Adding Venetoclax to Ibrutinib : Any thoughts... - CLL Support

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Adding Venetoclax to Ibrutinib

Davidcara profile image
9 Replies

Any thoughts about adding Venetoclax to ibrutinib. Been on ibrutinib since May 2020, with a beautiful response. Thinking about my future and if it would be beneficial to discuss adding Venetoclax with my MD. I sense he would say not at this time, since I have done so well in the ibrutinib. I’m 65, muted, no typically bad deletions. Thank You.

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Davidcara
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cajunjeff profile image
cajunjeff

My situation is similar to yours David. I am on ibrutinib and the original plan for me was to add venetoclax after a year or so. That doctor retired. My new doctor, who is at MD Anderson, tells me on each visit there now that he and other doctors at MD Anderson as of now prefer to wait until venetoclax is approved specifically to be added on to ibrutinib.

At first I was disappointed. Now I think that is probably the best way to go. Ibrutinib may work for me a very long time and there is no rush to add venetoclax, so why not let the science play out and see what the ongoing trials reveal?

Davidcara profile image
Davidcara in reply tocajunjeff

This is good information. I was thinking why rock the boat since I am not having any issues now. Just was also wondering if the effectiveness of ibrutinib wears off, would I had been better to add Venetoclax before that time Thanks Jeff

Smith123456 profile image
Smith123456 in reply toDavidcara

my doctor insisted i stop 5 weeks after i started venclexta. I did and within 3 weeks i started flaring up. I insisted on adding back my imbruvica and my counts started going back down.

a possible issue though is imbruvica and venclexta combo has not received fda approval yet you might not be able to get insurance approval

Oleboyredw-uk profile image
Oleboyredw-uk

Hi Davidcara,

I was (am) on the Clarity drug trial, which specifically tested Ibrutinib and Venetoclax in relapsed patients. I will offer my experience but cannot advise (obviously) as I am not medically trained.

The trial had Ibrutinib for eight weeks then added Venetoclax. The venetoclax ramped up per the usual approach. Ibrutinib was supposed to wipe out some baddies and also is good a flushing out baddies hiding in places such as lymph nodes. The Venetoclax, using a different approach hits baddies real hard, yet seemed to be very light on side effects (none for me).

I was supposed to take the two for two years, but was stopped after 14 months as I had reached the end target .... MRD negative. It was 8th June 2018 when I took my final I+V. My peripheral blood was tested again every six months and in July 2020 I am still MRD negative.

A comment that was made to me was that by stopping early we might be keeping some I/V in the back pocket for later if needed. I liked to hold on to that thought.

I were sitting on Ibrutinib now with a good response. I might take that view on Venetoclax, however, overriding would be my doctor’s recommendation. If he said wait, I would.

I hope this helps, if you hunt back through the forum you’ll find my Ibrutinib / Venetoclax Journey well documented.

best to all, rob

cajunjeff profile image
cajunjeff in reply toOleboyredw-uk

Rob, its awesome you are doing so well. It will be so interesting to learn how long I plus V remissions last. If FCR cures some people, why not IV?

Oleboyredw-uk profile image
Oleboyredw-uk in reply tocajunjeff

Jeff, what I know for me and my profile (including 11Q del) is that in 2012 I had six rounds of FCR, finishing in December 2012. It was obvious that relapse was starting by September/October 2016. So, for me it was, depending when you started counting about three years. I only ever got to CR not MRD negative with FCR.

For me the I+V has given me 27 months at MRD negative so far, so a deeper remission. I'm hoping I get stuck here.

Davidcara profile image
Davidcara in reply toOleboyredw-uk

Thanks Rob, appreciate it

Smakwater profile image
Smakwater

Davidcara,

If by adding venetoclax your objective is that you are hoping to reach UMRD and discontinue treatment, then a discussion with a specialist is warranted.

I would ask the specialist to contrast long term ibrutinib to what is currently known about adding venetoclax to ibrutinib as cajunjeff did, and see what they say.

JM

Davidcara profile image
Davidcara in reply toSmakwater

Thanks JM

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