Need to know about any DSide Effects when on V... - CLL Support

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Need to know about any DSide Effects when on Venetalax/ rituximab

roszika profile image
3 Replies

Hi Everyone. Seems I have the P53 gene deletion. I will be commencing on a regime of Venetaclax/ rituximab in late may- will be monitored for 3 days each week for 5 weeks as an inpatient. I would like to hear from people who have been on this medication regime to please tell me about side effects they may have encountered on these drugs. I have been assured that after the 5 weeks I will take a constant same dose of venetaclax and a monthly does of rituximab and I will be fine. Could I please have some feedback on side effects as I am a little bit wary and nervous as you can imagine. I have changed specialist as my old consultant fobbed me off every time I asked for the gene dleetion tests so I have gone over to a top guy at our best cancer centre here in Melbourne and the first thing he did was the gene deletion tests. The previous specialist dosed me blindly on chlorambucil 4 times over the past 18 months, the last time for 9 weeks as I was not responding. My new doctor pointed out this was because I have this P 53 gene deletion. I was gob smacked!!!! as I have been seeing my previous consultant for 8 years- 6 of which were Wand W. I learnt a big lesson from this that when in doubt always seek a second opinion. Anyway if you have some information about side effects I would be grateful- Cheers Roszika.

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Lulu11111 profile image
Lulu11111

Yes, in the beginning I was placed on rituximab for a few months and remembered having a side effect while getting the treatment. I started getting red and itching on my stomach and arms, however the NP immediately gave me benedyrl which cleared it up right away. So she said, always let the nurses know that you had an allergic reaction and she would write it in my chart. I did have a good report for being treated with rituximab bkz I went into remission for a short while. Now, I'm on Ibrutinib and it seems to be working also.

Be Strong!!!!

🙏💖

roszika profile image
roszika

Thanks Lulu for your response, I am interested in the Venetaclax/ rituximab combo that my specialist is going to put me on, the rituximab will be once a month but the venetoclax will be constant. It is a little ironic that your pseudonym is Lulu because when my daughter traveled overseas after finishing her degree ( gap year) some years back, whenever she contacted me I used to say to her"Lulu is that you""- a quote from a TV commercial at the time about the perfume lulu

Korstiaan profile image
Korstiaan

Hi Roszika,

I am participant in the Murano Study. See my post:

healthunlocked.com/cllsuppo...

I had no side-effects at all during this treatment.

Best wishes, Korstiaan

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