Remicade & lymphoma

I'm so sorry you're going through this. I hope your treatment is successful and you go on to kick Hodgkins in the butt.

I was certainly aware of this risk when I started my Remicade journey, but also made the choice to take it. At that point I was so sick I really had no life, and I decided that I'd rather have fewer but better years than to live longer yet be an invalid. I think if I were to develop lymphoma I'd still have no regrets. I've had 8 wonderful years.

I'm just so sorry your experience has been different, but I know you'll defeat this too.

UCh8er, my hat's off to you for a grueling pre-chemo diagnostic episode. ITA with you about the barium "meal" and about scope prep. These people need to taste their own inventions before sending them out into the world. Seriously.

Sorry to hear that your UC diagnosis was wrong. Should we call you Crohnsh8er?

I wonder if you could opt for an allogeneic bone marrow transplant for your condition, UCh8r?

Since you've got Crohn's as well as lymphoma, it's possible that getting bone marrow from a matching donor without a history of IBD may resolve the cancer as well as the Crohn's.

Some more info:

studies.fhcrc.org/cats/
crohntransplant.wordpress.com/

I believe a BMT is usually a last-resort sort of thing, but I wonder if they may give it more consideration with the fact that you have two conditions that could potentially be cured by it.

There are more studies in the second link, but the general idea is that a BMT replaces the genetic underpinnings of IBD so that regardless of what environmental factors are keeping the IBD going, you no longer have the genes in your immune system so nothing you do can activate the condition. As far as I know, there have been no relapses of IBD in those who have undergone BMTs with donor tissue, but when your own tissue is used (autologous), relapses happen about 50% of the time and everyone eventually relapses.

I know it's a very delicate situation, but I figured discussing this with your treatment team might be helpful.

Good luck with everything, you are definitely a trooper! I find it inspiring the way you are handling this.

UCh8r- you sure have been through the ringer. Your attitude seems great though. My best wishes for remission....we are all thinking of you. Pls continue to keep us in the loop.
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Kazbern: haha! Or maybe Crohn'sHodgkin'sLymphomah8er? :)

NSSG: that's so nice of you to think of me! Thanks!

Tunnelvisionary: that is some seriously interesting research. Wow! I don't think I qualify, but if (hopefully not) chemo fails and I do require a BMT, it will definitely be an allogenic, IBD free donor! I think at this stage, the risks of BMT are far too great (rejection, GVHD) without giving chemo a shot first. I am looking forward to some temporary chemo induced UC remission though!! The pt's blog was so detailed and interesting. That's some amazing work they're doing and I'm SO glad it's helped her! Thank you so much for the info!

NCOT: You presume correctly. I plan on beating this lymphoma. Pretty sure I've never posted anything leading anyone to think otherwise!

Hateuc: Thank you! What can you do right?

Soy stud: hahahaaaa! I was kinda scared to click on the link, but that was so funny! I love it! Yes! I wanna be the old granny lighting my cig off my 100 yo birthday cake candles! That's awesome! (No, y'all, I don't smoke. Don't worry!)

I'm so sorry for not updating for so long! It's been quite a journey...

Sooo chemo is no fun. I don't know how kids do it. They are tough little monsters! That stuff really kicked my butt some days. I've read my journal once since all this started and I can't believe the level of low that was experienced. However, I am very happy to say that after surgery, chemo, nausea, hair loss, some neuropathy and other annoying side effects I am in complete remission!!! Whoohoo!

Turns out even though two different pathologists confirmed the diagnosis as Hodgkin's, the 2nd still thought it looked funny and actually sent the slides to NIH (National Institute of Health, big guns who produce guidelines, etc). It was determined to be iatrogenic immunodeficiency associated lymphoproliferative disorder with EBV + Hodgkin's like cells. Basically, it was all almost definitely because of the Remicade. Booooo! However, they usually see non-Hodgkin's with immunodeficiency associated lymphomas so they had no guidelines to treat this. The plan was to stop chemo and monitor. Six weeks after last treatment (which was 1/13/15) the PET scan looked really great! So I'll just be monitored every so often "forever".

In hindsight, if I were braver and knew for certain that this was due to Remicade, I may have just stopped Remicade and maybe monitored the lymphoma. Possibly stopping the offending agent would halt progress or maybe even bring lymph nodes back to normal without having to go thru chemo nightmare?? I'll never know, and I don't dwell on it, just food for thought...

Good news: belly has been okay even after finishing chemo! I've even had wine, which I love and was a big no no before. I hope this continues because per GI, who has consulted with many others, there aren't many, if any, options for treating a flare now. Short term steroids may be okay, that shouldn't be too immunosuppressing, but as far as maintenance meds sulfasalazine (previously failed) may be the only option. Topicals haven't helped much either. The risk is that too much immunosuppression may bring back the lymphoma. I'll cross that bridge if I get there, but for now will enjoy remission.

Thank you again everyone for all the encouragement. I still think of Crohn's everyday. Maybe one day I'll be able to fully (well maybe not "fully" haha) relax. :)

Wow…..thanks a lot for all your posts.
I am on Remicade and my lymphocytes numbers had been growing above 4000 almost 5000
My GI does not want me to stop the Remicade but after reading your posts I am having second thoughts.
I am going to see an hematologist in a couple of weeks.