Hi Everyone - So this is my second attempt on IB. My first started out with 5 days of severe headaches and then chest discomfort and stress. Turns out my blood pressure had shot up and i had lots of tests including an angiogram, saw my cardiologist, ENT and GI docs to rule out other problems. I had to stop the IB cause the anxiety attacks were to much for me. After being off for about a 2 weeks the anxiety problem stopped. My doc adjust my Blood Presure drugs and am back on IB and about 7 days into it again the chest discomfort is back. If I take 4mg of valium it goes away. I go to a therapist, talk to lots of other people, have an amazing support system, etc. I am explaining this all to sorta defend my position that the anxiety response i am feeling is definately being induced somehow by the IB. I know it is stressful having CLL etc. But this is different. Especially since I went on and off and then back on and it is happening again. Has anyone had this experience. I am excersing and doing other things to reduce any stress... but it comes on out of nowhere. Any ideas or expereinces? Thanks!
FYI: im CLL 17del
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Roydeane
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Hi Roydeane. I have not had an anxiety reaction to Ibrutinib as severe as yours. But I have felt from the beginning of my 6 weeks on Ibrutinib, that it has been mildly affecting me psychologically/emotionally/neurologically. These changes have been so vague and 'unprovable' that I have not yet mentioned it to doctors. But unexplained anxiety, and unexplained bursts of anger/rage, have been among these effects. It's one thing to feel anxiety or anger in reaction to a real-world situation or occurrence. But when your body is suddenly awash in a such a reaction for no apparent reason... well, to me it feels very much like some sort of chemical cascade has been unleashed in my body without an external situational trigger. It has not been extreme or prolonged in my case, and my BP has not been affected.
On the upside, I have also experienced a real boost in energy and mood from the Ibrutinib since Day One. Quite noticeable for first 8 hours after I take it each morning. So I DO believe you when you say the Ibrutinib is triggering an anxiety response in you.
Thanks for your kind words of support. I have felt many of the things you described also. Your words of a “chemical cascade” is so well put. I am also experiencing some concentration and multitasking issues which for me are quite serious since I am a CEO. I have great employees and they are all aware of my situation but I am the big thinker so they say.... hah... and my brain aint thinkin so good. Thanks again for your support. See you in the dharma! Metta
I am 61 with stage 0 CLL and well managed PTSD for over 25 years
I have had 25 years of practice and thearpy in staying clam and while I still function quite well the CLL has challenged all I learned in the last 25 years as while 0 sounds like a good place it has caused a multitude of various small health issues that are related to my greatly diminished ability to heal from minor things and it’s just stressful dealing with health issues that don’t have and end point in sight
Hi Roydeane, I’m cll 17del as well.. 40 years old. I am experiencing anxiety like I never have before since the last year(been on imbruvica for 2 years).
It is usually about nothing or it’s about work, but normally I can handle stress and anxiety very well.
Not sure if it’s the imbruvica or it’s because I hit my 40’s😁.
Awaking every day to a reminder that a person has CLL is stressful in itself, mentally and emotionally. It can transfer to physical degradation. Perhaps you can see the connection between taking the pills and experiencing the stress. Part of staying above the curve is controlling these feelings. Find your way that works for handling stress and practice it often. Hopefully it will serve you well.
Well... this from the other side of Imbruvica experience. After nearly 2 years on WW I have now been taking Imbruvica for nearly 17 months.
Therapeutic response was immediate with lymph nodes back to normal size within a month. Blood work returned to normal numbers after about 10 months.
No side effects whatsoever other than brittle finger nails, cracked finger tips and the issues of bruising.
I am not considered to be a particularly mellow person. Very definitely a Type A. I've had no anxiety ( other than that about having this damn cancer ) attacks.
I'm 67 and fullly know I'll be ok. Sorry to hear about these issues you and others are having
Thanks for your support.... and thats just it! We are all having this range of experiences... physical, mental and emotional. Its great to hear from people doing well so i can look forward to that and people who are going through what I am and the sharing. A burden shared is half a burden.
Hi: Was curious what you were (if) able to improve your brittle finger nails. My thyroid was way out of wack and my Dr. says that will take care of it. NOT Someone suggested Vit E, but I know I have to check with Oncologist. This anxiety is getting so much worse. The insomnia at night is awful. I take ZZZZQuill occasionally, but don't want to depend on them. Many nights I may get out of bed as much as 5-6 times. If I get 4 hrs. of uninterrupted sleep I consider myself very, very lucky.
This post was an eye-opener for me. I literally wake up every day in a state of worry - mostly money -related, about my son & his young family, who struggle financially, and the situation that I will be in when I have to go on Medicare in a few months & will be facing huge copays for imbruvica. I will be pursuing any available financial assistance with the help of my oncologists office, but of course there are no guarantees. Though I don’t _want_ to wake up, once I do I feel a little better, but tend to feel pretty crappy in the mornings, where I used to be a morning person. I live a pretty solitary existence, not by choice but by circumstance, and I’m sure that doesn’t help. I’ve had serious challenges on and off throughout my life, but this nearly constant low-level panic alternating with depression is different than anything I’ve previously experienced. I’ve been on imbruvica 1 1/2 years now (also 17p deleted). It had never occurred to me that perhaps that was making my constant worry and anxiety even worse. This has been a relatively new development - last few months or so. (From the USA) .
I've taken St. John's Wort for years for mild depression. Seems to help. It's contra indicated for some prescription drugs so be sure to ask your doctor.
Thank you for sharing. I thought I was losing my mind or making things up. I also have chest tightness and anxiety that I never had before. I will now discuss these with my onc. I really appreciate knowing I am not imagining these things.
Hope you get some help. For me it was mainly my blood pressure which shot up. If your blood pressure is up make sure you get the help from the right doctor. Cardiologists are the best with blood pressure. Good luck.
No, I've been on IB for a year and a half and I haven't experienced the anxiety attacks or high blood pressure. My blood pressure is higher than it has been but I think it's from gaining weight. Trying to lose, but now around the holidays isn't a good time. Sorry this is happening to you.
Ibrutinib DEFINITELY has affected my husband's moods. It is very effective in fighting cancer but after 7 months has caused neuropathy in my husband's feet & took him through a month long stage of extreme grouchiness - he said afterward that everything frustrated him & made him feel angry. He went off temporarily and didn't feel good physically, but immediately felt noticeably better emotionally. We found a really good balance with a reduced dose (2 pills instead of 3). His neuropathy is better along with his general emotional health and the ibrutinib is working well to bring his white blood counts down.
Others have suggested alpha lipoic acid for neuropathy and (it could be my imagination) it actually seems to be working for me. Another suggestion (sounds weird, but this does work): rotate ankles 11 times (why 11? why not) in one direction and then 11 more in the other--it does seem to break something loose, and you can do it any time you're lounging.
Thank you so much for your post. First, I wasnt sure that I could post here seeing that I dont have CLL. And secondly, for the info on how IBR has affected your husband.
My husband is 36 and was diagnosed August 2015 will cll. He was then diagnosed in September 2017 with MG. He's had IVIG, takes prednisone, and pyridostigmin but his lymphnodes smelled again so his onc has placed him back on IBR (this is the second time). I have felt like I've been losing my mind. He's been on it now for almost 2 weeks and is a completely different person. I'll ask him a question and he wont respond but thinks hes responded and then snaps at me when I ask the question again. He gets angry quickly, has terrible anxiety, has had neuropathy in his extremities, and is easily irritated with everything- hes not his usual sweet self at all since he has been back on the IBR. I cant imagine what it is like for him to live with all of this. But I guess I needed to know that the symptoms that I'm seeing are similar to what others have also seen. Is there anything that's worked for you guys in managing the symptoms? Thanks again.
You mention that your husband is on Ibrutinib for the second time. This concerns me, because it can take up to 5 years for patients on Ibrutinib to reach minimal residual disease and going off Ibrutinib after only a short period of treatment can result it in CLL bouncing back aggressively. While there are now more treatment options that can be sequentially used, at 36, your husband really wants to maximise the years of effectiveness he can get out of each treatment drug. Likewise reducing the dose needs to be done under specialist oversight, because it is essential to ensure a high enough dose is maintained to keep the CLL under control.
Given these neurological effects are rather rare, along with your husband having both CLL and MG, he would do well to see a specialist who sees lots of CLL patients. If you share where you live, then other members may be able to advise of a CLL specialist near you. This is an open/unlocked post, so I recommend that you create a new post to do so, changing the option to the question of "Who can see my post" to "Only community members".
Thanks for your post - it's interesting to hear about your experiences, as well as hearing from the people who've replied to you.
Ibrutinib hasn't made me anxious, but since I've been on it I've felt very sluggish and brain fogged (except for the first two hours in the morning when I'm reasonably OK). I can't respond quickly to changing situations, can't multitask, can't remember things. Everything feels dulled down - though I'm also getting overstressed about little things - partly because I feel I can't cope. Might not be the Ibrutinib of course - could be the continuing anaemia (88 last time), or my very high white cell count (over 600). Or maybe something else is going on.
Doesn't help that I've not been getting much exercise recently, due to general fatigue and hubby's health problems. Walking round various hospitals several times a week isn't the same as the country walking I love.
Last week the doctor said my liver seemed enlarged, so she's ordered an ultrasound scan next week to check that out. She's also referred me to Infectious Diseases docs, in case some dormant infection has been reactivated (as I've been getting low grade fevers in the evenings). But at least the crippling joint pains I had for my first few weeks on Ibrutinib, have now faded away. I am SO grateful for that .
It's strange how people respond to Ibrutinib in such different ways, with a very range of side effects. As you say, Roydeane, it's good to hear from the folk who are doing well, so we can look forward to that, but also to hear from those who are struggling, so that none of us feel so alone...
And I do hope you feel better and improve also. They say acceptance is the answer to all our problems. Most of our suffering is because we want things to be different than they are. Birth , old age, sickness and death though are the unavoidable ones (so the Buddha says). The rest is all mind... so it is said. Sending healing wishes your way.
Thanks Roydeane. You’ve brought up some interesting philosophical concepts here.
I wouldn’t say that “acceptance is the answer to all our problems”, but I agree it’s a big part of it.
I like the thoughts behind “the Serenity prayer” that says, “God grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
and the Wisdom to know the difference.”
For me, the stress comes when I hope/believe certain things CAN be changed, but lack the wisdom and energy to actually make those changes, or am dependent on others to help me.
I'm so glad I found this. I recently woke with raging itches and intense dread, chest tight, breathless, choking. (I had been taking Ibrutinib for a couple of years and had come off a drug holiday a couple of months before.)
I had never had anything like a panic attack before, and there was no reason, none at all, even to be anxious, but I was nearly out of my mind with it all night. A week later it happened again and I'd developed a high, loud ringing in my ears. I asked my oncologist if IB could be doing this, but he said no. In a couple more days I went to the ER and they decided it was a UTI and "anxiety"--I'd only had one UTI before, and it most certainly didn't have these symptoms.
Maybe it's the combination, I don't know, but whatever it is, I've beaten it back a little (sleeping with Benedryl--doesn't stop the itch but knocks me out for a while--and kava kava--supposed to be calming and doesn't seem to be hurting, anyway--and NO CAFFEINE--drinking my usual instantly brought the chest constriction back).
So far no one can help and being labelled "anxious" doesn't make it better. Up to now I'd have been described as calm, or relaxed, even lethargic or lazy, but not fearful or crazy. This hopelessness, this tiny-speck-in-a-dark-cold-universe horror, could ruin my life if I don't get a handle on it. Just finding out that others have experienced something similar makes me breathe a little easier. Thank you.
P.S. My doctor is okay with my dropping IB until the symptoms disappear, then reintroducing it at a lower dose later if that's what seems best. When I've been off it a week, I should start seeing a difference. (In the meantime I'm hydrating like a camel.) On the grimmer side, he's having me get an MRI in case this turns out to be progressive multifocal leukoencephalopathy, a truly nasty viral infection that doesn't have a cure just now--that's a long shot, luckily, they symptoms don't really match, but I'll know by Monday what the MRI shows.
BTW, I may have narrowed down the problem, with help from Robgump's suggestion about drinking more water and something I read about IB being effective in much smaller doses. This was surely a toxic reaction triggered by dehydration. I'm going to see if I can get a smaller dose (or a pill cutter) and then be sure to hydrate every single day. See: washingtonpost.com/news/won...
It's not me - it's my Hubby. He's now 80; 11 years since diagnosis & nearly 1 since treatment started. Been on IB for 6 weeks. He refuses to acknowledge that he's become an angry, uptight person. My roll-with-the-punches, take-charge man has become short tempered and a Crotchety Old Man!! The only thing that's changed for Meds has been the IB. I'll be bringing this up to both the Dr & the Pharmacy, 'cause I don't think there's enough input on this little side effect.
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