So on this journey since Dec. 2010 and we can't seem to hit that remission "sweet spot" that we read about in the stats or trials - is it us or just the reality of how everyone's battle is unique in the world of CLL?
We started V at the end of Feb. 2017 (as I posted our experience back in Feb/March) the introduction was scary and our toughest challenge yet. 2 months later, my husband has certainly tolerated V and showing great signs of improvement everyday - however we know this is temporary. Mark's CLL Is very aggressive and we were 1st hand witnesses to its power. The biggest lesson that came out of our last relapse was how quick this disease can progress. We started failing on ibrutinib in Nov. 2016 and by Feb. 2017 the progression was like watching Usain Bolt running the 100m in Rio - moving at its own pace and leaving everything and everyone behind.
So what next?? Mark always states he views his CLL as a chess game and he likes to be 2 moves ahead of his opponent - but at this point there really is only 1 move left Stem Cell (which we find terrifying) or CART-T (which has really made huge strides since we 1st read about it in 2011). Our health professionals are all guiding us on the Stem Cell route where we are thinking we need to explore CAR-T but every time we mention CAR-T the response is very negative and I feel like it is a "dirty word". We live in Canada were there has not been a lot of research/progress on CAR-T.
My question is what would you do and can this great CLL family offer their insight and knowledge to assist us in our next chess move???
NMMP
Written by
NMMP
To view profiles and participate in discussions please or .
Hiya, I'm sorry to hear that your husband's CLL is proving so difficult to manage.
My understanding of CAR-T therapy is that it is most useful in eliminating residual disease where a reasonable response has already been achieved with another treatment. If there were too many CLL cells present the cytokine release syndrome could be fatal. I had a look for CAR-T clinical trials for CLL in Canada but didn't find anything although there was one for ALL.
Venetoclax has given some people MRD negative CR's so I'm going to keep my fingers crossed that it works it's magic for your husband, at least long enough for the CAR-T or another wonder drug to become available. As your husband says, just need to stay ahead of the CLL!
Thank you for the support and advice - as we understand V should certainly help with getting a decent MRD reading and there have been a few studies where Venetoclax/Rituximab combination gets you even further MRD.
We are currently in discussion with our Hematologist about the Venetoclax/Rituximab combo but it has not been approved in our part of the country but trying to see what we can do about it. We are fortunate that our Haematologist is also willing to "break a few rules" when he feels it is the best solution.
I expect that there's only a slim chance of gaining access to a CAR- T trial in Canada - but you seem to have a helpful specialist assisting you to find a suitable next step...
Hi NMMP, Dr. Mato from Penn has some new drugs coming up. He will be speaking this Thursday night with the CLL society. Maybe you will be able to catch the video on the CLL Society website. Dr. Koffman just posted about it.
When I relapse, the doctors at MD Anderson are putting me on a combo of ibrutinib and venetoclax. So, I have not tried this yet, but that is the plan. Dr. Thompson does not like mono therapies, so we will see. I pray that venetoclax gets you some time. My dear friend who is 17p got four years on it before she had to switch to something else. I will find out the trial she is in now which is working well for her.
The main thing is if you can travel outside of Canada and afford the treatment. If costs of treatment are covered, travel and lodging might not. If you can, get with a CLL specialist and see if one would possibly benefit you. They seem very specific, so one might fit better than others. There are only 6 actively recruiting.
If you are unable to travel, I guess I would try and get mind and body behind the stem cell treatment. Best of luck in your decision and I hope you have plenty of time to make the best choice for you and your family.
There are actually more CAR-T trials going on in China than in the US......
Glad to hear he is doing better. It seems if you can get on some type a combo with V that would be helpful. Some papers have said it works better in a combo arrangement.
Thanks Hoffy - yes, he certainly is doing much better but still trying to balance his blood work. The neutrophils are a real balancing act with V - we never had this issue on ibrutinib.
The combo theme seems to be the trick moving forward.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
A humorous look at CAR-T cell therapy
CAR T-cell therapy
10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy
Long-Term Ibrutinib Therapy Reverses CD8+ T Cell Exhaustion in B Cell CLL
