CLL Support Association

Ibrutinib / Venetoclax (Ramp up)

Ibrutinib / Venetoclax (Ramp up)

Hi everyone.

Well its been a while since the last time I posted. I wanted to share my experience so far on the Clinical Trial I'm on IB with V. I have been on IB now since October and experienced every side effect you can think of in the beginning.. Nothing serious. Muscle cramps.. Burning in my finger tips.. Swollen ankles.. Nausea.. Light headed.. Diarrhea.. Fatigue.. All of this went away . I also experienced a rash all over my body but that wasn't caused by IB it was from taking Allopurinol that I was taking to control the uric acid. They took me off of it and gave me steroids and thankfully it went away.

Yesterday I started Venetoclax and was at the hospital all day. So far so good. As I write this I'm at MD Anderson waiting for results before I can take V again. Sometimes I feel sick to my stomach and feel dizzy but I think its because my body is trying to get use to the drugs. At least I hope that's why otherwise its probably the CLL.

I had a CT Scan and a BMB before I started V and the doctor said he is pleased so far with my results.. My numbers look good!

Best Wishes,

BC

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Thank you for sharing! I’m so glad the side effects have gone away. We are trying to decide between getting my Dad into the just re-opened I+V trial or starting just I. Hearing your experience is very helpful!

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Hi

Ibrutinib with Venetoclax together is a good choice. There are many people on this trial.. I think they told me its up to 150 + and many are getting good results and some like Hoffy are now MRD Negative after only 9 months.

I'm sure your dad will do fine.

Good luck!

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This is so hopeful! Thank you so much! 😊

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Thanks for sharing the good news! Looking forward to hearing more about your experience on the trial.

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Thank you.. It's a long journey.

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Glad to hear it! Don't forget to keep hydrated.

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.. Oh yeah. I'm drinking around a gallon of water a day. I know that sounds extreme but one thing the trial nurse told me is to drink lots of water.

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What is your ALC before and after a few days on Ventoclax? Is should go way down!!

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I don't have the results yet. Dec 1st was in range 28

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BCTexas, That's great news! I hope you do extremely well on the combination Ibrutinib- Venetoclax. Other studies (including the one at UCSD in San Diego) have shown excellent results for this "combo" treatment. From what I've been reading, the future of CLL treatment is in these combination therapies. Some of the results are truly excellent- near 100% overall response rate and even 71% of 17p patients having positive results. I wish you the very best!! G

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Thank you. I feel lucky to be on this trial.

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BC, thank you for your post. I too am on the same clinical trial at MDA( although the Venentoclax won't start until February). Sorry to hear about all the negative side effects from taking I but it looks like that/those are under control now. I would love to hear how things progress if you don't mind.Good luck!

PW

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Hi

I have learned so much on this forum from all of the people before me. I felt if I could share my experience maybe it will help others. I'm glad to help.

If you follow me we can compare notes since we are on the same trial. We are lucky this trial is available and I wish you the best. I will follow you as well my friend.

Best Wishes

BC

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Thanks for the reply BC. I'm new to the forum and not very "tech savvy" so how do O follow you directly?

Thanks again,

PW

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Just click on my name and it will take you directly to my page. Then you will be able to press the +Follow tab. 😁

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BCTexas, I'm wishing you well- and great success in your trials. I spent two years in Austin, Texas and loved it when I was in graduate school at The University of Texas at Austin (1978- 1980). I know Austin has changed a lot since then. When I was finishing up, a guy named Michael Dell was starting to build computers in his dorm room. My wife and I went back to Austin a few years ago to see some of my former professors and had a great time, touring the Hill Country and listening to great Texas music. All the best, G

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That's awesome. Texas is a great State. The water fall in the picture above is from Austin. 😁

I live in Houston.

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Sounds very promising BC, great to hear!

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Thanks.. Hope all is well with you.

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Hope you got over the Venetoclax roll out. I had no issues with Venetoclax until the final ramp up. In my case they went from 200 to 400 mg at the last ramp up. That one triggered the GI issues again. Don’t know if your ramp up schedule will be the same, but if it is, be forewarned. Also my acyclovir was reacting with the drugs so I started taking it at a different time. That has helped a little. Also, watch out for low magnesium and potassium. Venetoclax can cause both of those to decline. Am now taking prescription supplements of both of them, and they too can cause GI issues. But like you, numbers are great and no more swollen nodes. MRD Negative here we come!!

Becky

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Hi Becky,

My potassium has been high. I'm already dealing with IBS and I'm taking meds for it so hopefully it all balances out. Thanks for the info.

Yes... MRD NEGATIVE here we come!

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