Lymphomation.org's parent group, Patients Against Lymphoma, recently posted a video on their Facebook page (click here if you want to Like and join) that does a very good job of explaining Immunotherapy, an important approach to fighting cancer.
The video was produced by the Dana-Farber Cancer Institute in Boston, and shows how the specific immunotherapy known as PD-1 pathway inhibitors work. I'd explain it here, but it's a short, clear, and kind of fun video, so you can watch it yourself. Click the "video" link above, or watch here:
Good stuff.
PD-1 inhibitors are showing some success with a bunch of different cancers, both solid and liquid, including Follicular Lymphoma. Certainly worth keeping an eye on.
Thanks Bob.
ReplyDeleteI was diagnosed July 2014 with FL and have gained valuable info from your blog. I had my quarterly Dr. apt on Oct. 29th and during that session, I asked my dr. about new treatments. She brought up the PD1-PDL1 antibody treatments, which I didn't know much about. So I found it quite a coincidence that today when I read your blog, you had information on this very subject.
Thanks again for all your posts.
Mark
Mark, thanks for reading, and sorry to hear about your diagnosis. That's kind of cool that I posted at the same time you heard about it from your doctor. It's worth exploring further, given the kind of excitement it has been generating. And great that your doc is willing to talk about new treatments. I hope you won't need to deal with any of that for a good long time.
ReplyDeleteBob
Bob,
ReplyDeleteYou received Rituxan monotheraphy at induction correct? If I'm not mistaken that must have been an "off-label" usage since the indictions for frontline Rituxan in NHL are with chemo only. Was it difficult getting approval from your insurance company?
Hi Bob,
ReplyDeleteI was diagnosed with Marginal Zone NHL a little over 2 years ago and had RCHOP off the bat, because I was really sick (in ICU for 2 weeks, several blood transfusions etc)followed by 2 yrs of Rituxin maintenance. I'm sorry if this is off topic, but I was wondering how the news of Senator Fred Thompson's death hit you. He was diagnosed with Marginal Zone Lymphoma 10 years ago, had radiation, then eventually was treated with Retuxim and went into remission for several years. I don't know about you, but every time we lose a public figure to NHL.. specifically Indolent NHL, it brings me right back.. Thank God for blogs like yours that focus on all the new treatments etc. However,situations such as Thompson's death make me realize that sometimes, we do run out of options...
Johnnyboy,
ReplyDeleteFirst-line Rituxan is officially off-label for Follicular Lymphoma, but insurance companies routinely approve off-label treatments. I don't remember what the formal reasoning is, but I think it's essentially that enough people do it successfully that it has become an accepted use. A pretty big chunk of FL patients have Rituxan as a first-line treatment (something like 20-25%, though I need to look that up), so it's shown to be safe and effective. For example, you can find Aetna's policy statement on Rituxan online at http://www.aetna.com/cpb/medical/data/300_399/0314.html. They list acceptable uses for Rituxan, and they say "The U.S. Pharmacopoeial Convention (2003) has concluded that rituximab (Rituxan) is accepted for the following off-label indications: a) as first-line treatment of diffuse aggressive NHL; b) treatment of relapsed or refractory diffuse aggressive NHL; c) first-line treatment of intermediate to high-grade NHL; and d) first-line treatment of low-grade NHL." So even though the FDA hasn't approved it based on a formal clinical trial, it is an acceptable off-label use. I had no problem at all getting approval, and I'm sure most people wouldn't. Probably worth asking them, before you need it, if only to ease your own mind.
(By the way, I love the "Johnnyboy" handle. My father still calls me Johnny Boy, even though my name isn't John, when I'm about to do something naughty.)
Hi Bob,
ReplyDeleteI have just been diagnosed with follicular lymphoma two weeks ago and I am loosing my mind. I will be having another biopsy, blood tests, the bone marrow stuff (sorry I haven't yet learned the proper vocabulary),the scans etc. Then I will be waiting for reults... hmmm. I have found your blog on the internet and it keeps me from loosing my mind completely. But I have noticed that most people affected by FL who comment on your blog (and seem to be doing quite well)are between 40 and 50. Any thoughts for us oldies (I'm 61)whose OS ates are always scary.
Best regards,
Marie
Hi Marie.
ReplyDeleteSo sorry to hear about your diagnosis. Those first few weeks are not fun -- lots of worry and uncertainty. That was absolutely the worst time of my life. But it gets better! Once the tests are over, and you have some idea of what you are dealing with, and a plan for how to deal with it all (even if it's watching and waiting), the panic gives way to plain old worry, and then eventually to some way of learning to live with it. You're almost through with the hardest part.
As for the youngsters in their 40s and 50s who comment, I think they might be attracted to the blog, and connect with me, because I was diagnosed at 40. But FL is much more commonly diagnosed in people in their 60s. Don't think that you're somehow an outlier because you read comments here from people in their 40s. We youngsters are the real outliers.
And as for OS numbers, here are the important things to remember: first OS is always a median, which means that half of the people being measured will have an OS below that number, but half will half an OS above it. When you've just been diagnosed, it's easy to look at the OS as an absolute. It's not. Patients at 60 might have a statistical OS of 12 years, but half of them will live to 73, 78, 85, 92, and beyond.
The other thing to remember is that OS is OVERALL survival, not survival based on lymphoma. It measures survival by any means -- health problems, accidents, heart attacks because no Canadian teams will make the NHL playoffs this year -- whatever. So being an FL patient might not have any effect at all on someone's overall survival. Frankly, bad penalty killing might be a bigger issue.
I know that's a lot easier for someone like me who has had FL for 8 years to think this way, but things might be more clear very soon, after the biopsy, blood tests, and bone marrow stuff. At the very least, you'll have a plan then. For me, that was a big help.
I'm going to try to write about OS this weekend, and look at your concerns in a little more detail.
Good luck, Marie. Keep us updated on test results and treatment plans.
Bob