Hi. I was diagnosed in 2011 and first treated BR in 2015 It came back 2017. I am 8 mo into I and V trial. Blood is great and my oncologist says my ship is sailing and he is very pleased My side effects are another story. I can deal with my fingernail cuts. I can work my way through the muscle and joint pain through exercise but the mouth sores get worse every month. They stay for 9 days This time there are so many and so big I can barely eat liquid food They come with dry mouth and have now affected my salivary glands. So painful. Believe me I have used every bandage from salt water to oil of oregano to Clorhexidine to making my own magic mouthwash Yesterday my doctor took me all the way off of Ibruitinib for a week. I am a person with drive who normally doesn’t give up but the pain is bad and I can’t afford to loose any more weight I am 5 feet and 105 lbs Does anyone think the full Ibruitinib protocol might be too much for a smaller person or should that even be considered?
Catnap7
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Catnap7
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Catnap7, there are Clinical cases of patients having doses of IBRutinib lowered, however, in a trial situation, it is most likely not an option. That doesn't mean you can't possibly have the option--but it may mean you would have to not be in the trial. If you have a local CLL Dr. as well as the trial Dr., perhaps you can ask the question of both of them and get them to collaborate in relation to your situation.
So sorry you are having this difficulty, and hope the Drs. can get you a solution that will work to relieve the pain and allow for your continuation in the treatment or possibly just with venetoclax .
I am on an I+V trial. I was taking 2 Imbruvica 140mg caps per day when I started the trial and continue with that now. Also I initially had come problems with Venetoclax 9at least I think it due to venetoclax and was told that my dosage could be reduced to 3 100mg tablets per day. I suspect the same applies to you if needed. Hope it works out for you.
I think it is very reasonable to think you might do better with a lower dose of ibrutinib. There are some conflicting studies out there, but a very recent study suggests most people do just as well on a lower dose.
I would discuss a dose reduction with your doctor. I took an ibrutinib five day holiday because I was having constant diarrhea and was about to do a lot of traveling. I have done well since I got back on, so hopefully your holiday breaks the mouth sore cycle.
If the dose reduction did not work for me, I would see if my doc could prescribe me acalabrutinib off label or get me in an acalabrutinib trial.
Thank you fo your information Yes maybe he will lower it or maybe a week Ibruitinib holiday will do the trick Interesting how my joint and muscular pain has already slipped away and It hasn’t even been that long since I stopped Ibruitinib. Yahoo !!!
I also had lots of mouth and nasal sores- really painful. The doc put me on B12 shots monthly + IVG infusion monthly. Mouth sores totally gone, nasal sores occasionally. IVG very expensive, but insurance covers cost.
I’m also on a I&V Trial (nearly 5 months) and understand the side effects but thankfully not mouth sores (yet!). I’m wondering if your IgA serum levels (which is heavily implicated in salivary function), are very low? I’m on IVIG and whilst it only boosts the IgG, there’s often found to be benefit overall on infection prevention. It’s helped my dry eyes and mouth.
I’m considerably heavier and taller than you and I sometimes wonder if dosage should be proportionate if the side effects are really severe. Specialists seem to have differing views on this.
Have you had your BMB yet to ascertain progress?
Hope you can find some relief soon and are able to continue your therapy.
Thank you. I don’t know if my IGA is low but will ask them to check it I do know my saliva was thick and stringy a few days ago and now it’s watery. My lower jaws are sore but maybe because I can’t open my mouth very wide My BMB won’t be for 9 mo. I went to urgent care yesterday and he started antibiotics to cover possible infection and then started talking about salivary glands
Anyway thanks for the great info. Do you think it would be bad to use magic mouthwash every 2 hours instead of 4? Thank you so much Catnap7
I really don’t know about guidance on frequency of the mouthwash use to be honest Catnap but I’d be sure to keep your mouth moist at all times. It’s suspected I have Sjogrens Syndrome so I know what dry mouth can feel like and I’m up at least 4 times a night drinking and gargling. These side effects really are no fun but here’s to U-MRD and getting off the meds completely! 😊
I read your message with interest, Catnap7. I was diagnosed with Sjogren’s Syndrome 11 years ago. With that, one has very dry mouth and eyes. I have plugs in my tear ducts, and take Cevimeline (generic for Evoxac), 3 times per day. These capsules increase salivary gland function. It is my understanding that some Sjogren’s patients develop Lymphoma. I was diagnosed with CLL a year ago, and am not yet on Ibrutinib. However, it occurs to me that Evoxac may help patients taking Ibrutinib. An ophthalmologist can run a tear test on you, or ask Rheumatologist for testing re Sjogren’s. I believe that many of the issues related to CLL also occur with Sjogren’s. The muscle and joint pain, etc., with which I have been plagued for many years. Best wishes to you.
A friend who has been on in by for six years just sent me this email below, since I am only on it a little over two months. Thought the part about mouth sores might help.
“Before going on Imbruvica I was receiving blood transfusions about every other week. ONLY irradiated blood. Anything else might cause serious infection.
Until recently you could not receive a vaccination for shingles as it was a live virus (okay with newer vaccines).
If you encounter mouth ulcers, see your dentist and ask for a script for Chlorhexidine Gloconate oral rinse.
It helps with pain & healing.
I’ve been lucky traveling on planes where it seems most sick people congrigate. And I try to stay out of hospitals as they are incubators for every germ imaginable. Imbruvica caused my hair to go wavy.
Interesting. Following the CLL blog provides for great advice. Plus, more effective oral treatments are on the horizon.”
I would hope that being 8 months into a trial that you would be nearing the end of ibrutinib with your WBC having dropped to a level where venetoclax is no longer a TLS risk.
From my own experience, conversations, and study, I would say it is probable that the sores will be much less influenced by venetoclax alone.
May I ask what your ibrutinib term discontinuation schedule is?
Yes. My trial is for 2 years and I must stay on both drugs till the end or if he should let me off of Ibruitinib early he will let me know. Thanks Catnap7
If you must stay on both drugs the full duration, it will be imperative that a remedy for the sores be attained. Hope the trial sponsors allow a dose reduction as a possible option.
Yes I am asking for a reduction when he puts me back on next week
Something has to be done about my mouth. I may be a small person but I eat like a horse. Now I am eating like a bird and the numbers on the scale are going down
I used to use the expression eats like a bird, as a child. Then I read something that said that birds eat up to 300 times their body weight every day. I’ve never gone back to research that. Your post has peaked my curiosity. Now I’ll have to do some research.
Several people in trials have posted about dose reductions being allowed. If your doctor has said that he might let you off ibrutinib early, I suspect that there is some flexibility in your trial. I hope your sores improve and that you find the right doses for you! I would ask about having your Ig levels checked - usually IgA, IgG, and IgM. IVIG, as Newdawn said, will only boost your IgG if it is low, but it can be a Godsend if that’s what you need.
When I first began taking Ibrutinib several years ago, I too developed mouth sores. My hematologist prescribed Valcylovir and took me off Ibrutinib until my mouth sores healed. I was off Ibrutinib for about a month. I have been taking Ibrutinib consistently ever since along with Valcylovir daily without any more incidents of mouth sores.
Yes I generally take Acyclovir (similar drug) for H Virus when having an outbreak. He says my mouth sores a is not H Virus. I am going to ask if I can stay on full time and see if it helps. So glad it helped you
I am on I+V+O study and I recently have been getting really nauseated and dr took me off V for a week thinking it was to much for me. The protocol in my study was go off for a week and if not sick during that week I go back on and if I get sick again after going back on then he can reduce the dose. I had lost weight during the month I had been nauseous. I unfortunately have still been nauseous during the week inhave been off. Not as bad but I have been so I call them tomorrow and see what I’m supposed to do. Hope this helps you! Hang in there you got this!!
Wow, I thought I wrote Catnap7’s posting sometime in 2014/15. I experienced the same side effects from Ibrutinib PLUS... major 3/4 body skin peeling, major GI problems & fatigue like I’ve never expected before and this was with 420mg/day. Presently, I am involved in a dual CLL study of Duvelosib & Venetoclax... once again, the side effects are an absolute bitch! I believe the ‘instigating’ drug is Duvelosib (this drug works... I am in remission!). I was on a study with Ibrutinib and taken off within 10 months. I lost almost 40 lbs while on this drug (155 @ start... 118 after 10 months). Contact your oncologist for an appointment to discuss your Ibrutinib side effects. Regards.
PLEASE PLEASE PLEASE start taking valcyclovir! Taken ibrutinib 2-1/2 yrs & been on 1,000 mg daily for about 2 yrs. Mouth sores were wicked before then! Might have a flair up once every 3 mo or so, but I take 1,000 mg valcyclovir twice daily for a week and it’s back to normal. Tried stopping the valcyclovir for 3 weeks once to see if I even needed it anymore...bad mistake! Mouth sores came back with a vengeance! Good luck!!
The mouth sores led my oncologist to recommend I consider lowering my dose. However, I had seen information about needing so many mg/kg body weight, and since I am a heavier person, I was concerned lowering the dose might mean it wouldn’t be enough.
The oncol pharmacist suggested to her that I try a dexamethasone rinse (swish/spit). You can’t use it for prolonged periods, but they were okay with say a month if needed to get things under control. And maybe a few days a month for flares.
The dexamethasone can cause other issues, so that’s why it’s not a 24/7/365 solution. It does help.
There was also the suggestion to switch to acalabrutinib, but I’m not ready to do that right now.
I also had read here that colchicine, a gout medication, can take care of mouth sores. My oncologist prescribed it and to take at the first sign of mouth sores. It also is not one you can take for more than a few days in a row at a time.
I only tried it once at this point, and experienced some gut issues with it. Enough that I decided not to take more at that time. And the other sores I have had have been mild in comparison.
I will give the colchicine another try if the mouth sore situation becomes worse.
Hang in there. They are miserable to deal with. 😞💕
Also I was skimming earlier and thought you said you were on acyclovir. Then saw a comment about take it every day...
I was told after signing all the paperwork about ibrutinib (almost as an after thought), oh, yeah, there are two more medications you will need to take twice daily while you’re in ibrutinib. Acyclovir is one (400 mg am and pm) and famotodine is the other.
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Dry Mouth! Suggestions welcome!
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