On Ibrutinib for almost 2 years but noticed something

[Doremefasol]

Hi everyone, I have been on Impruvica for almost 2 years, and for a month I have noticed that my feet are swollen. The right foot more so than the left and mostly around my ankles. Does anyone is experiencing that? I know there may be several reasons for swelling of lower extremities, but I wonder if this might be a side effect of Ibrutinib? Thanks .

[Newdawn Administrator]

Swelling of any of the extremities whilst taking Ibrutinib needs mentioning to your doctor Doremefasol. It is one of the possible documented side effects and can be due to fluid retention. My specialist checked my feet last time for odema but fortunately I don’t have it. I do however have swelling of the fingers.

It’s something you need to be reporting as a possible side effect. In the meantime you could try elevating your legs to see if it eases.

Best wishes,

Newdawn

[Doremefasol in reply to Newdawn]

Thanks, I will mention it to my onco.

[Soundsinamotion]

Interesting you just posted this. I came down to visit my father who is on ibrutinib for about 2 years as well, he developed bursitis and scabs on his elbow. When I looked down at his feet they looked very swollen and his toenails are really discolored, black and yellow. Not sure if it’s an infection or a side effect of ibrutinib that is causing it.

[Hidden]

I've been on Ibrutinib for just over a year and both my feet and ankles are very swollen. I showed my Consultant at my last appoìntment two weeks ago and she said that it was a well documented side effect. She checked both feet and ankles but could find no other reason. When they become particularly uncomfortable I spray them with cold water in the shower and then elevate them, which seems to help.

[Williem233]

I have been on Ibrutinib for nearly 3 years and started getting the same problem with my feet around a year ago, my consultant suspected possible nerve damage and I’m currently in the process of going through checks with a specialist who has confirmed the damage but still not sure if it’s related to my CLL. Over the past few months I’ve also had problems with swelling on both my knees which I will discuss with my consultant at my next appointment which is due next week (if COVID allows!). Hope this helps and keep safe.

[farber]

Hello, my ankle are swollen too. I’m taking Imbruvica 2.5 years. Also I start to have noise in my head and palpation in my heart. I told by my doctor that palpation it is a side effects.

[Kmegood]

Hi. I am on Ibrutinib for almost 5 weeks and I have swelling in my left ankle . It is very sore at times and then get a lot better . I used Voltarem cream one time after having the swelling for 2 weeks and the next day it was gone . Maybe a coincidence . Now the swelling is minor .

[Mcpill]

IT is a known side effect of Imbruvica. I was on it for 2.5 years, and swelling got so bad there were days I could not wear shoes. Was prescribed diuretics ... increasing potency and 2 different ones. Fortunately Venclexta became available and my doctor thought it was time to make the switch. That was 2 years and 7 months ago. Wish you all the best.

[barger1951]

I was on Ibrutinib for almost 2 years as well, with the same symptoms. One was caused by drinking too much water, the other I believe was that IBR was causing my heart to not regulate the way it once did (my theory only). Long story short, had to get off IBR for a surgery for two weeks before and two weeks after. During that time my numbers improved and I have been off IBR for over two years and feeling close to normal. The doctor will not tell you to voluntarily get off IBR if you do not have surgery coming up. I was going to stop taking it before the surgery because I felt intuitively that it was not helping me anymore and I was right. That is not to say that if my CLL come back, I will not seek medication (I will), but it will be something with less side effects.......I never stopped exercising during this whole CLL episode (about 3 to 4 times a week). I think that helped me a great deal both mentally and physically. Good Luck,

Barger1951

[Doremefasol]

In what stage were you at the time of your diagnosis.?Were you CLL free by a scan and a marrow biopsy before your surgery?

Thank you for taking your time to answer.

[CoBubby]

I had swollen feet. My labs showed low hemoglobins. ( I had normal labs less than a month previously. ) They took me off of Ibrutinib, temporarily. Needed transfusions. Then later gradually back on Ibrutinib, and never to full dosage.

Check with your doctor.

[country76]

Yes my legs and feet. The left leg more so. I elevate and try exercising to get my circulation going.I switched to Alcabrutinib a week ago so maybe that will help. It is suppose to have less side effects.

[Kmegood in reply to country76]

Sorry I am not used to the site . So late reply . I don’t have swelling but get leg or feet spasms when lying down . It goes away when I stand up and take a drink if tonic water . My hematologist makes no big deal about it . I had this issue before taking Imbruvica. My problem now is low hemoglobin . I had transfusions a month ago and to tomorrow I need another one . Hemoglobin is 79 from 66 and was 89 last month after the first transfusions and my other counts are good after being on Imbruvica since April 13.

[country76 in reply to Kmegood]

Good luck with your anemia, hope they are able to resolve it. So far I don't have any new side effects with the alcabrutinib. My nails still a little dry and toes.

My main issue is my thyroid pills stopped working last year and they are upping my dose which gives me heart palpatations.

My knee pain has gone away and so have my cramps, which were everywhere. The swelIing in my legs and ankles is gone too.

Just started my second round of Alcabrutinib, so far so good.

[Doremefasol]

I do have muscle spasms also. They could be anywhere, hands , legs even my back. I am starting to take magnesium and I will see how it works. My swelling went almost all away since I started to sleep with my legs elevated, so no problem with wearing shoes now. I did have hemolytic anemia during the course of my disease. I was part of a study for a new medication and after 3 months of participating ,I was destroying my red blood cells and my Hb went down to 4 . I was having 2 to 3 transfusions a day. My doctor waited for a few days and then, I was put on steroids. Luckily for me it worked like a charm. Don't worry, there are methods to break this chain of reaction. After a failed trial for a new med,(it worked well on some people), I was put on Ibrutinib. It is going to be 2 years in September. So far, besides little cramping ,increased stomach acidity and the swelling that went away, it is working fine for me. Mind you for the last 2 months my Hb and my platelets could be better, but nothing alarming yet. Hope your anemia will resolve soon. Good luck.

[Kmegood in reply to Doremefasol]

Thanks for your post. I get spasms now and then . They come suddenly so I stand up for a few seconds till it stops and drink some tonic water and then fine again.

[chuckh]

Ive had frequent edema during latter stages of Ibrutinib... but I have so much other stuff going on.. who knows. I do think the bleeding out under the skin was due to it. One arm swelled like Popeye's and was lovely shades of blue and purple. Either way... mention it to your Dr... and cross fingers they will listen.. Mine didn't (and I fired them hah)