BMB Update: Hi folks! I first wrote on here about... - MPN Voice

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BMB Update

Hi folks! I first wrote on here about a month ago and was overwhelmed with all the replies you good people sent - thank you so much. One or two asked me to update on the bone marrow biopsy that I was going to have, so here I am again. I don't get the actual results until the end of this month, but I can tell you about the experience - if you are about to have one, perhaps you should look away now! I'm afraid it didn't go well, although I am assured that my experience was NOT typical. I was given a local anaesthetic - not nice, but nothing unexpected. The doctor doing the procedure seemed to be having awful difficulty getting what he needed and was grinding away for what seemed like a long time. He was unsuccessful on the first attempt so had to try in another place, applying a lot of pressure. Half way through he asked me if I had ever had any problems with my bones - well, yes, I have osteoporosis and have been taking medication for it for years - was that not on my notes?!! I don't know if that would have made any difference to his approach, but it didn't inspire confidence! I knew the procedure was going to be painful, so I was prepared for that. What I wasn't expecting was the extreme pain in my back and hip that followed for the next few days - completely debilitating and easily on a par with breaking a bone - and the fact that two and a half weeks later I am still limping and unable to walk any distance. I have rung the haemo nurse who recommended paracetamol and also gave me a prescription for codeine phosphate, which I take at night (and gives me a wonderful night's sleep!) and she said that he probably 'caught a nerve', which could take several weeks to heal. I'm finding the pain quite exhausting, as if I needed any more fatigue! Please tell me that it's not always like this; I dread the thought of ever having to have another one! (Sorry for the long vent.)

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Sorry that you had such a bad time of it with the BMB. It sounds awful. I do hope things improve for you soon and the pain goes away (Thank goodness for codeine!!).

I had a much better experience with BMB, it was approximately the same level of discomfort as getting a tooth filled at the dentist.... not exactly enjoyable, but manageable. I was fortunate in that there wasn't a problem getting the sample, and the person doing the biopsy was highly experienced and also made it very interesting by explaining what was happening in a full and entertaining way. (He was a bit of a boffin, and I guess I am a bit too!).

All the Best,

Peter

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Thanks Peter. Your BMB guy sounds great - send him over here, would you! 😀

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Bless you x crap aint it Wishing for good results for you xx

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It is indeed, Abbamania! Thanks for the wishes. X

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Not a good post for someone about to have a BMB

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I’ve had two and really they were OK. Not my leisure activity of choice (!) but eminently do-able. Just take it easy afterwards - and take care not to bash the needle site (now that does hurt!!). Good luck!

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Lol thank you... that made me laugh...

take care

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Thanks 😊

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Sorry. You were warned! And I have been told that it's not typical.

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Dear Blaablaablaa!

I’m so sorry for this experience. This doctor was not right on. Since I was terrified going in, I took a light sedative and the doctor worked very carefully. He was done in 5-7 minutes. With breathing exercises and him coaching me through, it was much easier than expected. Walking caused a bit of discomfort for a few days, but slight pain, sometimes more in that area was about a month on touch. If I push on it, I feel it today, after two years. But it doesn’t at all cause any problems in my life. I got my results in about 9 days.

I pray that you will have clarity about your blood so that you can have a proper treatment.

Regarding osteoporosis, what most doctors don’t do, is to make sure you have enough vit. D else you can’t take up the calcium, which your bones need!!! Enough vitamin D is between 60 and 80. Less is a deficit and more is too much, regardless of what the “norm” is. The norm is the average in your country and that is deficient! I take 40,000 IU’s weekly to keep my D up. I was deficient for 20 years. Actually, since I started using sunscreen.

To help with the Nerv situation, try Vitamin B complex supplements. The best are natural vitamins, since too much synthetic Vit B6 (for example) can cause nerve damage!

I wish you better times and thank you for writing us. You can do so any time. 🙂 Anag

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Thanks Anag, I'm glad yours didn't cause lasting problems. And yes, I am prescribed Calcium and Vit D as well as one monthly pill of Ibandronic Acid from my GP for the old bones. 😊

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🙂

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Soo sorry to hear of your experience. If you have osteoporosis are you sure that you haven't got a crack in a bone?

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Exactly what I was thinking

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Bridie and Jilly, the answer to that is no, I'm not sure I haven't cracked a bone, but I doubt anything could be done about it and anyway it is improving - slightly and slowly, so I guess it is just a matter of waiting. It is on my list of questions for when I go back though.

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Sounds quite similar to the experience I had. I took paracetamol and codeine beforehand as I didn't think local anaesthetic would be enough but the young lady Dr spent so long trying to do it before giving up and calling someone else to finish it that all the pain relief had worn off. I could hardly walk for days and in pain for weeks and still twinges after months. I think bisphosphonates probably do make it more difficult. I was due to start taking them and my gp told me to wait until after the bmb. I'm on them now and I dare say I will need another bmb at some point. Gonna drug myself up to the eyeballs next time.

Carol

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Carol , oh dear, sorry to hear that. I was told at the time - and every time I've spoken to anyone involved since - that mine was a "difficult" one, though it hasn't really been explained why. Good luck with your next BMB if you need one.

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Oh dear, I am sorry you're having such pain and bad experience from it. When I had mine in May, a haematologist did it for me and I honestly did not feel a thing under local anaesthetic, she was so skillful, whole procedure was not more than 20 minutes. This makes me think we really need a haematologist or extremely skillful dr to do it. I was lucky then. Hope you feel better soon.

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Thanks Lifam, great to hear that yours was good. I'm getting there.

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I was chatting with my Hem about this last time. He said 9 times out of 10 he was viewed as a hero! The patient thought procedure much less painful than they feared.

Occasionally, and he wasn’t quite sure why, the procedure is painful.

My experience of two BMBs is, whilst not a barrel of laughs, not something to worry about

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That's good to hear, Paul. Glad you are able to redress the balance!

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I’m really sorry that happened to you. What an awful experience. I’m having my second Bmb this Friday. My first one 11 years ago was done in the doctor’s office. It was only about 10 minutes and I didn’t have any problems afterwards. The one on Friday I’m doing in the hospital under IV sedation. They told me I’ll be there all day and someone has to drive me home. I’m more nervous about this one because my new hematologist thinks I may have progressed to myelofibrosis. What was your diagnosis? I really hope you feel better soon. It sounds like you’ve really gone through a lot, and unnecessarily. Sending hugs.

Cindy

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Sorry to hear that, Cindy. So far, my diagnosis has just been ET. I go for the results of the BMB on 26th September, just over two weeks away.

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I meant to add, good luck with yours!

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Thanks

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My first biopsy experience was similar, but not nearly as bad as yours. It was quite painful during the process, they had to do it twice, and I could hardly bear weight on it for the first couple days. Beyond that it was sore for a few weeks. And they only managed a very small sample which I believe is why they were unable to diagnose me at the time. That time I had light sedation, which didn’t seem to help.

My second biopsy was so much better! Much less pain, much easier recovery. I was amazed at the difference! And that one was done without sedation. Here’s hoping that if you ever need to repeat it, you have a much better experience!

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Thanks Chelsea, very interesting! I'm just hoping he got enough of a sample to be of use. How soon after the first did you have the other one?

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They were a couple years apart. I went without a diagnosis all that time and when I switched doctors they repeated it. My first core sample was less than a quarter inch in length. My second one was still noted as short but was about three times the size. I’m triple negative so it made the diagnosis harder but we got there eventually!

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Oh dear! what an ordeal. All done and dusted. I do hope I don’t have to have one.

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Hi. Mine was painful - second attempt worse than the first. Plus pain for two weeks but did then recover. Hope results are good news. Jacquie

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