My husband and I both have ET diagnosed for both of us in March 2022. We haven’t had bone marrow biopsies. Do our blood counts show that a biopsy is not necessary? Is it usual to have one if you are under a MPN specialist which we are not. We are in the UK and under the NHS. Thanks Irene
When is it important to have a bone marrow biopsy? - MPN Voice
When is it important to have a bone marrow biopsy?
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Na56
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Hi I had to have bmb to confirm I had ET triple negative
Thanks for your reply. We both are JAK2 so I wonder if that’s why we don’t need to have a bmb.
Kind regards Irene
Maybe and your welcome
I’m ET JAK2 pos and diagnosed earlier this year. They did the mutation test for the JAK2. We were overseas for 3 months. I saw the haematologist 2 days before we left and she started me on aspirin. I had the blood tests 3 weeks before I saw her. The mutation results were not back in time tho she highly suspected ET. She phoned me overseas 3 weeks later and said the tests confirmed the JAK2. She would get me to have a BMB when we returned to confirm which I did a week after I was home. Then onto Hydrea and regular blood tests and visits with her, sometimes via zoom.
Some experts say it good to have one and a NGS at the beginning as a baseline and to confirm exactly which MPN you have, blood tells some but not all
Yes I have over active bone marrow
There are different philosophies about whether a BMB is necessary when diagnosing a MPN. Some hematologists always do them. Some only do them in specific situations. There are times when the diagnosis is clear from the blood work. There are also times when the diagnosis is not clear and bone marrow morphology is needed to make the diagnosis. Doing a BMB at the outset does establish a baseline, which is part of why some doctors prefer to do one. While relatively safe, a BMB is an uncomfortable procedure that is invasive and does come with some risks. That is why some doctors do them more selectively.
I have had a MPN for over 30 years. I have seen 5 different hematologist, including 2 MPN Specialists. None has ever recommended a BMB for me. I would note that one of the five hematologists misdiagnosed me, missing the progression of ET to PV about 10 years ago. The plan at this point is to do a BMB if there is a sign of progression in disease status. Hopefully, that will never happen.
Suggest you consult with a MPN Specialist about whether a BMB is needed. Getting a second opinion from a hematologist who specialzes in MPNs is always useful and helps to ensure optimal care.
It is very uncommon for spouses to both have a MPN. MPNs are very rare disorders. As you likely know, the JAK2 mutation is often acquired early in life but the disease does not manifest until decades later. The trigger for progressing into the disease state is something that is being researched. There would certainly be interest in whether you share exposure to something that trigger the MPN.
Please do let us know what you learn and how you get on.
Thank you again for a very informative reply. I am reassured to know that you have never had a BMB.
When my husband and I received our ET diagnosis our haematologist did show surprise and said the blood tests were checked twice to make sure they were correct. He asked if we’d ever worked with chemicals which was a no. We’re both retired civil servants working in offices so it’s all a bit of a mystery.
Thanks again Hunter
I had a colonoscopy today and the anaesthetist asked me what I used to do for work and I said I worked for some years in radiology first 2 years in the hospital dept and then managing some private rooms.
He asked me if that is where I got it from…. 🤔😯 I was surprised and said no one had ever mentioned that to me before.
He said he had an interest in these things and that is why he asked. I said I really wouldn’t have any idea what caused me to have it, could that be the cause. He said it’s ok, not to worry, just forget he asked….
So I 🤔 I don’t know if anyone else has heard anything like that?
I know our neighbours sister worked for a TV station. She got cancer and died and many there got cancer, more deaths, which they put down to the electromagnetic field nearby and the offices were moved elsewhere…
Maybe there is a connection tho I do believe I won’t find out in my lifetime 🙆♀️
Evening really interested in your experience . I worked as a nurse at the Royal Marsden hospital in the late 70s early eighties working with patients having radiotherapy via caesium and iridium , also chemotherapy and radiotherapy we wore a badge to measure exposure amongst staff but they frequently were faulty and on our monthly check the thought was they had not been working again .. when I was diagnosed ET Jak2 2022 I did wonder wether this could have been a factor . I have never discussed this till now. I am also having a colonoscopy next week … such a complicated diagnosis which in my view can affect so many bodily functions . So interesting hearing many other people’s experiences. Thank you to all .
Yes so many unanswered questions. I was told years ago that pilots and staff need to monitor their radiation absorption and many retire young with this in mind.
I was told that a flight is like equal to the radiation of a chest X-ray.
I didn’t question it back then tho 🙆♀️
No a mystery: electric fields are dangerous.
Hi I worked with chemicals in aviation industry and was convinced that caused my problems I had Haematolygist baffled in 2013 having lots of different test and two bone marrow tests leading to being switched to Kate Ryan a well respected haematolygist at Manchester royal she had my spleen removed in June 2014
I then had normal platelets at 250 after my splenectomy they shot up to 945 I was dismissed for a 12 month appointment then everything went wrong an angina attack a Haematoma x 2 blurred vision I was referred back to a different haematologist who tested for ET and it came back jak 2 positive started on hydroxycarbamide but continued with problems haemateura DVTs TIA I’m on lots medication now still convinced chemicals caused it I went to court with Airbus but unfortunately lost the case
Hunter ,I’ve had 3 , one recently , I was not aware of the risks you refer to?, I can’t say I enjoyed them but I’m not sure I would describe them as risky or invasive, I think a lot depends on who does them, my most recent one I hardly felt anything.
There is nothing quite like a BMB for a proper diagnosis or to assess where one’s disease is progression or non progression wise. For me the benefit greatly outweighs any risk if there is any , I prefer a BMB to the dentist
Aologies if I digress ……
I read with interest your response above .
I was diagnosed with MPNU in feruary 2021 after a BMB . I was diagnosed as being JAK 2 positive which would likely develop into myelofibrosis going forward . My platelets were dropping and my WBC was high at the time. Fortunately my gp sent me to the City hospital in Nottingham where my care has been amazing . I was monitored monthly without any medication .
Then in December last year I felt as if my spleen was enlarging and after a CT scan that was confirmed plus I had a BMB which confirmed my diagnosis of myelofibrosis .
I was lucky enough to have a SCT in July this year .
In my case BMB’s have set down good markers even though I can’t say I like the experience but I understand they are necessary .
I note that you say in your message above that the JAK 2 mutation is often acquired early in life . I would be interested to know more about this and am wondering where you got your information from.
As far as the triggers go it would be fascinating to know if it is down to environmental causes , stress , diet etc .
I have often wondered . ….. not that it changes anything .
Thankyou
I am glad to hear that properly monitoring your MPn status had a favorable outcome. Optimal MPN care is vital to the outcome in these rare disorders,.
The information about acquiring the JAK2 mutation in early childhood is relatively new. It is an absolutely fascinating finding. Here is a bit on that.
hematology.org/newsroom/pre...
biorxiv.org/content/10.1101...
sanger.ac.uk/news_item/adul...
pubmed.ncbi.nlm.nih.gov/350...
What is also fascinating is the phenomena of Clonal Hematopoiesis of Indeterminate Potential (CHIP). People with CHIP are carrying the JAK2 mutation without evidencing symptoms of a MPN. CHIP is not understood but is another area of interesting research.
That causes the the acquisition of the JAK2 mutation and what triggers a JAK2 mutation to become a MPN is an area for theory. It is known the MPNs can cluster in families (Familial MPNs) and that there are locations where there are clusters of MPNs (e.g., the Pennsylvania Cluster). Hopefully, we will learn more with the research that is underway.
You may find this presentation by Dr. Jyoti Nangalia on MPN Molecular Biology to be of interest.
youtube.com/watch?v=K5ZXdIw...
All the best on your journey.
Thanks for sending . It is an interesting topic that’s for sure . I will look at this info in more detail .
This is all fascinating stuff . Let’s hope in the future they can stop these mutations developing in their tracks .
Again thanks for sending the links .
Tortina
I have not had a BMB. My hematologist said it isn’t necessary at this time due to my being JAK2+ and my numbers. She says we’ll do one at a later date.
As for chemicals, I was born and lived at Camp LeJeune until I was almost three. I was bottle fed so drank the contaminated water every single day. My platelets started to rise in 2013. I don’t know if it’s what led to my developing a MPN at 42. But drinking dry cleaning fluid in my bottlers couldn’t have been good. My hematologist says she’s had many patients with various blood cancers from Camp LeJeune.
You are dead on target with the importance of the skill level of the provider doing the BMB. It was something I was warned about by the hematologist when we discussed doing a BMB. I was warned not to go to a specific hospital due to their BMB performance history.
During a BMB, a a small incision is made in the skin, then a hollow needle is inserted through the bone and into the bone marrow, then marrow and aspirate are extracted. I think that meets the definition of an invasive procedure.
No procedure or treatment is without risks. It is worth noting that a BMB is regarded as a relatively safe procedure. While the risks of a BMB are minimal, they do exist.
Excessive bleeding, particularly in people with low numbers of a certain type of blood cell (platelets)
Infection, generally of the skin at the site of the exam, especially in people with weakened immune systems.
Long-lasting discomfort at the bone marrow exam site.
mayoclinic.org/tests-proced...
There are often very good reasons for doing a BMB for people with MPNs. There are times where the benefits clearly outweigh the risks and discomfort. That is a decision that has to be made on a case-by-case basis. What matters most is informed consent. The decision must rest with the patient who based on advice from the provider decides whether the procedure is worth doing.
All the best.
Hi, I had a bone marrow biopsy last week ET and JAK2 positive, To be honest I was relieved and anxious to be having one as I believe it’s a more effective diagnostic procedure. The only only discomfort was having the local anaesthetic.. The following two day were a bit uncomfortable but had no bleeding etc. I wish you both good luck on your journey. I’m in Oxford, UK.
Hi, I have ET & Jak2+. I also had a BMB fairly early on with diagnosis. It really was a bit of a waste of time. It didn’t change anything, diagnosis or treatment. I put it down to living abroad and having private health insurance covering the expenses. The write up from it was minimal and not really of any value. 🫤
So unusual for you both to have it and at exactly the same time. Weird.
All the best.
Hi... WOW!
Personally, I find it rather fascinating that both of you share the same diagnosis, and at the same time...
That is some bizarre coincidence...
At your age Irene, I'd possibly consider having it done... As the BMB will show what level of 'Fibrosis' is evident, if it exists at all etc...
Could be useful to know... However, I would definitely look for an MPN specialist to talk with first, in my view...
Best wishes
Steve
(Sydney)
Hello
What are the chances of you both having it, do you think something has triggered you both ? Chemicals etc ?
Thank you and everyone else for their replies. It seems to be hit or miss whether we have a BMB. I am definitely thinking it’s time to consult a specialist but wondering if that should be joint care with my haematologist. I think I’ll be posting that question soon. And no my husband and I have not had any more contact with chemicals than the average person. Kind regards Irene
Hi Na56, I have had several BMBs, the first one was immediately after diagnosis. I see one of the top MPN specialists in UK (Prof Harrison) and she has always asked me to have a BMB every other year. I don’t know if this is specific to me and my treatment or what she suggests for all her patients. I never enjoy them and find them painful and stressful but large amounts of gas & air definitely help! I agree with all the other comments re your husband and you both being diagnosed at the same time with an MPN, I’ve never heard of that before! Knowing how unusual these disorders are I would be keen for a 2nd opinion on that. Best wishes. X
My wife was diagnosed in France, while being treated after having her spleen removed after it burst in a fall. The doctor there did a bone marrow aspirate from the Sternum, and sent it off to Bordeaux, this came back as MF. A few months later back in Wales a bmb was done on the pelvis, and came back the same.
I am ET Jak2 under Guys Hospital MPN used my blood work for my diagnosis had many tests regularly. Allele Burden being checked recently as my platelets responded well on Interferon. I do not want a BMB. But listen to my MPN who is happy with my diagnosis & response to treatment.
Suggest you ask for an MPN referral from your Dr. Julia 👍
Hi Julia Can I ask why you are under Guy’s. Is it because you changed to interferon. Some people seem to have joint care with Guy’s and their haematologist and I was wondering about that. My haematologist is keen to keep platelets under 400 which is not happening for me. My husband and I share the appointment with him as we were both diagnosed with ET at the same time and Daves blood count is now good. Whereas I’ve got to go back in 2 months and if the platelets are not under 400 will need to increase hydroxycarbemide. I’m not at all happy about that so wondering about needing a specialist. Can I ask what level of platelets Guy’s is happy with. I’ve never had a thrombosis and am a fit 71year old. Thank you Irene
Hi again, sorry to jump in on your question to exeter21! I’m under Guys Hosp too and have been on Hydroxy for over 15 years. My platelets have never been under 500 and are usually at 540-560. I take 1500mg x 4 days and 100mg x 3 days. I’ve tried to take more to nudge platelets but I can’t tolerate a higher dose. I changed to Inteferon earlier this year but had such a massively negative response to it that I had to come off it after 2 injections. So I’m staying on Hydroxy and platelets staying in mid 500s. Team at Guys monitor me quite closely but I’m fit and like you have not had any thrombotic events. I would absolutely definitely ask to see an MPN specialist- MPNs are rare and not all haematologists know enough about them. X
Thank you for your reply and very sorry to hear that interferon didn’t work for you. Do you have many side effects from your hydroxycarbemide dosage? I’m on 9 tablets per week but worried about increasing the dose because of it’s toxicity. My hair has thinned from just 18 months on the tablets. How is yours and have you had any skin cancer problems? I will discuss with my haematologist the prospect of shared care with Guys.
Kind regards Irene
my doctor suggested I do a bmb when diagnosed, I am happy she did. When I required a second bmb they used the first to verify progression. I would recommend, but you do not have to.
Yes I am under my local Haemotology hospital but when I reacted badly to Hydroxy I took advice from MPN Professor Harrison at Guys. I have joint care platelets now at 320 but it’s more than platelets levels that are important hence MPN advice Julia .
Just one more question please. How does joint care with Guys work? Do you ever go to Guys or speak to anyone there or are your appointments just with your local haematologist? Thanks Irene
Good Morning Na56,
I had blood tests that showed Jak2 and Tet2 positive . My Oncologist recommended the BMB but said I did not have to. She said they could gain more information. I opted to do it. My lab and BMB from MD Anderson stated my disease best described as ET. But I have some crossing fibers in my bone marrow. I see a MPN Specialist in Tampa at Moffitt and he said there is a condition called Pre Fibrotic Myelofibrosis which better describes my case. I worked in a Hospital for 31 years, often taking patients to Nuclear Medicine, Interventional Radiology, MRI. While everyone else stood behind a brick wall, I stayed in the field and repositioned the patient. I held children for so many x-rays could easily be in thousands. Also used 31 years worth of alcohol gel. Due to my age at diagnosis (57) and result of BMB I was eligible for Besremi. If I had chosen not to do BMB, my disease may have advanced without trying to stop it with this drug. Trials showed people coming back undectable, I don’t remember exact percentage but about 40%. I am glad to have done it for the knowledge, but must say, the site was quite painful for months and the psychological toll was more than I had anticipated. Having to endure that procedure without sedation and the continued pain from it, truly brought home a realization that I am not healthy anymore. I am year and half out and have settled into things now, and try not dwell on it. I do appreciate everyone on this site sharing. We are a family of like people helping each other. Best of Luck to you and your husband. So glad you found us 😊
Hi, I have seen 4 different hematologists in the last 7 years. My first one ordered a BMB, he said it was necessary for a proper diagnosis, he also referred me to a specialist who also wanted to see the slides from the BMB. They agreed on the diagnosis. I have had two new hematologists locally since that time due to retirement and moving and at the first appointment they both wanted to know the results of the BMB. All 4 are/were University affiliated. It eased my mind somewhat to know that I did not have any fibrosis at time of diagnosis, who knows what is in there now. I have asked about having another for staging purposes but the 2 I have now say it is not necessary. It is such a simple procedure I am glad I had it done. If you have one I would recommend checking on the level of skill of the person who performs the biopsy, mine was done by my original hematologist with 40 yrs of experience. Best to you going forward.
Hello,
I'm 55 years old, JAK2 positive and was diagnosed last April with ET. The diagnosis was clear, my platelets were in the 700/800. My hematologist adopted the "wait and see" course of action and I take two low dose aspirins a day.
My hematologist asked me if I wanted a BMB, telling me that it was the only way to know if I had preMF or MF. It's why I agreed to have one. I wanted an exact diagnosis as well as a clear prognosis.
As Hunter said, it's an unconfortable procedure - yes, if you decide to have one, do ask for every drug and anesthetic they can give you LOL. But I was glad to have done it, and it confirmed the initial diagnosis.
All the best to both of you
Hello - my MPN specialist encourages al of his patients to have a BMB at time of diagnosis as a standard of care..he believes strongly that in many cases it helps confirm diagnosis/staging as well as provide a very definitive baseline for any future progression (or remission). I had one done - can't say it was my favorite 30 minutes - but glad I did it
Hi there, I’ve had a slightly confused experience maybe due to not having had a BMB at the beginning, But it wouldn’t of made a jot of difference to my treatment.
I was diagnosed with ET based on blood tests, 5 years on hydroxy then 2 yrs on Pegasys.
Because the Peg was affecting me badly, low Hb, my consultant became convinced that my disease was progressing so a BMB was ordered.
It showed that I had level 2 fibrosis from which he concluded I’d progressed to Mylofibrosis.
However having now had a 2nd opinion the possibility has been thrown up that I’ve had the same level of Mf whole time. I’ve never had an enlarged spleen.
Ho-hum back on hydroxy now. Jo
No need until blood work requires it they treat it all this way first on wait and see!
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