Imbruvica side effects: Hello everyone, my... - CLL Support

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Imbruvica side effects

8 years ago•3 Replies

Hello everyone, my father is CLL survivor for almost 20 years, he used so many drugs but relaps duration is now under 1 year. Our last drug is Imbruvica, he started to take his tablets 3 times a day , after 10 days the strong side effects showed itself like, fainting, low blood pressure, low red blood cells. I wonder what will be the other side effects that we ll come throgh? Is there anyone who have completed his therapy with Imbruvica? Thank a lot for your prompt responses

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chimini

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Germangerd8 years ago

Hallo chimini.

There are many potential side effects coming along with Ibrutinib, which you may learn from the instruction leaflet. But most patients taking this agent report that they have to cooperate with only a few of them, a.f. muscle- and/or tendonpain, cramps, rash, diarrohea or constipation. In most cases reported, these side effects are bearable or even dissapeare after a while. Only a few report, that they had to either interrupt taking the agent or even to finish it.

But, what to me seems much more important is, that you (resp. your father) should be aware of the fact, that Ibrutinib has to be taken as long as it works. That means undefinitely, resp. for the whole life. This at least is the current status of experience.

Finally I would like to point out a very personal and subjective remark: Did your fathers doctor not keep him informed about the way Ibrutinib works and about its potential risks?

I wish him all the best and may this agent be as helpfull to him as it is for meanwhile many thousands worldwide.

ThreeWs8 years ago

Hi Chimini,

Side effects can vary from patient to patient and some patients can get over some of the more serious side effects by going on a reduced dose either temporarily or permanently.

As stated by others most side effects are transient. Treatment with Ibrutinib (Imbruvica) is never completed as with any other KI (Kinase Inhibitor) or other single molecular agent. Your father needs to evaluate the seriousness of the symptoms you describe to assess any need to adjust dose or switch therapy.

I had some troublesome side effects in the first 9 months of use and I am now 5 years and one month into Ibru therapy doing very well but on reduced dose of 280mg (2 capsules). The side effects I have are restricted to brittle fingernails which is universal and helped greatly by 5000mcg Biotin. Although my platelets have never recovered from pre-treatment levels and remain in the mid 80s I have been free of initial side effects to include diarrhea, eye irritation, angioedema, heart arrhythmias/A-Fib for which I got a pacemaker and an AV (atrial ventricular) ablation in 2012. I am a very active 73yrs. Imbru/Ibru has given me a great quality of life so far with very low barely detectable cancer level.

Good luck,

WWW

chimini• in reply toThreeWs8 years ago

Thanks a lot for your response, he is now taken into hospital. Cause this time he is fighting with pneumonia, he's got high fever and the doctors stopped giving Imbruvica for a while. His platelets are 15.000 and red blood cell is 6.00 mg. This is a serious infection , I hope he can handle it. He is 74 years old.

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