I'm at that point now where I'm going back to ASCO presentations and describing the ones that I find interesting. Not necessarily the most ground-breaking or important, but interesting (even if it's just interesting to me).
This one caught my eye, because it immediately made me think about something I saw on Twitter about two months ago that made me laugh.
The ASCO presentation is called "Relevance of bone marrow biopsies for response assessment in National Clinical Trials Network follicular lymphoma clinical trials."
The tweet that made me laugh came as Covid-19 testing was really getting started. If you're unaware, Covid-19 tests (at least the ones that I have seen) involve having a long swab put up your nose so it can get a sample from your sinus. A friend described it to me as "having someone poke your brain for 20 seconds." What made me laugh was seeing someone complain about how unpleasant the test was. Another cancer patient commented, "Unpleasant? These people have obviously never had a bone marrow biopsy. Suck it up, Buttercup."
(I really do enjoy hearing other cancer patients describe experiences that I can relate to.)
If you or a loved one were lucky enough not to have a BMB, it's one of the diagnostic tools that doctors use to stage a patient's lymphoma. By taking a sample of bone marrow (which involves getting into a patient's bone), the doctor can tell if the lymphoma cells have gone beyond the lymph nodes, which would make the patient stage 4.
But here's the problem -- stage doesn't really impact treatment as much as grade does. In other words, stage 3 and stage 4 are usually treated the same; the treatment will get to the cancer cells no matter where they are. Grade, however, is often a measure of how aggressive the cancer is. More aggressive lymphoma can mean more aggressive treatment.
This ASCO presentation looked at whether bone marrow biopsies had any impact on treatment. Did having the results of a BMB change things for the patient?
The short answer is, No.
Researchers looked at 580 Follicular Lymphoma patients from 7 clinical trials, who had BMBs before treatment. Some also had a BMB treatment. They also had scans before and after treatment. By comparing those patients who had the post-treatment BMB with those who didn't, and then tracking their progress, the researchers found that there was no difference in either Progression Free Survival or Overall Survival. In other words, having the BMBs didn't help researchers predict how well they would do. That only happened in 5 of the 580 patients -- less than 1%. The scans did a better job of helping doctors understand how well patients were doing.
If that's the case, then why bother with Bone Marrow Biopsies? At the very least, a post-treatment BMB seems unnecessary, since it doesn't tell the doctors anything useful, it costs time and money, and it might discourage patients from being art of clinical trials (something the researchers are especially concerned about).
I don't think BMBs are going away as part of the first tests that patients get right after diagnosis. But I'm all for doing away with unnecessary pain and expense after that.
It's a fairly small point, affecting a fairly small group of patients (no one mentioned a second BMB to me after treatment, though they might be a more common practice in clinical trials). But it is a nice study in getting the lymphoma community to think more about Quality of Life -- how the need for information has to be balanced with the needs of patients -- our time, money, and physical comfort.
There's been a lot happening in the last few years on testing and over-testing, and I'm happy to see a little more like this. It's another reason to think BMBs suck.
Subscribe to:
Post Comments (Atom)
8 comments:
Hi Bob,
I was dx in March of 2007. I had a bone marrow biopsy done at the oncologists office in the small town where I was 1st dx. It wasn't as bad as I thought, but it was something I was glad to get over with. The biopsy was negative. When it came time for a second opinion I went to UCLA. The lymphoma specialist there decided I needed another BMB. She suspected I had fNHL in my marrow. She described it as closing your eyes and putting a pool cleaning net in your swimming pool to see if it has leaves in it. Your net may come up with no leaves, but that doesn't mean there aren't any in the whole pool. I had another BMB in her office at UCLA. It too came up negative. She still suspected I had it in the marrow and began treating me with the dx of stage 4 grade 3a. After 6 rounds of R-Chop and 2 years of R Maint. I remain in CR or NED. My Onc did state that the most important dx was the grade. I have an appointment with her next month. I am going to ask her if my treatment would have been any different if she had discovered fNHL in my bone marrow. I have been quite lucky during my 13 years with fNHL, in my opinion the worst pain I experienced throughout all my treatments was the shingles that developed on my face after my 6 rounds of R-Chop. I would rather go through another 6 rounds of chemo than to get shingles on my face again. It has indeed been an amazing journey. Thanks to you and your blog, it has been a much more pleasant one.
Thanks so much for sharing your experience. I love the "leaves in the pool" comparison. (Very LA, I think.) Sounds like you know just what a BMB is all about. Mine wasn't too awful, either, and I think it's because (as I have discovered over 12 years) I have a pretty high tolerance for pain, plus I had a young oncologist who was very gentle with me. I'll be interested to hear about what your doc says about treatment options and how much the BMB had an affect. Be sure to share. Great news about the continued NED. I hope it continues for many more years.
Bob
I was diagnosed nine years ago with follicular lymphoma and have had no treatment, having been on watch and wait with stable disease ever since.
My understanding is that historically a BMB was done to help diagnose advance stage disease, but is now clinically unnecessary with the advent of CAT & PET scans that are a far more useful diagnostic tool. If therefore a BMB rarely influences treatment decisions for follicular lymphoma patients, then patients should be told so they can make an informed decision on whether or not they want one, as any invasive procedure carries infection and other risks.
I never had a BMB, as even nine years ago it was unusual for early stage patients diagnosed as such by scans, to be given a BMB.
In a clinical trial setting the argument is presumably more difficult, if one is trying to establish total elimination of the disease.
I get the sense that BMBs are one of those "We've always done it that way, so we're going to keep doing it" type of things. I've heard from lots of patients with older docs who suggest R-CHOP as a first treatment, and I think it's the same attitude -- always worked, why change? (even though there are better options). It will take some convincing for BMBs to stop, and maybe this is a first step.
(And trials don't always have a goal of total elimination of the disease, at least long-term. Most seem more interested in PFS than OS. And even then, there are newer ways of measuring metabolic complete response than a BMB.)
Hey Bob
BMBs were a requirement for four clinical trials my wife participated in: Ibrutinib, CAR-T (two infusions), and her current ViPOR trial. It would be great if the clinical trials did not require a BMB. As you said, the BMB results did not alter the treatment for my wife.
William
Thanks, William. Hope you're both doing OK.
I may be exaggerating with this but I don't think so...
My Bone Marrow Biopsy may have saved my life!
Once diagnosed with FL, before my first meeting with the ONC I was given, scans, blood tests, etc., AND a BMB.
I reported to my first post-test visit and my Onc told me that given all my scans, tests, etc., and my lack of any physical symptoms that I was going to be on a watch and wait and I would see him again in three months. Good news all round.
That same evening at 6 P.M. my Onc called me and told me that my BMB results had not been available when we met earlier, but it was now and it showed my "bone marrow was 95% infected with lymphoma."
He asked me if I could be available for treatment the next morning at 7 A.M. I was going to be started on, "Rituximab and Bendamustine."
I showed up and was told, "There's been a change, you are only going to get Bendamustine. For two reasons, one is that with only "5% healthy bcells there is a mathematical chance that we'll kill all your healthy bcells. Secondly, the two could cause too many cells to die and a Cytokine Release Syndrome situation could overwhelm your organs and kill you."
After 6 months of (mostly) both R & B my next BMB showed "5% infected with lymphoma." My Onc said that was a "Brilliant result."
Now, 4 years later I've had no new treatments yet.
On the "pain" with BMB's I had almost zero pain. The two doctors that gave me the two BMB's I've had were both seasoned veterans at giving the test. One of their nurse's told me that the "pain" is mostly an issue with Drs. who rarely give the test. In addition, even experienced Drs. can have problems with "seriously obese people," as it is difficult to get the exact correct spot.
Wow! That's quite the story. Great that you had the BMB, and that it helped with identifying the advanced stage FL. Strange that the scans didn't pick up the extent of the disease, and that you had no other symptoms. But we all experience this weird disease differently, so maybe I shouldn't be surprised.
Great perspective on this. Thanks for sharing it.
Bob
Post a Comment