Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
April 24, 2014, 02:12:33 PM

Login with username, password and session length


Members
  • Total Members: 22262
  • Latest: Dg28
Stats
  • Total Posts: 621295
  • Total Topics: 46807
  • Online Today: 242
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: My very own lymphoma  (Read 4022 times)

0 Members and 2 Guests are viewing this topic.

Offline Buckmark

  • Member
  • Posts: 1,477
  • 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: 66
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!

Offline Miss Philicia

  • Member
  • Posts: 23,580
  • 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"

Online Jeff G

  • Global Moderator
  • Member
  • Posts: 9,373
  • 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: 261
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
04/08 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

  • Member
  • Posts: 2,759
  • Certified Life Coach
Re: My very own lymphoma
« Reply #5 on: November 13, 2013, 03:12:39 PM »
So sorry Buckmark
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Online wolfter

  • Member
  • Posts: 4,072
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
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline hope_for_a_cure

  • Member
  • Posts: 1,489
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

 


Offline mitch777

  • Member
  • Posts: 3,066
  • wish i were here
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.

Offline tednlou2

  • Member
  • Posts: 4,613
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

  • Member
  • Posts: 7,035
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-
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%
8/9/12, CD4 not taken, UD.
2/13/12, CD4- 904, UD 42%

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: 2,129
  • I love buying Furnature.
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: 925
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

Offline bmancanfly

  • Member
  • Posts: 534
  • 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

  • Global Moderator
  • Member
  • Posts: 9,639
  • Diagnosed + 1989
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: 2,038
  • "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: 6,970
  • 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 April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline bocker3

  • Member
  • Posts: 3,266
  • 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

Offline leatherman

  • Member
  • Posts: 5,925
  • 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

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline GSOgymrat

  • Member
  • Posts: 4,969
  • 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: 377
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: 139
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%)

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: 1,783
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
  • Posts: 925
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

Offline WillyWump

  • Member
  • Posts: 7,035
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-
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%
8/9/12, CD4 not taken, UD.
2/13/12, CD4- 904, UD 42%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Theyer

  • Member
  • Posts: 2,129
  • I love buying Furnature.
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
  • Posts: 1,477
  • 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

Online Jeff G

  • Global Moderator
  • Member
  • Posts: 9,373
  • 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 .

Offline mitch777

  • Member
  • Posts: 3,066
  • wish i were here
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: 7,035
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-
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%
8/9/12, CD4 not taken, UD.
2/13/12, CD4- 904, UD 42%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline bocker3

  • Member
  • Posts: 3,266
  • 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

Offline tednlou2

  • Member
  • Posts: 4,613
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

  • Member
  • Posts: 2,129
  • I love buying Furnature.
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

  • Global Moderator
  • Member
  • Posts: 9,639
  • Diagnosed + 1989
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

  • Member
  • Posts: 3,236
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

  • Member
  • Posts: 925
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

Offline Jody

  • Member
  • Posts: 1,783
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

  • Member
  • Posts: 5,674
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

  • Member
  • Posts: 1,477
  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
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

Online Jeff G

  • Global Moderator
  • Member
  • Posts: 9,373
  • How am I doing Beren ?
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 ? 

Offline mitch777

  • Member
  • Posts: 3,066
  • wish i were here
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

  • Member
  • Posts: 7,255
  • His name is Carl.
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

  • Global Moderator
  • Member
  • Posts: 9,639
  • Diagnosed + 1989
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

  • Member
  • Posts: 1,477
  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
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

Online Jeff G

  • Global Moderator
  • Member
  • Posts: 9,373
  • How am I doing Beren ?
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

  • Member
  • Posts: 3,266
  • You gotta enjoy life......
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

  • Member
  • Posts: 1,589
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

  • Member
  • Posts: 554
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

  • Member
  • Posts: 58
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

  • member
  • Posts: 2
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

  • Member
  • Posts: 1,477
  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
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

Online wolfter

  • Member
  • Posts: 4,072
Re: My very own lymphoma
« Reply #53 on: January 09, 2014, 09:46:04 AM »
You're definitely in my thoughts Henry. 

greg
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline Lou-ah-vull

  • Member
  • Posts: 925
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

Offline Buckmark

  • Member
  • Posts: 1,477
  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
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

  • Member
  • Posts: 3,266
  • You gotta enjoy life......
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

  • Member
  • Posts: 23,580
  • celebrity poster, faker & poser
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"

Online Jeff G

  • Global Moderator
  • Member
  • Posts: 9,373
  • How am I doing Beren ?
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

  • Member
  • Posts: 1,489
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

  • Member
  • Posts: 1,783
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

  • Member
  • Posts: 2,129
  • I love buying Furnature.
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

Online Dachshund

  • Member
  • Posts: 5,922
Re: My very own lymphoma
« Reply #62 on: March 23, 2014, 04:11:22 PM »
Wishing you the best Henry.

Offline mitch777

  • Member
  • Posts: 3,066
  • wish i were here
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

  • Member
  • Posts: 7,035
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-
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%
8/9/12, CD4 not taken, UD.
2/13/12, CD4- 904, UD 42%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Lou-ah-vull

  • Member
  • Posts: 925
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

Offline tednlou2

  • Member
  • Posts: 4,613
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

  • Global Moderator
  • Member
  • Posts: 9,639
  • Diagnosed + 1989
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

  • Member
  • Posts: 2,759
  • Certified Life Coach
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. 
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline weasel

  • Member
  • Posts: 1,589
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

  • Member
  • Posts: 1,169
  • Niceguy Dallas
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

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.