Monday, December 14, 2015

More on CAR-T for FL

I got a nice comment on my last post (about the CAR-T study at ASH), and I thought it was worth sharing here because sometimes things get lost in the comments section. The comment is from Ben, who has had some success with CAR-T.


Hi Bob,

Thanks for covering this topic. This is the second time I am commenting on one of your posts. The first time was when you mentioned Revlimid/Rituxan, the so-called "R-Squared", as I was being treated with it.

And now you've done it again. I can provide more insight to you and anyone else reading this, as I myself am a CAR-T patient. I was infused with my "re-engineered" T cells in July, and was discharged in August after some unfortunately rather severe CRS (I needed to be in ICU for 5 days).

However, my follicular lymphoma is now in a Partial Remission (PR), with minimal activity showing in my most recent PET/CT. This is after getting minimal response from the aforementioned R-squared, and a subsequent HYPER-CVAD regimen, before entering the CAR-T trial.

We've since recommended CAR-T to another fNHL patient we learned about through a family member. He was diagnosed only a year ago, but got only a minimal response from R-CHOP and R-Bendamustine, and his lymphoma got progressively more active. He may have even started transforming.

This fellow was also infused over the summer, and now has a Complete Remission (CR), and did not have any of the CRS symptoms that I experienced. He was even able to do this as an out-patient at his facility, since his fever remained low and only lasted a couple of days.

So for anyone reading this, please know that another option exists for follicular lymphoma patients who are no longer getting good responses from their current therapies, which is of course often the nature of this disease.

I had mentioned in my first R-Squared post almost a year ago that I was considering starting a blog as you have done, and you had encouraged me to do so. I unfortunately never got around to it, but now I am re-considering. Hopefully this time I'll get around to it. I'll keep you posted...

Thanks so much for your continued coverage of current events re fNHL!


-- Ben 


 There are a few things worth mentioning here:

First, thank you, Ben, for the comment, and I hope you don't mind my highlighting it here.

Second, I think it's really valuable to hear stories from people who have actually had the treatment. I have been fortunate enough to not need treatment for several years now, so I can't talk much about any of these new treatments, so I really appreciate Ben sharing his story.

I especially appreciate him talking about the side effects he experienced. I sometimes ignore that part of the research I describe. I get so excited about results sometimes that I don't give the bad part of the research. And every treatment does have some kind of side effects. in Ben's case, it was a bad bout of CRS, which is Cytokine Release Syndrome. Basically, with CRS, T-cells release a protein called Cytokines, which can cause an inflammation response in the body. The CRS can be fairly mild, and not too dangerous, making the patient feel really horrible, but not doing much damage. But it can also be pretty severe, as it seems to have been with Ben, who was Intensive Care for a few days.

That's really important to remember (and for me to remember when I write about these things) -- every treatment has some side effects, and it's important to understand them fully.

Finally, Ben mentions blogging. It's not for everyone, but if you have something to share, I think you should try writing (that includes you too, Ben). I like this introduction to blogging from The Minimalists, posted about a month ago. It gives some basic general steps to getting started.  I get lots of comments from people who were glad they found Lympho Bob (and I love reading those comments), and it kind of lets me know that people are hungry for information and stories about Follicular Lymphoma. So if you are moved, pick a platform and a blog name and start writing.

Thanks again for the comment, Ben.


Anonymous said...

Thank you again.
I learned something new again: CRS
Me: stage 4
DX Sept 2014
W & W

William May said...

It would be great if Ben would post his CAR-T NCT trial number. Next Tuesday my wife is going to NIH for labs in preparation for a CAR-T trial in January and I'd like to compare protocols.

Anonymous said...

Hi William,

I'm sorry I didn't see your comment until just now. The trial I am enrolled in is: NCT00466531 (the link is below):

I enrolled in this one because I am already a Sloan-Kettering patient. Before enrolling, we actually met for 2 hours with Dr. Stephen Schuster at U. Penn in Philadelphia. He is one of the leading lymphoma specialists in the Northeast, and he had just presented some exciting data at ASH 2014 regarding CAR-T and follicular lymphoma (5 fNHL patients enrolled, and all 5 eventually achieving CR's). However, once Sloan-Kettering opened up their study to include fNHL patients, Philadelphia just seemed too impractical for us.

Is your wife a fNHL patient? Please just leave your comments here for now, I promise to check more often for your reply!

I wish all the best to you and your wife as you begin this challenging journey. Please feel free to ask any other questions here. Here's to a Healthy New Year for all of us!

-- Ben