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
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BCTexas
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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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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).
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.
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.
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.
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Ibrutinib / Venetoclax journey
Ibrutinib +venetoclax
