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I Have SLL And I Am On 400mg Of Venclexta A Day. Does Anyone Else Take Venclexta For SLL? And If So, What Is Your Maintenance Dose ?

A MyLymphomaTeam Member asked a question πŸ’­
Atlanta, GA

My Oncologist told me after my last scan that i will most likely have to stay on this Drug for the rest of my life. Anyone out there with SLL that has successfully come off all Cancer meds after reaching remission ?

May 31
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A MyLymphomaTeam Member

Hey David - I really appreciate your detailed response. YES, on energy. When i had to go back up to 400mg, my sleep requirement went up about 1.5 hours a night and i track my sleep cycles. You can see the abrupt change on a calendar. Yes, I am on Allopurinol as well. I had some very bad complications with treatment early on , when one of my ankles would swell up like it was broken or severely sprained. Different ankle each time and would have to keep crutches by the bed for weeks after a bout. We think now that i was having Gout like symptoms tied to the high Uric acid. I have not had an issue after the first 7 months. Yes on exercise as well. Its the best antidepressant for me so 5-6 days a week. God Bless and keep me posted with your journey ! Cheers, Freddy.

June 9
A MyLymphomaTeam Member

Yes, I also had to reduce the Ventoclax to 200 mg. I had a cat scan and it looks like I will go off of it end of November. I thought I sprained my ankle a couple days ago but from your experience I think I should let the doctor know. Hope you can get off the drug eventually. I’m so grateful this drug is free in Canada.

July 12
A MyLymphomaTeam Member

Hey Freddy πŸ‘‹
I pray your getting through this nasty blood cancer, hang in there, eat healthy and try to exercise them bones every chance you get. As for your question yes! I have CLL and SLL and I did have some issues with my 400 mg dosage of venclexta! I was feeling a bit light headed and drugged up with that dosage. I brought it to my doctor's attention and he reduced my dosage to 200 mg. After a few weeks I was feeling much better and had more energy to do things around hereπŸ‘.
If your feeling what I was experiencing I would suggest getting with your doctor on changing your dosage. As for remission, I'm not sure there is remission for this blood disease? The venclexta keeps the RBC counts low at all times, so how do they know if your blood cell counts are getting any better if your still taking this drug? If you hear anything different please let me know πŸ‘. BTW, are you taking allopurinol with your venclexta?
God Bless πŸ™

June 6 (edited)

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