And this is the answer, from Professor Claire Harrison, Guy’s and St Thomas’ Hospital, London.
Confusing information and some different opinions.
When a diagnosis of a MPN is made the team use specific national/international diagnostic criteria. Some of these mandate a bone marrow biopsy and some do not, some only mandate a biopsy in specific circumstances.
Aside from making an accurate diagnosis sometimes having a bone marrow done is a useful test for future information even if not needed for a diagnosis.
Sometimes BMBs are performed during the course of disease usually if there is a change in disease features, sometimes before a change in treatment, sometimes but not often to monitor a treatment, and lastly sometimes before a clinical trial.
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I pray u see this ...its May 2019. My husband has been tested for PV & THE JAK2 TEST BOTH NEGATIVE. But yet now even after a bmb bone marrow biopsy our veterans doc wants us to go outside of the VA AND see a oncologist @ wake forest university & possibly get yet another bmb! We have a consult this week. I just am very scared. My husbands hematocrit is 58. Hemoglobin 21 and its been this way over 1 year. He smokes a pack a day. Was 2 packs.But can u contact me with your numbers & whats happening....im scared too. cloudyday65@gmail.com WE LIVE IN USA.
Hello, I’ve just seen your posting. I usually don’t post but get a lot of info from the forum. I hope by now that you have some answers to your questions and by now you know what is happening with your husband. I visit Chapel Hill, NC , area very regularly as my Partner teaches at NCSU. I don’t know the medical set up there, but there is a VA at Duke Hospital, but I often read the Mayo Institute blogs and they do a lot of research on MPNs. I find them a good resource for information. I have ET with an Mpl mutation and being treated at Addenbrookes in Cambridge.
Thank you for writing. My husbands second BMB came back negative no pv but he has spindle cells in bone marrow & diagnosed with INDOLENT SYSTEMIC MASTOCYTOSIS. (Slow moving possibly never affect him) U can google...the thing but he has no symptoms of that. My husbands Hematocrit is now 53 down from the 58 & his hemoglobin is down to 19 was 21 & 22. He decreased smoking from 2 packs of cigarettes a day to less than 1. No more phlebotomies have been done in several months. He takes no meds. The only mutation from genetic testing was in the ASXL1 gene & allele frequency of like 42% (unknown variant) so doctors really dont know what that means. They feel smoking is why his numbers elevated and because maybe wasnt as active as was sitting with back injury for over a year. Once he started working again maybe also why his labs look better. But he was kit neg & all other PV neg so thats good. Best of luck with your own Et & mpn. Oh his Trypatase is still always in the 50s. Again doctors still find his case somewhat of a mystery. (2/20/2020
That basically is in line with my personal experience :
Following blood tests a BMB on marrow taken from the sternum was made - this confirmed the initial suspicions but the sample quality was inadequate(I had MF/MDS-U)for a complete diagnosis so a BMB was made in the hip.
9 months later after treatment with Pegasys a new BMB - getting ready for a BMT.
4 months later another BMB because I was in dire straights and a check was needed to try and get an explanation.
Although I agree a BMB is not fun - especially when your wife tells the doctor 'he's a tough guy and won't need too much anesthetic ' -it's soon forgotten.
This makes perfect sense. Saw my Hem today and I ask him why he hasnt done a bmb for me yet. He said he will only do one if there are any changes in my blood or if and when I get really sick. Turns out i am also jak2 neg which is great. Thank you so much Maz. Made me feel so much better!
Hello, this is sarahjane. I am triple negative and unsure why my platelets have been high for some years now. Currently they are 591, but saw my heamotoligist today and was told I don't need a BMB just yet. I just want to know if I have ET!
Hi Sarahjane, I am also triple negative ET though I was diagnosed in 2003 when it had to be by bone marrow biopsy, I have had the blood tests in recent years that show I am triple negative. I would wait and see as your haematologist has suggested. Maz
Hello Maz. Just wanted to ask a question. Is it possible to request a general anesthetic when having a bone marrow biopsy? I know I'm bound to need one soon, and I have such a low pain threshold! I have heard it's painful and having watched one being done on YouTube, I know I won't be able to go through with it, having just local anesthetic. Just wondered if it was possible to ask for a general, as a day surgery procedure? Sarahjane.
Hello Sarahjane, explain this to your haematologist and ask if there is any way you can be given something stronger than the local anaesthetic which is generally used, I am sure they will help in any way they can to make the procedure as comfortable as they can. They may suggest that you speak to your GP about having some medication to calm you down as well. Hope it goes ok, Maz
Hello Maz. After having a BMB that was normal, showing no sign of any MPN, I am at a loss as to what to think now. My platelets are currently 480, but hAve been consistently high for 5 years now. The doctors are discussing my case at their next meeting. My heamotoligist is baffled too! We all thought it was ET. He mentioned doing another BMB in December when he sees me again. Do you think the first one could be wrong? I do remember the doctor who did my first BMB saying it wasn't his best work that day. Have no idea why he said that. Any help in understanding all this would be appreciated.
Hi Sarahjane, I am sorry that you are having these problems, but I am afraid that I can't advise you on this, you really need to wait for the doctors to discuss your case and go from there. Maz
I pray u see this ...its May 2019. My husband has been tested for PV & THE JAK2 TEST BOTH NEGATIVE. But yet now even after a bmb bone marrow biopsy our veterans doc wants us to go outside of the VA AND see a oncologist @ wake forest university & possibly get yet another bmb! We have a consult this week. I just am very scared. My husbands hematocrit is 58. Hemoglobin 21 and its been this way over 1 year. He smokes a pack a day. Was 2 packs.But can u contact me with your numbers & whats happening....im scared too. cloudyday65@gmail.com WE LIVE IN USA.
Hello Maz. Can you tell me if it's possible to request a deep sedation or even general anesthetic for a bone marrow aspiration and biopsy? I know it's cowardly, but I know I can't go through with one with only a local anesthetic. Sarahjane.
I ask for gas and air when I have a bone marrow biopsy and I find that that helps a lot. I could not cope without it. If you have it make sure that you have it right from the start of the procedure when the doctor gives you the local. Don't be persuaded as I was the first time to start the gas and air once the procedure starts to really hurt because you will struggle to get your breathing into a good steady rhythm and the gas and air won't be as effective as it should be.
Thank you for that Maz, enquired with my Haematoligy dept, and was told that it would only be done if my counts changed at any great rate, and as they have been stable since being on Hydroxy they are happy to continue with the treatment, and to not put me through any BMB as it can be a bit uncomfortable, but if at any time it is needed they will do, more or less what you have said, so once again many thanks for putting our minds at rest.
I am sure they will. I was at the hospital a couple of weeks ago, and everything is still normal, like you if it is a blood test every few months then I am fine with that. Just keep drinking the water 💦🤪
Hi Jean, Hsve you been advised to drink a mixture of fluids rather than just water? Two of my friends have had chemo for breast cancer and both their oncologists advised them not to drink just water but a combination of fluids including juices, milk based, sofas, tea coffee and gastrolyte. The oncologist advised water goes through the system too quickly . I read the same advice applies to Hydroxurea. I love this advice as good excuse to drink milkshakes.
As far as I am aware you can drink anything, I have not heard that about what you should drink when you have breast Cancer. I have a few girlfriends who have gone through breast cancer and carried on drinking what they liked, this included water and lots of it as it flushed toxins through the body and kept them hydrated. They also enjoyed a glass of wine as well. Tea and coffee can be quite dehydrating so they went for decafinated, also milk shakes are good for you, and smoothies are even better if you make them yourself. But water is very important no matter what. Basically I think you can drink what you like.
I was told that I would initially have a blood test to check for the JAK 2+ gene but if the blood test was inconclusive then a BMB would be undertaken. Now I am confused???? I was told I had the gene by blood test alone. Now I am not sure whether that can be accurate????
Jilly if you are unsure ask your haematologist to explain to you how he/she is confident that the result of the blood test was conclusive enough to diagnose your MPN. Maz
I was diagnosed with PV jac2+ by blood test alone. I have never doubted the diagnosis. I only had a BMB 8 years later before commencing hydroxy as a baseline for the future.
Thank you. I was wondering about this. Diagnosed ET Jak2 in 2015 and have not had bmb. Went to a MPN seminar last yr and one of the 1st questions the facilitator asked me - had I had one.
Hi all , i havent had a BMB yet, dont know whether it is because a blood test confirmed i was jak 2 pos 2 year ago and with raised platelets of course regards Holly x
Hi Everyone , As I don't post often I was just wondering why all of a sudden I have had to have a BMB , I have PV Jak2+ , clopidegrel , hyroxy 1 a day until sunday then it's two. Urgent blood test plus a BMB, and a wait of three weeks until results, which to be honest I am freaking me out about the results as to whether it has turned to MF. No-one seems to realise just how worried I am .Anybody out there with a similar story ? Sorry to be a wimp. Just so unsure of myself now. Bordeauxgirl. Love to all
Hi, I had a BMB right from the beginning of my tests when it all started. It was taken from the hip, it was painless and of course without anaesthetic. It took the consultant a few minutes to do it and I felt a slight pain afterwards that did not last long. She knew what she was doing and it gave a clear picture of my condition. So go for it and don’t be afraid.
Hello. I enjoy HealthUnlocked. It reduced my worry level after reading many of the posts. Excuse the red nose picture - I think my photos are better with it on sometimes. My ET is on my profile I assume.
I was confirmed with PV based on JAK2+ mutation, 6 months ago.
After discussion with the Doctor decided to forgo the BMB.
My question is has anyone regretted not having a baseline BMB to compare with? Has caused you issues down the line not having one done after the first diagnosis?
I just wanted to say that I got an appointment through the post for a BMB last week. I so want to know if I have ET or not. But I got myself into such a state of fear about the procedure, that I have now cancelled my appointment. I asked if I could be sedated or even have a general anesthetic, but they said no, a local was all they would offer. So don't know where to go from here now. So despondent.
Hi SarahJane, you need to go and see your GP and ask if he/she can suggest anything to help calm you down, or even get in touch with your haematologist to say how scared you are of the procedure and can they do anything to help you. I would also suggest that when you go for the BMB that you take someone with you to reassure you and it might also help if you have some of your favourite music on your phone and listen to that whilst they are doing it. It doesn't take too long to do it, and the anticipation of it can be worse than than the actual procedure. Maz x
I had gas and air for mine, that seems readily available in most hospitals. My daughter came with me and held my hand and the nurse talked non stop! I puffed on the gas and air so much, they had to tell me to ease off towards the end. 😂 I was very nervous, but as Maz says it doesn’t take long and certainly not as painful as giving birth!
Hi Maz. Please would you clarify something for me re BMB? My original tests included a lumbar puncture and I understood that from this my diagnosis of MPN ET JAK2+ was deduced. Am I wrong because I have never read of anyone else being diagnosed from a lumbar puncture.
I also had CT, MRI head and full body scans and numerous blood tests. These were carried out because I was having (what my doctor thought were) TIAs almost weekly. The fact that I had had tests for stomach problems in 2017 which (in my opinion) weren't properly looked at and I was told results were negative, should have noted an enlarged spleen because for years I have been unable to eat much at a time. I've been 'grazing' since about 2000, never eating a main course. Nobody picked it up. My GP then commented on my high platelet count but still never arranged further tests.
In short, should I have a Bone Marrow Biopsy to establish my diagnosis is correct? My eating capacity remains very similar and I do get intermittent pain and discomfort from the spleen area. When I mention anything to my haema he tells me to see my GP, so I'm in a catch22 situation. My GP really knows nothing about MPNs. In fact, I am not in touch with anyone except member who do!
I haven't forgotten about my promise of a wing-walk but awaiting better weather!!!
Thank you Maz. I just wonder how they could tell me I'm JAK2+ if that's all they had.
I do have a video somewhere of me doing a wing walk a few years ago but I can only find a damaged dvd, which wont play. I will definitely do it but not in this cold! If I find the previous one, I'll upload a copy. All the best
Hi Penelope, I passed this through to Prof Harrison she has said: It would be best to speak to your doctor about your diagnosis, and it is not always needed to have a bone marrow biopsy to diagnose a MPN, and that a lumbar puncture is not the same as a BMB but it is possible to confuse them.
No,I definitely had a lumbar puncture. I was told that's what it was and I was wide awake for it. It's on my notes. I also had the intense headache that follows the experience. If I remember, I'll ask my haematologist on the 13th. Feb. ATB. Penelope
I have ET and JAK2+. Shortly after initial diagnosis I had a BMB from my hip under local. I was expecting it to be bad but it really wasn't. Strange sounds, lots of pushing, but only mild discomfort, even after the anaesthetic wore off. No further BMB expected unless my condition changes.
Hi Notlikecandy, at the time my biopsy was carried out I had already received the results of a preliminary blood test which had been sent of to see if I was Jak2 +. This had come back stating that I was. The bone marrow biopsy confirmed this as correct.
When the biopsy was carried out my results were:
HB was at 19.2 (range 13.0-17.0) and my
HCT was at 56.6 (40.0-50.0). WBCC was at 11.2 (range 4.0-10.0).
My Urate was at 516 (range 212-482).
RCDW 16.8 (range 11.5-14.5).
Initially I had a number of venesections and was prescribed low dose aspirin 75mg and 300mg Allopurinol for the Uric Acid.
I haven’t smoked in 20 years and from what I’ve read about P.V. you really shouldn’t!
I still worry that I was diagnosed in January 2018 as ET and JAK2+. I had a number of blood test, lumbar puncture, CT & MRI scans. They came up with that diagnosis from those.
I have had multiple (apparent) TIAs since the early 90s and one stroke in 2012. I have had the symptoms of ET and JAK2+ for that many years. They were just never investigated.
My worry is that I have been JAK2+ for so long that the % of mutated genes are such that using Pegasys(although my platelets are now in normal range) will definitely be permanent. I would consider myself unlikely to be one of those lucky few who enjoy a reversal of the mutations.
Does anyone have any thought at all my thinking? Please? My haematologists says they don't do BMBs because they're not cruel. Not true. I have told of one person at least who has had this at the same hospital. I wonder how it is so obvious I am JAK2+ without having had a BMB. Is it because ALL my blood shows these genes are mutant?
Sorry for the ramble. Sometimes I can get all this out! All the best. x
Hello JackLina. Sorry for a late reply, but the blood test results contain not only the fact that one is Jak2+ but also the % of mutation (i.e. burden). I recommend asking for this important piece for information!
I have had ET probably for around 10 years and got the blood test results last month. Doctor said my burden was just over the threshold (1%) that is a hallmark of a positive result, and that 5 years ago they would have declared the result negative. This was PCR analysis.
I am interested in your comment on Pegasys. Did you mean there is a chance of recovery if the burden is low? All material says there is no cure for this.
Thank you for this. I did ask my haema about this and /i have a copy of the diagnosis. ?no % on there. I have now changed haemas and this one is trying to track it down. My previous one told me that UK pathologist don't include that info. It will be interesting to find out if I have any more information on my next visit.
The use of Pegasys in some cases it seems, is causing a decrease in the burden. I'll let you know the outcome. I will be seeing him again on April 1st.
Hello Penelope. I hope you will eventually get to know the burden they measured. I also was not told initially, but only by chance as I wanted to talk to a haematologist from a different hospital, and it happened to be the same hospital where they had sent my sample for analysis. Lucky me, I had no idea where the lab was done. (I am not from UK.)
Good luck for the April 1st. How long have you been on Pegasys? Is it difficult to get that prescribed in UK? I am worried they won’t prescribe that to me here as I am low risk still.
Hi. I've been on Pegasys since June 2018 because I could not tolerate hydroxycarbomide. I am also high risk as I'm over 60 and have had many TIAs and one minor stroke.
I know that not all hospitals in the UK are able to prescribe it because when I visited Dr Butt in Liverpool, he told me how lucky I was as the only way he can do so was in extreme cases, e.g. pregnancy.
Thank you Maz. I needed that information because it has worried me ever since first reading about diagnosis via BMB. Thank you for all you do to provide this wonderful site and to keep it in order. All the best. x
Here in Germany it seems to always be a part of the diagnosis. I felt no discomfort or pain with the procedure
A slight sensation a suction. The main thing was the long three week wait while three specialists conferred.
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