One more post about PI3K Inhibitors, and then I'll do my best to stop writing about them for a while.
(But I make no promises.)
OncLive has a new video series on indolent lymphomas, and it includes a couple of brief episodes on Follicular Lymphoma. One in particular caught my eye -- "PI3K Inhibitors in Relapsed/Refractory Follicular Lymphoma." Conveniently, it includes a transcript in case you want to translate it or you have trouble viewing the video.
The video series features several Lymphoma experts giving their take on recent research on several different types of lymphoma.
One important detail -- the first video in this series was posted in December, so my guess is that the whole thing was put together during the ASCO conference, and is short pieces are being released every week. That means they discuss PI3K Inhibitors before the various FDA actions had taken place.
The most interesting thing to me is that they focus on Copanlisib. As I have been discussing, there have been four PI3K inhibitors approved by the FDA for Follicular Lymphoma, and three of them have run into problems of different kinds. The fourth one, so far relatively trouble-free, is Copanlisib. As the panelists in the video point out, there are some differences between Copanlisib and the other three. One is the way it is administered. The other three are given in pill form, but Copanlisib is given intravenously, once time per week. Taking a pill at home is a whole lot easier than going for an infusion once a week (Quality of Life matters!), but the pill form might also lead to some gastrointestinal side effects that an infusion doesn't have.
(As always, nothing is easy. Every treatment has side effects, and every treatment is going to affect how we live our lives in some way.)
They also briefly discuss the CHRONOS trial, which looks at the combination of Copanlisib and Rituxan. The results seem very positive, and shows again that there seems to be more success with combinations that with just PI3K inhibitors alone.
The lesson here, for me, is to remember that problems with some treatments within a group or class does not mean that every treatment in that group or class is in trouble. One of the positive things to come out of the troubles with PI3K inhibitors (and I'm always looking for positives) is that researchers may learn to deal with side effects in the next generation of inhibitors. Ideally that means more demand for them, so "business decisions" don't cause treatments to be removed from the market.
One bit of good news in that regard (which I have been aware of since ASCO) is that there are some potentially "better" PI3K inhibitors coming soon. For example, another PI3K inhibitor called Zandelisib is moving its way through trials and toward FDA application. One of the things that makes Zandelisib different from other inhibitors is its dosing -- how often and how much a patient takes. Like some of the others, it is given in pill form. But instead of being taken every day, patients take it for a number of days and then stop taking it for a number of days. This allows the body to recover, especially the immune system. Numbers are good -- effective, with manageable side effects.
Will Zandelisib (or another PI3K inhibitor under development) be a good replacement for the PI3K inhibitors that are no longer (or may soon no longer) be available? Hard to say. I'm always enthusiastic about having more options available for us, especially when they are more effective and safer than what has come before. So I wish Good Luck to everyone working on an FL treatment.
But the bigger point, as I said, is that problems with some treatments doesn't mean problems with all treatments.
(I promised last time that I'd be more positive. I think I did OK.)
Hi, Bob! Just came across your blog, linked from an article you wrote about online support groups. Can you please share which groups you've found to be most active and helpful for NHL and FNHL patients and caregivers? I've stumbled across a few, but they are either inactive/old and/or extremely cumbersome to use. Thoughts?
ReplyDeleteHi Jenn.
ReplyDeleteThe one I first found when I was diagnosed many years ago is from Lymphoma.com.It's a Non Hodgkin's list, not just FL. People don't post very often, but they are a very knowledgeable, supportive, generous group. If you have questions, it's a good place to go for education, especially if you are someone who needs a rational argument to overcome an emotional situation.
The other one I like is the Living with Follicular Lymphoma group on Facebook. One of the administrators is Nicola Mendhelson, who is a Facebook VP. It's very large (a few thousand people), and international. Some of the advice can be (to me) a little non-science-based and suspect (lots of "I eat broccoli every day and it cured my FL"), but also lots of people who will counter that kind of thing (and point out other reasons why FL isn't actively growing). I think the FB has some advantages: lots of people from all over the world, so if you post at 3:00am in the U.S., there's probably someone on there; lots of people willing to share experiences, if you want to know what to expect from a treatment, for example; mostly very kind people who are happy to give you what you need from group. Disadvantages? Can be non-sciencey a lot of the time. But if you want emotional support from people who have been through the same stuff as you, it's a good place to go.
Other groups have similar set-ups (like LLS, LRF, Blood-Cancer.com), but not as active. You could also try whatever large cancer hospital is nearby you; they often have face-to-face support groups for cancer, and might be doing them by zoom these days, if you want something more personal.
Good luck with the search. They can be very helpful. And as I've mentioned before, I'm always happy to share my experiences or answer questions, either here in the comments, or by email.
Bob