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Author Topic: My very own lymphoma  (Read 10734 times)

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Offline ratcat

  • Member
  • Posts: 61
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: 3
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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  • 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

Offline wolfter

  • Member
  • Posts: 4,533
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

  • Member
  • Posts: 948
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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  • 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: 3,386
  • 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: 24,092
  • 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"

Offline Jeff G

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  • Member
  • Posts: 11,738
  • 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: 1,502
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: 1,824
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: 2,509
  • Current ambition. Walk the Dog .
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

  • Member
  • Posts: 5,957
Re: My very own lymphoma
« Reply #62 on: March 23, 2014, 04:11:22 PM »
Wishing you the best Henry.

Offline mitch777

  • Member
  • Posts: 3,534
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: 7,177
  • your ramblings bore Yamaguchi Kitteh
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

  • Member
  • Posts: 948
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

Offline tednlou2

  • Member
  • Posts: 4,885
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: 9,943
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: 2,937
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

  • Member
  • Posts: 1,681
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: 1,177
  • 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

Offline Buckmark

  • Member
  • Posts: 1,526
  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
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

  • Member
  • Posts: 2,509
  • Current ambition. Walk the Dog .
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

  • Member
  • Posts: 7,177
  • your ramblings bore Yamaguchi Kitteh
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

  • Administrator
  • Member
  • Posts: 11,738
  • How am I doing Beren ?
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

  • Member
  • Posts: 1,824
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

Offline mitch777

  • Member
  • Posts: 3,534
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

  • Member
  • Posts: 948
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

  • Member
  • Posts: 434
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

  • Global Moderator
  • Member
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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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  • It just is, OK?
    • Num is sum qui mentiar tibi?
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

  • Member
  • Posts: 1,446
  • not fade away
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

  • Member
  • Posts: 5,957
Re: My very own lymphoma
« Reply #82 on: May 08, 2014, 08:36:10 AM »
Just fantastic news Henry!

Offline bocker3

  • Member
  • Posts: 3,386
  • You gotta enjoy life......
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.

  • Member
  • Posts: 7,159
  • Joined Dec-2003 Living positive, since 1985.
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 "

Offline 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

Offline 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

 


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