Adding Venclexta to treatment for Waldenstrom: What to expect?

As always, the IgM values and trends guide the treatment. WM rarely "flares" on its own in the sense of jumping 50% or ? Your Dr thinks you do need a more aggressive treatment but a triple treatment isn't FDA approved. That satd, you and your Dr can appeal.

thank you ! i’ll talk to him
tomorrow

starting venclexta today along with other meds. what should i expect, sounds scary

First, I have been watching WM and now CLL for several years now. (long stories behind that) BTKis plus Venetoclax is not a common combination for WM, let alone with ruxience. It is however, getting more common with CLL. All seem to be well tolerated but be sure to stay well hydrated, etc. I suggest joining the IWMF forum for connection with other people with WM. https://groups.io/g/iwmfconnect

I have taken 400 mg of Venclexta for 18 months now. I take every day at the same time with my lunch. It does dehydrate you. Make sure you drink plenty! Also at times if I don’t eat enough with them, my stomach gets a little queasy. I have AL amyloid.
Prayers

thank you so much!! very helpful…

@triclonal much thanks… started it today..

do side effects from venclexta get better over time… also dr is going to keep me on 200mg instead of 500 because of my weight . is this protocol?

anyone on venclexta? awful side effects now for a month on it. dizzy? weak, hot sweats and nausea since i’ve been on it. will they go away? on it for reoccurring waldenstroms

@zeedee1, sorry to hear that you are experiencing such challening side effects. Have you told your symptom management nurse about the effects you are experiencing? The should be able to give you something that helps, especially for the nausea.