Does anyone have any experience of DLI plus Nelarabine to treat early relapse?
My 18 year old daughter is 3 months post transplant; everything seemed to be going very well - discharged day 28, excellent blood counts, 100% chimerism. But we've just had the devastating news that she has relapsed. They've explained that the prognosis for such an early relapse is very poor and options are about buying time rather than finding a cure. From what I can see, she' likely to have only a few months without treatment. One option for trying to extend this is Nelarabine chemo plus DLI. Does anyone have experience of this? If successful, are we looking at months or years? She underwent two rounds of Fla-Ida prior to transplant which really knocked her for six; it involved weeks and weeks in hospital and a couple of transfers to intensive care. Would love to hear from anyone who's had DLI plus chemo and what the outcome was.
Answers
Hi there,
I'm so sorry to hear that your daughter has had this awful news and can only begin to imagine how devastating it is to you all. I do know that we've had several members on the forum though that have gone through relapse, have had further chemotherapy, and have had DLI's or second transplants which have been successful. As bleak as things may feel at the moment there is certainly still hope.
There are a few threads on the forum that relate to DLI or second transplants from patients that have gone through the process which may help, and there's some good information on the Anthony Nolan website about DLIs on the link below.
https://www.anthonynolan.org/patients-and-families/recovery-body/having-donor-lymphocyte-infusion-dli
I'm sure your daughters medical team will be looking at a number of options to treat her and get her back into remission and will pursue whatever gives her the best chance.
The Anthony Nolan team will be able to help with better advice than I can and will have knowledge of Nelarabine and its effectiveness.
I hope this helps a little but please keep in touch and let us know if we can help you and your daughter get through this at all.
Best wishes,
Steve