Ibrutinib

[Laurag78]

Has anyone ever had bleeding problems with ibrutinib?

[Cllcanada Top Poster CURE Hero]

I did... most are transient and cosmetic and minor... mine were not unfortunately.

Dr. Byrd discusses this and other side effects here... on CLL SOCIETY

cllsociety.org/newsletter/q...

[Laurag78 in reply to Cllcanada]

Can I ask wot kind of bleeding you had....my mum was supposed to start ibrutinib but it was stopped due to her having low platelets..

[Cllcanada Top Poster CURE Hero in reply to Laurag78]

Imbruvica (ibrutinib) doesn't really effect platelet counts, but rather proteins needed by platelets to function properly... but if platelets are low it would be a concern.

I had petechia, then blood filled welts appeared, colon bleeds, bladder bleeds... and so forth.

HOWEVER.. in my case I was also on a blood thinner called Xarelto, so this may have contributed to my problems, knowbody knows... certainly other blood thinners and NSAIDs are not recommended, due to coagulation problems...

~chris

[Laurag78 in reply to Cllcanada]

Oh doesn't sound good at all....I have heard a lot of people say Cll is a good cancer to get, I have never heard such nonsense I have watched my poor mum be destroyed by so called drugs that have supposedly been used to help her...

[Cllcanada Top Poster CURE Hero in reply to Laurag78]

I want to emphasis this was MY experience...

90% of patients do well on Imbruvica (ibrutinib).

You can not assume one bad experience is the norm.. it clearly isn't ... its one bad experience.

~chris

[cllady01 Former Volunteer in reply to Laurag78]

Yes, that is said by Drs. It is not true for everyone, however. There needs to be a bit more study of any case, before such is said to anyone.

I am so sorry your mother is having such a rough time.

It may still be possible for her to have Ibrutinib, depending on what she is being treated with now, her age, all the profile.

That is no help to you now, however, as you tend to her in her suffering.

[Laurag78]

My mum has had more than one bad experience unfortunately 2 wks ago she was walking about and now after being on a certain med cant walk has lost power in her arms, she has to be fed, washed and has a nappy on, so I guess I am seeing the bad side of these treatments, I wuld hav luvd my mum to been given ibrutinib but unfortunately thy are trying something else to get her platelet count up..all this while she is lying in a hospital bed unable to move..

[Pepper122]

I started the clinical trial with Dr. Byrd a few years ago. At first, no significant problems, even though my platelets continued to be low. Then, I developed a bleeding ulcer which nearly killed me - thank you Cleveland Clinic at Weston Florida and my local medical people.

Dr. Byrd suggested that I switch to another medicine and when they screened me for that medicine, they learned that I was IN FULL REMISION, which is still the case 1 1/2 years later.

So, bleeding is a potential bad side effect but I was at stage four when I started and now a stage zero so I hv no complaint about ibrutunib. But, you need to stay alert.