How often do you think a bone marrow biopsy is required?

@nohrt4me I was just reading more about that yesterday, how blood work is becoming sophisticated enough with NGS (next generation sequencing), that test results are on par with a bone marrow biopsy. While it won’t completely replace a bmbx it may reduce the need in certain circumstances, saving time, $$$ and anxiety for a lot of patients. ☺️

@nypara66 Same with me. I just have quarterly blood tests. My platelets stay between 450-500. I only take a baby aspirin as I am symptom free.

Hi @panamsandy ,
I do quarterly blood labs also and take low dose aspirin. I am fine with that and have no symptoms at all and never have had any, so I am not repeating all the other tests that have already been done on me. I do not have any high risk mutations and I know the bone marrow transplant specialist I saw one year ago told me that I do not fit into the categories they have. My not at all painful finger issue is an unusual case also that they have not figured out, even after five hand specialists’ different opinions.

It's going to depend on your situation. You'll hear about how very case is different, but unless you have active myeloma that really isn't a factor. They need an initial bone marrow if there's a possibility you might have SMM. That doesn't change management. It just helps them decide how closely you need to be monitored. The biopsy gives them quite a bit of information about what's going on in your marrow. They need to know how much of your clone they can see. Myeloma cells are patchy though so that number may not be as high as it could be from a random sample. Tests like flow cytometry and FISH give them more accurate counts of you normal cells, a place to test for amyloidosis early, and a look at some of your clone's genetics. Those numbers are more predictive than the percentage of clone so if any of the FISH tests fail you might need another biopsy. During watch and wait they are waiting for signs your disease is progressing but what they're watching for is change. If they think a biopsy will give them a better look at what might be changing you could be asked to do more biopsies even if you don't progress to active myeloma. To that extent "every case is different" matters does come into play. There isn't a set number of biopsies everyone is asked to undergo. It really depends on what your doctor thinks a biopsy will reveal and if the biopsy is the best way to get the information. Bone marrow biopsies are generally considered low risk for the majority of patients.

Hi @nohrt4me ,
Yes, I definitely should have stopped at just that when I was told I “for sure” had ET by my oncologist/hematologist at that time. After I asked her for a bone marrow biopsy to confirm ET as I have CALR mutation, I was told by that same oncologist/hemotologist that I have primary myelofibrosis instead. Oddly enough, my lab work now looks just as it did before my bone marrow biopsy day and I have no symptoms after 1.5 years which I hope continues, God willing. I did see a MPN specialist recently who did not read my chart before seeing me and wrote that I have JAK2 and CALR mutations which I do not have! I will not be seeing her ever again! I learned that not even MPN specialists are true experts in the huge variety of presentations of unusual lab work with patients like us and some do not read before seeing a new patient!
Hope you are doing well and that you are getting everything in proper order for your proposed heart procedure. Please keep us posted.

I would think the frequency of a required BMB would be dependent on your diagnosis and related blood tests/numbers. Initially I had 2 BMB within 6 months of each other after being diagnosed with AML (Acute Myeloid Leukemia). My numbers, while remaining low, are consistent and my BMBs are now done annually in December.
Last December’s test found the SF3B1 mutation and I am now being treated for MDS (Myelodsplastic Syndrome). In June I started taking 2 tablets of INQOVI every 42 days.
Incredibly blessed to be living a terrific life thanks to my care team and the great researchers coming up with less invasive (port vs pill) treatments for us! Giving thanks and gratitude daily is my mantra.

I believe one
Should Only have them done when there is some actionable information they can provide.
I was dxed with MGUS in 2002. Despite queries I have said no to all bmbs. I am not planning on treatment nor making treatment decisions so why do one - or any???

Hi @hsminc ,
I completely agree with you and thank you for sharing your opinion.

I was diagnosed with ET (no JAK 2) over 30 years ago. HU increasing from 3500 -5000 mg over the last decade or more has kept my platelets under 400. I have not had a bone marrow biopsy since my initial diagnosis. It makes sense that only a change should necessitate another biopsy. Good luck to you!

@panamsandy may I ask your age as I do not want to start on Hydroxyurea if I don’t have to? Right now I am taking baby aspirin with counts in the 500s