Dizziness on Ibrutinib

[Marimari]

Hello, in 2022 my mom was diagnosed CLL (tp53,del 17p, unmutated), on August started treatment with Ibrutinib,  2 months later in general her condition is normal but this week she is feeling dizzy... I think this is how ibrutinib+blood is working but a bit scary. Next appoitment on December, would I rather reschedule the visit for earlier date? What do you recommend?Has anyone experienced similar feeling?  

Blood test 07.28 -> 09.13:

Lym 14,9 - > 15,3

WBC 18,65 -> 18,43

Plt 260-> 306

HgB 119-> 123

Im so glad i found this forum, people you are amazing, best wishes for everyone! Have a good day

[Panz]

It is my thought that the dizziness is a combo of things going on. I have been on Imbruvica and am now on Calquence and on both meds I have experience some dizziness. I feel the interaction of the drug plus blood, plus age all come into play. I am perhaps older then your Mom as I am 80. I have had CLL for 33+ years and have periods of light headed or dizzy from time to time. Your Mom’s labs really don’t concern me but I don’t know her medical history and I am not a doctor. I have found I am able to pull myself out of these periods with a cup of coffee and sitting down with feet elevated.

As I said I am not a doctor nor do I have the knowledge that others in this community have but I fully appreciate having become a member of this community! Have a lovely day!

Panz 🙂💕🙏🌈☘️👍

[sheilamarie in reply to Panz]

May I ask why you changed to Calquence from Imbruvica? A hem/oncolgist I may be transferring to has said she would consider switching me to Calquence. I am doing very well on Imbruvica - at a reduced dose. Thanks!

[Panz in reply to sheilamarie]

I was on the Imbruvica for six months and labs were done monthly as I receive IVIG every 4 weeks and I was doing great no side effects labs looking better each month when I happened to come down with two types of pneumonia in both lungs at the same time. They pulled the Imbruvica immediately but didn’t say why and I was not feeling well enough to ask why…..the simply told me they were pulling me in order my body was able to handle the pneumonias. After about two weeks I was better enough to ask when will I be able to go back on the Imbruvica and I was told not until my labs indicated it was needed but I would not be going back on Imbruvica as pneumonia is a serious side effect of Imbruvica. Two and a half years later it was time to treat and they then put me on the Calquence. I have been on that for almost months and my labs have never been better. I am feeling great. I h did have a few minor side effects but nothing I couldn’t handle. The headaches were addressed by coffee and that was no problem as I love my coffee. If you don’t do coffee. Caffeine pills are available. All the very best to you.

Panz 🙂💕🙏☘️👍🌈

[sheilamarie in reply to Panz]

I so appreciate your response - thank you. It’s interesting you didn’t need treatment for two and a half years! I hadn’t heard about pneumonia being a serious side effect of Imbruvica. I’m happy you’re doing well now. I love coffee too!

[lankisterguy Volunteer]

Hi Marimari,

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I responded to a similar posting 3 days ago- you might find this useful- healthunlocked.com/cllsuppo...

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I suggest you or your mother take this issue up with her GP or PCP Primary care team to start stepping through a "differential diagnosis" healthunlocked.com/redirect...

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Her CLL and treatment are one of many possible causes, but there are many unrelated conditions that should be checked, since they are more common and easier to treat or be eliminated. My GP ran a series of blood pressure and heart EKG tests, and referred me to my Cardiologist, who ran further tests including a Echocardiogram Transthoracic. My mother has had similar symptoms (but no CLL or Ibrutinib) and had a Holter monitor :

mayoclinic.org/tests-proced....

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Len

[TJG_CLL17P-]

Ibrutinib may cause atrial fibrillation and it would be a good idea for your Mom to be evaluated for that. Dizziness can be a symptom of atrial fib. If I understood the bloodwork as you disclosed it she doesn’t appear to be anemic. However dizziness is also common in CLL due to the high numbers of monoclonal B lymphocytes moving around in the blood which also can lead to suppression of red blood cells.