After Venetoclax: I was diagnosed with cll 1... - CLL Support

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After Venetoclax

Tosti profile image

I was diagnosed with cll 12 years ago. My age is 68. I went through all treatments, more or less, had a stemcell transplant and went on ubritinib 2 years ago. That did not really work anymore when i had to stop taking it for 10 days because of a prostate operation. Then, in April 2018, they started me on Venetoclax. The doses were upped according to protocol, but when i was on 400 mgr after 4 weeks my blood counts went down dramatically, so the dosis was lowered to 200, which I am still on now. Cll is blooming again and my bloodcounts are gradually getting worse. The problem is that when bringing the dosis back to 300 or 400, my blood-count might decrease quicker, but decrease cll. My doctor doesn't really know what to do now. Anyone been through this process or have any ideas?

12 Replies

In what country do you live?

Tosti profile image
Tosti in reply to Yuck

I live in the Netherlands

Can you get to a place performing Car-t?

Tosti profile image
Tosti in reply to Justasheet1

Suppose so, but acceptance is a question; as far as I know Car-T is only available in a restricted trial in my country (Netherlands).

Did the doctor suggest a bone marrow stimulant, like Neulasta?

Tosti profile image
Tosti in reply to Mystic75

No, not yet, but I'll ask. My hospital has done a bone marrow punction to see if the marrow is full of cll, thus preventing blood counts to improve, or that the bone marrow itself is damaged by treatments. If the former is true, they will probably suggest a combination of Bendamustine, Rituximab (or other mab) and Ibrutinib.

Mystic75 profile image
Mystic75 in reply to Tosti

Wishing you all the best, Tosti - please keep us updated on the results and next steps for you.


Cllcanada profile image
CllcanadaTop Poster CURE Hero

Could you be more specific about the treatments you have had? Country would help. Are you seeing a CLL specialist for a second opinion?

It would help others to understand your situation a bit better.


BluMts profile image
BluMts in reply to Cllcanada

His profile says where he lives

Tosti profile image
Tosti in reply to BluMts

My country is the Netherlands. And yes, I have asked my hematoligist to start a request for a second opinion in AMC Amsterdam.

As for the history, I will have to look it up. I know I started with 'wait and see' , followed by lenalidomide, followed by more agressive chemo's (of which I cannot remember the names, followed by a bone marrow transplant (allogene) 6 years ago, which did not completely do the job, started on Ibrutinib about 2,5 years ago and am now on a reduced dose of Venetoclax (200 instead of 400).

cllady01 profile image

Tosti , the following is a rundown of the treatment protocol in the netherlands--dated January 2018. You might share it with your Dr. and ask what is the next move for you. Ask for a consult with another Dr.

Best wishes as you get this sorted.


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