I have finished 5 cycles of F/R.This is my second time around with same treatment,The first time having had 5 cycles in 2009 ,one year after diagnosis.My hem/onc dr.has just told me I may be elegible for ibrutinab,but offer from drug company ends end of June.My Dr. doesn.'t know when it will be cost covered in Canada.Does it make scence to start on this now when I may possibly have a few years now of treatment free? I don't know how much of a factor having 11q deletion is.My first FISH test I didn't have this marker.
This is my first post ever.I hope this works.
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lalykins
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Tricky one. You wouldn't want to begin treatment before you need it, but on the other hand don't want to miss the chance of getting onto a ground-breaking treatment that for most people has few side-effects and produces remarkable results.
It's something you have to decide, on advice from your doctor, after weighing up the issues on both sides.
If it was me, and Chris is right that Ibrutinib will soon be provincially-funded, I would probably defer treatment and enjoy a few healthy and drug-free years. Other experimental drugs are on the heels of ibrutinib, and you might have even better options before too long. It sounds like you might well still then be eligible for non-chemotherapy treatment if that's already been tried with you a couple of times.
But talk to your consultant and weigh it up for yourself. It's a personal choice in the end.
Thanks for replies.I had further conversation with dr. and he is now also advising wait as feels it's not a matter of if ibutinib becomes funded,but when and although no guarantee the hope is will be available as option
Here is something to think about. Imbruvica (ibrutinib) is still relative new. Yes it sounds hopeful. I want it to be successful but my doctor does not want to use this on me until there is at least a 5 year history of long term use. If I need treatment because we are out of options, yes this drug will be used without knowing long term use side effects if any. However why take that risk if you still have options. Your treatment should be based on what is best for you, not your pocket book. Generally cost decreases the longer the drug has been on the market.
We must be a bit careful... and location is important in Canada. Not all provinces may be able to fund Imbruvica (ibrutinib), I hope this is not the case, but history shows this to be true for other drugs...
Cancer drug prices rarely ever decrease, they are closed markets with little competition until the patent comes off... which generally run 20 years in the U.S.
~chris
Hi. As of next month I will have been on ibrutinib for 4 years. I was one of the few treatment naive and (relatively) healthy people to receive it as part of the first 1b/2 trial, which I believe was the second trial ever done at the time. They enrolled a dozen or less us in order to gain data in contrast to the heavily pretreated and very ill people who comprised most of the trial. I have no regrets. It's worked fine for me, blood parameters have been in the green for a couple of years now and I lead a (age considered, I'm 72) basically normal life.
Fwiw, just before starting the test my WBC was 65 K/uL (vs 4.0~11.0 normal range), RBC 4.03 M/uL.
A minor point perhaps worth mentioning. I was then, and remain now, one of the few people taking the double strength dose of 840 mg/day. No far no adverse effects notably different than the normal 420 dose. (That trial started out as a Phase 1 dosing trial and later was morphed into a combo 1b/2.) So far, so good.
Hello Lalykins. This is my first reply. I was diagnosed with CLL in 05, treated on a clinical trial in 11 with revlimid, rituxin, and flurad...can't remember spelling. I had 6 rounds and enjoyed a 3 yr remission. My disease came back in 15 and while discussing a second round of chemotherapy, I suggested we do another bone marrow just to be sure that we were looking at the same disease. Glad we did for we discovered that there was considerable collateral genetic fragmentation from the 2011 chemo series (as shown by bone marrows from 2005 and 2011). It turns out that from my profile .... and del11q is one ....chemotherapy will not work!!!! Further, it was decided that I should seek a second opinion for treatment as my physician, to her credit, voiced a concern that I was "out of her realm of experience".
I went to MDAnderson in TX and was told that I am a "high risk" patient due to the del11q much the same way that del17 is catagorized. I got on a clinical trial for Ibrutinib + Rituxin and began in Sept. Its been 6 weeks and I'm feeling like my old self again...something I didn't think was possible.
What I want to say to you is enjoy the remission, but seek superior help in defining what your next step will be...and you are talking about your life! If you get on a clinical trial, the drug is paid for.
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