Ibrutinib and Venetoclax

[J_88]

Hey Guys,

How long do the novel drugs like Ibrutinib and Venetoclax work for, for CLL?

[Yuck]

An unmet need ..."in the current landscape, is how to treat patients who progress beyond venetoclax. We have important prospective sequencing data; for example, that ibrutinib could follow chemotherapy and venetoclax could follow ibrutinib, but there's no clear strategy for managing patients who have resistance to venetoclax."

This researcher also discuss mono therapies vs. combined.

Source published July 23, 2018:

"Umbralisib Shows Promise in Relapsed/Refractory CLL"

The above only partially answers your question which is a difficult one to answer right now due to individual's varying responses to drugs and ongoing research.

Some people have been on Ibrutinib for years; others may need to discontinue. Results of taking Ibrutinib and following with Venetoclax are impressive with all participants, I believe, reaching MRD negativity at UC San Diego before the end of their current study, which will ultimately compare one group stopping medication at the study's end and one continuing on.

Hope the above is helpful.

[Hidden in reply to Yuck]

Good to know. If Imbruvica stops working for some reason there is another choice for me and many others. Thanks. You're always very helpful.

[J_88 in reply to Hidden]

Hey bluenet,

how long has imbruvica worked for you so far?

[Hidden in reply to J_88]

Two and a half years with no real problems, so I'm hoping I never have to stop taking it. The only problem I've had is with the horrible blood pressure pill!!! BUT, weight loss is the answer and I'm trying! And........I'll ask the Dr. about prescribing another BP pill and see how that one works. They just don't think about the interactions between a cancer drug and the BP pill, etc. etc. Oh well.

[J_88 in reply to Hidden]

Good to hear bluenet hopefully it works forever.

[Hidden in reply to J_88]

How long it works is something I don't know. Not sure if anybody does.

[BeckyLUSA]

Those of us that are in the Ibrutinib/Venetoclax Trial are looking forward to the answer. As my doctor tells me when I ask him, “we just don’t know yet”. Some are cautiously using the word “cure”.

We shall see!

BeckyL USA

[closh in reply to BeckyLUSA]

The aim of Becky and my V+I combo is for patients to get to MRD- and stop treatment. If we relapse, V+I should work again and so maybe people can use this combo for periodic treatment for a long time (ie until we drop off the perch from old age).

This is different from becoming resistant on continuous treatment as you need to try something else then.

Graham

[J_88 in reply to closh]

Great answer,

Thank you

[zaax]

They don't know CLL is different for everyone. People who were put on it at the start are still here. So no one knows

[Hoffy]

I am on the Captivate Trial out of UCSD. I did Imbruvica then Venetoclax for 14 months. I got to MRD negative in the BM. Now I am on Imbruvica or a placebo. I am 99% sure it is a placebo. ( the side effects went away- finger tips, stomach, most fatigue).

I am Unmutated at 17P deleted and trisomy 12 so these results are very good so far.

So your question is hard to answer. Hopefully our remissions will be a long time but if not the drugs should work again.

Hopefully these new combo's will be the standard of care. Knock the CLL way down and then wait until needed again.

Be well,

Hoffy

[17Pisme]

I am 17P, Tp 53 and SF3 (trifecta winner) and Ibrutinib worked well for almost 4 years. I am now on Venetoclax and hopefully this will last long enough for the next "miracle drug" or procedure to be perfected (i.e., CAR-T). As others have stated, CLL is unique to the individual and 4 years of remission for one person might be 2 years for another.

[J_88 in reply to 17Pisme]

How long have you been on the Venetoclax for?

[17Pisme in reply to J_88]

3 months. So far so good. I have none of the side effects (skin bumps, irritations, rashes, staph infection, bruising, etc.) that I had continuously with Ibrutinib.

[J_88 in reply to 17Pisme]

Good to hear, do you take it by pill form?

[17Pisme in reply to J_88]

Yes, pill form. I should mention that due to the gap between going off Ibrutinib and the Venetoclax ramp up, I needed weekly Rituxin infusions for 4 weeks straight and continue the 6 month regimen per the Venetoclax protocol.

[J_88 in reply to 17Pisme]

Do you live in Canada? are the pills free?

[17Pisme in reply to J_88]

I am in the U.S. and go to MD Anderson for treatment. In the U.S. those of us over 65 are on Medicare, which is a senior government benefit which pays for my meds and treatment.

[J_88]

Oh ok, So you have the 17p deletion mutation?

[J_88 in reply to J_88]

And you have the Tp53 deletion as well?

[Cllcanada Top Poster CURE Hero in reply to J_88]

17 p means you have a damaged or missing TP53 gene and the second one is usually mutated or not functional in those cases...