It has been a while since I posted an interview on my blog first instead of the CLL Society website, but I thought the contrast of the broad approval of ibrutinib frontline versus the unexpected findings of significant auto-immune toxicities especially in the liver with idelalisib frontline needed to be explored.
My interview with Dr. Pagel and my commentary can be found on my blog: bkoffman.blogspot.com
Stay strong.
We are all in this together.
Brian
Hi Doc,
This posting was like you were talking to me. Upon diagnosis, yours was one of the first blogs I found. You gave me hope and insight.
Needing tx soon (11q- and unmutated) and being tx naive at age of 49 in 2013, chemo was the only option for me near by. So I found Dr. Sharman's blog and followed his advice. If you were to get chemo, try and get it in a clinical trial with a small molecule inhibitor.
I found BR +/- idela. I was in a phase 3 trial but we knew pretty quickly that I was on the idela. Within a month and beyond, I had loose stools, pneumonitis, and elevated liver enzymes. I still managed to stay on the drug for 15 months, despite several hospital admissions.
This article gives me clarity. I thought I was just unlucky with the adverse events. Well, I suppose I was.
It's been 8 months off the Idela. My counts are all still very good. My platelets are around 115-120 but everything else is great. I hope with time, the platelets will recover some more. I got a near complete response with all enlarged nodes returning to normal but one. It was borderline normal and was the biggest one in the beginning.
I am glad that I was in the trial because everyone can learn from my experience and I believe the 15 months on the Idela. will give me a much deeper remission than just with the BR alone.
Thank you for all you do. I love the cllsociety.org (CLL Society) website as well as your blog.
I am borrowing a re-quote from someone on the ACOR site: "Worry does not empty tomorrow of it's sorrow, it empties today of it's strength." This was authored by Corrie ten Boom, a holocaust survivor.
Jeff
Thanks for your words of support.
The important trial underway is ACP-196 vs Ibrutinib. ACP-196, the second generation BKT, appears to have less side effects. I have been on ACP-196 for over a year without any side effects. This is a first line treatment for me. I do not think that I am alone based upon talking to other patients on ACP-196 and reading Dr. Byrd's December 2015 paper covering 61 patients. However, there is not much history for people on ACP-196.
This is a great trial for patients and will answer many important questions.
ACP-196 is certainly looking hopeful. From when we're first told we're 'INCURABLE' we living without hope but with all these amazing new drugs coming along in the pipeline, hope is there again.
ACP-196 is a miracle drug. My CLL turned into SLL and went from stage 0 to stage 3 in a month. I had the wrong genetic markers for treatment by FCR. As a first line treatment I was not eligible for Ibrutinib. I was lucky in getting into a Phase1 Drug Trial for ACP-196. Without the drug trial I would have had to endure a failed treatment before getting Ibrutinib. Apparently, ACP-196 is a more selective BTK inhibitor causing fewer side effects. I am curently in partial remission. My swollen lymph-nodes have disappeared; I am no longer anemic; and night sweats are history. The only side effect is positive - my sinuses are clear after about 30 years.
At the same time, there appear to be better drugs in the pipeline. The one that comes to mind is ABT-199. ABT-199 coupled with a BTK inhibitor may provide full remission without the need to remain on the drug. There is a drug trial underway using Ibrutinib. Abbvie owns both ABT-199 and Ibrutinib.
Greenblue,
Be well and thank you for leading the way so others, like myself, one day will follow.
Jeff
Brian thanks for bringing this to our attention and your work to decipher some of the mystery behind emerging data from this trial for us.
Your website and blog is a great font of information for us, i love that you always ensure you provide us with some qualified explanation to accompany findings and announcements to put things into context and balance. A great video interview also which has created a lot of food for thought ,
A big thank you to all our trial pioneers that are paving the way to ensure there is knowledge of these new agents and when and in whom they will be most effective.
This brings home for me why having a clinical CLL expert with oversight of your treatment plan is very important when you have to make that treatment decision and calculate personal risks together..
Keep up your great work
Best wishes
Nick
Dr Sharman on "Choosing first therapy in CLL"
