First day on Clinical Trial Ibrutinib / Venetoclax

[BCTexas]

I started my first round today on IB. It's been 2 years since I was diagnosed with CLL. I have been on W&W up until now. At first I refused treatment and tried the natural path but I soon realized that although I was keeping my CLL in check I wouldn't be able to maintain this forever. I also received really good feedback from alot of folks on this community. It helped me with my decision and I want to thank all of you for your support. Sometimes we need a little push. I will share my journey with you and I hope i can help others with my experience.

Thanks again and I look forward to someday becoming.. .. MRD negative!!!

BC

[BeckyLUSA]

Good luck! It is a really good drug, and it really works! Here’s to no side effects and smooth sailing!!! Be sure and stay well hydrated!!!

[BCTexas in reply to BeckyLUSA]

Thank you. 😁

[BCTexas in reply to BeckyLUSA]

Will you be able to start the trial again?

[BeckyLUSA in reply to BCTexas]

I had blood work done locally in Monday and one of the three enzymes was completely down to normal, one was only slightly high, but the third was well over the limit. I go back on Monday to see my oncologist and get to the tests done again. Here's hoping. Have to get back on it byNovember 5 or I am off the trial for good.

[BCTexas in reply to BeckyLUSA]

Ok.. I hope it all works out. I'm sure it will.

[PlanetaryKim]

Congrats on your First Day, BC!

kim

[BCTexas in reply to PlanetaryKim]

Thank you Kim

Best Wishes to you

[closh]

Welcome to the I+V lab rat gang!

I expect you'll now get to watch your swollen lymph nodes disappear over the next week and then in month 4 when you add the V, you can see your ALC count plummet. Make sure you drink ridiculous amounts of water when you start taking V - lots of cells die in the first couple of weeks and you need to flush them out.

Plenty of complete responses from this trial and some MRD- results (although it's too early for most of these assessments yet).

Good luck.

Graham

[BCTexas in reply to closh]

Glad to be part of the lab rat gang. The trial I'm on last for 2 years. Seems like forever but 2 years should fly by and hopefully I will be MRD.. Or better.

[pkpayne in reply to BCTexas]

Like everyone else said - be sure to drink at least 2 liters of water a day. I HATE plain water and always drank diet cokes and didn't know if I could do it or not but the woman from the trial suggested I try flavored water and I found that I just LOVE the Nestle's brand called Splash. It comes in Lemon (don't care too much for it), Orange Mandarin, Grape, and Wild Berry. I love all of these and have had no trouble getting it all down. I experimented with all different brands of flavored water until I found this particular one that I can manage. Good luck. Dr. Wierda told me that it would be even more important when I started the V part of the trial in 2 more months to keep drinking that much or more.

[blang158 in reply to pkpayne]

Started CLL treatments 4 months ago and I have been hydrating like mad as well. I was pretty haphazard about it at first and was miserable. At least 2 liters a day and serious improvements in a number of areas. Plain water wore me out, switched to 33.8 oz regular Pelligrino mineral water by the case. My UPS driver is not happy- Amazon is pretty low priced.

[BCTexas in reply to blang158]

Haha I know what you mean.. I drink loads of bottled water too. Now that I'm on IB I'm drinking around 6 bottles... 17oz a day. I occasionally drink Gatorade for something different with flavor.

[BCTexas in reply to pkpayne]

My Oncologist told me the same thing. He said to drink lots of water and when I start the V to drink even more.

Thanks for suggesting flavored drinks.. I do drink orange Gatorade occasionally and sometimes Canada Dry.. But they both have alot of sugar in it. I stopped drinking soda a long time ago.

[CoBubby in reply to BCTexas]

Interesting. The trial nurse told me no Gatorade or flavored or enhanced water or even plain Seltzer, but 1 1/2 to 2 litres of water each day!

[BCTexas in reply to CoBubby]

Uh oh.. I didn't ask my trial nurse if it's ok to drink Gatorade.. I'm glad you said something. I will stop drinking it for now until I see her again.

Thank you!

[CoBubby in reply to BCTexas]

I can understand not drinking Gatorade, but couldn't understand not being able to drink Smart Water or plain non sodium seltzer. I usually take one Emerg C packet mixed with water each day, and was told not to do that either.

[321jump in reply to CoBubby]

Remember that going into these trials POTASSIUM is something that is watched. Many of these drinks contain quite a lot of Potassium

[BCTexas in reply to 321jump]

Good information. I'm only drinking water at the moment.

[SouthFloridaLady]

Best wishes and praying for the best outcome.

[BCTexas in reply to SouthFloridaLady]

Thank you. Love that picture of your dog.

[ap64]

Good luck. Hope you have smooth sailing.

[BCTexas in reply to ap64]

Thanks I'm hoping for smooth sailing.

[CoBubby]

I am waiting to see if I get approved for this. I was a roller coaster of emotions yesterday when told I needed treatment after 2 years W & W. When I wrapped my head around it, only to find another wait period. Guess they need to make sure my insurance doesn't have any clause regarding trials.

I am guessing I will leave Houston today, and have up to a week before I hear. If I don't get approved, I am not sure what will be suggested. Trying not to stress more, and be patient in this new process.

[BCTexas in reply to CoBubby]

I'm sure it will work out for you.

[CoBubby in reply to BCTexas]

I am curious as to how long it took when they first suggested this trial to when you were approved to when you did preliminary scans &bone marrow to when you started day 1 on meds. Just would like an idea of your timeframe.

[BCTexas in reply to CoBubby]

It took approximately two weeks before I was cleared to start the treatment.

[CoBubby in reply to BCTexas]

Well, I 'passed' the first hurdle. My insurance will let me participate in the trial. Now they are checking to see what my co-pay would be, and if I am agreeable to that amount. Then, I guess I need to "pass" all of the preliminary test.

Since I live thousands of miles away, there will be many layers to figure out.

[closh in reply to CoBubby]

It was about 2 weeks for me too. I was concerned about whether I'd be accepted or not as I could have held out longer for treatment. I was told though that I'd be in so long as the scans etc didn't find anything drastically wrong to knock me out (serious heart problems, some other undiagnosed cancer etc).

Graham

[BCTexas in reply to closh]

The window of opportunity was closing fast and I didn't want to miss the opportunity.

I could have held out longer but I didn't. I believe I made the right decision.

Good luck!

[BCTexas in reply to CoBubby]

. I'm sure everything will work out.

[CoBubby in reply to BCTexas]

I am on day 6 if Ibrutinib.

[pkpayne]

I started on my 4th week last night and so far all I've experienced is a little indigestion - nothing too bad but something I haven't had before. I pray that you will do great as well! Keep us posted.

PaulaK in Texas

[BCTexas in reply to pkpayne]

Thank you glad to hear you are doing well. I will definitely keep everyone posted.

What part of Texas do you live in?

I'm in Houston.

[DrEddy]

I was diagnosed in June, went to MDA in July, got approved in started Ibrutinib on September 29, and am now on my second ramp up of Venetoclax.

[BCTexas in reply to DrEddy]

It sounds like we started around the same time. I started in October.

I ramp up to 50 mg next week.

Best Wishes

BC

[Mlock1962]

Dear BC

I am new to this forum, 62 yo male, caucasian, have had Marginal Zone Lymphoma for around 5 years, live in Melbourne, Australia. I have just started a 13 month trial that combines Ibrutinib and Venetoclax, the trial is conducted by Peter MacCallum Cancer Centre here in Melbourne. We start off on 560mg Ibrutinib then in week 5 Venetoclax is introduced, just 20mg to start off with and gradually increasing to 400mg. I am only in week 3 and had no problems with Ibrutinib until a couple of days ago and and am now experiencing muscle and joint pain. I am feeling better already, a growth I had on my jaw has already shrunk, so I will put up with the muscle and joint pain and hope this goes away after a few months. From what I have read on other threads, this is a fairly common side effect and does ease over time.

There is some useful information and tips on this thread, thanks to you and everyone else for posting.

Do you have an update for us? It seems as though you haven't commented for a while.

Regards, Paul

[BCTexas in reply to Mlock1962]

Hi Paul,

Ibrutinib and Venetoclax are turning out to be a really good combination. Im glad to hear you're on the trial. Im sure you will do well. I experienced muscle and joint pain too in the first few months when i started IB. It goes away over time. Almost all of the side effects i experienced went away over time. I feel 100% better than i did before i started the trial. I've reached MRD and am currently in remission after only 12 months. I have a doctor's appointment in two weeks to have another BMB and CT Scan done. After that i hopefully wont have to do it again for another 6 months. My trial ends in November 2019 so even though im in remission i still have to stay on the meds.

Keep in touch and good luck on the trial.

I forgot to mention my doctor is from Australia.

Cheers!

BC

[Mlock1962 in reply to BCTexas]

Hi BC

Thanks for your reply.

Congratulations on such fantastic results!

I am reassured by your comments that all of your side effects went away over time.

I will keep in touch.

All the best, Paul