I am back from ASCO 2015 but before I bring the little CLL news there is to report from Chicago, I wanted to share my take on some basic background explanation on what exactly is chemotherapy that I just posted on our nonprofit’s website cllsociety.org on the treatment section here: cllsociety.org/2015/06/chem...
I welcome your comments and feedback on what is helpful and what other topics you would like to have covered.
More rumblings later in the week on the Resonate-2 trial and the approval of Gazyva in Quebec and England and Wales.
Thanks Brian, for writing and sharing that great, clearly written article that is a must read for anyone approaching the need for treatment. Well done!
Wow! That is such a helpful article, Brian. I could echo all that Neil has just said about it.
As someone who's needing to start therapy very soon, I found myself reading it twice over, and will probably read it again, to make sure I've taken it all on board.
You ask about other topics we'd like covered... Well having read the pros and cons of chemo-immunotherapy (CIT), it would be good to now hear more about the different new agents (eg. Ibrutinib, Idelalisib, ABT-199, new generation MABs like Obinuzumab etc). How do they work? How are they different from each other? What are the pros and cons? How near are they to being accessible - and how do different countries vary in their recommendations?
Thanks Paula. We have those topics in our sights to cover soon. Brian
Hi Brian
as I am currently trying to get through my chemo treatment (with some difficulty I might add) for ovarian cancer, I found your plainly written article interesting. My appeals to speak to my haematologist for advice fell on deaf ears, when carboplatin chemo as a follow up to major surgery was automatic. My surgeon apparently checked with haematology and was advised to proceed. My mail to a CLL specialist gave the advice to proceed with the chemo and concentrate on getting over the Ovarian cancer, and that treatment might slow the cll. Pretty sure that is not happening..
No one checked whether I was 17p deletion, so now I just have to hope that the chemo will work on the ovarian cancer, and I do not become one those whose CLL finds new ways to spoil my life.
Almost a litre of blood and G-CSF injections were needed to get me to my 5th chemo, and self injection 24 hours after chemo may get me to the final treatment.
It seems that having chemo now will mean I will be considered to have been already treated for CLL.
Oh' chemo brain exists so hope this reply is not confusing.
Sorry that your chemo has been such a struggle, Bub.
It was interesting to hear that having been through chemo for ovarian cancer, you are now considered as having been treated for CLL. I presume that means you are more likely to qualify for the new treatments if and when you need treating for CLL. Not that anyone wants that to happen of course...
Thank you for sharing.
Wishing you all the best for your 6th chemo session,
Dr. Koffman, your summary was very helpful. I had a WBC of 208 after 5.5 years on watch and wait with an enlarged spleen and lymph nodes swollen that made me look 10 pounds heavier. My Dr. at University of Chicago finally said "its time." in Janaury and "guess what there is a trial caparing Ibrutinib and Rituxan with FCR for folks under 65 and haven't been treated". 2/3rds get the RI and the other third FCR. I felt confident I would be part of the 66% to get RI but my luck went the other way and I was selected randomly for the FCR. So as a guy who has a sister-in-law who is a strict vegan that eats organic everything (she is a Dr. in Austin) the thought of adding some "Chemo" in my body has me freaked out. I ask a lot of questions and it was interesting on how little my treatment center in Evanston would tell me what does FCR actually do (I got the R part pretty well on my own and had no issues with that) but these other two drugs sound like they really mess with the DNA of good cells and bad cells alike. Your summary really gave me that extra knowledge I was seeking. However, I probably have more concerns on what these drugs now are doing to my body long term after 2 rounds of treatment. A simple Chicago cold (yea you probably got yours here) causes my lungs to go into full time coughing overdrive for 2 weeks. They suspended the treatment until this clears up and were sure I didn't have Pneumonia which I knew I didn't. Some Z-pak cleared the thing up immediately but gosh what are these antibiotics going to do long term for me. And reading folks postings on how they feel after FCR treatment and all the issues has me freaked out as well. Am I destined to be 100% CR (after two rounds all my numbers are great and lymph nodes are no longer swollen so I am responding great) but get all kinds of nasty infections the rest of my life. Quite the tradeoff I might add to be CR free. But your summary correctly points out for someone like me that doesn't lack an ATM Gene or p53 gene, maybe this is the best path and will last 10 years and then I will be given the next great thing in immunetherapy to come along and that makes sense. So thanks for laying that out so well. Hey, the great thing is my "treatment" "Therapy" "Chemo" got suspended and I am off to a 17 day trip to Italy and will clearly enjoy my time there and not think about what I need to face the next 4 months when I get back.
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Chemotherapy
