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Author Topic: My very own lymphoma  (Read 14858 times)

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Online Jeff G

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

You are helping others by sharing your story along the way

Offline mitch777

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

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

Offline bocker3

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  • You gotta enjoy life......
Re: My very own lymphoma
« Reply #102 on: May 28, 2014, 05:38:56 PM »
Henry,

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

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

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

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

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

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

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

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

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

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

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

Online Jeff G

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

Offline wolfter

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

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

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

Offline mitch777

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

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

Offline tednlou2

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

Offline bocker3

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

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

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

Online zach

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Re: My very own lymphoma
« Reply #109 on: June 02, 2014, 10:28:37 PM »
you got this, dangling

Offline thunter34

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

Offline Lou-ah-vull

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

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

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

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

Offline Theyer

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

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

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

Offline weasel

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

   Me too !

   I pray to GOD you will be OK  ;)

                                                          Carl
" Live and let Live "

Offline Matty the Damned

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

MtD

Online Buckmark

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

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

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

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

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

Offline WillyWump

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


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

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

 :-*
Will

POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Online zach

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

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

good luck

Offline Theyer

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

Online Jeff G

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

Offline Fisher

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Re: My very own lymphoma
« Reply #120 on: June 11, 2014, 09:01:48 PM »
My thoughts are with you, Pal.
- fisher
09/22 CD 385 %22 VL UD
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 Ė Western Blot
05/83 Ė 04/98 - Monogamous Partner Being Negative
ARS - LA '82

Offline weasel

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

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

good luck

     I agree !        :)

                                                  Carl   
" Live and let Live "

Offline nickinny

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  • Posts: 3
Re: My very own lymphoma
« Reply #122 on: June 16, 2014, 08:41:02 AM »
OH Henry!!!  I am so terrible at following up on forums.  Great news, being in remission.  I am still cancer free myself.  I had R-EPOCH too!  I wore a bag with a pump and went in five days a week to have it refilled with all the cancer killing drugs.  The Rituxan was lowered as it was causing probs.  I have peripheral neuropathy in my feet because of it, it's annoying as hell.  I am taking Lyrica for it, supposed to stimulate damaged nerves.  As for the constipation, how annoying is that?, you need yogurt, fiber out ur ass, and Senekot!  If that doesn't work take some Ex-Lax.  I had the Miralax but never needed to use it.  I tried to be pro-active with my pooping schedule!! Enough of crap talk.  I also had some radiation.  That was nuttin' compared to chemo.  I would take radiation any day.  Keep moving along, remain positive, and this will be over soon my friend.  Please message me if you need to talk or have any questions.  I am not a stalker, gossip :-X, in need of money, or crazy!  I also have a degree in human development along with a degree in counseling.  These come in very handy when someone needs to talk.  I talk to and counsel myself all the time!! LOLOL......  ;)
"this too shall pass"

Offline Theyer

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

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

Offline drewm

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

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

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


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

Offline thunter34

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

Offline drewm

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

MtD

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

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


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

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

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

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

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

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

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

Online Jeff G

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

Offline drewm

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

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


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

Offline tednlou2

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

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

Ted

Offline Lou-ah-vull

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

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

Offline WillyWump

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

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

Hugs and kisses!

POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
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 mitch777

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

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

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

Offline Theyer

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

Hope you get some quiet time soon.

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

Online Buckmark

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

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

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

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

Offline Miss Philicia

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

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

Offline Theyer

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

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


Sounds like you have it covered Henry.

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

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

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

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

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

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

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

Prayers and other good thoughts would be most welcome.

Hugs,

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

Offline bocker3

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

Well this is just, well --- FUCK!! 

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

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

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

Offline Dachshund

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

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

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

pull yourself together, don't skimp on the drugs

Offline phildinftlaudy

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

Prayers going up and will continue to go up.

Love you and thanks for the update -

There is definitely power in prayer.

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

Online Jeff G

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

Offline WillyWump

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

Always praying for you. Love you.

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Miss Philicia

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

That's my sister!

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

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

Offline tednlou2

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


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

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


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

Offline Tonny2

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


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

lots of hugs and good luck buddy    ojo

Offline mitch777

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

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

 


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