Imbruvica withdrawl symptoms?

[Lancerlady]

Imbruvica withdrawal symptoms? I have been instructed to come off my Imbruvica due to some issues I was having bleeding tongue, burning sensation in my throat and mouth all over, high blood pressure; my sugar levels were high and I have NASH so the liver numbers were up as well. So they wanted to take me off since my numbers were somewhat stable last time. It also didn't do what we had hope which was to shrink my 22 cm spleen. So in light of all this, I have had horrible nosebleeds like at 20 minutes at a time at times with huge clots coming out. I have tried everything. Afrin, flonase, etc. Gauze, nothing helps. Last night I felt like I had the flu. I got my flu shot in October. I felt like I did before I was on Imbruvica. I have stage 4 cll. I am scared and read that coming off Imbruvica the rate at which you can survive is possibly 8 months? I know the doctor may have meant well, but IDK. They were thinking if my numbers are stable in a month then I wouldn't need treatment at this time. It was wonderful news at first. But now these symptoms and especially with covid how do I know? I am waiting to hear from my doctor. My face is swollen and my stomach hurts. My leg is very swollen and looks like I have cellulitis again. Having a tough time. Has anyone else experienced this? I have researched this website and found old topics on this but I want more recent discussions.

[SofiaDeo]

Hi, sorry you are going through this. Among other things, I too had horrible nosebleeds on Imbruvica. There are other treatments available for CLL, it's just your docs have to start somewhere. Your staging isn't critically relevant; I was Stage 0 at diagnosis but because of my markers (I have the "bad" 17p del plus TP53, and unmutated IGHV) treatment was recommended. I think at least 1 other person here was Stage 4 and on Watch and Wait for quite awhile. So it is your symptoms, labwork, etc. that generally determines the need for treatment, not the staging. Continue to inform your docs of your symptoms & try to stay calm, it's hard but stress doesn't help our bodies. If you could fill out your profile a little more so we know at least the country you are in, its helpful. Do you know your FISH/flow cytometry results? I don't recall any side effects when I stopped Imbruvica, I just had what I felt were my CLL symptoms. I recently stopped another BTK inhibitor & had an extremely odd lab report, but a followup from that one showed the status quo was back to where it was (lowish platelets, mild anemia). Please keep calling your docs if you think your cellulitis is coming back, it IS the holidays, messages may not get delivered as quickly.

[cllady01 Former Volunteer in reply to SofiaDeo]

Sofio, to see a member's profile page (Lancerlady her country listed on her profile page) click on user name/icon of the member.

[WinJ3]

HI Lancerlady. My heart goes out to you on this holiday season. I am glad you took the flu shot. One thing you should rule out is Covid. I am sure glad you'll be seeing a Doctor soon.

Win🙏🏾

[cllady01 Former Volunteer]

Lancerlady, I have not had your experience, however, going off Ibrutinib can be accomplished with the Dr. monitoring your blood work.

Your situation right now does call for a rest from what may be causing all the swelling and bleeding. It appears you Dr. has decided it is the Ibrutinib.

I am not sure how long you have been on Ibrutinib, but the longer the better as far as time for another treatment. Are you seeing a CLL specialist and has the Dr. said he will be monitoring you closely? The symptom that will most likely be occurring is increased absolute lymphocyte count (ALC ) which would indicate progression of the CLL.

Since your spleen has remained the same size, I am guessing you haven't been on Ibrutinib very long. But, I could be wrong, of course.

You are better off not staying on Ibrutinib with the continued bleeding. There are other BTKs that are approved and that have fewer and milder side effects than Ibr.

The most recently approved is Zanubrutinib. Talk with your Dr. about what might be next treatment, to give you time to consider the differences of the next possible treatments. There is also Venetoclax which is a different class of treatment.

healthunlocked.com/cllsuppo...

Depending on your CLL profile which is important--what your deletions are, are you mutated--, that information that the Dr. has and I hope you have for your own records is what treatment is based on and time to treat is based on your bloodwork done regularly to show trends. And also, any co-morbidities you may have are included in the decision process.

Best wishes for some healing to take place quickly so you can feel better.

[Lancerlady in reply to cllady01]

Hello, Yes I do have a specialist. I was urged to see one by my other oncologist I had. Right after Covid hit it seems our healthcare system got hit locally too. Meaning alot of nurses, and doctors I had relocated and moved due to downsizing or other reasons. My oncologist I had for 5 years left and I was heartbroken. He stayed the course. I was diagnosed with stage 4 cll/sll in August 2019, I believe I had it longer and was misdiagnosed with something else. At first it was watch and wait. For the longest they couldn't figure out what it was. Since I had my thyroid removed in 2015 my health has been declining. They found a 3.5 cm nodule lodged behind my trachea windpipe, it was benign but I was told if anything else came up I would be in trouble. Most doctors kept implying it was all in my head and kept me on antidepressants which helped but didn't solve my real problems. I eventually found a great primary doctor who stayed the course and did every test you could think of. I am not a "numbers" type of patient. Meaning my thyroid levels could be perfect, but I still felt awful. So I am on armour thyroid now. I am very sensitive. They put me on NPLATE to try and raise my platelets and steroids but I had a horrible reaction and ended up in the hospital for a week from the NPLATE. I also have severe copd with emphysema and am on constant oxygen and have a cpap at night hooked to my oxygen. I have a nebulizer, etc. I have Stage 3 NASH with minimal cirrhosis. My spleen is enlarged to 22 cm. I have had my nose cauterized so many times the ENT told me no more because I had to get to the underlying reason. And I just got a new Oncologist that took over my care. He barely spends 5 minutes, he won't even feel me when I tell him I found a new lump, I am about to ask for a new one maybe. He did a ct scan and bone marrow biopsy again. he just said it was "unremarkable" . I had initially started off on 420 mg of Imbruvica because I was getting sick all the time with infections and flare ups from copd, and my wbc's were so off and lymphocytes. My platelets stay in the 30-40 range if it's at 55 I am having a good day. Then I had some reactions then so they cut it down some (Imbruvica). Then I had an issue with insurance so after that got straightened out they cut it to 140 mg. My biological father has the same type of cancer, same stage and is on the same treatment. He is down to one pill a week. My specialist agreed with my doctor to cut out the Imbruvica for a month to see if my numbers are still good I may not need treatment at this time. But the pain in my leg by my groin area where the cancer is there really hurts alot of the time. I am on palliative care and they have me on diladud and other medications. I work part time from home so sometimes it's hard to be on the medication. I do unemployment benefits for the Texas Workforce even though I am from the Memphis, Tn. area. I am on disability and pt is all I can work. My CLL specialist is in Nashville. Thank God I don't have to drive up there right now thanks to Covid for Tele health appointments. That's about the only positive. I have insomnia alot over pain. As a matter of fact, I can't sleep right now. I know what they mean about the stage etc. I am having stomach problems now and can't stay of out the bathroom. However, I have so many other comorbidities that it is scary for me. My system is shot and I am sensitive to alot of medications. I was on a liver trial for my NASH and that went well but my liver numbers are high now and my sugar is high and I don't have diabetes and my blood pressure is really high and I'm on two different kinds of BP medication. I am only 55 we have a 14 year old miracle child I had 4 days before my 41st birthday. They think it is the Imbruvica. I had gotten pneumonia back in May and had to have a platelet transfusion, iv of fluids and antibiotics. I almost wonder if I had Covid and it turned into pneumonia this one felt different. I have been around a couple of people whom I found out later who now have covid. One of my dear friends, her breast cancer is out of remission and she contracted Covid and I spoke to her the other day. Makes me think I should get a test again. I have a great relationship with my primary so I will call him see if he can give me Covid test and run some blood work. I don't see my oncologist until the 15th of January. When I called to see his opinion about withdrawal symptoms His response was to see an ENT about the nosebleeds. My specialist, however, said he has heard of Imbruvica causing withdrawal symptoms. I'm going with what the specialist recommends. They wanted me to go to er to get platelets checked and get tested for Covid and asap get the vaccine when available for us. I will see first if my doctor can do that, the er is the last place I need to be. Our covid cases are up in the Mississippi area. I live close to the border line of Memphis, Tn. I am a musician and it is making it hard for me to play with all of this going on. Sorry for going on. I am so glad to have found this forum to help. I am thinking of doing a podcast about our experiences. What do y'all think? From a patient's perspective.

[Lancerlady in reply to Lancerlady]

I do have my own records I will see what I can find about the questions you asked.

[winterwild]

I came off Ibrutinib in 2015 and I am still here. Have been on a few other medications since then, B/R, Venetoclax and now Acalabrutinib which is the newer version of Ibrutinib. I hope your Dr can find something else for you. I usually have nose bleeds when my platelets are low. I am in my 21st year of being diagnosed with CLL and started treatment 1 year in. Prednisilone has helped me at times between treatments.

[Lancerlady in reply to winterwild]

Wow that is amazing. Thank God you are still here. So it is true you can live a long life with this. Thank you for the encouragement!

[Doggoneit101]

I was on Ibrutinib for a year and do not recall having any withdrawal symptoms when coming off. I am stage 4 CLL/SLL also. I am currently on Venteclax and numbers are all in the normal range. 😁 So glad I got pulled off Imbruvica, way too many quality of life side effects for me. Many wonderful treatment options these days for us. Keeping you in my thoughts and prayers.

[Lancerlady]

I'm glad to hear that. Maybe it will calm down some here. The nosebleeds are the worst. I work on the phone from home and it's hard to work when a 20 minute nosebleed comes pouring out. I have my gauze handy.

[Lancerlady]

Thank you for responding and congratulations on finding the right treatment!