I wasn't at the Congress, but OncLive has a couple of articles (one with a video) describing the FL session. (OncLive has a whole series of pieces on the sessions for different blood cancer subtypes, and they posted them almost immediately. OncLive has always been good, but they are just nailing it lately. My thanks to them.)
(While I'm at it, I just want to say that I would love to actually be at all of these meetings, like ASH and ASCO and NCCN and the rest. I wish I had the time and money to go. Maybe some day after i retire.)
(And yes, even though I'm 15 or 20 years from retiring, I do plan to be around until then -- and longer after that.)
Anyway, both articles focus on Dr. Jane Winter from Northwestern University in Chicago. (I believe she was the expert who presented on Follicular Lymphoma.)
The first OncLive article gives an overview of the session. Some of the issues she covered:
- Stage 1 FL can sometimes be treated with radiotherapy -- traditional radiation. A PET scan can help identify if this approach will be helpful. Up to half of stage 1 patients can possibly be cured with radiotherapy. Unfortunately, fewer than 1/3 of patients who could benefit from this treatment actually get it. (Don't know why, but I suspect that the difficulty of diagnosing at stage 1 might be part of it -- for most of us, we don't actually notice symptoms until stage 3 or 4.)
- For many patients with stage 3 or 4 disease, watch and wait is still an option. The signals that it is time to treat? Symptoms start to show up, threats to organs [that's what happened with me -- swollen inguinal nodes started pushing on things], cytopenia or low blood counts, bulky disease, and steady disease progression. Right now, there is no evidence that watching and waiting results in a lower Overall Survival than treating right away.
- Maintenance Rituxan after a treatment does not offer a better Quality of Life than treating and then waiting for a reason to treat.
- Long-term follow up of patients who received R + Chemo shows that there is no one treatment that prolongs Overall Survival better than others.
- R-squared (Rituxan + Revlimid/Lenalidomide) continues to impress experts, enough that the results of a phase 3 clinical trial might be enough to recommend that the combination replace chemotherapy as the standard choice.
- Patients who receive R-CHOP and then have progressive disease within 24 months have a lower survival rate than other patients. This group accounts for about 20% of Follicular Lymphoma patients. One of the big challenges for FL researchers is figuring out how to identify these patients early, and how to treat them.
So these articles aren't presenting anything brand new. And that makes sense -- they are reporting on a session that was meant to get oncologists up to date on a bunch of things. But it's always interesting to see what FL experts think is important enough to want to make sure all of their peers know about it. I hope we see more in the near future about that 20% of patients.
(And I'm serious about wanting to go to one of these conferences. If any of you is a kindly billionaire who grants wishes, my email is in the profile on the right.)
When I win the powerball, I'll send you! ( lol)
ReplyDeleteAnother good article. I was interested to read the snippet about maintenance Rituxan.
Also, is Revlimid an immunotherapy?)
Here I am 3 years later on W & W. grade 1 stage 4 .
No treatment yet, but as you've written before, the emotional aspect of this disease is taxing.
Thanks Bob. Continued good health to you,
Donna
Hi Bob,
ReplyDeleteWhy don't you start a "Go Fund Me" page? I'm sure we'd all be willing to donate to get you to one of these summits!
Personally, can you define "progression of disease"? Do they look at it from "date of diagnosis" or "date treatment ended"? I'm worried I'm being given a poor outcome scenario for survival since recent CT scan has indicated the start of lymph node growth, even though I have absolutely no other symptoms, including clean blood work, so I'll continue W&W. Would "progression of disease" mean once W&W has ended and new treatment begins?
Worrying and Waiting,
Shelly
Hi Donna.
ReplyDeleteGood luck with Powerball! I'll hold you to it when you win!
Revlimid is considered an immunotherapy treatment. It actually does a few different things, but one of them is "immunomodulatory" -- it modulates or changes the immune system. In this case, Revlimid stops stromal cells from doing their job. Stromal cells help the bone marrow produce immune cells, so affecting the stromal cells keeps that from happening. There's more to it than that, but, yeah, it's considered a type of Immunotherapy.
Bob
Hi Shelly.
ReplyDeleteI'd consider a Go Fund Me page, but it's more fun to wait for a billionaire. (Plus, Donna already said she's send me when she winds Powerball.)
"Progression of disease" is a funny term. It's broad enough that, while it means a specific thing, it doesn't apply to everyone who experience that thing. So it usually means the disease had moved along in some way -- nodes are growing, other symptoms are showing up, whatever. When they start measuring depends on what they are looking for. So my understanding is that for that 20% group, they are looking at people who progress after R + chemo, and they start measuring after the treatment starts.
But it's important to look at the big picture there, too. My sense is that the people in that 20% have a pretty aggressive return of the disease. It's not everyone in that group -- only 50%. So if you do have some symptoms, they could be just the normal waxing and waning that many of experience, and not a sign that things are progressing rapidly.
I'm sorry you have to go through this. It sounds like your oncologist is on top of it, though, with the scan and blood work. Paying attention yourself is nerve-wracking, but the best way to make sure things aren't progressing.
I know you went almost two full years before you saw the progression. My advice is to not get too caught up in numbers. The 24 months isn't a magic number, just a trend that researchers noticed.
Take care, Shelly. I hope your next visit gives you some good news that will ease your mind -- good blood work, smaller nodes, or just feeling good. Let us know how you're doing.
Bob