We're in that slow period for Follicular Lymphoma news. After the big conferences in June and July, when all of the really interesting research gets shared, everyone seems to go on vacation for the month of August. I'm guessing we will see some more new FL material in a couple of weeks.
In the meantime, though, here are two things to keep you going.
First, OncLive has another video series on Follicular Lymphoma. I've linked to these before -- they post a series of short videos on a topic, putting up a new one every few days, so they form a series when they're all done.
This series is on the topic "The Evolving Landscape of Therapy for Follicular Lymphoma," and it features two of my favorite Lymphoma Rock Stars -- Dr. Bruce Cheson and Dr. Anas Younes. There are four videos in the series so far. I'm guessing there will be a few more.
It starts off with a short video on Diagnosing and Staging FL. At the end, Dr. Cheson mentions the Ann Arbor staging system vs. the Lugano system (named after the conference that takes place every year in Lugano). As he says, the Lugano system is very recent -- from 2016. The Lugano system involves using a PET-CT scan to help with staging. I don't know if it is used "officially" yet, though there are probably lots of people using it.
Other videos in the series (so far) look at Risk Stratifying (figuring out which patients are low, medium, or high risk), and figuring out the best treatments for those risks; and Triggers for Therapies (figuring out when to actually give treatments), something we all worry about, especially those who have watched and waited. There might be some more videos added to the series, so check back there in a few days.
It's all good stuff from two great Lymphoma experts. Not necessarily anything new, but always nice to see something that shows the up-to-date thinking of people in the lymphoma community.
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My second item is about the WEGO Health Awards. As I wrote in July, I have been nominated for two awards from WEGO Health -- Best in Show: Blog and Best Kept Secret. A whole bunch of you endorsed me for these awards, and I am so very grateful. The endorsement period ends on September 1, so if you are inclined, please consider endorsing me if you haven't already done so. You can endorse me by clicking here; they will ask for an email address to make sure people don't vote more than once.
After the Endorsement period ends, the three health advocates with the most endorsements in each category will move on to the finals, along with two others who are chosen by a panel of judges. Overall winners will be announced in October.
Thank you all once again for reading. As I've said before, I would write this blog even if no one but my family actually read it (and for a few years, that was true). But it's even better when I have such great readers who don't feel obligated to send me birthday cards and make conversation with me at Thanksgving dinner.
Hello Bob, I'm so very happy I have found your blog! You give so much information in very easy to understand terms! You could write a "lymphoma for dummies" book. lol.
ReplyDeleteWas wondering if you ever you ever read any research on the Beta-2 Microglobulin lab result?
I was diagnosed with FNHL a few weeks ago, had my PET/CT the other day, meet with ONC next week to go over results, but he already has me set up for the Benda/Riux starting 9/7/2017. I happened to see my beta lab at a 4.0, and of course, I googled it, and it stated patients with high Beta respond poorly to treatment! Not feeling well over reading that.
Will ask my Dr next week at appt.
Thanks again for all your info on FNHL
Saundra
Don't Google! Focus on your emotional health. You are not alone.
DeleteHi Saundra. I'm glad you are finding the blog useful.
ReplyDeleteBefore I go on, I want to remind you that I'm not an oncologist, or a cancer research, or any other kind of expert. I'm just a patient who reads a lot. Talk to your doctor.
From what I know about Beta-2 Microglobulin, an elevated level does mean that your FL is probably more aggressive than some types. How much more aggressive? I don't know. If the normal range for B2M is less than 3, and you have 4, I don't know if that's really high or just a little high. I do know this -- numbers are not destiny. So even if you have something higher than it should be, there's still a good chance that the treatment you get will do the job. Bendamustine + Rituxan is a popular choice, and lots of people have success with it. You might need to talk to your onc about follow-ups, and what your next steps will be, so you can be prepared (something I think all of us should do).
The good news is, whatever your prognosis, there are lots of treatment options after this, and lots of tools to help you and your doctor keep on top of your condition.
Spend the next week or two educating yourself as much as you can, and ask lots of questions -- no questions are out of bounds. And let us know how things are going, and how you're feeling.
Good luck, Saundra. I hope the B-R does a great job for you.
Bob
Thank you! I plan on getting very educated on this unwanted disease!
ReplyDeleteHello Bob
ReplyDeleteI faithfully read your blog every morning looking for the latest fNHL - you do not disappoint. Please keep it going.
William
No worries, William. I plan on being around for a very long time.
ReplyDeleteBob
So grateful for you!
DeleteThanks, Barbara! Hope you're doing well.
ReplyDelete