i'm starting ibrutanib tomorrow. initially they are starting me at a low dose of 240 mg. maybe due to my age and co morbidities? ( i already have significant high blood pressure i can't imagine what will happen after i start the ibrutanib? i'm hoping that since i'm on a ton of blood pressure meds already maybe some how i'll be protected?i'm going to be working as hard as possible to exercise and lose weight but since i already have mobility and knee joint issues that may be rough. i am most worried about bleeding i take nsaid every day due to joint pain and i mentioned this to my doc and he said it would be ok to continue taking it but i went onto the ibrutanib adverse reaction info and i'm pretty scare to do that. i don't want to get a stroke but i'm pain every day due to joint probs and tylenol is a joke re that. i also worry about a fib since from time to time i've had benign heart palpitations that i've been worked up for that have not been shown to be pathologic. the diarrhea would be a drag but thats scare me as much as stroke or heart attack. what ever you can do to reassure me would be great.
starting ibrutanib tomorrow bleeding AFib worries - CLL Support
starting ibrutanib tomorrow bleeding AFib worries
I started ibrutinib almost two years ago. My bp was always borderline high, ibrutinib kicked it up about 20 points to where I needed bp meds. That has not been that big a deal and I am on full dose ibrutinib.
My worst side effect has been mild to moderate diarrhea, which has been tolerable and usually responds to Imodium. It’s actually gotten better with time and been a while since I have taken anything for it
All in all, ibrutinib has been a relatively easy drug for me. I wonder why they wouldn’t give you acalabrutinib with your concerns about your bp and all. I think the cardiovascular side effects with acalabrutinib have been a bit less than with ibrutinib.
Good luck to you. I feel quite fortunate to be able to control my Cll with a pill a day. Everyone is different with Cll, but I think you have good reason to hope you will tolerate ibrutinib and do well on it.
that was the first thing i asked my doc when he said he wanted to start me on the ibrutanib. whqat about acalabrutinub? he says that the reason that the acal appears to have a safer side effect profile is that we don't have as ,much data on it .....although i did more reading about a cal and its supposed to be a more specific target but i didm't know the details when i spoke to him to counter what he said to me. i'll give it a shot but i'm nervous. either way. nervous to try and nervous to not try because of my very scary markers and mutations. he said take your bp twice a day and if you see it going up call your cardiologist and get him to rx you more bp meds. there's always something more they can do.....maybe? i'm on so much already.....not so sure about that!
Yes your doctor is right that there is less data on Acalabrutinib than Ibrutinib, but after reading the reference below and given your valid health concerns, I think you have very good reasons for opting for Acalabrutinib.
healthunlocked.com/cllsuppo...
Disclaimer. I'm on am Acalabrutinib trial. From what I've read, it does seem to come with less off target effects, including less (perhaps negligible? joint pain) than Ibrutinib. I'm not sure how much cardiovascular side effects will be reduced long term compared to Ibrutinib. That's not of particular concern to me personally, because I hope to achieve a long remission after taking it with obinutuzumab and venetoclax in a limited time treatment protocol. We shall see. Some can take Ibrutinib with little to no problem with side effects.
Neil
we'll just have to wait and see. he did tell me to closely monitor my bps and write a log of them....so he realized i may very well have issues. i think i'll take my pre ibrutanib nighttime bp now. 15 min after taking my nighttime meds for consistency....will try to take some time each night
I would call AstraZeneca and get them to provide info or talk to your doctor. About 3 years ago my father's doctor was going to put him on a drug made by Amgen. It wasn't clear to me the benefits. I called Amgen headquarters and eventually with much patience got to the researchers responsible for the drug. They enlightened me on the drug. We also discussed competing drugs. I was able to make an informed decision.
I have been on Acalabrutinib for 5 years. I have never experienced any of the side effects discussed here. It is a second-generation drug that is more targeted and as a consequence should have fewer side effects. I can attest to that. Both drugs' development was overseen by the same researcher.
Also, I think there is a "first to the market advantage" present. The first-market advantage allows a company to establish strong brand recognition and product/service loyalty before other entrants.
I also have comorbidities, including high blood pressure and taking medications to control it. I started 280mg ibrutanib last year as a maintenance and so far it’s been good to me. It did cause my blood pressure to raise a little, but not enough to be concerning. I am also trying to lose some weight. I use an Elliptical because it’s easier on my knees and feet.
When it comes to CLL, everybody is different. One of the best thing you can do is get an opinion from a CLL specialist. Best wishes for you bachplayer13.
Win
You might get a second opinion about the nsaids. I have been taking ibrutinib for almost 3 years with great results and almost no noticeable side effects. But it does take longer for any cuts to stop bleeding and bug bits and sores to heal. Nothing extreme, just a little longer. So I do avoid anything like nsaids and fish oil that might add to the blood thinning issue. But I also don’t have joint issues. So tough call. I’m not sure if acalabrutinib has a similar effect.
Interesting re opinions on taking NSAIDs including aspirin derivatives while on Ibrutinib .
I was told very firmly when I started Ibrutinib that I was to avoid any of them due to the possible bleeding risks.
Hi. No expert here by a long shot, just an average CLL patient, but want to share my info.
First, my oncologist (ONC) was going to start me on Ibrutinib (IB) 420mg, but her office had hired a full time pharmacist who lowered the dosage to 280 mg. This was because of one of the blood pressure medicines I was currently taking. Could be the same reason for you, but you should ask your ONC.
Second, side effects for me were disastrous. You mentioned all three of the problems I had. You already have joint pain. Almost immediately after starting IB I started having joint pain. It would show up in my hands and knees. Only lasted a few days then I would be okay for a few days, then it would show up again.
You mentioned being concerned about bleeding issues. I had a Baker's cyst burst behind my right knee, and blood filled my whole knee area and locked it up and caused excruciating pain. My ONC stopped the IB immediately, but to me it was too late. I spent four days in the hospital for pain management.
And that brings me to another concern of yours, afib. When I went to the hospital, the pain and trauma of getting me there caused my pulse rate to spike to 160 and my heart went into afib.
Took a few days before they were able to bring things back to normal with my heart and the pain. Took a month of rehab on my knee to be able to get around in a normal fashion. and I am on two more heart meds to keep the afib from returning.
All this and I was only on IB for 6 weeks!
I don't want to scare you. I think most patients have a much better experience than I did with IB. I am better now, and am back in a watch and wait routine, and IB did help my numbers. WBC count was about 70k going in, went up to about 130k within the first two to three weeks and then started going down. My first blood test after leaving the hospital showed a WBC of around 17k, so much better. My platelets are in the normal range, after getting a little low. I can't feel my spleen on my side anymore. Going back in early Feb for another blood test, so will see ...
Dave
i appreciate your candor! i also have bakers cysts huge ones in both knees i've been in pt for a year already to rehab. i skipped my nsaid for a day but my joint pain was pretty bad so i took some this am and said a prayer. i'm on 240 ibrutanib but i'm also on some tegretol which inhibits the effiecay of the ibrutanib. i'm titrating off the tegretol as best as i can. so far i have nausea and some dizziness and the joint pain is the usual osteo aches and pains as best i can tell,. nothing extreme. saying a prayer on this one,.i specifically asked my doc about my nsaid meloxicam. the mda pharm checked it and said i could take it. but i read the warnings about bleeding and it scares me. i'll be vidulent and be on the lookout for signs of this. i go back in 2 weeks for re check
When I started Ibrutinib 2 1/2 years ago my platelets had dropped to 70. They increased very gradually up to the 130 range which was still low but about the same as during remission. I was already on anti-hypertension medication. My BP gradually became less well controlled. In October my new GP diagnosed afib and referred me to a cardiologist. I am scheduled for Cardioversion Friday. I still have afib after my oncologist stopped the Ibrutinib 11-5-19. He is not replacing the Ibrutinib with another medication and is monitoring my CLL status with flow cytometry every other month. So far so good.
Best wishes.
so sorry to hear about the afib! were you having noticeable symptoms. like flutter heart beat feeling? what did a fib feel like exactly
I have had no noticeable physical sensations. I was running 1+ miles 4-5 times a week and feeling good until the doctors advised me to stop. Still walking though.
I have been dealing with a mountain of issues from Imbruvica and Calquence for the past 10 months or so. After being on the drug for 8 months and having several different issues, I developed some cardiac problems and was off the drug for 10 days. I had developed a junctional arrhythmia and was having blood pressure and heart rate swings. I started Calquence (Acalabrutinib) and my issues reoccurred, with at least as much vengeance as before. So, after all of these years, I am just turning 65, with no cardiac problems whatsoever, I now find myself having to see a new vascular guy to try and figure out what is going on. Clearly, I am impacted by the nature of the BTK aspects of the drug which inhibit an enzyme which controls heart function. I have stopped taking all of the drugs until I figure out whether the cardiac issues I have are short term and will resolve or if they are going to be with me for a longer term. I have had a TON of side effects from these drugs, which isnt unexpected because I was on a clinical trial in 2014-15 which included Idealisib and I was seriously ill for 9 months on the drug. I shouldn’t be surprised by the side effects of Imbruvica, but I am surprised that it was mainly secondary infection (cellulitis), arthralgia and other issues which were the problems. Proceed carefully and start low dose would be my suggestion. I was on 420 mg of Imbruvica from the get go. I would also have an agreement with my physician that we would agree that I would stop the drug if I had any series issues occur. Feel free to private message me any time to discuss in more detail.
thank you!! i am on 240 mg to start which is a good thing i'm sure. plus i'm on tegretol which reduces the efficacy of the ibrutanib . i'm needing to titrate off the tegretol asap, so i'm not feeling many side effects yet other than mild nausea and a bit of hypertension. we'll see what happens once i'm completely off the tegretol. that may be another story.
Starting on low dose 280 imbruvica is a good start. But taking ibuprofen is really not a good idea. Are you seeing Cll specialist? It might be a good idea to get second opinion from a CLL Specialist. Seeing CLL Specialist before you start treatment is very important. Also aclabrutunib may be better choice.
I have been on Full dose treatment for 2 1/2 years Who is negligible side effects. But what I have done for inflammation and joint pain due to arthritis is use 1800 mg CBD cream applied to the inside of my wrists in the morning to start my day with prayer as well. LOL then again in the evening. Expensive but worth it for me it has taken away 80% of any joint pain and the only time I have a reaction is when the weather changes severely. I also have done reading on eating for your metabolism and have changed my food program to exclude certain foods that cause information. It might be in your interest to research these things for yourself. Good luck to you I am very fortunate that I can just take a pill every day and live fairly well
Inflammation
Get an Apple watch it will tell you if your in AFIB. It saved my husbands life
I think you raise a lot of valid questions and concerns regarding Ibrutinib in your case. It is a fairly well studied medication with great outcome data. The side effects mainly platelet inhibition, joint discomfort and atrial fibrillation are, however, real. You will get platelet inhibition with acalabrutinib as well so NSAIDS might not be advisable either. I don’t know your age but atrial fibrillation is a true concern with a risk of 10% at the age of 70 and 15-20% at the age of 80, but likely higher in the setting of hypertension. With your history I believe acalabrutinib might be the better choice despite having not as long a follow up as Ibrutinib. I have been on acalabrutinib for over a year in the setting of a trial and had some bruising and hematoma
when my platelets drop below 50K. No joint pain hypertension or palpitations. I would make an effort to document your palpitations with long term monitoring (30 day event recorder or implantable loop recorder) if this is possible for you. If atrial fibrillation is documented I would view Ibrutinib as relatively contraindicated.
Best
Heiko
thank you!!
i am 62 years old. doc said that i'm young and he wasn't that worried about afib but that if my heart seemed irregular to stop the ibrutanib and to call him.
Hi, have you got another drug to replace the Tegretol? I have been given another drug instead. Its taken a while to get the dose right but Im ok at the moment.
I am the same age as you and have a lot of pain in my joints and instability in my back from degenerative disc desease. I have taken Naproxen and omeprazole to control the stomach acid for several years but stopped when I began Ibrutinib.
I have been taking Ibrutinib for 6 months and my white count is normal. I was confident until I was told I was anaemic. It seems I may have internal bleeding and I need an endoscopy. Im hoping the iron tablets make me feel better because I have trouble keeping awake.
The agonising pain I had when I began treatment has improved but even though I take pain killers my joints are painful.
Im glad I stopped the anti inflammatory because I may have an ulcer but I understand the pain. Anne uk
anne:
what do you take for joint pain? at my peril i've been taking meloxicam a nsaid which is rx'd and easier on stomach; i take it every other day instead of every day as an attempt at a compromise to ease my fear and pain both. my doc at md anderson who i asked specifically about my worries about taking it and bleeding said it would be ok but i worry. i am anemic right now, though i became anemic before starting the ibrutanib. i am returning to see him in 12 days time. i am weaning off the tegretol i take alot of it 1000 mg every night but i'm weaning off 200 mg each week. i wonder if some of my headaches and blood pressure issues could be related to the wean in addition the ibrutanib itself. what do you take in place of the tegretol? i have alot of degeneration in my mid back and pain really bothers me especially if i walk which i do enjoy. my knee pain is bad too but i have significant osteo arthritis in my knees. my lymph nodes are getting pretty large in my neck, side of my face under my jaw under my arms, in my groin. that coupled with the anemia and the fact that i have high risk markers may have made him decide to treat me. my wbc # are quite fine. that will change from the ibrutinib. but that's how its supposed work. i think he should add venetoclax too but he said let's take it one step at a time. but given my markers i'm at high risk of a richter's transformation. he knows that too. oh well. one day at a time. trying to hang onto my job. its hard. my blood pressure has resulted in horrible headache's i've had to go home last two days.
I take Levetiracetam instead of the Tegretol but was already taking Lamotrigine for Epilepsy.
For pain I take Tramadol prolonged release 400 mg daily and amitriptyline 10 mg at night. Its sounds extreme but the pain relief was gradually changed over the years. It takes time to get used to the effects of strong drugs. I cant manage without them and it was a choice of being in pain and unable to function. Before I had the Tramadol I had to give up working but still wouldnt be able to work. The nsaid made a lot of difference and my joints are painful. The Ibrutinib is making things worse. Today the palm of my hand and joints are not painful until I try to lift the kettle and realise it wasnt taking the weight.
Like you I have arthritis in my knees and my feet and hands. I had back surgery in 2006 and my posture is changed with loss of lordosis which causes pain in my upper body. I cant walk far which is upsetting because I cant do the things I would like to do.
I dont want to sound like a misery.
I had chemo fcr in 2010/2011 and 5 years remission plus w & w for 3 years. I have ivig every 4 weeks and have been doing well on Ibrutinib. The fatigue I had over the last few years seemed a bit better but the anaemia is making me sleep in the day and if I do more I feel ill with the exhaustion. Im hoping the iron tablets help.
I expect that like me the pain and other health issues have caused more problems than the cll. Then the cll rears its ugly head. The thought of internal bleeding is my main worry as I am dreading an endoscopy. I hope you get on well with the Ibrutinib. The extra pain issues have improved. Anne uk
thanks for sharing what you take for pain relief. i've taken tramadol before and it doesn't make me feel good at all. drugged with out really relieving the pain. nsaids are really good for osteo type pain. my leukemia docs says its ok to take meloxicam but i worry. in the current political climate war on drug addiction it is difficult to get a rx for anything stronger than tramadol unless you've had a surgery. for now i'm taking my meloxicam per my doc at md anderson and hope he is right. what i've heard is that being on one thing such as nsaid is ok, but no fish oil tabs, no other anticoagulant therapy. if you require anticoagulant therapy that is where the probs start and then add nsaid on top of it. i've given up my fish oil too, except in the context of what i eat daily. all the best
I think it is hard to get pain relief. My consultant thought ok to take Naproxen but I was advised by others to stop. That was 6 months ago and when I have the endoscopy I will know if I am bleeding.
I stopped the fish oil and really miss the Naproxen. Maybe the Meloxicam is better.
Good luck. Anne uk
We tend to hear more about those who have problems with these drugs, while those who sail through tend to be quieter. I hope you will be one of the lucky ones.
Nonetheless, with your known blood pressure condition, and the NSAIDs you are taking, you are right to have some concern.
You might want to read this informative article, which addresses this very issue. Maybe share it with both your CLL specialist and your cardiologist so they can consider how to proceed. ncbi.nlm.nih.gov/pmc/articl...
Particularly relevant are these conclusions/recommendations:
"Reported clinical trial data suggest that the addition of antiplatelet agents to ibrutinib increases the risk of bleeding.[7] DAPT with aspirin and a P2Y12-antagonist raises the risk of major bleeding by 40–50% compared to single antiplatelet therapy;[50] adding ibrutinib to DAPT is therefore likely to further increase this risk. Indeed, in vitro data has suggested ibrutinib combined with P2Y12 antagonists has an additive antiplatelet effect.[31] For these reasons, we are cautious about concurrent use of ibrutinib with other antiplatelet agents. Based on the available data, we recommend the following in patients taking ibrutinib:
Patients should be cautioned against the use of NSAIDs, fish oils, vitamin E, and inadvertent use of aspirin-containing products.
Consider stopping aspirin in patients on ibrutinib who have low or moderate cardiovascular risk.
For patients at high cardiovascular risk that may compromise their survival, including those with recent MI or stroke, consider ibrutinib plus 81 mg of aspirin. We recommend against higher doses of aspirin in light of data suggesting increased bleeding with no benefit.[51]
For patients with recent bare metal cardiac stent placement, consider delaying or holding ibrutinib while on DAPT. After the required DAPT period, consider ibrutinib plus 81 mg of aspirin.
For patients with recent drug eluting stent placement, consider replacing ibrutinib with an alternative treatment strategy given the extended duration of recommended DAPT.
Some authors initially trial ibrutinib at a lower dose (280 mg/day) in patients on other antiplatelet agents or anticoagulants and slowly increase to treatment dose if bleeding does not occur. This dose escalation strategy is based on in vitro data suggesting that the antiplatelet effects of ibrutinib are dose-dependent.[19, 20] It is important to note, however, that there is no clinical data to endorse this practical strategy, and that studies have shown significant bleeding rates at both lower (420mg/day)[7, 10–12] and higher (560mg/day)[8, 9] doses of ibrutinib."
I have been on Imbruvica for 3.5 years, with the usual manageable side effects of mouth sores (using 2 drops of Oil of Oregano on my toothpaste 2X/day eliminates them); muscle spasms (helped by taking magnesium); nail issues (helped by taking 2500mg biotin daily); joint pain and stiffness (a month after going gluten free last summer, my joints are now free of pain and stiffness); and bleeding/bug bite issues. I was in the ER last Saturday night, my third such visit for a finger tip knife cut that wouldn't stop bleeding after 3 hours. Holding ice with pressure helped not bleed all over the place, but as soon as I removed it, blood bubbled up again. It took another 3 hours in the ER before 2 stitches closed the wound. Typing is interesting as I work around that finger.
My blood pressure increased a year into Imbruvica, and I started taking Lisinopril, an ACE inhibitor. I had done research, and knew Calcium Channel Blockers and NSAIDS were contraindicated with Imbruvica. So far, so good, yet I think we all worry about afib.
At the suggestion of my techie grandsons, I got an Apple Watch last week. I love it for many reasons. It is reassuring to frequently monitor pulse rate, whether at rest or active, and to see what the maximum and minimum are during activities. It is very reassuring to see the rate reduce relatively quickly at the end of activity. While I always walk at least 1.5 miles a day, having the data available is motivating me to walk twice a day, and to add activity that raises the rate to my healthy maximum.
Most reassuring is to know that, should I go into afib or fall, my two sons will be notified, and that I can monitor heart rhythm with an ECG.
I made a case for months to get my oncologist to reduce my Imbruvica dose to 280 about a year ago. I have no idea if it has helped cardio issues. Clearly, I still have bleeding issues. Impossible to know whether the reduced dose is the cause of slightly stronger nails that are finally growing sufficiently so I can peel stickers off of fruit again.
Deciding that it's time to see a cardiologist, I've discovered there are "chemo cardiologists," who specialize in cardio issues related to chemotherapy. One strongly believes in proper exercise, helping to develop a tailored program to keep the heart healthy during and after treatment. I intend to call tomorrow to make an appointment with one. Not sure how prevalent they are, or where you live. I feel blessed, once again, to live in the Boston area, with all of our teaching/research hospitals.
I hope all goes well with you -- and am curious: As a lover of Bach and chamber music, what instrument do you play and is it with a group? May you find solace in beautiful music.
thank you so much for your extensive and thoughtful comments! about the bach, i am a serious amateur and music student who plays piano and harpsichord. i was on 240 mg but my doc dropped me down to 120 when i called his office and told him that i was having horrible headaches and elevated blood pressure. they told me that if the headache was the "worst i'd ever had" to go to the er. i left work at noon yesterday and at 4 pm today due to severe headache. i wanted to avoid going to er. i got home put on a relaxing jazz albumn and after 5 minutes of focused in the moment thought i took my bp. it was 150/63. i imagine it was at least 20 points higher at work maybe more. i find that speaking raises my blood pressure considerably. i've been doing alot of that as i have to train a new employee., that has beehn particularly hard on me. i'm on alot of bp meds. i was before the ibrutanib. i really apppreciate your suggestion of a chemo cardiologist. i'm in dallas not boston. boston is a great place to be. dana farber is there. dr jennifer brown is very impressive. there are others too. md anderson is ok but to be honest dana farber or weill cornell hold my attention alot more than md anderson does these days. i'm on norvasc, losartan, clonodine, bystolic for blood pressure. i have an appointment w/ my cardiologist on thursday. i don't knnow what mmore he can do for me. i can't be on a diuretic due to my salivary glands not working due to my thyroid cancer radiation. i was told my an ent to never go on a diuretic to avoid stones in my salivary gland tubes. not many options. he might be able to do up on the clonidine? a patch maybe? or up on the bystolic except that my pulse is very low already in the low 40's i don't have a lot of room to play with there. i'm worried. i pushed back when my leukemia doc wanted to put me on ibrutinub. the hypertension effects are well known to me. but he wanted me on it. .at least to try. fingers crossed i can figure something out. he did say there are other options for me if we can't do ibrutinub. pi3 kinase inhibitors and such. thanks again for the chemo cardiologist suggestion. i'd not heard of that. my cardiologist is an md /phd. maybe he is one. i hope so.
i researched the apple watch i was ready to get one but then i read on a consumer review that for ppl that have a very low pulse rate like i do, its not really of value. it seemed like an appealing thought though. i have a fit bit watch which sometimes doesn't even record my heart rate. i'm still here....so far.
Wow! That's a lot to go through. Sorry you now have to deal with CLL as well.
You can click on a link to download the article as a PDF. Maybe either send it to your doctors, or maybe print it (lots of paper) and take it to your appt?
I've been very impressed with the knowledge and commitment of the MD Anderson CLL specialists whom I've seen in interviews on Patient Power. Maybe give them another chance?
I wish you well.
i'm so glad i'm going to the cardiologist on thursday! he is a smart fellow and he has posters all over the place about afib. i never paid they much attention but now i will!
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