Hey guys. So I am here again and I am quite nervous about my needed bone marrow biopsy test. My Hematologist come up with this decision since we already tested a lot of possible other diseases and it is negative but still, my WBC and platelets are high. It's been a year that are elevated. Btw, I am jak 2 negative. My doctor suspects that I have Chronic Myeloid Leukemia and strongly suggests the bone marrow biopsy. How painful is it? I am planning to avail myself of sedation. Will it help to relieve the anxiousness and pain? I am also afraid of the result.
Thank you!
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Depends who does it. My first was painful. The second, new consultant, quite bearable, she gave me some sort of tranquilliser they use with children and it worked a treat for me. Ask what is available for you.
I had a bone marrow biopsy a couple of weeks ago for the first time and did not have sedation. It was uncomfortable but the procedure did not last long. Good luck
Most of mine was uncomfortable. But a portion was definitely painful. My Dr used Novacain. I think it hurt most when he was not pouring enough of it in. So my take is be sure plenty of anesthetic is used throughout the procedure. If/when I get another one I will ask about all the pain killer options. I also now have a different and I think more caring Dr.
Sedation is likely a good idea, but then you need someone to help you get home.
It's understandable that you are nervous but at least you will get a diagnosis and then the appropriate treatment. The procedure only takes about 10 minutes and although some people on here have experienced pain and discomfort I can honestly say I was fine. On both occasions the area was numbed but I did not have sedation or anaesthetic. Good luck.
Hi Mark, just wondering why they wanted you to have a bmb, your diagnosis and pl count identical to mine, when I was diagnosed 6 yrs ago, I've managed to avoid bmb so far. Jo
I needed about 3-4 months on HC to get my PLT down to normal. So if you are down that much in 1 week it is likely working very well. What is your current dose?
You should confirm why your Dr wants to up your dose. With your quick response adding more could be like flipping your house heater setting to max, it won't get you warm faster but will get you too hot after enough time.
For me, after the 4 months the higher dose made me miserable, I should have cut it earlier.
If your current rate of decline continues, (a big assumption of course, it's more likely to be less fast later) you would be in normal PLT range in just over 2 weeks. Your Dr should be tracking your levels frequently in the near term; let us know how it goes. I've posted before, here is some of my PLT history on HU (1000 till Apr 2021, then 500) My side effects got bad at the Apr time.
I will post next week on my new Besremi journey, it's having an effect.
I've had a vague mix of dizziness, malaise and to a less extent, fatigue. Malaise is the worst part, and as it sounds, hard to define. I'm hoping all gets better as I quit the HU.
I can predict a bad week by on set of GI symptoms (loose stool etc) Slight constipation from the HU relates to better days.
For me I believe 1000 was too high a dose to maintain. The HU was working too well and upped the symptoms after 4 months. My dose change matches the change in the PLT plot above at Apr 2021. (HCT also was a low point there at 39) It may have been ok to start at 1000, but in hindsight I should have reduced my HU does earlier. I actually started to respond ok on just aspirin, but my Dr wanted fast results.
Many here have no issues at all with HU, so it might not be so sensitive to dose in your case. But it seems you respond quite well to it, hence the question for your Dr of why keep adding?
Do you have more history of your PLT results with and without HU?
Good to get such a large thing out, but clearly not all is perfect yet.
Getting your MPN sorted will be helpful. Interferon (INF) is a drug that for some can actually reverse MPN disease. There are two brands available, Pegasys (PEG) and Besremi. Besremi is the newest one, PEG may be more easy to get in UK.
INF is becoming more used recently as its advantages are recognized. But for may years it has been prescribed for younger patients vs HU since it does not have the long term toxic risks of HU.
Here is a post that discusses INF and its potential. There are many other discussions of INF on the Voice:
Mine was, but less than I expected. For me what's really painful is when a strong enough pain lasts a long time, no matter what kind of pain. This was a short procedure. After that I had a feeling they've just injected me with an anesthetic and the real procedure is to come but nope, that was it. I'd sign up for half a dozen bone marrow biopsies before I agree to another gastroscopy...
Next time I would ask for some oral sedation for anxiety and pain. The doctor gave me a local, though it wasn’t too effective. The marrow aspiration wasn’t difficult , though I found the bone sampling to be challenging. I asked why they didn’t give more anesthetic and he replied that I should have asked the nurse beforehand. So now I know!
I had one 5 years ago and it was extremely painful. I also bled all over the place afterwards despite everything having been done correctly. My hematologist, who is head of the hematology department, has done thousands of them, so is very experienced. Anyway, I have to have another one later this month and requested both sedation and the pills I was given afterwards to stop the bleeding, so don't expect problems this time. By the way, one of the hematology nurses who assisted in the procedure said she's worked in that department for twenty years and in all those years it was only the second time she's ever seen bleeding like that. Almost forgot to say the BMB wasn't done for diagnosis. A blood test had shown I was JAK2+ and by my numbers it was clear I had PV (at time of diagnosis I had gone to the ER with a hemoglobin of 23.9 and hematocrit of 67). The BMB was done when my symptoms changed. The upcoming BMB is to compare with that baseline. Also I've been on interferons, First Pegasys and now Besremi for about 3 years and I guess they want to see if anything has changed.
Sorry to say that all my bmb’s were extremely painful - despite local anaesthetic and gas and air. you just have to grit your teeth and bear it! All the best SkipperL
Hi good morning. I had one carried out here in UK this time last year. I had no sedation, but local anaesthetic. You cannot say it is the most pleasant of experiences, and there is a certain amount of discomfort for a short time. The Consultant explained what was happening throughout and used more numbing around the area when needed. I had absolutely no problems at all during the procedure or afterwards. I think often the thought and anxiety is worse than the thing itself. Try and relax and breathe through it and I pray all goes well for you.
Mine was more painful than I had imagined but also the MPN specialist who did it was having a very hard time getting the actual bone sample (and he's done probably at least hundreds himself). I had only local anaesthetic - the good news was that it was relatively a very short procedure and in all honesty the pain of the procedure was over before I knew it..I was also sore for about 10 days afterwards but only 1 or 2 that I would describe as pain (but also likely to the difficulty in getting the bone marrow sample and nothing that over the counter meds and some extra spoiling at home could not handle) - it wasn't pleasant but far from the worst thing I've had to experience. The important thing is that it is over quickly and you will have additional information. I too found the waiting for results more anxiety producing than the procedure itself. Best of luck!
Reading a bit around Mediterranean diets, I have been veggie since 1996 anyway, and this came up. Has anyone used it, or is it safe to use for MPNs at all please? Thanks in advance.
Advertised food supplement containing vitamons and minerals I think
If you want to drink smoothies then make them! It is not a magic potion!
As a vegetarian it is more important that you make sure your proteins are balanced - if you eat fresh fruit and veg all that this "promises" is already taken care of.
I had mine done 2 years ago with local anaesthetic, done by a female haematologist, didn't feel a thing and while process finished with 20 minutes. No pain at all.
Hi, I hope to reassure you that it's not as bad as you might imagine and is the right thing to do. I had to fight and insist to get one. I was completely petrified, had a local anesthetic and my husband and a kind nurse were there with me and I was given gas and air (what you have for giving birth) which helped my fear and something to focus on. It was an odd sensation but NOT painful and very quick, and healed quickly. I would definitely do it again if needed without do much fear and panic. Sending you kind thoughts and strength and wishing you the best of luck.
Thank you. Everyone for sharing your bone marrow biopsy experience. I almost forgot to ask, can BMB spread cancer? My father died in 2017 due to carcinoma. His doctor conducted the tumor biopsy in March 2017 and he died in May 2017. It metastasize to other organs.
How could it? A sample of tissue (bone marrow) is taken from inside the bone via a special needle without touching the other organs or skin. It is a diagnostic tool like your fathers biopsy. The biopsy ( ie cutting out a sample) presumably just told the medics how bad your poor father's condition was - it will not have spread it - it spreads itself.
If you are this anxious, perhaps ask to talk to a McMillan nurse about the nature of different cancers.
Maybe it is different since his sample was taken in his butt skin, before the procedure, he has no wound at all. After the biopsy, the wound from biopsy became big and it is really awful since cancer wound won't heal.
perhaps it was all a function of how bad the cancer already was? the body had no resources to "fight" a separate infection. Only the medics involved could tell you more.
I just had a 2nd BMB yesterday in UK at Christies. Clinical nurse specialist was ace. You'll get the sting a bit from the local anaesthetic for the skin. Sometimes strange sensation as they draw the aspirate out and when I had the trephine that was more of a deeper ache but literally only lasts 3-4 seconds on 2 occasions so hopefully you will be fine. There is a bit of tugging sensation especially if bone/marrow quite hard. I didn't take any sedation/analgesia at the time but they did have entonox ready for some patients to help relax them.
Just feel bit sore/achy from it today but paracetamol helping. The nurse talking and radio on in background good diversion. The reassuring thing is the painful bit usually only lasts a few seconds so makes it bearable as you know it will be over soon- just focus on your breathing and something else then and it is soon over.
I had skin numbing, followed by local anaesthetic and found mine to be weird rather than painful. the most painful bit was the finger prodding around the bone , presumably to find a small hollow to go in with needle !
I had a BMB done in January. I was anxious about having it done. I asked for a Valium to take before the procedure. It was done in my hematologist’s office using a local numbing. Honestly, it did not hurt. I felt pressure while inserting the needle . The PA explained everything while performing it. I do have some extra pounds/ padding😂. I meditated and used breathing techniques . You got this… Good luck.
Go for it! Bone marrow biopsy is not too painful & it's worth knowing exactly where you are with diagnosis etc... think of something nice whilst it's being done..... Good luck!
My BMB was more uncomfortable than painful and that was with local anaesthetic . I did ask about sedation and they said it was not necessary but to be honest if I ever need another one I am going to insist on the sedation....my nerves were in tatters. The after effects were just mild discomfort for a few days but that did not stop me going out cycling and to the gym that same week. Good luck.
Just had one a few weeks ago at md Anderson here in Houston. I was apprehensive as well but it was no big deal at all. Only slight discomfort and the info derived from the procedure is very informative. Good luck and be well. You will be fine.
Great summaries here we're all learning from. It seems clear that the skill of the Dr makes a big difference. How the anesthetic is applied is likely quite important. If I have another I will ask details about the planned numbing procedures and options.
Hello. I had mine 6 years ago and like you I was nervous. The thought of going was worse than the biopsy. I didn’t have sedation the nurses were very good talking to me all the time. I felt a sensation but not painful. Good luck and take care
Hi Anonymous! Not sure if you have had your bone marrow biopsy yet, if you haven't here is my experience. And I say this acknowledging every person's experience is different and everyone has a different tolerance to pain, but for me it was very uncomfortable and very painful particularly when the technician gets to the bone.
This pain may have also been heightened because in addition to having a MPN I have a neuromuscular condition. For myself, the biopsy happened in three parts (1) numbing of the area (the hip area, the biopsy was taken from the hip bone) which took 15-20 minutes (2) then the needle went through the muscle which was 5-7 minutes (3) the needle went through the bone another 5-7 minutes. That was the part that was painful because the numbing medication I received only addressed the muscle and not the bone (numbing for the bone was not an option). If you have good technician they should explain this process to you. It is also important you keep still which again was difficult because of my neuromuscular condition.
Once the process was over, I let out a good cry. This process and the additional testing I received was a stressful time in my life. If you can bring a family member or friend I recommend that. I had bruising and soreness for a week and had to take off a day from work following the procedure. Depending on the healthcare provided to you the options and treatments may not be the same, so ask questions when you can and a friend or family member that can provide social support. Best of luck to you and hopefully you can update us as to your experience.
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