Hello – I'm writing on behalf of my best friend whose lovely Dad is critically ill. This is a letter from her brother and if anyone can offer any advice or support we'd be so grateful. Thank you.
Hello.
My 64 year old father is in hospital at the moment in London, UK with B-cell Lymphoblastic Lymphoma in a Leukaemic phase. Unfortunately things have taken a serious turn for the worse in the last few days. We found out last weekend that the first round of chemotherapy (ESHAP) has failed to shift a significant amount of it to totally convince the haematology team that he is a viable candidate for a bone marrow transplant, which at his stage of disease is the only option left in the conventional treatment pathway. On wednesday the consultants came to see him to tell him that they are unable administer an alternative cocktail of chemotherapy (probably would have been CODOX-M/IVAC or FLAG-ida) and essentially there is very little that they feel they can do. This is down to two major setbacks.
The first is that the chemotherapy didn't work nearly as well as we were hoping. So Dad's disease is now suspected to be largely chemo-resistant. The second is that he's picked up a nasty infection in the lungs (aspergillosis).
Essentially the doctors are caught up in a horrible juggling act. They would like to administer the strongest possible chemotherapy (CODOX-M/IVAC or FLAG-ida) in the hope that it would make a bigger dent in Dad's disease. Infection-aside they believe he is fit enough to take it. However if they administer the chemotherapy whilst the infection is still in his system they tell us it will almost certainly kill him. They think it will take 2-4 weeks for the infection to clear up but there also has to be an extra period of time added on to ensure that the infection is fully gone. Meanwhile the clock is ticking and the lymphoma is growing stronger, eroding any limited benefit gained from the first batch of chemotherapy. So by the time Dad would be ready to receive the second round of chemo the chances of it being able to do the required amount of disease eradication would be slim to none.
Our only hope rests on Dad recovering from the infection faster than expected as that might open a small window where more treatment of some kind or another would be possible before his bone marrow starts shutting down. The one bit of good news is that on the evidence of this week's blood tests that does appear to be happening. On current trends in another couple of days his infection markers should be normal. But until that happens we're not getting carried away.
If that window does open there's a few options open to us:
– I've tracked down four clinical trials that Dad might be a candidate for as long as he is infection free,
– he conceivably might be given the strong chemo I mentioned earlier
– or if he's too weak for either or doesn't want to submit himself to being poisoned within an inch of his life again we could try some alternative therapy.
We are garnering as many other opinions from specialists in the US & the UK as possible to try and make the best possible informed decision.
What I'd love to know or get any advice on is:
– if there are by any chance any pioneering treatments or alternative/complementary treatments that we might conceivably be able to investigate? The family is in a fortunate position in terms of making funds available for any treatment that might work so (within reason) money isn't really an object at this stage.
– Has anyone undergone CODOX-M/IVAC or FLAG-ida chemo, and if so what were your experiences? If Dad does only have a short time left we are eager not to decimate his quality of life by giving a treatment that is unlikely to work.
Moving him a great distance may prove problematic. I would say the US is out of the question but elsewhere in Europe might be a possibility.
Many thanks in advance for all your help.
Pete
nicharrison 12 years, 8 months ago.
