Post-transplant lymphoma (PTLD) / chemotherapy
Posted: Fri Oct 13, 2017 12:19 pm
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
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