ET and bone marrow biopsy

[J-fd]

Hi , I have ET , was diagnosed 2020 , I suffer with terrible fatigue and bone pain is only way I can describe it , I’m having a bone marrow biopsy in July , just wondering if anyone had one and what were results and how painful is it please

[Cat1001954]

hi I had one it took about 25 mins uncomfortable but they keep asking if you can feel pain and if needed they top up your local pain relief I was achey after but no major pain good luck just keep still as possible snd curl up on your side

[J-fd in reply to Cat1001954]

Thank you cat , was your result ok ? Sounds silly but not sure what they look for in the bone marrow

[Cat1001954 in reply to J-fd]

they did it to confirm I ha

[Cat1001954 in reply to Cat1001954]

sorry they did it to confirm I had ET Hope yours goes well x I don’t really know much about my illness I was diagnosed last august I went to consultant yesterday and I have to increase my hydroxy to 1000 mg 3x a week and 500mg 4x week as all my blood counts s have gone up

[Cat1001954]

let us know how it goes

[J-fd in reply to Cat1001954]

hope you blood count isn’t too high and thanks will let you know how it goes

[LT55]

Hi there! I suspect the majority of folks on this site have had one or more BMBs. I also suspect that some will tell you it was easy (just feeling some pressure) and some saying it was more painful. Ultimately the experiences vary - in part because how the procedure is done also varies (e.g., with or without sedation). Just remember that it is a quick procedure...and more importantly, a necessary procedure to understand your condition.

My BMB in March was with a twilight sedation and was largely not painful (injection of the anesthesia was a bit painful, but over in about 5 seconds). I reacted afterwards to the sedation, but a lovely member of this group provided a suggestion if/when I have another BMB to assist with that.

The results of my BMB were not as clear cut as I had hoped - diagnosis hovering between ET and pre-fibrotic MF. But was relieved to find no fibrosis. Ultimately, having the results has given me some peace of mind and has provided my MPN specialist and I to better determine a course of action.

Best of luck to you.

[J-fd in reply to LT55]

thank you for your reply and yes it will def give me peace of mind

[Bindi77 in reply to LT55]

hello a question on your comment about your BMB results not being so clear cut. My son is scheduled for a BMB soon. What would be clear cut? What are the best results you could get? Isn’t no fibrosis a great finding? Sorry I’m new to all this.

[Simris]

Good morning, I had bone marrow biopsy done 2019 to diagnose ET, I was so nervous but nurse was lovely and talked whilst Dr was doing procedure. It was slightly uncomfortable having it done but only lasts 20/30 mins and I was given gas and air which helped massively!!! Good luck with your bmb and do let me know how it goes.Sending hugs your way, Phyllis x

[J-fd in reply to Simris]

thank you

[RazB]

Hi J-gd, I have had several BMBs. I’m in UK and am offered local anaesthetic- I seem to need a lot of this as can still feel everything on the “normal” dose! For the last few BMBs I’ve also had gas & air which I find really helps me. I take as much as I can get and drift off to a beautiful beach somewhere for 20 mins! There is a lot of communication from the doctor and it’s fairly quick. Paracetamol for a day afterwards and a good bruise. I found it quite difficult to get my head around it for the first few but it’s an essential part of our care and if you’ve been told you need one go with it and trust your docs. You’ll be fine. Keep in touch and stay strong 💪❤️

[J-fd in reply to RazB]

thank you , I was diagnosed when covid came out 3 years ago and my consultant said I should of had the biopsy then , just hope it’s all ok

[Holehird]

I had a bone marrow biopsy last July to see if I had ET. It took about 30 minutes and was uncomfortable but the nurse were great and kept asking how I was. I am taking hydroxycarbamide three time a week. Seem to get constipation quite a lot and at the moment feel tired although the nurse seemed to think that was a virus as I have been on the tablets for five months with no side effects. Hope all goes well.

[J-fd in reply to Holehird]

thank you

[Smudger0122]

Morning J-fdI had a BMB March last year, as I was diagnosed in 2021 with essential thrombycythemia cal-r. Discovered accidentally when I was diagnosed with a brain tumour. Which was bad enough.

The BMB was explained to me that the check was for a baseline, with going forward and monitoring my ET.

Mine came back ok.

A score of WHO 0/1 or something like that off the top of my head.

The procedure sounds worse than it is, once anthesestic applied the area is numb. I would describe it like being at the dentist, same sort of sensation if having dental procedure.

The worrying is worse than the procedure.

I to am on Hydroxycarbamide take 3 one day, 2 next day, then 3, then 2 same cycle.

My highest platelet count was 1665 feb 2022, im now currently at 304.

Much safer reading.

I do suffer fatigue, tiredness throughout the day. But since going through all this health change I hit an anxious time.

So could be anxiety related.

Don't use DR Google for answers, that doesn't help.

Use experience on this forum, with other people.

Wishing you all the best,

Smudger

[J-fd in reply to Smudger0122]

thank you

[Mishie14]

many good comments about BMB. I had one like you to help confirm ET. I had no symptoms and to this day have none from ET but wow I had some horrible side effects from the prescribed drugs. Like you first was hydroxyurea, treatment of choice, that caused significant bone and joint pain that got worse as dose and frequency were increased. Platelets went down but not near enough. Brain fog and overwhelming fatigue plus the pain were too much. Losing sense of taste and appetite were the last before my doctor agreed quality of life required a change. After a month I started anagrelide, second choice. The side effects were much less severe but upon increasing the dose again because platelets slowly coming down a new one of heart palpitations and skipped beats started. More drama due to drug. For both drugs, blood tests showed 12x times liver values. In March I started drug three, peginterferon injections. Should have been choice 1! This is working and with one side effect, a single small hard red spot on my shin. It’s inflammation treated with a mild steroid creme. My points are #1 a BMB is routine and yes it hurts with local but only the few seconds the drill is active for each sample. I’m 72. I did it with a local and will do again with local if / when needed. #2 is we’re all different and so reaction to drugs varies. It may take a while to find what works best for you. Don’t be afraid to speak up about side effects. Quality of life is not to be forgotten on this journey. #3 is be sure to get data from blood tests. Watch your liver and kidney enzymes for sure. They will likely go up but that can be normal. It’s how far they go up…and be aware potassium can falsely go up in the sample. My latest adventure is falsely increased potassium due to blood draw technique and tools. Called pseudohyperkalemia. It will cause unnecessary trips to ER to retake blood test which result in an accurate plasma reading via IV, Best of luck to you and stay safe!

[Janis12 in reply to Mishie14]

Hi, interesting journey. I am hoping to come off Hydroxy sometime soon, similar side effects as yourself but also hair loss. Was just wondering if you have found any hair loss with Peginterferon, I don't want to go from the 'frying pan into the fire' as they say.

[Mishie14 in reply to Janis12]

No hair loss on peg interferon. Been on it since March 1 and only issue has been hard red spot on shin that is treatable. Fatigue, brain fog, bone and joint pain, appetite and taste and most importantly high liver enzymes came down once off hydroxy and anagrelide. The side effects and their severity did not happen overnight nor did they go away quickly--it took 6 weeks. My platelet level was not stabilized on these drugs so it went back up over 1 Million during the recovery time which is why coming down again slower on peginterferon got me into false high potassium in blood tests. Have answers for that and hematology has helped to get their local lab to step up to change in technique and use of green cap collection tubes that are coated with heparin, an effective anti-coagulant. I can't say enough positive about peginterferon experience. Started slowly at 45 mcg every two weeks for 4 shots to slowly adjust to the new drug. Then went on weekly and doing great with more platelet count drop. No issue with liver enzymes. Hope this helps you out. Stay strong and safe!

[Janis12 in reply to Mishie14]

Many thanks for your response, I am due to see consultant next week so unless he comes up with a valid reason for me not switching to Peg I am hoping for better outcomes and fewer side effects. Another issue with hydroxy is having to wear factor 50 sun block all year round, I lead an outdoor life so of course this increases the skin cancer risk, friends ask 'are you okay, you look pale' along with 'what's happened to your hair''. At one point a few weeks ago I felt like stopping my medication in favour of taking the risk as I am so fed up with it all but I read so many good reports about intereron on this site it gave me some hope.

[azaelea]

Hello J-fd. I had BMB four years ago to confirm suspected ET. I had local anaesthetic in right hip and all went very well. Only felt a brief sharp pain which only lasted a moment and everything went fine . Just slight bruised feeling in hip for a day or so after. My diagnosis was JAK2+ Probably ET. I have queried this inconclusive finding several times but nobody appears to know. I’ve been on Hydroxy 500 mg daily since. You will be fine , it’s always the apprehension that’s the worst. Best wishes, Fran

[J-fd in reply to azaelea]

I also have JAK 2 ET I’ve been offered interferon but not sure what to do , thanks for reply hope mines goes as good as yours

[dburbax]

My husband just had his 3rd bone marrow biopsy. Typically there is a little soreness at the 3/8" incision site for a couple days after the procedure. The procedure itself is painless. They will sedate you.

[HazeBlue]

did they diagnose from blood test?

[J-fd in reply to HazeBlue]

Yes blood test

[HazeBlue]

are you Jak 2 positive? I’ve had ET for ten years . On Hydroxycarbamide and told didn’t need bone marrow biopsy if jak 2+

[J-fd in reply to HazeBlue]

yes JAK 2 ET

[Staroftheday]

hi hope all goes well I got diagnosed last June am a 48 yr female I also suffer from tiredness and bone pain in my legs sometimes wake me at night it’s feels like the bones not legs but doctor just brushes it if I speak beak to my doctor on Monday so I will again bring this up x

[J-fd]

hi and thanks , yes the pain for me can be worse at night literally in my bones legs and hips , def speak to your doctor again my consultant is brilliant

[Andrew8]

I've had two bmbs, they were a bit uncomfortable , but with local anasthetic were not painful. They help with your diagnosis.