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Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

I had my first round of chemo last week which was 2 days in a row, of retuxin and treanda first day, and treanda only the second day, then neulasta the day after, it totally whipped my butt, i used regular Claritin for bone pain which helped a lot, but after al was said and done i am not so sure i can handle stem cell now, i was so miserable and so sick, i lost over 5 lbs in less than a week, nothing styed in me, im so weak now and so tired, 7 yrs of this and i am no better off , i cant take anymore, i see the doc on the 25th for the stem cell consult, i want to tell her i dont want it, some ppl have told me dont make any crazy decisions when im not feeling well, i am not crazy! I know how i feel, my boday is tired and so am i, am i wrong for feeling like this is too much and i dont want it. I have no support system here, ppl i thought i could talk to well lets just say i cant, i feel like a kid getting lectured about whats best for me, sorry for the rant, but its come to this now, im too tired to fight

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3446
Joined: May 2012

It is your decision to make, Chris.

I guess I would ask the doc exactly how bad the workup to the SCT would be, and make a decison on whether that is "doable" for you.

Are their any other slavage therapies, short of SCT ?

If not, ask about palliatative care, which can reduce symptoms and prolong life, in some cases for many years.

We all welcome your distress, and it is very understandable.  Rant space here for free, 24/7 !  Please share your decisions, and know your friends are on line,

max

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Hi Max

Yes there is an alternative it would be traditional chemo, like i had the first time, i am aware of pallative care, i guess so much is happening so fast, i had VATS surgery on Feb 19th, with multiple biopsies done, i was a mess,my lung had to be deflated to reach the 4 areas he biopsied which were deep tissue biopsies 1/2 in deep, had a chest tube,  then less than a few days after getting stitches removed i was getting chemo, now the neuropathy is starting, its like when it rains it pours, after my VATS i stayed over night, due to the fact i was heavily medicated for pain on a pump, now my medical insurance is saying they dont want to pay as they feel it was medically necessary? Really? I guess im feeling all the frustrations and i dont know how to handle this all, i told my insurance compny i will fight it, the surgeon said he will help me. Ok i will stop for now, just makes me anxious, anyways, thank you for responding, and i will try to enjoy the rest of my day as i hope yours is a good one too, until later

                                                    Chris

illead's picture
illead
Posts: 857
Joined: Aug 2012

I feel so bad for you.  Max gave you good advise.  It seems you are getting hit from all sides, you sound so desperate, which is totally understandable.  Maybe if only for a short time, you can try to take a day or just hours at a time to clear your head, relax, and try to organize your thoughts. Don't worry about bothering us, we are here for you and to give you all the support we can.

I am keeping you in my thoughts,

Becky

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