Relapsing on Ibrutinib: Hello everyone, as I... - CLL Support

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Relapsing on Ibrutinib

Doremefasol profile image
9 Replies

Hello everyone, as I mention here a few weeks ago, my treatment with Ibrutinib is going to end soon due to (Dr. thinks) a mutation. I am going to see the Oncologist in 2 weeks and I have to make a decision which treatment I want to be put on. There are two options open for me. One is Venetoclax and Rituxan, the alternative is a clinical trial with MK1026. Had anyone heard about this new drug (BTK inhibitor), by any chance? I have faith in you!

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Doremefasol
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Justasheet1 profile image
Justasheet1

D,

ARQ531 is the same as MK1026. It should work if you developed resistance due to one of the common mutations. I would expect that you would be tested for these beforehand.

I can’t speak for Venetoclax as I’ve never been on it. I like the idea of exhausting one pathway (MK1026 is for BTK) before using another (Venetoclax is for BCL2).

You will be followed very closely by the Clinical trial team.

Good luck with whatever you choose. Either one is a great choice.

Jeff

Doremefasol profile image
Doremefasol in reply toJustasheet1

Thank you for taking the time. Yes, I would be checked for mutations, but only if I sign in to the study. I live in Canada now, and they do not do any tests for mutations on a regular basis. The medicine is somewhat backwards here in Quebec. Your response is very logical. Indeed, I should think of exhausting one pathway first.

Smakwater profile image
Smakwater in reply toJustasheet1

Interesting Jeff. I never heard of it before.

Googled it - pubmed.ncbi.nlm.nih.gov/300...

Justasheet1 profile image
Justasheet1 in reply toSmakwater

Smak,

It works similar to Loxo. Another non-covalent bonding drug yet to be approved but extremely promising. Loxo should hit the market this year with a FDA approval, I was told. Eli Lily just bought the rights to it .

Jeff

Smakwater profile image
Smakwater in reply toJustasheet1

News we like to hear!

mnmnewtons profile image
mnmnewtons

I could not continue on my first medication, Ibrutinib, due to side effects. Since Acalabrutinib was not yet approved, I took Idelalisib for a little over 1 year. When that failed, I started taking Venetoclax for several months and then added Rituxan for a few months. It worked very well for me but did not appear to clear my lymph nodes. I have TP53 deletion, unmutated IGHV and complex karyotype. As soon as Acalabrutinib was approved, I started on that and it has worked very well for the past 3 years. Maybe until now. My flow tests seem to indicate slightly increasing numbers of clonal B cells. So I am approaching a decision point also. One difference is that I have been able to test for BTK resistance mutations and I am negative.

Doremefasol profile image
Doremefasol in reply tomnmnewtons

Thank you, I will have the BTK resistance test when I join the study. My "second opinion" Doc, recommended the study, like some of you (extremely knowledgeable people) here. Still have 10 days to research, but lean toward the study now.

Nicebaps profile image
Nicebaps

Hi

I'm in the UK. My haemotologist has suggested that I take part in a clinical trial MK1026 to start in the next month or so. I was wondering if you decided to join the trial and if so how you got on with it?

Doremefasol profile image
Doremefasol in reply toNicebaps

Hello , sorry for answering late. Finally, I didn't take part in that study. I was relapsing on Ibrutinib, and the Pharmaceutical Company was postponing the trial. I did not have any choice but to start Venetoxlax. They came back to my doctor after 2 months from a previous set start day and said, they were ready at that time. Sorry, too late .Also, one of the condition was to be off Ibrutinib for prolonged time, before the new meds starts. My oncologist didn't think it would be the best option for me to stop Ibrutinib completely. So, there were many issues. Good luck to you, and please let me know how is it going for you.

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