Is a bone marrow biopsy crucial for a diagnosis of ET, or can chemo drugs be started without one?

[Sarahjane100]

Is a bone marrow biopsy crucial for a diagnosis of ET? Has anyone been prescribed chemo drugs to bring platelet level down. ( mine is 591) without having a BMB? I cancelled mine because of a fear of the procedure after watching some done on you tube and reading patient experiences of having one done with only a local anesthetic. Now I am frustrated and annoyed with myself for cancelling.

[Aime]

Hi Sarahjane, although we have all got an MPN, we are all individuals in our disease and also in the combination of our other illnesses and treatments so the treatment for one person with ET, may be totally different because of this.

I’ve never had a bone marrow biopsy but I’m sure others who have will reassure you. I experience a lot of injections relating to my osteoarthritis, many of them very deep into joints and always say to myself, if it needs done, it needs done and you just have to get on with it. I usually find the fear of a procedure is usually worse than the procedure itself.

If you can take someone with you for moral support and I expect loads of advice will soon come in from friends in the forum who have experienced this procedure.

Take care, kindest regards Aimexx😺😺

[mhos61]

Hi Sarahjane,

I have ET, which was confirmed by both elevated platelets (500) and the Jak2+ mutation.

I was commenced on hydrea without a BMB. It isn’t always necessary to have a BMB. Some haematologists like to do one basically to have a benchmark to monitor future progression - or, if a case is complicated and needs further investigation for an accurate diagnosis.

Have you had confirmation of the Jak2, Calr or MPL mutation?

Mary x

[Sarahjane100 in reply to mhos61]

Good afternoon Mary. Thank you for responding to my question. I am triple negative for the three main gene tests. But my platelets are currently 591. I have had two appointments with heamotoligists in my local hospital, Northampton General Hospital. They advised taking an aspirin everyday, but won't say if what I have is ET, then the bone marrow appointment came and I couldn't do it because I was so nervous, and they wouldn't agree to sedation, saying they only used a local for the procedure!

[mhos61 in reply to Sarahjane100]

So - because you’re triple negative it’s a bit more complex. Your haematologist will want to proceed with a BMB for an accurate diagnosis.

Do you have an assigned clinical nurse specialist? Most of us do. If so, I would get in touch with them and discuss your understandable fear of the BMB procedure. She/he may be able to suggest some form of support. Just talking things through may be enough to alleviate your fears. I’m sure they’ve come across this before.

It is important to get an accurate diagnosis for monitoring and treatment purposes. Maybe people on the forum who have had this procedure will offer you their support too.

Keep us updated

Mary x

[fee13 in reply to Sarahjane100]

I agree you should talk this through with someone and get it done as you may not even have an MPN. There are so many factors that raise platelets and you would not want to take unnecessary medication if you don't need to. Dr Mesa explains this in one of his video's but unfortunately i can't find the link.

[Juliet46]

When I asked my haemo (on two different occasions), he said even if I had a BMB the treatment for ET would be the same, so he didn’t think it necessary unless something in my blood changes .

[Superwoman]

Hi SarahJane, my ET was diagnosed through the JAK 2 mutant test which it was proved I had ET JAK 2 Posative, they then started me on Hydroxycarbamide, plus I was already taking Enteric Coated Aspirin, that was five years ago now, just had my four monthly check at the hospital and all are normal. I have also asked would I ever need a BMB just last week and he said no, not unless my counts start to change and even then it would be highly unlikely in my case, but I suppose never say never!!!! It as far as I am concerned the answer is no.

Jean

[Rachelthepotter]

Hi Sarah Jsne

A bone marrow biopsy can show if you have MF rather than ET. That's how it worked for me. Not sure if the BMB is useful for the gene testing or whether that gets done on a blood sample. Blood, I think

When I had mine done it was a nasty few minutes, because my hospital didn’t offer sedation, only a local. But not such a big deal. And worth it, for me, because I needed to know what I had.

All the best

Rachel

[crapaud]

I can't say anything about BMB required or not for ET, what I can say is that I have had 3 of them and only with a local anaesthetic (nothing else apart from 'laughing gas' which I didn't use was proposed). Wasn't fun but soon forgotten. I found for the last one I had that relaxation was a help.

I required my BMBs to determine/confirm my PMF and MDS.

My triple negative was established with a blood test (in my case triple negative along with MF + MDS-u was a determining factor to opt for a SCT).

On the funny side my wife told the doctor 'my husband isn't squeamish, no need for anaesthetic' - luckily he didn't listen.

Good luck.

Gary

[Sarahjane100 in reply to crapaud]

Thank you Gary! Glad your OK and found the BMB's bearable! I enquired about sedation, but they said they didn't offer that!

[crapaud]

Another story that may make you smile - for my 1st BMB the doctor was being assisted by a rather pretty Italian student nurse, she instructed the student 'go on the other side of the bed, hold this gentleman's hand, give him lots of smiles and talk to him in such a way as to take his mind off what I'm doing'!!

Still hurt but was sweet of her all the same.

[Mackydee123]

Hi SarahJane

I am Jak2+ and was given a BMB during the first weeks of investigation to test for MF, it’s really to see if there is any evidence of scarring within the bone marrow. It’s not a pleasant experience but it doesn’t last too long and the person that does it is usually very experienced. Once I had the diagnosis for ET and the BMB showed no scarring I was told I would never need another one.

I met a gent in the treatment room the other day when I was starting my Interferon treatment who has to have one every 6 weeks!!! Now that would be frightening!

Speak to the Nurse for reassurance, it really only hurts while the needle is in, once it is done the pain subsides and the procedure only lasts a few minutes.

I had the nurse chatting away to me about everything and anything to distract me. But I’m glad I had it done as now I have a fuller understanding of my condition.

Make the right choice for you, they will look after you well either way.

Best of luck

Kerry

[Sarahjane100 in reply to Mackydee123]

Thank you Kerry. If they say I need to have one when I see my heamotoligist in July, I will. Have a lovely week. X

[hall2]

Hi I had a BMB last Tuesday in Leicester and I was dreading it but it was nowhere near as bad as I thought. I was given a local and gas and air. It was a bit uncomfortable but over with very quickly! My sister came with me which really helped.

[Ebot]

Don’t panic about having a BMB! (And don’t watch You Tube clips😂!). I wouldn’t describe it as my leisure activity of choice but really it’s entirely do-able. I’ve had two.

It’s not what i’d class as a ‘refined’ procedure 😁. The second was a bit more of a tussle than the first but I recovered more quickly. (I’d learnt my lesson first time around and did not walk down four flights of stairs afterwards and quick march to the car for 40 mins and then plonk myself down hard into the edge of the car seat right on the injection site - really not advisable 😱🤢. )

So some deep breathing is useful during and take it easy immediately afterwards and I’m sure you’ll be fine. It really sounds a lot worse than it is. And as others have said even if you don’t need it for a definite diagnosis it provides a very useful baseline to monitor disease progression. Be brave!

[Sarahjane100 in reply to Ebot]

Thank you for that! I did watch you tube videos, ouch!!! I'm the same at the dentist! I'd pay for sedation if I could!!! But I will be brave if told I need one at next appointment. And I do so want to know for sure what I have!

[Timjonze]

Hi Sarah Jane. Just here to add some reassurance - don’t worry about having a bone marrow biopsy. It’s a little scary as is any procedure and it definitely feels weird and a little uncomfortable (a bit like a patch of bruise being sucked around your back!). But it’s over quick and doesn’t hurt that much - and mine was a difficult one apparently, doctor was very young and maybe not done many! I have to do another one in the next few months and I’m much more relaxed about it now that I know what to expect so it can’t be that bad! Good luck!

[Dora1971]

Hi, I am also triple negative and was diagnosed 12 years ago with ET with a BMB. I’ve had a couple and yes they are a bit painful, but it really doesn’t last very long. I see it as a necessary evil that I need to go through xxx

[francesb]

Hi, I've had 4 because my diagnosis is complex/unclear. My hospital provides a local plus gas and air. My doc also prescribes 1 lorazepam tablet which I take before which is very calming/relaxing. One should stop aspirin for 1 week before the procedure. If you have one you'll be fine I'm sure, forget YouTube! Best wishes, Frances

[Sarahjane100 in reply to francesb]

Thank you so much Francis. Feel so silly now.

[francesb]

Hi Sarah, don't feel silly at all, we all have worries now and then but things are usually not nearly as bad as we fear! Good luck, F.

[Sarahjane100 in reply to francesb]

Thank you so much Francis. Wishing you a loverly, healthy day. X

[Bridie123]

Hi sarajane, my name is Carole and I live in MK so not far from you, I insisted on a BMB because my then haemotoligist got me in a right state ( got a different one now) it turns out I have really tough bones but the procedure still was nothing to be scared of, I would have it done again. ☺

[Richinspirit]

Hello - my husband has Et JAK2Neg and has never had a bone marrow biops. He was diagnosed 9 years ago purely on the basis of a high platelet count and has been on Hydroxycarbamide ever since. Incidentally - his current haematologists considers 560 to be perfectly acceptable - hence yours is not that much higher. Hope this helps.

[Sarahjane100 in reply to Richinspirit]

Hello. Thank you, that has helped a lot. Hopefully my heamotoligist will give me a bit more information when I see her again in July! Have a lovely day, thanx again, Sarah.

[Meatloaf9]

Hi Sarahjane,

I guess I'm a lot like you. Got diagnosis of ET in Jan this year and had a BMB in March to confirm the diagnosis and rule out other mpn's. I did fear the BMB before I had it done but I'm not sure if it was fear of the procedure or more a fear of what they might find.

The actual procedure was done by my hematologist with local anesthesia and I did take 25mg of over the counter benadryl about 25 minutes before he started. I felt no pain whatsoever and I wish you well if you decide to have it done. It really should not be feared as long as you have a competent person doing the BMB, I repeat that I felt no pain, just a little pressure at one point when he aspirated the marrow.

Best of luck to you

[Wyebird]

Hi Sarah Jane, I agree with Mary, there is no need for a bone marrow biopsy if a blood test detects a mutated gene.

It seems your doctor is thorough.

Good luck,

[mbr8076]

Hi Sarahjane,

I was diagnosed in February with ET as a result of a platelet count near 1 million and a JAK2+ test result. My hemotologist did not feel a BMB was necessary for my diagnosis. He put me on 500 mg Hydrea once a day at first and my platelets dropped to 650k and recently increased by another 3 pills a week and will find out in 2 weeks if they have dropped further. I have had no side affect from the chemo pill Sometimes, I wish he would suggest a BMB as a marker to determine progression.

[Lab-Rat]

Pre-MF can mimic ET so a bone marrow biopsy is now deemed necessary when ET Jak2+ to rule our pre-MF as per the new WHO guidelines. Please read pontygirl's post on ET/MF. She was recently diagnosed ET Jak2+, had a bone marrow biopsy and was diagnosed with MF.

[Sheryljean]

Hi Sarahjane

Am not sure if you have complete the BMB, but my doctor told me that I had two choices when it came to deciding this. I could do it in the office or go to the hospital and have it done there, which I did. I chose to have the Biopsy before starting the hydrea to confirm that I did not have any other underlying issues. It confirmed that I did have PV so I feel that the next step was the chemo pill. The biopsy went great. No pain except at the injection site which went away during the course of the day. Had great people in the room..almost a party going on 😀. If possible, see if this can be done at hospital. Lowers any anxiety as well.

Good Luck!

Sheryl

[katiewalsh]

Hi. It’s true we’re all different. After my lungs full of blood clots, history of high platelets then blood work showing jak2+, I went to a top leukemia MPN hospital where they said I should get a BMB. It lets them know how much if any scaring has occurred from your MPN and, I believe, can give them a more complete & accurate diagnosis. My BMB did hurt for the few minutes it was being done but afterwards I put on ice. I’m glad I had it done. Most people who’ve posted here seem to have little or no discomfort. But it’s nothing to be afraid of. Katie.

[Lilly1958]

Hi, I think BMB is necessary , I have Et for 26 years only on aspirin and I have First BMB 2002 and comfim ET, last year my hct was 48 and hemo. Put me 8 month on venosection and after on interferon . He was sad no need BMB becouse will be PV. I went to second hemo. And he did BMB , (becouse of long time od MPN witaut drags , can go to MB) and result from BMB before 30 days comfim ET, and MF grade 0 . I have diagnosis 26 years ET, 8 month PV, and now agen ET. BMB helping lot , my platets is now 400, hct 36, and thanks god agen only on aspirin and waiting and every month checking my blood . BMB is not hard , and very important . Good luck ! Lilly!