Is a Bone Marrow Biopsy Common Practice for ET?

[swimswam]

Just interested to know if it’s common practice to have a BMB for an MPN. I’ve heard of others, ( mainly in the USA ), that have had one to establish diagnosis, or to establish a baseline before medication, but it has never been mentioned to me in the uk. I am not desperate to have one, but was diagnosed Jak 2+ by a blood test, and I have never been offered a BMB. I was originally told I had a mild form of ET, now put on high dose Pegasys (135mg weekly), as my platlets are over 600. I asked if my condition was getting worse, but was only told they may increase me to 180 mg in the future. Is a BMB something I should be asking about, or is it considered an unnecessary procedure unless you seem to be transforming to MF.

[mhos61]

Hi swimswam.

Just to say, I’ve never had a bmb either, also ET diagnosed by Jak2+ and presentation. Like you, I’m not particularly bothered.

Have your platelets not lowered at all on Interferon therapy? I know from your past posts you are transferring to Pegasys. Hope you see better results with this.

[swimswam in reply to mhos61]

Standard Interferon seemed to stop working for me. Been on Peg 8 weeks, lowered platlets slightly, but from what I can gather from other people I think it can be slow to work, so still hoping.

[Applesnpears]

I'd say get a BMB if you can. It can be invaluable to provide a baseline in the state of your bone marrow. It might point your doctor to a particular course of treatment but probably most important to help interpret any BMB you might need some time in the future. In the future you and your doctor might be trying to understand a change in your condition/ blood counts.

Easy for me to say, it would be you having the procedure.

[Hidden]

Hiya, hey here in NZ it depends where you live. I have recently moved from Wellington and had one 5 years ago. Now living 4hours away in another city they were surprised I have had it done, because this Heamatoligist team dont do them as a course of diagnosis.

[Chaz1]

Not standard in UK although many ask to have it as a baseline. US tend to do it as its obviously more things to bill for. The same as why not standard in UK, to keep costs down. We opted for one with hubby. They asked to take extra for research & so now he has blood samples added to the research so its hopefully a positive thing for all. In UK it's more a personal choice, if you'd like it for your file then you can ask.

[Lifam]

BMB is the only proper diagnosis of blood cancers, can not determine correctly without a BMB.

PLEASE NOTE: It is not always necessary to have a BMB to diagnose a MPN. Maz

[AlyW]

I’m also in UK and was diagnosed as ET JAK2+ in 2016. A BMB was mentioned but the blood test seemed definitive and it wasn’t thought to be necessary. I’m quite ok with that!

[Hopetohelp in reply to AlyW]

Same for me. ET Jak2. UK. Not offered BMB and I am happy with that too. Baby aspirin daily and platelets around 720

[Wyebird]

No bmb for me because they found the mutated gene Et ( Calr). I think uk will do it if no mutation found or if you experience a change in symptoms and you are not responding to treatment as they would hope.

[MaggieSylvie]

Hi Wyeburdm If no mutation is found in the blood, does this mean it could be found in a bmb, or does it mean there isn't one? I am not clear whether some blood cancers are not due to a mutation at all.

[GardenGal3]

I was diagnosed with ET back in 2012, eventually I had a hematologist who insisted I have a BMB since he was not sure I had JAK2 or not. I had no problem with the bmb, but later a real great doctor who specializes in MPNs found NO Jak2 but the calr mutation. I'm only on Hydroxyurea, and doing very well. I DO live in the US so perhaps there's the bmb reasoning. In this case my insurance ("Obamacare") covered it well.

[Zanzibi]

I was diagnosed with ET about a month ago. My doctor talked to me at length about whether or not to get a BMB and recommended against. He did not think it would impact the treatment at this stage and we should wait a few years or see if anything changes. My platelets are at around 760-790, based on two different tests, and the recommendation is low dose aspirin until I am in my 60a or if I get a clot or something else changes. I am 56. The doctor was willing to schedule me for a BMB if I wanted, despite his recommendation to wait. I decided to wait. I am in the US.

[hunter5582]

The routine BMB depends on what diagnostic protocol the doc is following. Some require it. Others do not. It is not required to establish the diagnosis of ET. Some patients feel better having the results. Others would prefer not to have to undergo the procedure if it is not absolutely necessary (me included). I have had three hematologists her in the USA (including one leading MPN expert) tell me I did not need a BMB for my JAK2+PV evaluation and treatment. I was also advised that there is considerable discrepancy in the skill of providers who do the BMB and that in some locations the results are not reliable.

So the bottom line is what do you want? There is not a black and white guideline re. the need for a BMB, so your preferences are a determining factor.

Hope that helps.

[Hidden]

My partner was diagnosed ET JAK2+ and was given a BMB. He was not symptomatic and had no FBC issues other than platelets. This was at Guy’s with Prof Harrison.

[champ30]

Hi,I can only speak of my own experience.Due to anaemia and being hospitalised with a chest infection,but also awaiting an haematology appointment for the first time due to GP picking up stuff in a blood test,I was given 2 bags of blood immediately as blood counts really low.

Once I began to recover from the chest infection,I had a BMBiopsy.I can only assume this was given from what had shown up in my blood,I.e.platelets at over 1000 and anaemia.

After awaiting a month results were in High risk MF with previous ET.

After another month another diagnosis of MDS low risk.

So I think generally the haematology department have a fair idea of diagnosis from our blood tests.

Kind Regards Lynn.

[Johnsb]

Hey SwimSwam,

I talked this over my hematologist when I was diagonsed, I live in the USA, and since I was JK2+ he said it was up to me. He told me that it would show scarring in the bone marrow and that it really wouldn't proivde any new info. So I opted out. We did agree that if my PV changed dramatically then that might be the time for one. So I'd say no, why put yourself through that pain for no real new info.

John

[Uzza]

I'm in Australia...and they have told me there is no need to have a biopsy as Jak2 confirmation is enough.

[Jlah]

Just reading the replies and it does seem that it is patient dependent and not an automatic requirement. I had one but that was because my haematologist wanted to know how bad the scarring was. Jacquie

[Magentas]

I have just learned that it’s an absolute necessity! An invaluable diagnostic tool.I was diagnosed with ET recently but got my BMB results from my NEW hem yesterday, I have MF not ET, a whole new ball game and completely different treatment....

[Jw59]

Here in. Usa I have et 2 years and no bmb take hu 500 mg daily seems to keep platelets