Bone marrow biopsy

[Cityreach]

Hi everyone, I have PV newly diagnosed and am concerned re BMB, can anyone tell me what to expect , is it painful after and for how long, cns said you can feel pressure, but the procedure sounds awful to me and puts me off having it done although Guys hospital say they like to do it, but I know decision is mine, any advice would be appreciated please.

[LittleLuna]

Hi. I had BMB done in June and like you, was quite apprehensive as not sure what to expect.

Mine was sore, as expected but not at all as sore as i thought it would be. In my case afterwards it was uncomfortable for a couple of days and I was back to exercise on day 3. I would suggest taking paracetamol before procedure and also keep topped up for few days after procedure. I take painkillers for another condition and think it helped, but could be in my mind lol

The nurse and consultant were great, keeping me calm and up to date as each part of procedure was done.

If you are treated through Guys then I think you are certainly in right place, with a team who

Will be used to doing this in their sleep.

X

[Cityreach in reply to LittleLuna]

Thankyou so much, I really appreciate you replying, I am anxious and know I should have it done, I believe from older blood test that I have now looked at I possibly had PV back to 2017 at least early stages and only went to GP in Feb this year as itching was so bad, who would gave thought it would have led to PV which I had never heard if or any one I have told has heard of it, and in 3 months went from having itching after showering to bring diagnosed with PV

[Love2walk2]

Hi, I had my BMB done in Nov. The thought of having it done is much worse than the procedure itself. It took 30/40 mins and the numbed the area completely. All I felt was some pressure at the sight on the hip as the BMB was done. Afterwards I took painkillers for a couple of days and back to gentle walking and exercise. The doctor was brilliant and talked me through what to expect during and after. Please don't worry to much and remember to breathe. Good luck with yours if you go ahead. It will give you a clear baseline .

[Cityreach in reply to Love2walk2]

Thankyou so much for your reply it has really helped me, I am anxious and wanted some real experiences from those that have had it, thankyou x

[Love2walk2]

You are welcome. I also put some ice on it on and off. I had minimal bruising and definitely helped me. You will be fine.

[Cityreach in reply to Love2walk2]

Thankyou x

[shiftzz]

Take the gas and air if offered, better than gin..

[Cityreach in reply to shiftzz]

Thanks for the advice Hooe you are keeping well

[Ebot]

Hi. I’ve had two BMBs - both at Guy’s. It’s worth doing as they give you an important baseline for your disease and also a much clearer insight into the nature of your particular disease which can have implications for its management.

I can’t say BMBs are my leisure activity of choice but the idea of the procedure is definitely much more anxiety inducing than the procedure itself.

From experience I suggest you take it easy afterwards, don’t go striding off on a long walk, be careful not to bash the procedure site, take some pain relief and rest up when you get home. Recovery is much faster! Yep, I learnt the hard way! Wishing you all the best.

[Cityreach in reply to Ebot]

Hi thankyou for the advice it's much appreciated it has put my mind at rest a bit too, Hope you are keeping well

[ciye]

I had my bmb 2 months ago and was surprised it wasn't as painful as I expected. There was some tenderness but not enough to take any painkillers.

[Cityreach in reply to ciye]

Thanks for sharing your experience it has really helped

[Solyesh]

Had a BMB for official diagnosis and while it was not the most pleasant experience - very glad I had it done as it also provides a baseline for future if needed. The good news if you are having it done at Guys, they have probably literally have done 1,000s..the more experience the tech has the better for the patient. I would say, everything else being equal, to go ahead and get it done, rest afterwards, if possible have someone help you get from the appointment home (you will be sore) - I drove myself - it was not far but that was not pleasant. I was sore for about 4 days afterwards but overall very glad I had it done.

[Cityreach in reply to Solyesh]

Thankyou for your advice it really helps to listen to other people's experience of it and it may not be as bad as I think it could be, thank you and hope your keeping well

[Bears23]

I’ve had two, it’s not that bad. I had both done in the office, felt some pressure and it was complete within 3-5 minutes., I drove home and felt very little discomfort and went to work next day without any issue. Also, good to have. When I required the second bmb, my MPN Specialist was very happy I had the first to verify the progression. Best of luck.

[Cityreach in reply to Bears23]

Thankyou for your reply, yes your right it would help further down the line too, I am new to this and all seems daunting at the moment but Thankyou for your time and view on it, hope your keeping well abd have good weekend

[Meatloaf9]

Hi, I had one done 4 years ago with local anesthesia. The doc had 40 years experience, I had no pain. The experience of the person doing the procedure is important. They gave me a benadryl tablet about 25 minutes before they started, it made me a little dizzy, I don't think it really was necessary. Not a bad experience at all. Good luck to you with yours, go with a positive attitude and you will do very well. Best to you.

[Cityreach in reply to Meatloaf9]

Thankyou so much , its makes me feel bit better about having the procedure I will definitely ask about the experience the person doing has, thanks have good weekend

[Otterfield]

I've had five. I would say it's unpleasant rather than painful. You feel pressure and some pushing. Afterwards it might ache but Paracetamol does the trick. They might offer gas and air but in my experience the local anaesthetic was enough to make it bearable.

[Cityreach in reply to Otterfield]

Hi thanks for your reply, all the replies have definitely helped and also helped me for some questions to ask before the procedure , thank you, have good weekend

[289651]

There was some discomfort during the procedure. Mostly just some pressure.Very little afterwards.

[Cityreach in reply to 289651]

Hi thankyou for that info helps making my mind up, have good weekend

[spartacus1952]

Personally, I found it extremely painful. I asked for full sedation to have this test but was only given "conscious sedation" which means your dopey but awake and can feel pain.

The procedure was done in a hospital but not "ultrasound guided", which I now know is less painful. If I were you, I would ask for this method as it is quicker because they can see where the bone is and direct aspiration needle right there, instead of poking around, which is what was done with me.

I was given Tylenol #1 to manage pain, I took one tablet but did not do much......I then took 2 and that put me to sleep so I had some relief. I found it hard to sit comfortably, lie comfortably and with walking there was pain. All this lasted for about a week's time.

This is just MY personal experience, not everyone is the same. I hope never to have another one if at all possible.

[Cityreach in reply to spartacus1952]

Hi thankyou, another question on my list to ask, I am sorry it was so bad for you this is my worry about having it done but it's helpful to hear experience and know what questions to ask, enjoy your weekend

[EPguy]

As noted below by Meatloaf9 <<The experience of the person doing the procedure is important.>>

If you have transportation you can get a higher level of anesthesia, if your are driving yourself be sure Dr uses plenty of local anesthetic. Mine was uncomfortable with one portion of extreme pain. Dr was I think best ready for retirement.

I will do one again maybe after two or so years on Besremi. One reason to have BMB is for future comparison.

[Cityreach in reply to EPguy]

Hi thankyou, I will definitely ask the level of expertise of the person doing the procedure as this has been mentioned earlier and seems key to it going smoothly as possible, enjoy your weekend

[Stripecat]

Hi Little LunaI too was very apprehensive getting a BMB but my haematologist made sure I had the green whistle during the procedure and I just sucked on that Luke a demon until it was over

To be honest didn’t feel anything using this

Make sure you ask for it

[Cityreach in reply to Stripecat]

Hi thanks for replying but what is the green whistle is that gas and air? That was never mentioned to me when telling me about the procedure only a local, but I will definitely ask as someone elsementioned that too

[Stripecat in reply to Cityreach]

It’s a drug called penthrox - known as the green whistle an analgesic used as pain relief Google it and it will give you more info - but worked really well

[Cityreach in reply to Stripecat]

Thankyou I will google than and have a read up

[Timjonze]

Personally I would advise having the procedure as it tells you a lot more about how your MPN is behaving and is a good marker in time for how it is developing. It is not as bad as it sounds. I wouldn’t say it’s a pleasant experience - there is a bit of mild/moderate pain in short bursts, and certainly some unusual sensations you might not have experienced before! But the fear around it is, I found, much worse than the reality!

[Cityreach in reply to Timjonze]

Hi thankyou for your experience getting peoples real opinions who have been through it has really helped, although am still anxious but I think it's all helping to make my mind up to have it, thankyou so much

[Timjonze in reply to Cityreach]

Well I’ve had three so far and I keep going back - so they can’t be that bad! Good luck with everything

[Cityreach in reply to Timjonze]

Thankyou so much, keep well yourself too

[Hocus58]

Hi, had a BMB in March this year just 3 weeks after being diagnosed with PV.

Like you I was concerned and apprehensive but would say the thought is worse than my experience although the nurse did say everyone is different.

I had a local anaesthetic in the area and can say I did feel a bit of pain at aspiration but this was only for a few seconds. The whole procedure lasted about 30 minutes from local to getting tea and biscuits. I drove home after.

No major issues after, localised pain which went in couple days with no need for pain relief.

In my case the thought was definitely worse than the actual procedure. Good luck x

[Cityreach in reply to Hocus58]

Hi, thankyou for your reply, I have just read your story and can see some of my own issues in you, I have recently been diagnosed with PV and I feel a bit lost and overwhelmed by it all, when I read on here I feel there is so much to learn and it sends me in panic mode, the different drugs, side affects, terminology used its all so scary and the more I read it just confirms there is a whole lot more to PV than I thought, I only mentioned to Dr re itching after shower had some bloods done which were elevated then few more bloods over next 6 weeks or so all elevated hb 186 and HCT 58, I has googled and read a bit about PV and didn't feel GP taking seriously different gp each time only ever a phone call never face to face h they eventually asked for advice and guidance from haem dept who said repeat test in 6-8 weeks, I insisted i was not going to wait on that advice I had looked at blood results back yo 2017 and were high back then and said they needed to do more so they asked fir advice and guidance from a different hospital and they said to refer to haematology now that's how I ended up at Guys hospital, when bloods are done via gp I can see all my result on nhs app, but as Guys is a different health Trust to my gp trust I can no longer see results, this worries me too, I am going to ask at next appt if I can get copy of bloods as Iike to monitor myself, got into a tearful few days the other week after first looking on here seeing different stories think that's when I realised there is so much more to PV, and the medication worries me too, had chat with my CNS nurse she said take one day at a time at moment said I was reading too much too soon and reading other people's experiences and reading ahead of where I am in 5my diagnoses and to take my time, I find it all very overwhelming I have had 3 venesections since May and still HCT above 45 last was nearly 2 weeks was 48.7 hb 177 the previous one was 4 week before that was 47.6 hb 182 due to have another on Wednesday then back to consultation 8th aug, I didnt realise it would still go up so quickly after venesection my CNS explained it as a switch that never turns off , red blood cells just continue to produce as the switch for us never turns off

Sorry went off a bit there thankyou for your advice and experience on BMB and I wish you well on your journey and hope you get things sorted out

[NCB1983]

Hi Cityreach, like most of the replies on here i too have had a BMB as part of my ET journey. It’s not my leisure activity of choice but it gave the experts the info they needed to treat my ET appropriately. Hopefully you can have someone in there with you to hold your hand (I had mine during covid and my husband wasn’t allowed in, but the nurse was great, she held my hand instead!)After the procedure I felt a little tender. I took a duvet day and binge watched The Crown. My advice would be to not plan to do too much the day after the BMB. Take some “me time”.

I know it’s your choice but if the experts recommend it then I would follow their advice.

[Cityreach in reply to NCB1983]

Hi, thankyou so much all the comments have been reassuring and has really helped, with ideas of some questions to ask and what you expect thankyou so much

[Cja1956]

I’ve had three BMB’s in the last 14 years. My first one was for my initial diagnosis of ET and it was was done in the office. It was pretty quick, and I was able to drive there at home by myself. My second one was in 2019 with a new doctor to see if I had progressed. It was done in the hospital and maybe because it was my age and because my bones hardened, It was a little more painful than the first one. I was lightly sedated. I was achy all weekend but then I was fine. It did confirm I had progressed to MF. The third one was in 2021 to determine whether I was a candidate for a SCT. I asked for a little extra sedation which helped.

So I guess my advice to you is in agreement with everyone else that it’s not fun, but I believe that it’s necessary to get a full picture. It’s over quickly and not as bad as what we imagine.

[Cityreach in reply to Cja1956]

Hi, thankyou so much for replying, I think all the responses are making my anxiety a bit less and am hoping too ,the thought of it is worse than the procedure, wishing you well

[jacquelineruth2000]

Hi I had my second one on the 6th June the nurse injected lots of local anaesthetic and I also had gas and air. Definitely a much better experience this time around I also had a lift to the hospital there and back so I didn’t have to drive. I felt a bit bruised & achy the next day but took it easy and took paracetamol. Hope yours goes ok too

[Cityreach in reply to jacquelineruth2000]

Thanks for your reply listening to other peoples experience teally helps, hope you are keeping well