No updates as we're in summer holiday mode here in Spain, so next blood test is on the 11th of this month (FISH test) with the results expected mid-October... with a view of starting treatment before Xmas (as my platelets were down to 95 in early July compared to 175 one year previously)
Trying to gen up on what I may or may not be looking forward to I found the following page which more than any other explains clearly the different types of treatment and who they're apt for.
I have some issues with the list presented... I know they are listed on the NCCN CLL directory... however
Doxorubicin (Adriamycin®) the Red Devil... is cardio toxic
Vincristine (Oncovin®) from Madagascar Periwinkle... causes peripheral neuropathy
I have had both of these with lingering side efects...
Neither are commonly used anymore in CLL. Maybe there could be doctors using R-CVP for SLL, but these drugs are far more commonly used in DLBCL lymphoma for example, or Richter's transformation which isn't CLL.
Cladribine (Leustatin®) aka 2CdA is a purine analog like fludarabine, and it is used a bit in Poland, and the former soviet union...
Alemtuzumab (Campath®) was used for 17p deleted about 8-10 years ago, but only for that select group, by and large. It was removed from the CLL market 7 years ago by the drug company and rebranded for M.S. with a substantual price increase. The side effects were CMV reactivation and bacterial and fungal problems or all kinds...good riddance!
I wish LLS would include dates on information sheets like this! Things are changing so fast in the CLL world that 2 years can make something old news. This does give an initial picture of things. I posted not too long ago that I wish someone would come up with an updated list of drugs broken down by families. I'd also like to see a sheet with the newer combinations in use or in trials. When I was diagnosed (2003) there was much less to try to figure out, as there were far fewer options.
Hi John I am in the same position as you, treatment on the horizon this year. I have had half of genetics back 17p not deleted so far so good get the rest in 10 days time. Thank you for the link most helpful. Good luck with your treatment keep us posted.
I'm 17p started ibrutinib 4 months ago and doing great nasty aches at the start of treatment but they subside and all looking good now best of luck with whatever path you take
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Determining if you'll never need treatment. It is feasible and safe to stop specialized follow-up of asymptomatic lower risk CLL?
Look what I found when I entered "hiv leukemia" into google search engine!
New Treatments
