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Author Topic: Possible lymphoma and I'm very scared.  (Read 2563 times)

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Offline todd123

  • Member
  • Posts: 67
  • "You don't ask, you don't know."
Possible lymphoma and I'm very scared.
« on: April 02, 2009, 11:41:41 PM »
Hey all,

After feeling "sick"  on and off for a couple of months.  slight fever, some night sweats,
slightly swollen glands my doc did another cd4 test and my tcells took a nose dive from
218 to 80.  Coupled with some swollen nodes, he's concerned about the possibility of
lymphoma.  I don't necessarily worry about having it as much as I worry about the ability
of my body to rally and fight it with such low numbers. 
I know I don't have the result yet (PT Cat Scan was done on Monday) but he's tested me for
many other HIV related things-thankfully, none of which I have.

I guess I'm posting because I'm feeling a little scared and kind of alone. I have a great partner
it's just feeling alone inside.

Any support or feedback is soooooo appreciated.

best,
Scott
Tested HIV+ July 28, 2008
CD4 16 VL over 400,000
Started Prezista/Norvir, Isentress and Intelence; Mepron
8/08   CD4 64    2%      VL 1500
9/08   CD4 135  6%      VL 371
11/08 CD4 104   9%     VL 156
12/08 CD4 161   9%     VL 400
01/09 CD4 109   7%     VL 351
02/09 CD4 218   8%     VL   98
03/09 CD4   80   5%     VL   98 at least that's the same
04/09 CD4 150   7%      VL 100
05/09 CD4 232   8%      VL   90

Offline GSOgymrat

  • Member
  • Posts: 5,037
  • HIV+ since 1993. INTJ
Re: Possible lymphoma and I'm very scared.
« Reply #1 on: April 03, 2009, 12:12:15 AM »
I know it is scary not knowing if you have something like lymphoma. You are fortunate to have someone to help you through this crisis. I hope your scans are negative and that your symptoms resolve on their own. Wishing you strength and peace.

Ford

Offline Robert

  • Member
  • Posts: 2,646
Re: Possible lymphoma and I'm very scared.
« Reply #2 on: April 03, 2009, 01:09:47 AM »

it's the unknowing that amplifies the worries.

let's just all hope for the best.  It sounds like you have good support at home and with the Dr.  That's a big hurdle right there.

all our best

robt
..........

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Possible lymphoma and I'm very scared.
« Reply #3 on: April 03, 2009, 02:48:27 AM »
Hi

I have been through the process of fearing a lymphoma, and it wasn't the case.
My numbers were bouncing too and I made 2 PET-Scan.
The conclusion was no lymphoma.

You don't need night sweat nor swollen lymph nodes to conclude "lymphoma".

I wishes you all the best.

John

Offline todd123

  • Member
  • Posts: 67
  • "You don't ask, you don't know."
Re: Possible lymphoma and I'm very scared.
« Reply #4 on: April 03, 2009, 02:23:24 PM »
Thanks to all of you for your support.  It's just comforting to hear from people
even though, yes, I do have support at home.

Alot of special people!
Still no results today.  I'll get them on Monday.  Out of town working in Philadelphia
and will be HOME for any news.  Probably the best thing anyway.

You guys and gals are great.

best,
Scott
Tested HIV+ July 28, 2008
CD4 16 VL over 400,000
Started Prezista/Norvir, Isentress and Intelence; Mepron
8/08   CD4 64    2%      VL 1500
9/08   CD4 135  6%      VL 371
11/08 CD4 104   9%     VL 156
12/08 CD4 161   9%     VL 400
01/09 CD4 109   7%     VL 351
02/09 CD4 218   8%     VL   98
03/09 CD4   80   5%     VL   98 at least that's the same
04/09 CD4 150   7%      VL 100
05/09 CD4 232   8%      VL   90

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Possible lymphoma and I'm very scared.
« Reply #5 on: April 03, 2009, 06:42:02 PM »
Scott

Been thinking about your post today and wishing you well.  It is so difficult to wait on uncertain news.  Hope you can drown it out with work for a while and that you get good news on Monday.

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: Possible lymphoma and I'm very scared.
« Reply #6 on: April 03, 2009, 10:10:39 PM »
I've known a lot of people with lymphoma for some reason.  All I can say is that they all got really good treatment and had a really good attitude.  They are all still alive.

It's scary right now.  Be glad for who is in your life.   They will help you get through this.  And, you WILL get through it, even if you have to work a little harder because of your counts.

Peace...  hugs.

Scott
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline mum20011940

  • Member
  • Posts: 3
Re: Possible lymphoma and I'm very scared.
« Reply #7 on: April 05, 2009, 05:07:12 AM »
Hi my husband has lymphoma he was diagnosed in Jan/09 we was told lymphoma is a curable cancer ,we started to get our heads around the lymphoma working out how we would fight this also practical things like work /money we then found out he was hiv+ .
his CD was 197 vl 1225 pre chemo.
he has had two treatments of chemo the lumps have shrunk from golf ball size to pea size good signs
he has started taking raltegravir and truvada and we are having bloods taken again tomorrow.
the thing that has amazed me is he has not taken one day off work he is still the same maybe all my fears of total doom and gloom were wrong ,early days I know.
I find this site to be my comfort and want to thank my mentors
wish you well and good luck for Monday

Offline BrooklynGuy

  • Member
  • Posts: 49
  • Tomorrow is not a promise, it's a gift.
Re: Possible lymphoma and I'm very scared.
« Reply #8 on: April 05, 2009, 09:08:26 AM »
i understand your fear and honestly, the fear of the unknown is one of the worst things.  my partner of 10 years was diagnosed about a month ago with Stage IIIB Hodgkin's Lymphoma and he's also HIV+ (as am I).  He now has 2 chemo treatements (our of a total of 12) under his belt and immediately, the night sweats and fevers disappeared.  His appetite seems to be coming back but he still has pain and discomfort which we hope will begin to abate afer a few more treatments.  To date, he still has his hair but chemo affects everyone differently and he still may loose it.  The plan is to do another PET scan after the 4th treatment to make sure the cancer is on the retreat.

All the best getting to a diagnosis (lymphoma or not) and feel free to reach out with any questions you may have.
Infected:  Probably 1995
Diagnosed: June 2005
Baseline VL: 650,000
Baseline CD4: 30

Last Dr. Visit: 12/2013
VL: Undetectable
CD4: 700
Meds: Complera

Offline todd123

  • Member
  • Posts: 67
  • "You don't ask, you don't know."
Re: Possible lymphoma and I'm very scared.
« Reply #9 on: April 07, 2009, 11:25:57 PM »
Hey everyone,

I got some results and I think it's good news.  My tcells went up to 150 from 80 and my doc said that
wouldn't happen with lymphoma.

The scan came back and showed hundreds of lymph nodes but none of them abnormally sized.
My doc still wants to do a biopsy.  I'm sort of confused because he said I can put lymphoma out
of my head, and yet they still showed up on the PT Cat scan.

I guess more will be revealed.

scott




Tested HIV+ July 28, 2008
CD4 16 VL over 400,000
Started Prezista/Norvir, Isentress and Intelence; Mepron
8/08   CD4 64    2%      VL 1500
9/08   CD4 135  6%      VL 371
11/08 CD4 104   9%     VL 156
12/08 CD4 161   9%     VL 400
01/09 CD4 109   7%     VL 351
02/09 CD4 218   8%     VL   98
03/09 CD4   80   5%     VL   98 at least that's the same
04/09 CD4 150   7%      VL 100
05/09 CD4 232   8%      VL   90

Offline komnaes

  • Member
  • Posts: 1,893
Re: Possible lymphoma and I'm very scared.
« Reply #10 on: April 07, 2009, 11:34:27 PM »
Hey Scott, sounds like good news for now.

I guess you can relax somewhat.

Take care my friend and hope further test results are good too.

Hugs, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline BrooklynGuy

  • Member
  • Posts: 49
  • Tomorrow is not a promise, it's a gift.
Re: Possible lymphoma and I'm very scared.
« Reply #11 on: April 09, 2009, 12:34:35 PM »
Todd,

Thanks for posting on my thread updating everyone about my partner's dealings with lymphoma.  I'm encouraged by the scan results and I'm also glad that your doctor is going the extra step to do a biopsy because, as our oncologist told us, the proof is in the tissue. 

My partner's scans were very different in that his lymph nodes "lit up" all over the place which meant there was significant glucouse uptake in them which is a big indicator of cancer/abnormal cell growth which, it sounds like your scans are not showing.

Keep us posted.
Infected:  Probably 1995
Diagnosed: June 2005
Baseline VL: 650,000
Baseline CD4: 30

Last Dr. Visit: 12/2013
VL: Undetectable
CD4: 700
Meds: Complera

Offline todd123

  • Member
  • Posts: 67
  • "You don't ask, you don't know."
Re: Possible lymphoma and I'm very scared.
« Reply #12 on: April 10, 2009, 04:31:45 PM »
Hey Brooklyn Guy (what's your name by the way?)

I guess there is a difference in lymph nodes merely "showing up" and "lighting up"?
My doc thinks I may have a case if IRS  (immunce reconstitution syndrome)  my low grade
fevers (99.5) still continue.  It's a pain, but somewhat manageable.  I'm sure I'm going way over
my allotment of ibuprofen each day.  But it doesn't seem to be bothering my stomach.

I think your partner was getting his 3rd treatment today.  Please know that my thoughts are wlth you.

best,
Scott
Tested HIV+ July 28, 2008
CD4 16 VL over 400,000
Started Prezista/Norvir, Isentress and Intelence; Mepron
8/08   CD4 64    2%      VL 1500
9/08   CD4 135  6%      VL 371
11/08 CD4 104   9%     VL 156
12/08 CD4 161   9%     VL 400
01/09 CD4 109   7%     VL 351
02/09 CD4 218   8%     VL   98
03/09 CD4   80   5%     VL   98 at least that's the same
04/09 CD4 150   7%      VL 100
05/09 CD4 232   8%      VL   90

Offline todd123

  • Member
  • Posts: 67
  • "You don't ask, you don't know."
Re: Possible lymphoma and I'm very scared.
« Reply #13 on: May 06, 2009, 01:46:14 AM »
After waiting for scans and tests etc. it looks like this is NOT lymphoma!!
My doctor now thinks it's just part of my "immune reconstitution syndrome".
My latest labs came back much improved and the lymph nodes are dramatically
smaller. 
I just have to put up with these occasional "HIV" days where I don't always feel at my best.

On the plus side my cd4 is 232 and VL at 90.  Those are the best numbers I've had since I started
treatment.

Thanks everyone for your support and concern.

xo
Scott
Tested HIV+ July 28, 2008
CD4 16 VL over 400,000
Started Prezista/Norvir, Isentress and Intelence; Mepron
8/08   CD4 64    2%      VL 1500
9/08   CD4 135  6%      VL 371
11/08 CD4 104   9%     VL 156
12/08 CD4 161   9%     VL 400
01/09 CD4 109   7%     VL 351
02/09 CD4 218   8%     VL   98
03/09 CD4   80   5%     VL   98 at least that's the same
04/09 CD4 150   7%      VL 100
05/09 CD4 232   8%      VL   90

 


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