ian_L (ian_l) wrote in lymphoma_peeps,


hi, I've been diagnosed with lymphoma stage 2A in Nov'05. went thru 6 cycles of CHOP but it didn't clean out the tumor in the chest area. My Oncologist said i would need a bone marrow transplant. Now I've just finished 3 cycles of RICE. They'll be collecting my stem cells next week and I'll be going thru the transplant in July.
Anyone got anything to share about the transplant?..

Ian L
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What type do you have? NHL?
yea its Non-hodgkins lymphoma. tumor in chest area. no other area affected
Primary Mediastinal Large B Cell? Right behind the sternum, right?

Sounds exactly what I had. I was diagnosed 2A also, underwent R-EPOCH.
DLBCL - Diffused large B cell.
are you ok now? did you go thru transplant?
I forgot to put the "Diffuse" in, so yes, we have the same.

I'm doing great - in remission for about nine months now. Didn't have to get a transplant, but I hear it has a pretty good success rate. You'll do fine! My prayers are with you :)
my husband had stage 2A Hodgkin's 21 years ago, chemo was MOP as well as radiation. last year, he was diagnosed with stage 4 Hodgkin's/non-Hodgkin's (considered recurring Hodgkin's even though it's a little different this time). he was given 3 cycles of RICE through the summer. halfway through, they collected/harvested his stem cells. it took 4 days, three hours a day and he slept through it each day. the transplant was in september. he's had some complications, infections and such, but we found out in february that he is cancer free!

the transplant itself was interesting, i was in the room with the nurses and doctors when it was done. charlie slept through that, too, because they shot him up with benadryl in case of reactions to the preservative. they had 17 bags of his stem cells, which is high and means more preservative, but he had no reactions at all. he was home in 11 days. today he struggles with some neuropathy in his extremities and still has a problem with fatigue, but he went back to work last week - one year and one week after going out.

there were some low periods for chal, that's to be expected. don't be afraid to ask for help, you'll need it.

silly little transplant trivia - there is a weird smell from the preservative that will stay with you for days - some say it's like roasted garlic, i say creamed corn. i wasn't a fan before, but i will never ever eat creamed corn again. =)

if you have any questions at all, no matter what they are, please ask. i'll answer what i can and ask charlie for the answers i don't know. i will tell you there were times i thought charlie would not make it (i was a typical worried wife), but he was optimistic the whole time and i think that really helped both of us.

i wish you well and hope you let me know if there's anything i can help you with. keep the faith! you're in my prayers.

hi Sue
thanks for dropping by.
good to hear Charlie is doing well!
He's home in less than 2 weeks?..
They told me i need to be kept in isolation for a month..
I'm also afraid of the usual side effects (like nausea, vomiting, ulcers, etc) but much worse i've been told, cos they gonna infuse a very strong dose of chemo for the transplant. strong enough to eliminate the cancer cells but also wipe out the marrow.
hi ian.

charlie entered the hospital on september 13th and left on september 30th. he was lucky to be discharged 11 days after the transplant, 19 days after he started the mega-doses of chemo. by then his numbers had started to increase and he was no longer neutropenic. 11 days tied the record for fastest discharge after an auto transplant. he got lucky that he had no problems or infections. hopefully you'll be lucky, too!

yes, the transplant will wipe out the marrow. that's when you feel the worst and are considered neutropenic. (you may have experienced this before with RICE, too.) charlie had to wear a mask if he left his room and they asked for no visitors at that time as well. (i was staying with him, they were okay with that.)

the transplant intentionally wipes out the marrow, then replaces it with your GOOD stem cells in the hopes that the cancer is wiped out, too. once your good stem cells start taking over, you'll feel much better. the nurses told charlie to try to walk as much as possible (except during the really low counts). they find that the more active patients have a much easier recovery than the ones who stay in bed. it wasn't always easy for charlie to do and some days he didn't get up at all, but more often than not you'd find him wandering the halls with his mask. he was embarrassed to wear it at first, but it's such a common thing to see on that floor that he soon realized nobody was staring.

a great source of strength for us was talking with other patients and spouses about it. mrsfruitcat is an amazingly strong person and helped me through some tough times. she's an angel, i'll tell you. there are others i met through cancer support groups, too, that i continue to keep in touch with to hear how they're doing and give each other strength. please let me know if i can be of help to you. i will pray for you. God bless.
My husband has Hodgkin's Lymphoma and will have a stem cell transplant in the next few weeks.

Transplants are different for everyone. My husband's advice to anyone with an illness is to take charge of your health! Ask as many questions as you need. Don't be afraid to ask for help. Read inspiring stories to keep you optimistic. NEVER EVER EVER GIVE UP HOPE!

If you have any questions, please don't hesitate to ask. I will be praying for you.

Thank you Cheryln,
many days it takes a conscious choice from being a cancer victim to a cancer warrior. everything we do, say or eat determines what we are. I can't be putting junk food in my mouth & proclaim I'm a fighter. Most days i hold the fort well, but some days i crumble. Then i pick up again. Yes we don't give up til the battle is won!
will remember both of you in my prayers too.
God Bless!
I had Hodgkin's but I know that the lymphomas have totally different approaches.

This forum here (http://forums.webmagic.com/ubbthreads/postlist.php?Cat=0&Board=UBB2) has an amazing system if you haven't been. I would really check it out. I used to frequent the Hodgkin's side and they often told me things my doctor didn't know off the top of her head so it might be worth a shot to ask these people too.
I've got cutaneous T-cell lymphoma, so because all of my stuff's out on my skin my treatment plan's a lot different from yours. But, despite that, to some degree I've been there -- and I understand the kind of fear you've got to be having right now. If you ever need a shoulder to cry on or a place to vent, I'd love it if you were to email me (zebra@livejournal.com -- I'm pretty reclusive on LiveJournal but I check my email obsessively).

All that said, I'll keep you in my prayers. Stay strong, man -- you can do it!