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Post-transplant lymphoma (PTLD) / chemotherapy

PostPosted: Fri Oct 13, 2017 12:19 pm
by jenjen-2
Hello

Some of you may remember me - I used to post here as jenjen but haven't been on the board in a while.

I had a successful transplant in 2008, which worked very well up until August this year when my creatinine started rising along with CRP, my haemoglobin started crashing, and I had unpleasant gastro symptoms. After 2 months in and out of hospital very unwell, on IV fluids and having battery of different tests (at one point they thought I had a mystery tropical disease as I had just returned from a month of fieldwork in Kenya!), I was diagnosed with non-Hodgkins lymphoma a few weeks' ago.

My PTLD was not caused by the Epstein Barr Virus (the usual cause), but they think by 10 years of immunosuppression (quite rare I'm told). Since the lymphomas have also spread to my colon, they are treating with 6 rounds of chemotherapy called R-CHOP (total 18 weeks). This is a combination of Rituximab + high dose Pred + 3 types of chemotherapy drugs. I'm told that they are aiming to cure it, that outcomes for this type of cancer are generally positive, and that I won't necessarily lose my transplant. I've had one round of chemo already, and so far, the transplant is hanging in there!

I'm mainly writing to see if anyone has had any experience either with PTLD and/or having chemotherapy after a transplant. My brain is scrambled from wondering how its all going to work so I'd appreciate any tips or information about the process.

Cheers,
Jen

Re: Post-transplant lymphoma (PTLD) / chemotherapy

PostPosted: Fri Oct 20, 2017 8:47 pm
by Thumps
Nothing useful to add but wishing you ALL THE VERY BEST x

Re: Post-transplant lymphoma (PTLD) / chemotherapy

PostPosted: Wed Nov 01, 2017 1:53 am
by sporti
Hi Jen

I remember you! You may want to read my thread which I started in 2015. To cut a long story short I was diagnosed with kidney disease in my teens. They finally were on their last legs in 2015 at the age of 62. Not bad going. I was put ontransplant list but was taken off (bastards) when I was diagnosed with Maginal Zone non Hodgkin lymphoma. However on going to New York City Mt Sinai Hospital I was put back on their list. I was lucky as just before dialysis I had a live transplant despite having NHL in May 2015. I was treated 48 hours after the transplant for the Lymohoma. I’ve no idea what with or how many. I was far too ill. However it was a great success and Still is. The treatment did not affect my brand new kidney literally....at all. I was watched very closely and always had a fluid drip. Tbh I think I on,y had twotreatmemts now I come to think of it. Best of luck to you and keep in touch. x