Please tell me why……

[Wendrew]

my doc wanted a BMB to confirm PV. Right afterwards I read there’s a blood test to confirm Jak2. So why would a dr. Advocate for the biopsy over the blood test?

[Solyesh]

Jak2 can be confirmed via blood test or via BMB. My MPN specialist advocates for a BMB as standard of care for all his patients. In his opinion it provides additional information (cell structure; fibrosis; overall status of marrow) that a simple blood test cannot. He also uses it as a baseline for future to be able to compare for any changes/progression.

Many people do not have BMBs but I tend to agree with my specialist that the additional information and the baseline reading are important. A specialist should be able to determine (in most cases) what type of MPN one has by different criteria - a BMB is just another tool in the analytical tool box.

[Wendrew in reply to Solyesh]

Thanks for the info!

[Carol0925 in reply to Solyesh]

Totally agree with you. Always good to have a baseline.

[Wendrew in reply to Solyesh]

Thanks to all for your responses

[Cat1001954]

hi I was also told to have bmb to confirm my ET

[Cja1956]

You can get much more information from a BMB than a blood test. I found out in 2019 that my ET had progressed to MF from a BMB.

[BlackOrangeCat]

I was diagnosed with Molecular Negative Polycythaemia Vera in August 2023. A blood test was an indicator, but wasn’t conclusive, that’s why my Consultant Haematologist said I needed a bone marrow biopsy to help confirm diagnosis and I assume put me on the right treatment regimen.

Consultant told me 97% of people in Britain who have my condition have the JAK2 gene mutation. I’m part of the 3% who don’t. I’m “watch and wait”, with daily aspirin, regular blood tests and venesection as needed.

I hope my reply may help clarify why a BMB is being recommended to confirm, but ask your doctor if you’ve not been told like I was, it may not be same for you.

[Hidden]

Hi, I started having symptoms in January 2021, my platelets were 1800. Had an appointment at hematology department, consultant thought it was ET. Recommended a bmb and confirmed it wasn't ET but MF. Wasn't the best news but meant the treatment was targeted to MF and not ET.

[Lifam]

As far as I acknowledged, BMB provides more accurate diagnosis. I had BMB about 5 years ago, confirmed I have ET JAK2.

[Mu55]

I had BMB in 2013 & 2014 both negative then in 2015 I had blood test confirmed jak2 and ET !!

[monarch5000]

There's also an inexpensive EPO blood test to help confirm primary PV. 80-85% of patients with primary PV have an EPO test value of less than about 5.0. The EPO blood test can also help rule out primary PV; e.g. if the EPO test value greater than about 8.0 the patient likely has secondary PV which is not a blood cancer.

A BMB can help resolve ambiguities in the initial blood test results, if any. Example: My initial Jak2 blood test was negative for the Jak2 mutation so I was falsely told: "you don't have PV". I then suffered a whole year with PV like symptoms because I wasn't prescribed any treatment. Finally, after some emergency room visits for dizziness, red eyes, burning feet and night sweats I convinced my hematologist to order a BMB which revealed I did have the Jak2 mutation after all.

My battles didn't end there - my hematologist wanted to put me on an archaic medicine -hydroxyurea - that only stops blood clots, but doesn't slow or stop disease progression. I learned from Facebook and Youtube about the drug Pegasys interferon and sought out an interferon friendly hematologist to get a prescription for it.

[Gipsy123]

Dear Wendrew

I’m an advocate of having a BMB and a blood test too -I’m now in the process of getting a blood test. The BMB I had in 2017 confirmed that I had MF, because it showed the fibrosis and other changes . Downside of BMB, at least in the hospitals I’ve had it done at in England, is that the quality of the sample depends on the skill of the person taking it I’ve had three now, and two of them were described as -short, crushed cores.

The other thing I’ve been told -I think by a haematologist at some stage -is that bone marrow is a mosaic, and genetic changes can be present in one part but not another.

Anyway, it was my first BMB (Sample taken by haematologist) that gave me access to ruxolitinib, and (apart from the increased risk of a nasty skin cancer -sarcomatoid squamous cell carcinoma -which sadly I developed) I’ve done well on it. So watch out for skin changes, especially if you’ve had sun exposure in the past. My SSCC developed rapidly after the rux dose was increased from 15mg twice a day to 20 mg twice a day.

I’m also now taking EPO injections again, to keep my Hb. up 10k every five days. So far so good.

Image of sarcomatoid squamous cell carcinoma

[Ebot]

Hi there.

Sounds like your doc is being thorough. The BMB provides really useful baseline results that can be helpful to understand how your disease may (or may not) develop over the years.

However, it would be unusual for a doc to ‘advocate a BMB over a JAK2 blood test’ as each serves a different purpose. I’d definitely check / question whether a blood test has been done and the outcome.

Wishing you all the best.

[Wyebird]

Solyesh explains it well, my opinion is that and that of a few drs I believe , they might want to confirm diagnosis . I didn’t have neither was I offered a bmb. I have ET Calr confirmed by a blood test.

If you don’t want it question his/her line of thoughts.

[Jamesxyz]

Hi,

My Dr.'s all set BMB only necessary if blood test does not come back positive for mutation. Mine came back positive for jak2. He said a BMB would give us more info, but would not change the treatment. So not necessary.

Just my 2 cents.

[Hidden]

Hello Wendrew, wishing you well. This is a great forum for support and information. I have been especially helped by both Hunter and Mazdc.

I encourage you to make certain your provider is an MPN specialist and is determined to find the best ways to treat you and your specific needs. Rare diseases require both.

I was sent for a BMB after 7 years of being treated for PV only to find out that I was misdiagnosed… by three different board certified hematologist/oncologists. I am now on my way to better health.

If you are at all uncomfortable with your doctor or unsure of your treatment plan you should find a doctor you trust. A second ( or as in my case) even a third or fourth opinion can make all the difference in your health.

I need to find out how to add to this group’s list of preferred doctors so that I can help others in my area to find Dr Abbasi. I sincerely hope you find the right provider for your treatment

PS. Don’t be fearful of the BMB. It’s very briefly painful and so worth doing for the information it provides.

[Serge___]

a genetic test can show a mutation.

A BMB will show what is going on in your bone marrow.