Not sure you would remember but I posted on here just over 2 years ago after a dreadful experience with FCR. My numbers have been steadily going up and it was decided that I start another treatment. As you can imagine I was very apprehensive after my last experience.
Well, I started Venetoclax just over 2 weeks ago and can’t believe how well I feel with no side effects at all so far. I will have 6 rounds of Rituximab starting in a couple of months.
Hopefully things will continue to go in the right direction and after 2 years I will be free of this disease for a very long time 😃
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Racing1961
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Have you suffered any side effects so far? I’m still on 50mg increasing to 100mg next week. Already I feel so much better, more energy and my spleen has shrunk. If it continues like this I regret not starting it earlier.
I’ve just started on 100mg - the tablets are increasing in size, and I’m wondering just how big they are going to get!No side effects that I feel, no, but platelets are only 45 so I’m having to be extra careful. I started with Obinutuzumab, but they won’t give me any more until platelets recover.
Do they think it’s the Obinutuzumab that’s causing your platelets to fall? I think mine have increased. The only thing that worried me was Tumor Lysis but they are very cautious. I have had my blood checked about 10 times in the last 10 days.
I asked about that, and was told it could be either, but the Obinutuzumab isn’t used when platelets are below 70 odd, while Venetoclax only needs 40odd. Interesting!I had the Obinutuzumab to protect against TLS (I think!). I was told that was the protocol for first treatment, but I see you have had previous treatment.
100mg is as big as the venetoclax tablets get. You just end up taking four of them in a daily dose. I too wondered if I was going to have to a massive 400mg tablet!
I'm in the same place. Severe reaction to OB then started Venetoclax. After 3 weeks, increasing to 200mg tomorrow, my WBC, ALC and ANC are all back to normal (down from pretty high levels). The only remaining issue is that my HG remains low (95). Has anyone else had this experience and if so, when might I expect the anaemia to regress. Alternatively, is there something that I should be taking to get the HG back up? I am also prescribed Filgrastim which I self administer 3x weekly to encourage the bone marrow to get on with it.
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