Waiting for Acalabrutinib : After 100 days of... - CLL Support

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Waiting for Acalabrutinib

Samka profile image
8 Replies

After 100 days of ibrutinib with wonderful results Atrial Fibrillation is ruining it. A-Fib has been controlled with Diltiazem but my Doctor feels that it’s best to stop the ibrutinib and try to get Acalabrutinib approved which supposedly similar but does not usually include the A-fib side effect. After a few days of stopping the ibrutinib I experienced withdrawal and wasn’t feeling very well. Now I am ok again, even when my lymph nodes have grown back. I have several questions that maybe I could answer with your experiences.

Is the Afib resulting from a side effect usually temporary or permanent ?

Has anyone tried Acalabrutinib a a second choice after Ibrutinib?

Are there any other similar experiences that can be shared ?

Thank you all very much for your always very kind responses.

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Samka
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Cllcanada profile image
CllcanadaTop Poster CURE Hero

Hi Samka

I had minor A.fib prior to Imbruvica (ibrutinib), it got worse while on the drug, and went back to pre-treatment state when I got off Imbruvica (ibrutinib). So it wasn't perminent as such.

May be difficult to get acalabrutinib since it is not FDA approved yet. Its currently being looked at for MCL. Should start CLL approval next year. It might be a available in the U.S. under special access once approval process starts.

I know a patient who failed Imbruvica (ibrutinib) and went into an acalabrutinib (ACP-196) trial... but she also failed that after 18 months. Its a different situation than yours.

You might look at Zydelig (idelalisib)/rituxan, I have been on it for 10 months and it has been excellent, bringing me from just about transfusion dependant to bloods counts all in range... I feel great.. lots of energy...

I think Zydelig (idelalisib) is an option doctors overlook... you also might be able to start Venetoclax

~chris

Samka profile image
Samka in reply toCllcanada

Thank you Chris, my Doctor has mentioned various possibilities in case Acalabrutinib is not approved, including Zydelig. I’ll post about what route we follow and how I respond to the new drug.

Thank you and continue we’ll !!

Hi Samka-My afib is definitly IB related and symtoms are being managed with xarelto and metropropol without problems at this time. Of course my blood is like water from three blood thinners. Fortunately I'll have some answers next week after first meeting with cardio oncologist. Like you, now that I seem to be through the initial IB sidefx I hope I can get off the afib drugs. I'll post what I learn. Good luck to you-bill

Samka profile image
Samka in reply to

Thank you Kinziodian for your prompt response, I’ll be pending to read your next post after you meet with your cardio oncologist.

Thank you very much for you info.

Good luck and best wishes for your continued good health.

Myrddin profile image
Myrddin

FDA approves new treatment for adults with mantle cell lymphoma - FDA approves new treatment for adults with mantle cell lymphoma. The U.S. Food and Drug Administration today granted accelerated approval to Calquence (acalabrutinib) for the treatment of adults with mantle cell lymphoma who have received at least one prior therapy.

As it works like Imbruvica Astrazeneca hope to get approval for use for more common blood cancers like CLL

astrazeneca.com/media-centr...

Samka profile image
Samka

Thank you Myrddin for your response !! I learned about it last week and was happy to hear it, also hoping that it will be soon approved for CLL.

I tried to get into a trial of Acalabrutinib but they didn’t take me because I experienced AFib with Ibrutinib.

I would like to know if anyone has experienced AFib in Acalabrutinib trials, which is what I’m trying to avoid. Otherwise, for me Ibrutinib has been a wonderful drug with ALL blood levels normal after only 3 months.

Thank you and good luck !!!!

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toSamka

I don't believe they have started a NDA, new drug application yet for CLL, which begins the FDA approval process...

It will also outline how they want to proceed, based on the trial data they have. Could be broad second line or perhaps limited to high risk and patients who have failed Imbruvica (ibrutinib), initially.

Stay tuned...

~chris

Samka profile image
Samka in reply toCllcanada

Thank you Chris !!

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