There's a whole lot of really good stuff coming out of three important meetings for blood cancer specialists this month. I've already written a lot about presentations at ASCO, and there are also two great meetings happening in Europe.
Unfortunately, I'm in the middle of dealing with a small flood in my basement, and I haven't been able to read and write as much as I'd like, so I'm going to give you a couple of videos instead.
I'm seeing lots of very excited oncologists talk about all of this on Twitter, and I have to say, the thing that is generating the most excitement is CAR-T. Early results are excellent, and updated results are still very strong.
The first video is a long one (about 17 minutes), and features Prof. Stephen Schuster, a lead researcher on CAR-T. He explains in a lot of detail how CAR-T works, if you're looking for a fairly easy-to-understand summary. The link comes from the blog CAR-T and Follicular Non-Hodgkin's Lymphoma, which features updated links to research and commentary about CAR-T. It's put together by Ben, an FL patient who had great success with CAR-T, and Will, whose wife also has had success with the treatment. Both of them are regular commenters here. If you're looking for an excellent source of information about CAR-T and FL, that's the place to go.
The second video present some of the same information as Dr. Schuster's, but in much shorter form. It features Dr. Jeremy Slade Abramson, who has done some research on CAR-T as well.
It's easy to see whay lymphoma researchers are so excited about this treatment.
Enjoy. I'll get back to some more of the good news about Follicular Lymphoma soon.
Bob, this CAR-T news just seems to get better and better.
ReplyDeleteI've got FL and on March 24th finished my first 6 month set of treatments. My bone marrow was "95% infected with Lymphoma," the post-treatment biopsy showed "5%." My Onc described the results as "Brilliant." He said I should not need more treatment for "years" - "I'd be surprised if you didn't go five years before you need more time in the Chemo room."
I live in Victoria BC and it is one of four locations in Canada at the center of "CAR-T" research. After my treatment my Onc and I were talking about CAR-T and he said he doubted it would be my next treatment. "There are other exciting developments as well. But Cat-T is looking to eventually become an excellent choice when (if) your condition needs it."
I suspect in Canada CAR-T will be held back until other "good" but "cheaper" options are tried and found not sufficient. But when needed it is there. Mind you my cost of Chemo, hospital, all related scans, biopsy's and blood tests was $0.00. Our health care system.
As a Canadian I'm watching the US Trump situation with alarm and concern. Putting 24 million off healthcare (about 2.5 million if it was Canada) would be grounds for treason "north of the line." Not so much south of it. An American friend of mine (not a Trumpster) said what I didn't understand is that even with Obamacare there are NOW over 28 million Americans (3 million(ish) if it were Canada) without healthcare. After Death By Trump you'd have over 50 million uninsured (just over 5 million if it were Canada).
You guys are either insane or have a perverted understanding of society, humanity, decency and the spectacular wonder and beauty of life. 11 Nuclear Carrier Battle Groups to hunt guys in caves - but - several million early deaths of Americans - no big deal.
Wow - incomprehensible to me. And I haven't even mentioned that since 911 400,000 of you have died by gunshots from other Americans while a 100 or so have been killed by "Islamist Terrorists."
For two nations so close to each other, so friendly with each other, we clearly have very different priorities. Love your site Bob!!
Roger in Sidney By The Sea (A suburb of Victoria, BC).
Hi Bob,
ReplyDeleteThanks so much for the shoutout! Much appreciated. Now Bill and I have even more responsibility to try to keep our blog current. :)
BTW, I just had a PET/CT scan a few weeks shy of my CAR-T 2-year anniversary. Still NED (No Evidence of Disease) :)
Wishing you continued good health...
-- Ben
http://fnhlben.wordpress.com
P.S. To "MyLegacy": I totally agree with you. This is what happens when my country elects a billionaire and expects him to act against his own interests and the intrerests of his billionaire friends. This just feeds into the alarming, ever-widening class division here in the U.S. between the "haves" and "have-nots".
Thanks for the shoutout Bob. I REALLY appreciate all the hard work you devote to your blog.
ReplyDeleteIn November 2011, at the age of 65, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. As of June 26, 2017 she has been in complete remission for 15+ months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission. There is more information on CAR-T for fNHL patients and people considering CAR-T at https://fnhlben.wordpress.com/
Other non-Hodgkin lymphoma sites I visit often are:
http://lymphobob.blogspot.com/
http://www.lymphomation.org/#what-is-new
http://www.lymphoma.org/ (look for free "Ask the Doctor" meetings near where you live)
http://www.lls.org/
William
Will and Ben,
ReplyDeleteI'm happy to guide people to the CAR-T blog. There's so much good stuff happening with CAR-T, I can't keep up with it all. It's great that you do.
Glad to hear things are going well for you, Ben, and for your wife, William.