Hi, hope you are all keeping well. I am Jak 2 on Hydroxycarbamide for the past 10months. My platelets were down to 475 but my last blood test showed they were up slightly to 525 and my iron levels had dropped. I was sent for a bone marrow biopsy and an iron infusion last week. I was given a local anaesthetic before the biopsy but it couldn't be carried out because the anaesthetic didn't numb me. The doctor said he couldn't give me a top up as I had had my limit. They are going to try again next month. The iron infusion was fine though I did feel nauseous for a few days after. Has anyone else had a problem with the anaesthetic. I am worried now that this may happen again. I have been given a tablet I Lorazeoam to take an hour before the procedure as it should help relax me. I am so grateful for this forum as it has been a great help in the past.
Bone marrow biopsy: Hi, hope you are all keeping... - MPN Voice
Bone marrow biopsy
a fluctuation in platelets by that amount is absolutely normal
Yes, that's what I thought but my haematologist insisted on the bone marrow biopsy because my iron levels dropped.
When you say iron levels dropped do you mean ferritin etc or Hgb , RBC and Hct
Many here have BMB without anesthesia or relaxants. I did and there was one quite painful part, otherwise medium pain. But if you have someone to take you to the Dr and Dr offers, it is a fine idea. I would gladly do it next time if I had. When you say "didn't numb me" you mean it was still too painful as the Dr tried, is that right?
As ainslie notes, (RBC, Hb, HCT) vs iron are two different things esp with MPNs. Were you getting red blood cell infusions or iron?
It seems the Hydroxycarbamide (HC) is doing too well on the Hb but less so on the platelets (PLT). What were your Hb and PLT counts before the HC and now?
Hello EPguy. After giving me the local anaesthetic, the nurse tested the area with pin picks which I could feel so she wouldn't proceed with the procedure. My initial platelets were 1400 so the HU has been working. They were down to the 400s but have crept up to the 500s which I didn't think was too much to worry about. My infusion was iron as it was down to 10. My haematologist decided I needed the bone marrow biopsy to find out what's going on. It's strange as I am feeling well and still being active, walking at least 7 miles every day.
Different drs will do it different ways. When drs suspected I had it, they first did a bone marrow biopsy right there in drs office. I was told to pull my pants, underwear down all the way and lay on my belly on the exam table. The rubbed a small bit of numbing cream(about size of a quarter on my hip. I did cry as the needle went in as it was painful. Not trying to paint a bad idea of what youll go through, but they had to go inside my hip bone w needle to extract marrow. Took about 30 minutes. No anesthesia or nothing... they then took me to another exam room and pulled 2 pints of blood off of me.. it was a bad day for me. My hip was sore for 3 days. I wish they would have sedated me, but they didnt. Prayerfully yours will go smoother.
I am so sorry to hear of the ordeal you went through. The nurse I had was amazing. She explained step by step what she was going to do and put me at ease. When the local anaesthetic didn't work she wouldn't proceed as she didn't want me to feel any pain. I just hope when I go back for another try that the anaesthetic works and I can get it out of the way. I wish you good health and thank you for your reply.
I wish you the best next time, Lilbert 🌼
I had a twilight aesthetic which worked well for me. I can only recall some pushing on my hip but no pain. There was nothing to be anxious about.
I hope all runs smoothly this next time 😊
hi when I had my BMB I had gas and air when the procedure was being done, it was uncomfortable but not painful. I was away with fairies when the drill was pushed in to my hip and just sore but not in pain afterwards I was sore when the gas had worn off and I was back to normal. The nurse’s that did it were great.
I was on Peg then hydroxy but they didn’t seem to work to well as my counts were till not down. I am now on Ruxilinotib and my results are very good and I am currently quite stable. I have PV.
Good luck when you next go for a BMB I’d have gas and aid if I was you.
Thank you for your reply and I'm pleased your experience wasn't too bad. I wish you well.
Hi Bongo
I ve just started on Rux ( been on Hu for 15 years but skin probs - tried interferon for 3 months but made me really ill - bone pain fatigue dizziness etc)
Just wondered if you have had any side effects with Rux? Thanks Louise
Hi Louise
I haven’t really had any side effects I still get pain in my hips but I’ve had that ages, I did have an issue with low iron (ferritin) but that has now resolved it’s self and I was breathless for a couple of weeks whilst I had that but now not too bad . It seems to suit me and my bloods resjj I’m lots are very good . I have regular check ups and have a great Haemo team at The LRI in Leicester. I do lather up with sun cream spf50 and wear a hat too. As with Hydroxy there are possible side effects with sun exposure. I have also put a little weight on but that could be down to other issues I have with my hormones that is unrelated to PV.
Hello Lilbert, I m Louise70, had PV for 15 years. I had a bmb about 10 years ago at Guys and St Thomas’s in London.
I had a super young doctor who told me he was going to use Lidocane - and an awful lot of it. Sadly I didn’t ask how much.
The procedure was fine.
I wonder what the anaesthetic was that was used - and if every hospital has different procedures? Louisec
Good question; I had a local anaesthetic and gas and air and it was excruciating. They said they wouldn't give me a general - probably because they couldn't process as many patients. Perhaps I had pain because of my back injuries. So they probably do vary in both medications and procedures.
Thank you for your reply. Best wishes to you
Hello, thank you for your reply. I'm hoping when they try again that the local anaesthetic will work. Best wishes to you.
Sorry to hear that you had to delay the BMB. There are some people who are resistant to local anesthesia. I have experienced this with some local anesthetics. What I have found is that I experience a delayed response. It take twice as long, at least with some local anesthetics. There are other options if you are resistant that you can discuss with your care team.
WIshing you success moving forward.
Thank you Hunter for your response. I wish you well.
Alot of Drs don't think BMB is necessary if you're jak2+.
Consider pushing the Doc on whether this absolutely necessary.
Good Luck.
I will ask if it is necessary if I have problems next time. Thank you for your reply and best wishes to you
I couldn’t agree more James and platelets at 500 is really not that high. An infection or a cold can push them up that much. I would want to wait a month, have another blood test and see if the platelets are still elevated. I had my bmb in the doctors office with a local anaesthetic and it was very painful. If it isn’t absolutely necessary, I would refuse another bmb.
Thankyou Mardigras for your reply. I have a blood test due before the BMB so I think if my platelets are still around 500 or have gone down again then I will ask if it's necessary to go through the procedure. It's a problem because in the last 10months since being diagnosed with ET, I have had three different heamstologists and they never seem to agree with some another. Wishing you well.
I was told to have a BNB when I was first told I had ET. I said I didnt want it and my wishes have been granted so far. I was diagnosed 4 years ago and take hydroxycarbamide as had high platelets but they have come down now. Just say NO !!!
Thank you for your reply. I am booked in again in a couple of weeks for the BMB. If the local anaesthetic fails this time, I will decide not to try again. I am not feeling ill and the Hydroxy bought down my platelets from 1400 to 475. They crept up another 100 on my last blood test but I wasn't that worried. Best wishes to you. I hope you continue to keep well.
Try again Lilbert, I’m sure you will be fine. I had a BMB some years ago with local anaesthetic, no sedation although most have that done too. I am in Sydney and they do them in Hospital here under very controlled environment in day surgery.
I am sure the local will work next time for you.
Greetings and best wishes from Australia x
Thank you for your reply. Pleased that you had no problems with your BMP. I'm hoping mine goes well next time.
when I had first BMB ..given local anaesthetic and all fine, but second one, she tried after a few minutes, but still painful, however after giving me a few more minutes, the anaesthetic started to work…it seems to take longer to have the right effect in some people.
Thank you for your reply. She did wait longer but still wasn't numb. I'm hoping next time it will be OK. I wish you well
Hi Lilbert,
The difficulty with BM biopsies is that the local anaesthetic only works on the skin and tissue above the bone where the Dr will take the sample.
Some people say they never experience any pain but others like you and me do.
I could not have a BM biopsy without gas and air. The gas makes me feel Iike I've drunk lots and lots of champagne! And so although I can sort of feel the sample being taken, I don't care!
So my advice would be to tell the health team that you must have gas, and do this in advance of the day of your appointment, and then they have time to get some ready for you.
Otherwise, they may make excuses.
The effect of the gas wears off extremely quickly . Please be sure that when using it, the nurse starts the process of administering it before the sampling process begins. You need to practice breathing with the gas for a few moments before the Dr starts drilling.
I hope this helps.
Best Wishes
Thank you for the advise. I will speak to the nurse to ask if this would be possible. Best wishes to you.
Hello, I had a bone marrow biopsy and aspiration in 2022. I was told to take lorazepam as well. The nurse gave a local anesthetic to the area, but it did hurt when she took the bone marrow out. It didn't prolong, it was just that moment, thankfully. My platelets were in the upper 900's. The test showed the beginning of myelefibrosis, but with Essential Thrombocythemia it is the natural progression. I'm taking hydroxyurea and my platelets are down from 1 million to 403,000. My oncologist is pleased. I take 500mg Tuesday, Thursday, Saturday and Sunday. Monday, Wednesday and Friday I take 1,000 mgs. All my other bloods are in the good range, so I go see my once very 4 months. I hope you have abetter ourcome the next time.
Thank you for your reply,. I am taking the same amount of hydroxycarbamide as you and in the last 10 months my platelets reduced from 1400s to 400s but last blood test they were in the 500s. Personally I am not too bothered about this small rise. I hope you continue to keep well.
I had a biopsy early on in my treatment (about 2012), two or three years after diagnosis, and I was told it would be useful in terms of data on my blood, that is, more info than a blood test. In fact, I don't think it worked. There was some problem but they let it drop as the procedure was not critical to deciding on treatment. I had another biopsy in 2023 because my doctor was worried about the generally low blood counts and possibility that myelofibrosis had started. I'm glad to say they didn't find any problem. In both cases, I had anaesthetic. It didn't hurt but I felt uncomfortable.
Bone marrow biopsy done
Bone Marrow Biopsy Didn't Happen
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