chronic leukemia issues

[dannydann]

I have stage 2 B chronic lymphocyte leukemia refractory, I have started chemo (leukeran) 2 months ago.2 weeks ago I started to have sharp pain in my right side, can this be cause by the chemo or the lymph nodes in my liver?

[cllady01 Former Volunteer]

Best advice: call your treating Dr. and describe the situation. We each are different and we each have different reactions to treatments as well as varied kinds of CLL.

Please do not wait. If it hurts, if you are concerned, call and get an answer from the Dr. who knows what your situation is.

Hope you get relief soon.

[tsvieps]

Danny, I am a bit confused. To what you are you refractory? Also where are you located? Chemo in the form of B or FC was standard once. But now several well-targeted drugs have shown to have better efficacy and with much lower toxicity, especially in combination. For example Ibrutinib and Venetoclax.

That said, this switch seems to have taken place faster in the US. In Britain and Canada BR or FCR remains fairly routine for younger and more robust people as a first line treatment.

My view is that this is largely financial triage, as the new drugs are more expensive. All Govt systems get good average lifetimes for the money spent compared to the US. But there is "more cluck for the buck" spending limited funds to reduce early life death rates via vaccines, prenatal care, etc. It can cost a lot more to buy a few years for already old people who already have serious diseases. The best possible care for CLL can cost over $100k/yr for a few years. Only recently is it looking like many people will be able to stop such combo treatments after say 2 years. Trials are still sorting this out.

[dannydann in reply to tsvieps]

i did FRC 6 months and 18 months later leukemia is back so now i am on leukeran ( chloranbucile). i know that my lymph node in my liver and big they did reduce in size on the first chemo treatment but now i am starting to have pains in my side. i am at stage 2 B right now.

[tsvieps in reply to dannydann]

Danny, are you in the UK? An 18 month remission with FCR is within the bounds of normal. But much less often used in the US, given longer control and less bad side effects of the more targeted drugs. I am puzzled why you were give another chemo treatment after FCR. Some years ago, yes. But the benefit/risk profile is better with the newer options. Are you being given any choices or reasons?