what's best for each of us personally. 

Sending huge ole positive thoughts and wishes your way.  Take care of yourself and kick this in the ass.

hugs
greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online mitch777

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Re: My very own lymphoma
« Reply #106 on: June 02, 2014, 12:54:44 PM »
Wishing you my best Henry. Hopefully the treatment will go smooth without any long-term effects or even short-term for that matter. A few more weeks, hang in.

More hugs,
m.
31 years hiv+ (oct. 2013) with a curtsy.

Online tednlou2

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Re: My very own lymphoma
« Reply #107 on: June 02, 2014, 04:51:09 PM »
Wishing you all the best for smooth sailing.   

Offline bocker3

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Re: My very own lymphoma
« Reply #108 on: June 02, 2014, 06:32:08 PM »
Henry -

So glad that you came to a decision -- often this is the most harrowing part.
Here is hoping that your radiation treatments go as smoothly as my dad's did -- he really did tolerate them very well.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline zach

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Re: My very own lymphoma
« Reply #109 on: June 02, 2014, 10:28:37 PM »
you got this, dangling
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline thunter34

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Re: My very own lymphoma
« Reply #110 on: June 02, 2014, 11:03:49 PM »
can't think of anything to say that you don't already know.
AIDS isn't for sissies.

Offline Lou-ah-vull

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Re: My very own lymphoma
« Reply #111 on: June 03, 2014, 04:45:46 PM »
I'll add my two cents... confirmation!  You have studied and pondered the risks and benefits very carefully and did not get yourself persuaded only by the medical advice.  This means YOU have made the decision (and if complaining about the side effects later help you get through the ordeal, complain!  You have earned the right.) 

Much more important is the fact that you are extensively involved in this decision and in your own medical care.  This, more than anything, will be a help in the weeks ahead.

You remain on my daily prayer list for strength and perseverance.  You are most likely unaware of it, but you are an inspiration and model to others who are struggling with similar journeys.  Thank you for your courage,

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline Theyer

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Re: My very own lymphoma
« Reply #112 on: June 04, 2014, 01:45:50 PM »
Henry,

As far as I am aware there are no reasons why you cannot stop radiation treatment at any time so if you think the side affects tip the balance you still have options.

Completely understand your Post , enjoy the comfort that sisters bring ,
love
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline weasel

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Re: My very own lymphoma
« Reply #113 on: June 08, 2014, 09:57:50 PM »
can't think of anything to say that you don't already know.

   Me too !

   I pray to GOD you will be OK  ;)

                                                          Carl
" Live and let Live "

Offline Matty the Damned

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Re: My very own lymphoma
« Reply #114 on: June 09, 2014, 09:04:54 AM »
Fuck Henry.  :(

MtD

Offline Buckmark

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Re: My very own lymphoma
« Reply #115 on: June 10, 2014, 10:39:59 AM »
I have been through 3 radiation sessions so far -- 14 more to go.  Yes, I'm counting.  It's an odd experience, laying there for about 20 minutes while a large machine circles around you, blasting you with X-rays.   You don't feel a thing, though my vivid imagination sometimes does.  You just lay there while this large machine rotates around you, making a high-pitched noise for about 10 seconds each time it delivers radiation.  After each person is done, we just scurry out the door.  It's rather like an assembly line.

I made my doctor show me my "treatment plan" showing exactly where the radiation will be delivered.  She was more than happy to explain, and stayed with me past closing time last Thursday to do so.  I'm amazed at how precise it is.  It looks like a 3D topographical map, showing the lines of 100%, 97%, 80%, and 30% coverage over an irregularly shaped polygon based on my original tumors.  I thought they would just be blasting an area -- I have images of a "ray gun" from an 1950s B movie.

So far, the only side-effects is some dry mouth, which is due to my lower parotid (salivary) glands being nuked.  And some fatigue, which is expected because my body is trying hard to repair the tissue.  No irritation or burning yet -- I bought this lovely skin cream that everyone on my lymphoma cancer forums swears by.  It is supposed to prevent skin problems from radiation, but if I do get any kind of burning, at least my skin will be soft and fragrant.

In the TMI department, I've had horrible constipation -- exactly the opposite of what my doctor told me to expect.  Probably because I am so uptight.  If Miralax doesn't work soon, I see an enema in my future.   ::)

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline WillyWump

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Re: My very own lymphoma
« Reply #116 on: June 10, 2014, 10:49:35 AM »
.  I'm amazed at how precise it is.  It looks like a 3D topographical map, showing the lines of 100%, 97%, 80%, and 30% coverage over an irregularly shaped polygon based on my original tumors.  I thought they would just be blasting an area --


Very interesting, and great doctor. Yes I had the 1950's ray gun image as well.

Keep on keeping on Henry! You can do this! I'm behind you and sending you prayers and thoughts

 :-*
Will

POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline zach

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Re: My very own lymphoma
« Reply #117 on: June 10, 2014, 03:31:02 PM »
you're doing good man

if you could just shit and drool, you'd be great!

good luck
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Theyer

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Re: My very own lymphoma
« Reply #118 on: June 10, 2014, 04:09:35 PM »
It sounds a breeze to Chemo Henry , I think Zach covered the situation , leaving little to be usefully added.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Jeff G

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Re: My very own lymphoma
« Reply #119 on: June 10, 2014, 05:56:13 PM »
Zack did nail the perfect get well post of the day me thinks .

Offline Fisher

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Re: My very own lymphoma
« Reply #120 on: June 11, 2014, 09:01:48 PM »
My thoughts are with you, Pal.
- fisher
07/14 CD 391 %20 VL UD
04/14 CD 486 %23 VL <20
11/13 CD 351 %21  VL <20
10/13 CD 390 %16  VL <20
06/13 CD 315 %19  VL  22
02/13 CD 396 %14  VL <20
12/12 CD 392 %13  VL 320
11/12 CD 428 %13  VL 1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 – Western Blot
05/83 – 04/98 - Monogamous Partner Being Negative
ARS - Los Angeles Dec '82

Offline weasel

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Re: My very own lymphoma
« Reply #121 on: June 16, 2014, 08:08:49 AM »
you're doing good man

if you could just shit and drool, you'd be great!

good luck

     I agree !        :)

                                                  Carl   
" Live and let Live "

Offline nickinny

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Re: My very own lymphoma
« Reply #122 on: June 16, 2014, 08:41:02 AM »
OH Henry!!!  I am so terrible at following up on forums.  Great news, being in remission.  I am still cancer free myself.  I had R-EPOCH too!  I wore a bag with a pump and went in five days a week to have it refilled with all the cancer killing drugs.  The Rituxan was lowered as it was causing probs.  I have peripheral neuropathy in my feet because of it, it's annoying as hell.  I am taking Lyrica for it, supposed to stimulate damaged nerves.  As for the constipation, how annoying is that?, you need yogurt, fiber out ur ass, and Senekot!  If that doesn't work take some Ex-Lax.  I had the Miralax but never needed to use it.  I tried to be pro-active with my pooping schedule!! Enough of crap talk.  I also had some radiation.  That was nuttin' compared to chemo.  I would take radiation any day.  Keep moving along, remain positive, and this will be over soon my friend.  Please message me if you need to talk or have any questions.  I am not a stalker, gossip :-X, in need of money, or crazy!  I also have a degree in human development along with a degree in counseling.  These come in very handy when someone needs to talk.  I talk to and counsel myself all the time!! LOLOL......  ;)
"this too shall pass"

Offline Theyer

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Re: My very own lymphoma
« Reply #123 on: June 16, 2014, 09:29:11 AM »
Zack did nail the perfect get well post of the day me thinks .

How his gifts have escaped the talent spotters at Halmark is a ? bordering on a investigation into there employment demographics , for heck,s sake he pick,s mushrooms gardens  is in touch with nature all on a solid knowledge off Western pharmaceuticals. How has he not got a Page in some ritzy ditsy mag is a disgrace
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline drewm

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Re: My very own lymphoma
« Reply #124 on: June 16, 2014, 09:41:25 AM »
Henry,

I just found your posts on this. You are in my thoughts and prayers.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline thunter34

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Re: My very own lymphoma
« Reply #125 on: June 16, 2014, 12:59:49 PM »
hang in there, Henrietta!
AIDS isn't for sissies.

Offline drewm

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Re: My very own lymphoma
« Reply #126 on: June 16, 2014, 05:33:42 PM »
Fuck Henry.  :(

MtD

That might help with the constipation Matilda! ;)
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Buckmark

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Re: My very own lymphoma
« Reply #127 on: June 27, 2014, 10:00:08 PM »
I am pleased to announced that I have completed my last radiation treatment today.  I can now look forward 7-10 days until my side-effects begin to wane.  The worst is that I've lost my sense of taste.  Just about everything tastes either bitter, or salty.  The inside of my mouth is terribly dry and irritated, so I can only eat soft foods that are very moist.  I also have to constantly be drinking water, and gargling with either salt water or Biotene.  The sides of my neck looks like it has a terrible sunburn (although it doesn't hurt much).  And my beard has fallen out in the areas hit by radiation -- the outline is more precise than I would have imagined.  I have minor "radiation enteritis" (nausea and some diarrhea) because they also irradiated a lymph node in my abdomen.  Oh, and the fatigue from radiation is a bitch.

The good news is that my doc expects all these side-effects to clear up eventually, possibly in 4-6 weeks, and possibly more for the dry mouth and fatigue.

Monday I have a follow-up with my oncologists's nurse practitioner -- hopefully just perfunctory, and to get lab results.  Tuesday is a visit with a gastroenterologist, to try to identify some undetermined pain I have in my lower abdomen despite clear PET and CT scans.  My guess is that they will find nothing (but I'll bet they will schedule me for a colonoscopy).  Tuesday afternoon is physical therapy.  Wednesday morning is an MRI of my brain that my neurologist would like to have as a baseline (but which I am nonetheless worried about because I'm afraid it will uncover something else that is wrong).  Le sigh.

Oh, on Thursday I saw my psychiatrist, and we decided on having me try klonopin for some anxiety / social avoidance issues I've been having.  So I'm now officially a Klonnie Kween!

Many thanks to everyone for your continue support, thoughts, and prayers. 

Henry 
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Jeff G

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Re: My very own lymphoma
« Reply #128 on: June 27, 2014, 10:05:02 PM »
I am so glad you are in the light at the end of the tunnel Henry .... after what you have been through I would think you would be the Klonnie emperor or king by now .

Offline drewm

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Re: My very own lymphoma
« Reply #129 on: June 27, 2014, 11:24:44 PM »
So glad to hear your news and I agree with Jeff about the light at the end of the tunnel. BIG HUGS HENRY!!!
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Online tednlou2

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Re: My very own lymphoma
« Reply #130 on: June 27, 2014, 11:51:20 PM »
Henry,

So glad to hear the radiation is done and you haven't turned into the Hulk yet.  Glad to also hear while you have some side-effects, they aren't severe.  Wishing you all the best that this will now be behind you for good and you'll have decades more of good health.

Ted

Offline Lou-ah-vull

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Re: My very own lymphoma
« Reply #131 on: June 28, 2014, 12:27:23 AM »
The medication is appropriate and your willingness to get help is to be commended.  You have really been through a wrenching experience.  Looking forward to hear you emerging on the sunnier side of the street.

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline WillyWump

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Re: My very own lymphoma
« Reply #132 on: June 29, 2014, 12:40:52 PM »
Glad to hear you are done with radiation, now to get rid of those horrible side effects. You really do deserve a medal for all you have been through and the grace at which you've handled it. I admire your strength.

Hoping the Klonopin helps :) and you are right at home here with all the other "Klonnie Kweens"  :P  Although *sigh* I'm just a Tramadol pain-killer peon.

Hugs and kisses!

POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Online mitch777

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Re: My very own lymphoma
« Reply #133 on: June 29, 2014, 01:09:42 PM »
Henry,

So happy to hear your radiation treatments are done with! Yay! The side effects. Ugh.
 
Wishing you my best with the upcoming appointments and looking forward to nothing but good news down the road. You have had enough for awhile!!

Hugs,
Mark
31 years hiv+ (oct. 2013) with a curtsy.

Offline Theyer

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Re: My very own lymphoma
« Reply #134 on: June 29, 2014, 04:13:35 PM »
Good for you Henry , and I am sure your taste will remain excellent. Has the doc,s given you any saliva producing stuff can be helpful with what you are describing.

Hope you get some quiet time soon.

All the Best
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Buckmark

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Re: My very own lymphoma
« Reply #135 on: June 29, 2014, 05:17:04 PM »
Good for you Henry , and I am sure your taste will remain excellent. Has the doc,s given you any saliva producing stuff can be helpful with what you are describing.

I asked my doctor about pilocarpine, but she didn't think it was terribly effective (which is substantiated by some studies).  And she doesn't like the side-effects of the drug.  Plus, it takes 1-2 week for it to even start working.  Honestly, I don't need any more side-effects, as I'm struggling with some Lyrica side-effects right now (headache, abdominal pain, sensation of spinning) which have caused me to stop taking it until I can talk to my neuro.  I seem to be doing reasonably well during the day at keeping my mouth moist during the day since my upper salivary glands are in fine shape.  And I'm using Biotene mouthwash and spray like crazy -- I have a small spray bottle with me at all times, including my night stand.

It's the altered taste of food that is driving me crazy right now.   Eating has no enjoyment and seems pointless, except for the fact that I need nutrition.   :-[

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Miss Philicia

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Re: My very own lymphoma
« Reply #136 on: June 29, 2014, 05:34:49 PM »
Can you masturbate and/or have you gained weight yet?

I've had dry mouth for years and been using Biotene -- I recently read that (some forms of) neuropathy can contribute to this.
"I’ve slept with enough men to know that I’m not gay"

Offline Theyer

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Re: My very own lymphoma
« Reply #137 on: June 29, 2014, 07:18:17 PM »
I asked my doctor about pilocarpine, but she didn't think it was terribly effective (which is substantiated by some studies).  And she doesn't like the side-effects of the drug.  Plus, it takes 1-2 week for it to even start working.  Honestly, I don't need any more side-effects, as I'm struggling with some Lyrica side-effects right now (headache, abdominal pain, sensation of spinning) which have caused me to stop taking it until I can talk to my neuro.  I seem to be doing reasonably well during the day at keeping my mouth moist during the day since my upper salivary glands are in fine shape.  And I'm using Biotene mouthwash and spray like crazy -- I have a small spray bottle with me at all times, including my night stand.

It's the altered taste of food that is driving me crazy right now.   Eating has no enjoyment and seems pointless, except for the fact that I need nutrition.   :-[


Sounds like you have it covered Henry.

Eventually the things that are driving you crazy will diminish and go . It really is the home straight my dear chap , Treatment Hangover Hell will be History soon.

Do you use calorie rich shakes ,  Calorie/ vitamin powder / cream / full fat yogurt / Banana / Berries /  Honey or and Maple syp / FF Milk / Ice cream being my cannot eat must eat Fab Fave.

All the Best Henry
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Buckmark

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Re: My very own lymphoma
« Reply #138 on: August 24, 2014, 11:54:21 AM »
It's been a while since I posted, so it's time for an update.  I'm so glad radiation is over, and that my taste buds are back in shape.  During July, I complained to my neurologist, who is treating me for neuropathy, that I was having some strange headaches.  She did a brain MRI, which turned out normal (and no differences from my previous MRI last October).  We then decided to do another lumbar puncture (an abundance of caution) and unfortunately found "abnormal" cells in my cerebrospinal fluid (CSF).  Fuck.

I took these findings and barged my way into my oncologist's office.  She ordered new CT and PET scans (both of which seemed to be clear), so she wanted me to see a lymphoma specialist at MD Anderson in Houston.  In less than a week, MDA had obtained samples of my biopsy from last autumn, and told me that I had been diagnosed with the wrong kind of lymphoma -- I don't have Burkitts, I have diffuse large B-cell lymphoma (DLBCL), and a special kind of DLBCL called "double hit".  The good news is that I got the right chemo, but for the wrong reason.  The bad news is that my doctor at MDA thought I should have had a stem cell transplant immediately after my last chemo.  Phooey.

So I spent just under a week at MDA in Houston, meeting with doctors and getting more tests:  another lumbar puncture (oy! -- my MDA doc didn't feel the one from my neurologist was very conclusive), and a bone marrow biopsy (no sedation -- ouch!).  Basically we have to find out where the lymphoma is hiding, if anywhere.  I go back to MDA this Thursday 28 August to get all the results.  My doc at MDA is super-knowledgeable, and I have lots of confidence in him.  To boot, I'm sure he is gay. ;)

Based on how tired I am feeling, there is definitely something going on that isn't right.  I'm a bit anxious to find out what it is.  I suppose knowledge is power -- but thank God for Klonopin (and hydrocodone).

Prayers and other good thoughts would be most welcome.

Hugs,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline bocker3

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Re: My very own lymphoma
« Reply #139 on: August 24, 2014, 12:14:01 PM »
Henry --

Well this is just, well --- FUCK!! 

Will be sending all the good thoughts that I can muster your way.  Hopefully this will all be just a minor set back and things get figured out quickly.  Knowledge IS power and it sounds like you have a great doctor looking after you.

I'm sure you will have your entire forum family sending prayers and good thoughts.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Dachshund

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Re: My very own lymphoma
« Reply #140 on: August 24, 2014, 12:25:30 PM »
Man Henry you have been through the wringer. Thinking of you and hopeful for the best. Man, the wringer.

Offline zach

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Re: My very own lymphoma
« Reply #141 on: August 24, 2014, 12:30:20 PM »
fuck man, another lumbar puncture... i don't think i'll ever consent again

i don't even want to know how they do the marrow biopsy

pull yourself together, don't skimp on the drugs
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline phildinftlaudy

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Re: My very own lymphoma
« Reply #142 on: August 24, 2014, 12:50:25 PM »
Henry

Prayers going up and will continue to go up.

Love you and thanks for the update -

There is definitely power in prayer.

-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Jeff G

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Re: My very own lymphoma
« Reply #143 on: August 24, 2014, 12:50:42 PM »
You are always on my mind Henry ... love you man .

Offline WillyWump

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Re: My very own lymphoma
« Reply #144 on: August 24, 2014, 01:29:57 PM »
Dammit Henry. I hate this.

Always praying for you. Love you.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Miss Philicia

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Re: My very own lymphoma
« Reply #145 on: August 24, 2014, 02:34:02 PM »
but thank God for Klonopin

That's my sister!

But OMG Henry, the crapfest you've been through my darling. It's all so confusing to me -- and obviously to your doctors. I hate, as the patient, feeling trapped in between competing analysis of what's going on in my body but mine isn't anywhere near what you are experiencing.

Don't know what else to say but that I am, as usual, rooting deeply for you.
"I’ve slept with enough men to know that I’m not gay"

Online tednlou2

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Re: My very own lymphoma
« Reply #146 on: August 24, 2014, 03:15:23 PM »
Rooting for you, as well.  I can only imagine the anxiety.  Had hoped for continued good reports, but I know those will come again-- just delayed for now. 


Offline Buckmark

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Re: My very own lymphoma
« Reply #147 on: August 24, 2014, 03:45:03 PM »
I did get once piece of kinda good news:  My social security disability was approved.  Now I'll need to coordinate that with my employer's long-term disability (they will claw back the initial lump sum payment, which I expected).

Am I officially a disability queen now?   ;)   Pass me another klonnie…


"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Tonny2

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Re: My very own lymphoma
« Reply #148 on: August 24, 2014, 04:28:13 PM »


   ojo   Hi Henry, sorry to hear about your new dx, you will beat this too, you are a fighter...I will be sending you my good energy and will be thinking about you..

lots of hugs and good luck buddy    ojo

Online mitch777

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Re: My very own lymphoma
« Reply #149 on: August 24, 2014, 04:47:46 PM »
Just numb hearing all of that. You are always in my thoughts Henry.

more hugs.  :-*
31 years hiv+ (oct. 2013) with a curtsy.

Offline drewm

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Re: My very own lymphoma
« Reply #150 on: August 24, 2014, 07:26:03 PM »
You are in my prayers Henry! Good news is coming  ;)
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Jody

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Re: My very own lymphoma
« Reply #151 on: August 24, 2014, 08:42:40 PM »
I too will keep you in my thoughts Henry.  You are such a nice man and deserve only the very best.  Here's to a thorough diagnosis and a full and speedy recovery so that you can feel like yourself again.  And it is good you are on disability now as you can dedicate yourself to just getting better.  Working full time would simply not enable you to do so right now.

Hugs,

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline Lou-ah-vull

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Re: My very own lymphoma
« Reply #152 on: August 24, 2014, 09:48:27 PM »
Add me to the echo is supporting voices.  For some unknown reason I was thinking about you this morning and now I see this.  You have been such a fighter and now some more fighting seems to be in order. 

I think the disability is a good sign that you will be able to concentrate on the healing process and managing the doctors.  It was so smart of you to follow up on your instinct that something just wasn't right.  I believe this will help.

Prayers and support,  Love....  Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: My very own lymphoma
« Reply #153 on: August 25, 2014, 09:24:53 AM »

Am I officially a disability queen now? 


... not another one. Heaven help us.
"I’ve slept with enough men to know that I’m not gay"

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: My very own lymphoma
« Reply #154 on: August 25, 2014, 09:55:28 AM »


Henry,  Ed and I continue to think of you and wish you the very best with a full recovery.



Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline weasel

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Re: My very own lymphoma
« Reply #155 on: August 25, 2014, 01:49:47 PM »

     Hi Henry ,
                     I keep you in my prayers .  So sorry that  you are going threw all of this . Was really hoping to here a fabulous up date .   
   Glad you got your SSDI  , the less stress the better .

                                   Sending a big ((( HUG )))
                                                                                 Carl
" Live and let Live "

Offline WillyWump

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Re: My very own lymphoma
« Reply #156 on: August 26, 2014, 07:04:18 PM »


Am I officially a disability queen now?   ;)   

I think you get a T-Shirt or something. MissP got a sticker for her hoveround but that was years ago.
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline BT65

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Re: My very own lymphoma
« Reply #157 on: August 27, 2014, 05:41:34 AM »
God Henry, so, so sorry to read about all the crap happening.  I would be so pissed, you are handling it very, very well.

I'm definitely keeping you in my thoughts, so glad you got your disability.  Hug to you.

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Buckmark

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    • Henry's Home Page
Re: My very own lymphoma
« Reply #158 on: September 10, 2014, 02:08:28 PM »
Ready for some happy news?  I feel like I'm the luckiest guy in the world.  After all the bad news last month about my lymphoma, and the visits to MD Anderson and my local oncologist, the verdict is in:  NED (no evidence of disease).  Whatever cells were found in my cerebrospinal fluid (CSF), they found no abnormal cells indicating lymphoma.  So between the lumbar puncture, bone marrow biopsy, CT and PET scans, and brain MRI, there is no evidence of lymphoma in body.  The doc at MD Anderson thinks that whomever did the pathology / cytology on my July LP was, at the least, very imprecise.

I'll still need close follow-up, given the type of lymphoma I had.  So I'm going for a follow-up PET scan and brain MRI at the beginning of October.  We still need to find out why I'm having headaches, and even more immediately why I am experiencing incredible fatigue.  My local oncologist did a battery of tests both last week, and again today.  Looking for things like thyroid, testosterone, diabetes, vitamins D and B12, iron magnesium and potassium, and of course my usual HIV tests.

One problem she did notice today is that I have a case of thrush.  What the heck?  I didn't even notice -- to me is just looks like the back of my tongue is a little coated (I really don't look at the back of my mouth too often).  My throat looks fine to me, but she said my throat looked red and inflamed too.  Hmmmm, now I'm really curious to get my HIV labs back.

Thanks to all of you for your support and prayers for my healing.  Keep 'em coming, as I have follow-up tests in Houston in early October.  Right now, I'm breathing a sigh of relief, and will try not to get too wound up in anticipation of my next PET scan.  Live in the moment, right?

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Miss Philicia

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Re: My very own lymphoma
« Reply #159 on: September 10, 2014, 02:22:56 PM »
Great news, Henry! As far as the thrush it sounds like when I had it -- I had no idea either, but means likely it was caught early and will clear up easily with Diflucan.
"I’ve slept with enough men to know that I’m not gay"

Offline zach

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Re: My very own lymphoma
« Reply #160 on: September 10, 2014, 02:53:41 PM »
 ;D no shit, i was thinking how i don't want to see henry threads, then this

gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

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Re: My very own lymphoma
« Reply #161 on: September 10, 2014, 03:16:57 PM »
I about tinkled my pants I was so happy to hear this . So the new headilne is ...

50 year old man who has lived with HIV for 25 and just finished chemo for lymphoma wonders why he is tired .

Get well sweetie ... you know I love you .

Offline Tonny2

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Re: My very own lymphoma
« Reply #162 on: September 10, 2014, 03:21:11 PM »


    ojo    Hi Henry...congratulations, pretty happy for you...good lucl next October

Online mitch777

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Re: My very own lymphoma
« Reply #163 on: September 10, 2014, 03:37:48 PM »
Terrific news Henry!! You must just feel elated! I'm jumping for joy myself.

Happy hugs,
m.

31 years hiv+ (oct. 2013) with a curtsy.

Online tednlou2

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Re: My very own lymphoma
« Reply #164 on: September 10, 2014, 04:47:43 PM »
Great news.  What a great update!

Do you have family and friends helping out?  I was trying to imagine the fatigue that you would be going through.  I thought about the fatigue that many experience during seroconversion-- that awful mono-like fatigue.  Or, the fatigue with something like pneumonia, where brushing your teeth is exhausting.  But, those things usually pass after a month or so.  Anyway, I had been thinking about you and whether you still struggle with the kind of fatigue, where putting a frozen meal in the microwave would make you have to sit down and rest. 

I am glad all tests show no disease, and wishing you all the best on getting back to normal with you fatigue and headaches. 


Offline Lou-ah-vull

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Re: My very own lymphoma
« Reply #165 on: September 10, 2014, 05:53:25 PM »
Wonderful news Henry!

Small wonder that you have been experiencing severe fatigue...there have been a constellation of issues not to mention chemotherapy.  I am convinced your positive attitude has been demonstrably helpful in the healing process. 

Keeping the prayers and encouragement coming...and looking forward to better days for you. 

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline drewm

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Re: My very own lymphoma
« Reply #166 on: September 10, 2014, 06:51:17 PM »
Henry that is some damn good news! Thanks for sharing!!!  :)
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline bocker3

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Re: My very own lymphoma
« Reply #167 on: September 10, 2014, 08:19:53 PM »
Henry---

What incredible news -- I MUCH prefer your "good news" posts, so keep 'em coming!

Perhaps being able to go to bed with peace of mind will help combat some of the fatigue.  You really have seemed to maintain a very good attitude through all this.  You really do deserve to be able to celebrate with news.

Hugs to you!!!
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Jody

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Re: My very own lymphoma
« Reply #168 on: September 10, 2014, 08:43:26 PM »
Great news Henry and here's hoping the thrush clears up, you get your energy back and better and better days ahead. :)

Jody :)
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline bubba53

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Re: My very own lymphoma
« Reply #169 on: September 10, 2014, 09:37:54 PM »
Hi Henry' Was keeping an eye on your thread & waiting for you to post great news !
Be Well , Wade

 


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