Ibrutinib forever??

[fish61]

Mikey 47 stopped taking Ibrutinib after going into remission.. I have been on Ibrutinib for 3 years, am in full remission and I am told to stay on it forever. Anyone have thoughts on this??

[Cammie]

From what I understand because the situation regarding ibrutinib is such that no long term records are available (more than a few years) the current advice is to continue taking the medication. No doubt trials are proceeding in respect of discontinuance and of taking lower doses in order that data can be updated and new findings can be made in respect of PFS and CR. I suppose it depends also on what side effects a patient has experienced on the drug.

Certainly new drug trials are finding that side effects can be less than those of ibrutinib which is known to give colitis and other side effects.

Can I add how pleased I am that you find yourself in remission it would be helpful to know what your medics advised and why in respect of continuation.

[fish61 in reply to Cammie]

Thanks for answering Cammie, since I am still in the clinical trial Dr Wierda of M D Anderson wants me to stay in the trial and when I asked him why he matter of factly said to stay on it ....I will see him in 6 weeks and will get more info then....I was wanted to be loaded for bear by the results others have found....JJM

[HAIRBEAR_UK Founder Admin]

This is an area now under scrutiny and there is much debate and discussion among the clinical and patient community.

I am not familiar with Mikey47's circumstance if you are reading this Mikey could you share this with us?

As Cammie points out there is no long term data available, the current guidance is continuous treatment. There is much discussion among the clinical community of the importance of adherence and that the disease can bounce back very quickly when treatment is stopped.

How this differs between single agent ibrutinib use and when it is as part of a combination therapy with a monoclonal or chemotherapeutic we don't know yet.

[fish61]

I am pretty sure I spelled his name wrong , it is Mikey 47.. can you send this to him at mikey 47...I am sure he will answer as he has been off Ibrutinib at least 6 months now. JJM

[HAIRBEAR_UK Founder Admin in reply to fish61]

It was my spelling error not yours (have corrected it) , if Mikey doesn't see the thread i will forward as you suggest.

Nick

[Cllcanada Top Poster CURE Hero]

How was 'full remission' determined? Have they run an MRD flow cytometry?

~chris

[fish61]

Do not know what aMRD flow cytometry is...All can tell you is that I have no lymph nodes and all my blood markers are within normal limits. JJM

[Hidden]

I have been on ibrutinib for nine weeks now and lost all my lymph nodes, but my blood counts are still not right. Obviously I am anxious and asked my hematologist here at the Royal Free how long I would have to take this drug. She said for the rest of my life!

But I must say they monitor me very carefully and I even had a phone call from the CLL nurse asking if I had any side effects (so far I only had a bad cough and an eye infection). I am very impressed with the attention, because this is a huge teaching hospital overwhelmed with patients, so it seems they take the Imbruvica results very seriously.

Sue

London

[fish61]

we are on the same trail... I lost all my lymph nodes in 2 months ...it took another 18 months +- for my blood tests to be normal ...and that where I stand ,wondering if I have to take it forever. JJM