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What Treatment Options Have Folks Had For CLL/SLL? And Side Effects?

A MyLeukemiaTeam Member asked a question 💭
Baltimore, MD

Hello Everyone and Happy Tuesday!! I met with Hematologist last week and confirmed my diagnosis of CLL/SLL. Treatment options - Imbruvica: 2 years or traditional chemo: 2 days/month for 6 months

August 2, 2022
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A MyLeukemiaTeam Member

I was never started on Imbruvica. I started Calquence last March & now my wbc's are 11.8. My only side effect is mild bruises.

August 8, 2022
A MyLeukemiaTeam Member

Hi Vas! I'm glad you know for sure what you're dealing with and some options!

Imbrevica is what my husband's dr wants him to go on.

I researched it to death! (Here, regular reliable internet links, the drug manufacturers website, etc) In doing my research, considering my husband's co-morbidities (has A-fib, CHF, HB, Anemia, bi-polar), my concern for him, on this medication was several people had reported that it triggered their A-fib, had extreme nausea, and that if you go off of it, you're more prone to your CLL mutating to Richters Syndrome (which is pretty fatal). So that scared me off. BUT there have been a lot of people on here say they've used it very successfully!

Calquence had less side effects noted and seemed less likely to trigger heart issues (which of course is a big concern for me, where my husband is concerned.) Seemed the most common side effect was fatigue.

I discussed these 2 drugs with my husband's Dr & he said "Imbruvica is the gold standard right now. Calquence was before Imbruvica" he agreed with my research findings but said the only reason that you'd take someone off Imbruvica is if they had bad side effects, so "Richters Syndrome" is not probable.

Don't know if this helps you any. Pray for guidance.

August 7, 2022
A MyLeukemiaTeam Member

My PREVIOUS doctor had me set to start transfusions then do the chemo med. I was skepitcal, so I reached out to a couple of very-"edumicated" medical professionals for 2nd & 3rd opinions. I hooked-up with a very strong/caring team that encouraged the Acalibrutinib(Calquence). Other than the lack of energy I was used to having, it has really helped my blood to not continue to take significant direction that would not be helpful! I switched doctors and treatment two years ago.
FYI: It is not a bad idea to question health professional if you are not comfortable with the direction they are going. Before I agreed to Calquence I watched a lot of forums put-on from medical professionals to also help me in the direction to go. There are too-many screw-ups out there. IMHO

August 6, 2022
A MyLeukemiaTeam Member

WBCs just hit 150. So I’m wondering if I’ll be getting some form of treatment soon? Other than sore joints n small lymph node pains here n there I’m still doing good for my 8th yr with this disease (CLL) stay focused

September 15, 2022 (edited)
A MyLeukemiaTeam Member

Kai
I believe you meant 2017 .
But it wasn’t approved for
CLL/SLL till the end of 2019.

August 8, 2022

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