Continuing with a look at Follicular Lymphoma research at ASCO this year.
As I said before, this year's ASCO didn't have any real blockbuster FL research. But some of the most interesting work at the conference are the presentations that do things like confirm what we might already suspect, or look at what seem like small issues, but which might make a pretty good difference in patients' lives.
The presentation I'm looking at does both of those things, and it deals with an issue that's important to me. It's called "Impact of imaging frequency on progression free survival in Alliance clinical trials enrolling patients with untreated follicular lymphoma." It asks the question, If FL patients in clinical trials receive fewer PET scans, will that affect Progression Free Survival?
The answer is No. Fewer scans do not have negative outcomes for patients, and in fact might have some benefits.
The research was done by a team that is concerned with the ways testing is done on FL patients. Their previous research looked at Bone Marrow Biopsies, and called for eliminating them as part of FL patients' testing schedule. That means less money spent on testing and a small improvement in Quality of Life.
This research comes to a similar conclusion. More PET scans means higher treatment costs, as well as increased exposure to radiation, and eliminating them would help with Quality of Life.
For the research, the team looked back at FL patients who were diagnosed between 2008 and 2016 and who had not yet been treated, and who were entering clinical trials. When a trial is developed, patients are put on a schedule for PET scans. (Those of you who have been in trials will know this.) They usually get a scan before treatment starts, to get a baseline -- a measure of how active the cancer is and where it is showing up. They might also get a scan at the midpoint -- maybe after 3 of the 6 rounds of treatment, for example, so get a sense of whether the treatment is working and if it's worth continuing. Then they will get a scan after the final round of treatment, and maybe another a few months later to see if the results were durable. PET scans are an easy and objective way of measuring how well a treatment is working.
Some trials use PET scans more frequently -- maybe after each round of treatment. The more frequent scans (the thinking goes) might help the doctor see whether or not the treatment is working, and if it isn't, allows the doctor to change direction and try something new.
The ASCO research looked at different PET schedules among the patients in the study, with one group getting the scans twice as frequently as the other. But there was no real difference between the two groups in terms of Progression Free Survival. In other words, the more frequent scans don't help doctors catch the cancer earlier. And the frequent scans just add more negative things -- more radiation, more money spent, more time traveling to the imaging center. And lower quality of life.
As I said, this one is kind of personal for me. A few years ago, I had an oncologist who insisted I get a PET scan. I asked if there was some reason for it that I wasn't aware of (my blood work was normal and I hadn't reported any new nodes popping up). He said no, but it would be good to have a "new baseline," since I hadn't had a scan in about 5 years. I didn't make the appointment, and I switched oncologists. I'm still young, and I expect to live for many more years. I don't need the unnecessary radiation. My current oncologist has actually been involved in some research that backs up the idea that FL patients get more scans than are necessary (though I didn't know that when I first started seeing him).
So this is not research that will get much attention -- there are no articles being written about it on oncology websites. But it's one of those ASCO presentations that I really like coming across, one that speaks to out everyday lives as patients, and tries to make them a little bit better.
More ASCO reviews coming soon.
With the potential elimination of bone marrow biopsy during diagnosis, wouldn't / shouldn't that lead to "bone marrow involvement" as a non-factor for staging? I would assume the indifference of bone marrow involvement would mean only "other organ system involvement" would be the criteria in Stage 3 vs Stage 4 diagnosis.
ReplyDeleteI think that's probably right. There are so few patients with bone marrow involvement (maybe 1%) that it doesn't make much sense to make them a regular practice. So a PET scan would show whether or not there is organ involvement. The bigger issue is that there isn't much difference between treatment plans for stage 3 and stage 4; they'll both likely require systemic treatment. If there is some other reason to be more aggressive with treatment, that might show up as B symptoms, for example, like night sweats or rapid weight loss. PET scans will remain. Liquid biopsies will probably become a regular part of diagnosis. Bone marrow biopsies will die out as less effective than other methods. (All of this, of course, is my own speculation. As I am quick to remind everyone, I'm not a doctor or cancer researcher, just a patient who has been reading a lot for 15 years.)
ReplyDeleteTake care.
Bob
Hi Bob, thank you for the comment! I will say, I think it is <1% of people that benefit from the information of knowing whether they have it or not, not necessary that <1% of people have bone marrow involvement. But yes, I agree - regardless, it does not appear to be differentiator between stages 3 and 4, as treatment plans do not change.
ReplyDeleteWhen I was diagnosed at age 29 in 2020, they initially thought it was localized (potentially stage 1) since I had a biopsy done when my tonsils were removed due to one being significantly swollen. After PET, it was apparent I had involvement above and below the diaphragm although no other organs. At the time, my doctor asked if I would want a bone marrow biopsy - noting that the information would be just that, additional information but nothing that would change my treatment plan but would technically put me in Stage IV. Ultimately, I decided to go with the biopsy since more information wasn't a bad thing for me at the time; I wanted to know as much as possible about my own disease and where it's at.
After coming back positive, I was technically Stage IV but with low tumor burden so I have been on Watch-and-wait ever since. It's difficult to hear "you have Stage IV cancer" but at the same time, with the uniqueness of FL, that it's not a death sentence. It's most difficult describing it with friends or family without sounding like you're full of false hope because typically "Stage IV cancer" to people unfamiliar with cancer/oncology mean they don't have long.
All that to say, it's positive to know that Stage 3 v Stage 4 decided only by Bone Marrow involvement is perhaps outdated. Will this affect how FLIPI/FLIPI2 is decided? How staging is decided? I think it should if oncologists are openly saying bone marrow involvement isn't a significant factor in OS, PFS, etc.
Here's to many years of life left to live while watching the landscape of FL treatment progress to potentially curative (or at the very least, longer OS) outcomes! Cheers