Cll and my mutation

[chemosuxs]

I switched doctors after 8 years of recurring cll....imbruvica zydelig rhituxin with all plus others...just wasn’t working (for me). My new doctor was surprised that the old never did a bone marrow test (it doesn’t hurt like the old days). Well that and a genetic test revealed I had tp53 mutated gene which apparently was prevent meds from working (or something like that) well stem cell was an option and may still be but 7 months of veneclax and rhituxin and I’m cll free..even in the marrow ...Sloan Kettering did the research and is amazingly attentive...everyone is different but knowing your doctor is doing EVERYTHING is important....ask questions demand answers ...good luck everyone !!!

[PlanetaryKim]

Great news about your success on venetoclax!

[HopeME]

I’ve said it many times but it is worth saying again the benefits of seeing a CLL expert versus an oncologist or a generalist hematologist are immeasurable. The thing that I find mind blowing is how many oncologist/general hematologists treat CLL without a full understanding of the disease or the evolving treatment landscape. Why is it so hard for these folks to admit the disease is complicated and beyond their training and refer the patient to a specialist?

[Kokobean]

Such great news!,,

[Time17]

That is great news about the Veneclax. I am three weeks into using this drug as my FCR chemo regime failed and allowed my CLL to spread significantly. I have an aggressive mutation but not the tp53. Can I ask as to how long it took for the Veneclax to begin working?

[annmcgowan]

Great news.

Ann