MPNs and bone marrow biopsy

[GardenGal3]

OK, so I've been on Hydroxy for 6 years (for ET) and visited my Hematologist last week. He asked if I ever had a bone marrow biopsy done. I said no, and he was very upset (and from what I've been reading perhaps I don't blame him. The diagnosis was made on high platelet counts and JAK2+. Anybody else with MPN get diagnosed without the bone marrow biopsy?

[Merry6]

Yes, I've never had a BMB. Diagnosed on JAK2+ and high platelets over a period of time.

Merry x

[Aime]

I have PV, never had a BMB either. Beginning to wonder if I should have.

Kind regards Aime x😼

[Inca]

No B M B for me either.Diagnosed 8 yrs ago in France where I now live .

I did ask my specialist,he said it was not necessary in my case as all blood tests they did I was positively P V Jak 2.The hospital has a specialist blood department,I was diagnosed in hours on admission,tho had been poorly in U k for some time without any Dr having a clue what I now know are obvious signs of an M P N. Maybe it is needed if diagnosis is not sure.Best Wishes.

[mhos61]

I’ve never had a bmb either. Raised platelets and the Jak2+ mutation was deemed enough for my haematologist to give me a diagnosis of ET.

I noted recently that (WHO) changed the criteria in 2016 (the year I was diagnosed) to include a bmb as a ‘major criteria’ to distinguish ET from early PMF. I printed off the WHO guidelines and gave it to my CNS at my last clinic appointment and asked her to ask the haematologist (whom I never see) for her opinion in my case. I presume at my next visit I will find out.

Mary x

[piggie50]

Hi,

I didn’t have one for diagnosis either although I had one 6 years later before commencing Hydroxy, just as a baseline for the future.

This question was asked 12 months ago, there is a post from Maz at that time which you should see on the right hand side of this page entitled To BMB or not. Maz asked Prof Harrison and this was her reply....

‘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.’

Best wishes

Judy

[Superwoman]

No never had one, I was diagnosed by the JAK 2 mutant test over five years ago now, I have mention it to my Haematologist should I have one and he said no, as it was proved that I had ET JAK 2 positive by the test. Have also raised this with Maz, and as Judy said, an article was put on our forum, it’s only done when things start to change or progress onto something else and this is the way they can determine what. And for me so far so good.

Jean

[Wentry]

I'm in NZ and they tend to go along with whatever the UK and US do. I was diagnosed ET JAK2+ end of last year with blood tests alone, consistently high platelets for 5 years. I recently asked my haematologist for a BMB to rule out pre-fibrotic Myelofibrosis (as it can look like straight ET but has a worse prognosis), to give me a better idea of my prognosis, and he was happy to do that. It confirmed normal ET with no fibrosis so I'm glad I did it, it has put my mind more at rest though it wasn't a nice experience 😉 I am 56 and on aspirin only no plan for Hydroxy any time soon as far as I know, platelets 787 at the last count 😁

Wendy

[Sarahjane100 in reply to Wentry]

Can I ask, do you get free prescriptions because of the ET, or not yet, because you are not taking any prescribed medication?

[Hidden in reply to Sarahjane100]

Aspirin is prescribed for ET and therefore the effects of the cancer are being treated. A medical exemption card can be obtained in these circumstances.

[Sarahjane100 in reply to Hidden]

Thank you. I will bear that in mind when I see my heamotoligist in September!

[GardenGal3 in reply to Hidden]

No aspirin for me, diagnosed with ulcerative colitis in the early 90s. No NSAIDs at all since they make me bleed in the wrong place!

[Wentry in reply to Sarahjane100]

Hi SarahJane,

Are you also in NZ? We don't get straight free prescriptions even for certain illnesses. However, each item on a prescription is normally charged at $5 (if funded, otherwise you pay the full price), and then once your family between them has reached 20 items they are then free for everyone in the family for the rest of that year. They are also reduced for low income families. We always hit the count about half way through the year as I already have 6 items on each prescription for blood pressure, arrythmia plus the aspirin, and my husband has one or two, each for 3 months worth of meds 😉 However, I've just read that there's a big Australian pharmacy opened in Auckland that aren't charging the $5 prescription fee to anyone! 😱 So in effect they're free to everyone, but too far for me to travel from Wellington 😉

Wendy x

[Sarahjane100 in reply to Wentry]

That's a shame. I'm in Daventry, Northamptonshire. Prescriptions are free for people over 60 or people on certain medications. Otherwise, normal prescriptions are about £8.50 for each prescription. If I am diagnosed with ET, I will be entitled to a medical exemption certificate. So at least any medication I am prescribed will be free! Wishing you well, love sarahjane.

[GardenGal3 in reply to Sarahjane100]

I wish free prescriptions were part of the US treatment plan. At least Hydroxyurea is only $1 a month, but now I'm suspicious that my recent 2 skin cancers (small basal cell carcinomas) may be related to the chemo drug.

[Graham7694]

I was fairly confident that I had ET looking at my bloods with high platelets but the BMB proved otherwise as it turned out I have Primary MF. I think I am probably more the exception than the rule. Even my haemo was surprised but it means I am now on Ruxolitinib, allopurinol and aspirin and am feeling a whole lot better with symptoms decreasing monthly. I think with what I know now then I would be asking for one, even though it wasn’t the most pleasant procedure I have ever had. It is a good marker for future tests as well

[SP-2008]

currently ET JAK 2 Negative - If my journey over the last ten years has taught me only one thing, it’s to learn as much as there is to learn about my condition. BMB is a very good way to get very close to what you are dealing with. The desire to want to know all the facts overrides any of the pain for me and that’s why I recently took the advise of my haematologist and had my second BMB after 10 years, to see if there has been any progression to pre Fibrotic stage or worse. Pending results. If I was you I would insist on it. Wishing you all he best. Paul

[GardenGal3]

I personally am glad that my hematologist is insisting on the BMB since I've been on hydroxy for 6 years and my platelet count recently has been jumping all over the place.

I'll know more in the weeks following this coming Thursday.

[Chuck309]

Live in the States- Florida, ET for about 15 years. JAK2 + met with my Hematologist just last week. He said maybe a BMB in the near future to get a baseline. Currently just on aspirin, frequent headaches, IBS, itching and fatigue but reluctant/scared to go on meds.

[Louforjack]

My son was diagnosed 8 Years ago, at age 10 with et on blood test alone Jak 2. He didn’t have BMB at the time but has one annually to check for any fibrosis. So far so good 👍

[Wyebird]

Hi yes, my blood was tested for mutatations I’ve got the Calr.

[Ramy22]

I had a bmb because there was no other way to diagnose at the time. It did turn out that I was JAK 2 negative but I thought that if someone was positive they didn’t need it.

[Mwalimu]

Yes, I have not had a Bone Marrow Biopsy and was diagnosed on the basis of a history of high platelets and JAK2 mutation in 2011. However, there were other symptoms of ET which I did not recognise at the time too eg fatigue, pains in jaw and fingers. Sallie

[jillydabrat]

I have PV JAK2+ and have never had a biopsy, diagnosed with prolonged high platelets. I often wonder why I had never had a bone marrow biopsy, not that I wanted one lol. Seems like I am not alone on this.

[Chris_H]

If you are JAK2+ with only one indicator like high platelets then it's not necessary to do biopsy (what my haematologist said). I have both high platelets and red blood cells so had to get biopsy done to see if it's ET or PV, and even though my platelets are more out of control it is PV and not ET. Be glad you dont need BMB... It really isn't fun.

[Ramy22 in reply to Chris_H]

You are absolutely right .... I had no pain relief .... it was awful.

[GardenGal3 in reply to Ramy22]

There will be pain relief, I'll pretend that the drilling is like at the dentist. (put a wink here). I'll see how I feel after all is done on Thursday morning.

[Ramy22 in reply to GardenGal3]

I had mine done decades ago... and there was no pain relief then. There is now. Some people find that it is OK and they are the ones with pain relief. Good luck!

[beetle]

Diagnosed 24 years ago with no BMB. Had one 6 years ago when progression to MF was suspected

[MCW22 in reply to beetle]

Beetle, can I ask what was your white cell count when they suspected progression. I'm pv jak2 + and my whites are still around 27 and are the only thing that hasn't responded to the hydroxy

[beetle in reply to MCW22]

My white cell count has been below normal since diagnosis 24 years ago. I think the other counts were dropping too and I moved and went to a new haematologist who looked at my results over time and immediately suspected MF and this was confirmed by BMB

[Bokkie1511]

I was diagnosed with ET in 2013 (CALR positive) and had a BMB a couple of months after diagnosis, another 12 months later and 1 since. I've been on Hydroxycarbamide since diagnosis and now also on Inteferon.

[Sheryljean]

Yes. Was diagnosed with PV but before I stared the hydroxeau I asked for a BMB to confirm. It showed that all PV with Thalamassia, was the true diagnosis. I wanted all the boxes checked before I started the therapy. I would request one if for anything else than to ease the mind that there are no other lingering cancers there.

[Lilly1958]

I have 2 times BMB , first 16 years ago, and 2 month ago.i have Et for 26 years, and all time stable platets 450-500, but becouse before 10 month my Hct was 48 put me on venosection , every month . My hct not stable , samtimes 42, 44, 50, always different and rbc 5 .50 on borde line. Becouse I have Jak 2 pozetiv and have ET for long time my hemo did BMB , and result was starting ET (starting after 26 years?) Wery interesting blood show PV, BMB ET, I never read can hapend samting like my cases. I have dx 26 years ET, 8 month PV, now agen ET with venosection, Meybe I have both or masked PV, but I go for BMB becouse I have long time Et and scare about progression in MF , like all with Mpn disorder .I was 34 when dx Et, (only on coated aspirin ) and now 60 , and high risk for blood cloth , my hemo explain me, but now first tame I filing bad, fatigue itching skin after bath , I think becouse of wery low iron (3) and ferritin 7, . , I don't like have blood clot and I listen my hemo I think BMB is very important for as with long tame MPN disorder .

[Hidden]

pdffiller.com/jsfiller-mob1...

Your haemo can sign it for you.

[P-O-T-S]

Hi GardenGal, I have MF, confirmed diagnoses May 21st after BMB. I was presumed to have PV due to Polycythemic indices. BMB showed stage 2 reticulum fibrosis. DIPS Score “0”. Currently watch and wait venesection only.

[GardenGal3]

I'm thinking the BMB will confirm ET. Having a science background (meteorologist and state of Georgia Master Gardener (amateur botanist), makes me curious about the details the BMB will show. Since I can't take aspirin or any NSAIDs (ulcerative colitis diagnosis, no flareups since 2012...also year my platelets were seen as high at first), I went straight to Hydroxy. I think the hemo just feels since I'm on a Chemo drug that is designed to suppress bone marrow function and these platelet numbers are jumping from the 500s to the 800s he want a better look. I have had no bad side effects after 6 years on hydroxy, walking, gardening and playing soccer as if I never had an MPN.

[Buggerbear in reply to GardenGal3]

Hello GardenGal3! I was also a GA Master Gardenger in Gainesville, GA although I am not as active as I once was.I was not given a BMB but did extensive blood tests with my Ocon/Hemo Dr. and was diagnosed with PV JAK2 V617F mutation in 2014. I did phlebotomies for over 5 years but stopped because my blood clotted so easily. My platelets have always been high and still are, but taking Ruxolitnib 15 mg twice daily.

Maybe as the MPN progresses, I will need a BMB.

How are you doing these days??? Hope yiu are feeling well!

[MCW22]

I'm pv jak2 + diagnosed by blood tests. I've never been offered a bmb nor have I asked about having one. I've been on hydroxycarbamide for 8 months now. All my blood numbers have been reduced except for white cells which hover around 27. I take it that if at some point they suggest a bmb that would mean they suspect progression

[GardenGal3]

Well, just came home from the BMB. Feel sleepy but otherwise fine. Procedure was a literal piece of cake for me. It will be to learn more about ET and things from the result.