I've been lurking in CLLSA for about 3 years without introducing myself, mostly because I was high functioning and very active outdoors. Dx was at 50 (doc thinks I had it younger, now 54) and I'm finally at the point where I need treatment. Nodes in my neck are so swollen I can hardly swallow food, Red count 147, trisomy 12, just started losing more weight than normal last week. Extreme vertigo and now couch bound fatigue. My Onc wanted me to hold on as long as possible and now it's time. My doctor is Dr. Danilov at OHSU, he's a researcher and is putting me in a drug trial this Monday on Gazyva. Has anyone else tried this drug and what kind of side effects have you experienced? It sounds highly hopeful to return me to a very active state in a short period of time, very excited to get going on this. Thanks, sending positive thoughts to all of you in your battle, keep soldiering onward as you deal with this bizarre disease. No one understands what you are dealing with when you look normal, not even my hubby. Smile and stay strong!
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ChrisLovesLife
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Are you going to just be on gazyva? I agree our supporters cant tell how bad we sometimes feel because we may look normal so they cant empathize. Curious why your doc wanted to hold off as long as possible? Maybe for new drug approvals. Good luck!
Thank you for your reply newyork8, there are 4 arms of treatment, I don't know what I'm getting yet but should know in the next few days. The investigators for the study will assign the treatment based upon my vitals and symptoms. He asked me to hang on as long as possible because treating too early can bring on other issues, he's always asked me to push through symptoms until I take a turn for the worse because he wanted the Gazyva study to bring in more data with time. Now they are rushing me in and this will be my first treatment. Hope you are feeling as good as possible!
Hi, I wish you luck with your treatment, I start FCR in April because my lymph nodes are enlarged particularly in my neck, I also have had vertigo so it was helpful to read somebody else with same symptoms because I couldn't understand why I should get it. This site is a mine of information and don't know how I would have got by without being able to visit here for advice.
Thank you sallyplest, I wish you very well also! My vertigo has been crippling at times and my neck appears to be almost as wide as my head now. I agree, this site brings much comfort, especially knowing there are others out there experiencing the same things. All my best to you.
Not having had any treatment I cannot comment really, but just wanted to send good luck wishes, hope the treatment goes well and you are back to fitness as soon as possible.
I had gazyva as a single arm treatment. I tolerated it very well. I did not feel great for the first six weeks or so but kept up with most of my activities - however after that I felt much better. My white count and nodes were in normal ranges after two weeks - but it also took a hit on everything else too - rbc, platelets and neutrophils were also too low but gradually came back. Last treatment was august and my numbers have been perfect so far and the only thing I am still dealing with is the extra weight from the steroids.
Thank you so much for the information and sharing your experience RuthBorch, this is invaluable for so many of us. I'm extremely skinny at 5'6" 102 lbs so if they are administering steroids hopefully my old clothes will fit again. I know it can add an extreme amount of weight so I hope your battle isn't difficult and that you feel happy and healthy, quality of life gives you an excellent summer!
Get ready to feel soooo much better! It has long lasting results too. The only problem were some weird symptoms around the time of infusion but nothing too bad. I think the Decadron they give you was more annoying than the Gazyva. Good results and it works quickly.
I love your attitude janicelee! Thank you for sharing as well. I am excited to start and these type of comments reinforce that. If you have time, would you mind sharing what the weird symptoms were? I've heard flushing, rash, tiredness are the top 3.... all the best to you!
Hi Chris, first your symptoms sound like mine before I started Ibrutnib. You get so used to sticking it out that you put up with symptoms that are really hard. You don't realize until you get better what you have been dealing with. Especially the choking and not breathing correctly from the huge neck lymph nodes.
Ibrutinib helped alot, 6 months later I got Gazyva which made things almost normal. I had to stop Ibrutinib in Novemeber due to cardiotoxicity and I am still ok. Dr. thinks it was the Gazyva and that it could give me two years remission from when it ended last January 2016. So we will see how long the effect will be.
Side effects were mainly from the Decadron, feeling agitated and not being able to sleep for three days. But that was worth putting up with. I also had a weird tightening in my forearms every night after getting home from the long day. (They put it in over 5-6 hours), but you sleep for part of it because the IV Benadryl knocks you out.
Over the six months I really could tell that I was feeling better and stronger. I would definitely go for it.
Thank you richutchens! Fabulous! This is what my doctor thinks will happen with me and I'm going into this believing it. Thank you for taking the time to reach out, get out there and live! Grateful for your response, we will see this conquered in our lifetime!
Hello Chris.
I am also at OHSU, but with Dr Spurgeon. I completed my Gazyva-only treatment Just about two years ago. I found it very easy to handle and my CLL symptoms cleared up quickly, although mild fatigue persisted for a year or so. I reached MRD negative status and doctors were very pleased Most interestingly, I also enjoyed nearly complete relief from years of rheumatoid arthritis
I had told my doctors that the RA had much more serious impacts on my quality of life than my CLL at that stage, so I have been extremely happy with those results.
However, my WBC and lymphocyte counts are now again climbing, and some nodes are just now beginning to show themselves. If accepted, I may be joining a study combining Gazyva with entospletinib at OHSU in a couple of months.
Good luck to you. I hope that your treatments go as easily for you as mine did!
Thanks so much EjonK, I appreciate you sharing your experience which sounds exactly like what was explained to me, short of the entospletinib. Dr. Danilov eluded to a secondary new drug trial coming that he is very excited about and that must be it. His goal is to make this disease routine to manage such as with diabetes! Maybe I'll get to meet you during my study, starting Monday I'll be up there routinely now. All the best to you!
Hi. I have trisomy 12 also, for 2 years, no treatment yet. Don't know about Gazyve but writing to wish you all the best and every success through treatment back to your old high functioning self.😁
Thank you Jiggs17! I went for quite some time, possibly 7-8 according to one of my doctors and I was told it had something to do with the trisomy 12 so I hope that is the same for you. My Oncologist/Researcher/Investigator at OHSU thinks there are going to be so many new targeted treatments coming out that by the time they treat you there might be a cure or a maintenance medication. Incredible stuff, thanks for the well wishes!
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