As I told you my brother is in the rump up with venetoclax. Now he is in 100 mg now.
This month he start relapsing his treatment with imbruvica monotherapy. He was 18 months with very good results with imbruvica, but as I said his cll start relapsing.
And his doctors consider add venetoclax. He put 20 mg, and then the second week with 50 mg, he retired the Ibutrinib bit this week his diasease go most fast and increase all the labels.
He went to the hospital and he must be there with medications and one blood transfusion, today another. And give again imbruvica and 100 mg of venetoclax.
The doctor said today that when they put off imbruvica with this low dose of venetoclax sometimes the cll progression is rapidly.
As I said, they put again imbruvica and rump up 100 mg of venetoclax. And will put all the labels ok.
My question is if when he became to de 400 mg it’s possible to put off imbruvica? Or not? They also told when relapsed with imbruvica alone, they said they will add Rituximab to venetoclax.
And very sad, I don’t know if venetoclax 400 mg will be a solution for this problem
All your knowledge and experiences are very welcome.
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Cgr2018
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The good news is that Ibrutinib, Venetoclax and Rituximab work differently, so the latter two drugs are likely to work when Ibrutinib stops working.
Talking to my trial nurse today, patients on a Venetoclax and Rituximab trial have gone 6 years without a relapse. Ibrutinib can still provide some inhibition while resistance develops. Your brother's specialist will need to decide if the value of keeping him on Ibrutinib provides more benefit than risks/side effects.
Thank you Neil! I’m sad because he is in the hospital this week to put all the values ok. He is young 36, and feels pretty well. The doctors say to put all the values ok he naught be in the hospital for a few days. Do you think with the correct medication he will be recover soon? He is always healthy and strong, so I think it’s a moment a recover as well. No comorbities, or other diasease, or other medications!
Thank you for your support! It’s very helpful for me
Your brother's doctor has made good choices in my opinion. Your brother being young will help him. There are other drugs that can be tried if these drugs don't work - Idelalisib which works yet another way. Second generation versions of Ibrutinib (currently trial access only) that work differently than Ibrutinib and a competitor to Venetoclax. He has a long way to go on Venetoclax too - he's only on 1/8th strength of Venetoclax, so it's early days. Failing those there are CAR-T and CAR-NK trials, plus he is young enough to seek a cure via a bone marrow transplant.
Thank you so much! I’m upset for the thinking he can recover from neutropenia and anemia. I read a lot of posts that said that when the bone narrow will be more cleaning from llc, the neutrophils will increase more and more, and also the others rates.
And also he has support with medicines and blood transfusions.
Thank you sooo much ♥️
i was on imbruvica when i started venclexta. after 5 weeks i went off the imbruvica and was just on venclexta. almost as soon as i stopped imbruvica my ALC and WBC started to spike up.
I had imbruvica fail at 17 months and went off it completely, then was given venetoclax in the hospital for ramp up. I also had blood transfusions. The initial three days doses of venetoclax ramp up was required to be done in the hospital. That was one year ago. I continue on venetoclax. I also am on rituxan through the end of this year. After going up to 400mg, venetoclax I soon was reduced to 300mg, and recently now on 200mg venetoclax due to low neutrophils and low white blood count. So yes, it is possible to be off of imbruvica when on venetoclax and rituximab.
I think the venetoclax will work for your brother when he gets up to the full dose. I recently switched from ibrutinib to venetoclax, and my doctor kept me on a low dose of ibrutinib (1 pill daily) until I was fully ramped up on venetoclax so that my CLL wouldn't start progressing. But in my case the ibrutinib was still working for me and able to control my CLL. Maybe not so much with your brother.
I think once he gets fully ramped up the CLL will be controlled. And if they can add rituximab, so much the better.
It is sometimes tricky getting fully ramped up. But once there, he should be good. Good luck!
I relapsed in 2015 on Ibrutinib after taking it for 1 year. I tried it again a few months later and took it at a reduced dose for only 8 days and stopped again because of the bad effects on all of my bloods.
I am now on my 7th month of Venetoclax 200mg with 6 doses of Rituximab, 3 still to come when covid settles down. I am in my 20th year with CLL and was 42 when diagnosed but had it for a few years beforehand.
I hope your brother does well on V as I am sure it will be a good solution for him. He is lucky to have you looking out for him. Wishing you both well and if you want to know more you can inbox me.
Thank you so much for your kind and helpful response! The last week, when he was on the 50 mg they put of ibutrinib, but as a reason of taking imbruvica off, the cll rapidly progressing. So he went to the hospital and the doctors put Again Ibutrinib and this week he is on the rump up 100 mg. They put him transfusions and Neulasta injections. His nodes are very reduce this weeks with 100 mg, and the doctors said today that the blood works are ok, except a little anemia. He felts very well and with energy to go home, so I think this is a very good Sign.
My question is if with 200 mg, and then with 400 mg dose, the cll will be better and better, and the other values started to improve better and better?
Venetoclax seems very promising drug! I also saw that they have approved 4 drugs last 5 years, the same amount approved in 20 years before that, so they are onto something..
Since he is so young it might be worth considering HSCT as soon as he is back in remission.
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