Many thanks to Shelly, a long-time reader, who has let me know about two opportunities to hear from Lymphoma experts.
The first has actually already passed, but it's really valuable. It's a video from the Leukemia and Lymphoma Society's "Ask an Expert" series, where patients can ask a lymphoma specialist any questions about their disease. As I said, this one already happened -- it was posted on February 25. The session features Dr. Erel Joffe from the Memorial Sloan Kettering Cancer Center in New York.
Dr. Joffe spends some time comparing a few different first line treatments for Follicular Lymphoma -- Rituxan + chemotherapy, Rituxan + Lenalidomide (R-Squared), and a clinical trial of Rituxan + Lenalidomide + Venetoclax + Ibrutinib.
One of the main points that Dr. Joffe makes in the video is the importance of clinical trials. Many people think of them as experimental, and in some ways they are. But they are also rigorous -- a treatment won't make it to a trial if there hasn't already been evidence that it will wok and it will be safe, especially for phase 2 and phase 3 trials. There are no guarantees, of course, that a clinical trial will be successful for any individual patient. But there's no guarantee that an approved treatment will be successful either. I like the way Dr. Joffe describes being in a trial -- you're getting the treatment of the future, today."
Dr. Joffe goes through the results of a few trials and gives some advice on what to look for when you're trying to decide whether or not to participate in a trial. It's extremely valuable advice. (He also gets into the whole issue of being "cured," and whether that matters, at about 14 minutes int the video. Sounds familiar.) If you've ever considered a trial, or you're not sure about them, I highly recommend the video. (Be warned, though -- the sound is not very good. Shelly recommended I watch with the captions on, and I think that's a good suggestion.)
The second opportunity hasn't happened yet, which is good news. This one is sponsored by the Lymphoma Research Foundation, and it's part of their "Ask a Doctor About Lymphoma" series. There are actually three of them coming up in the series, all of them being conducted online (they often do these in person). But Shelly specifically pointed out that the session on March 9 is being led by Dr. Bruce Cheson, who I am fond of, as Shelly knows. (I didn't think it was so obvious that I am kind of what my kids call a "Super Fan" of Dr. Cheson. But then I searched for him on this blog to see if I could link to him, and I'm a little embarrassed by how often I talk about how much I like him, so I'm not going to link to him. You can search his name on your own if you want to read more.)
All three of the Ask the Doctor sessions should be great. Pick one that works for your schedule and sign up, and ask a question if you have one. It's a nice opportunity to get some answers.
And if you've never explored the sites for LLS and LRF, this is a good time to do so. They both have lots of great information for Lymphoma patients, and resources (like their "ask" series) that provide direct assistance in many different ways.
4 comments:
Great post. I really appreciated Dr. Joffe's discussion of how to read/interpret the survival curves to be very useful. while not a stranger to data analysis, he covered some features I handn't considered before.
Dr. Joffee is great. He also moderates a subreddit specifically for lymphoma, posting useful information and personally replying to questions. It's an invaluable service to the community. Lymphoma_MD_Answers
Useful video, good explanations about PFS curve.
Note his clarification about curability of the 1st line R2. 80% are disease free after 3 years, and based on PRIMA study for CHOP+observation, plus based on early data on R2, 80% of this subset will be disease-free after 10 years, i.e. ~65% of the initial number of patients. Relapse doesn't mean immediate treatment, so 70% of the initial patients won't need treatment after 10 years (but they are not all disease-free at this point).
R2 is not CHOP+maintenance, I would be cautious about these projections. We need a real long term study on the 1st line R2. Heck, in Canada R2 is not available even in the 2nd or 3rd line.
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