Second experience of a bone marrow trephine biop... - MPN Voice

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Second experience of a bone marrow trephine biopsy much better than first

Rachelthepotter profile image
9 Replies

I’ve just got back home after having my second trephine bmb - thats the kind where they take a core of bone as well as a sample of marrow. The first one that I had was nearly two years ago at my local hospital, and it lead to my MPN - myelofibrosis Jak2 positive diagnosis. It was extremely painful. Not for more than a few minutes, , but there were two bouts of very intense pain that made me swear. I’d had a local anaesthetic intended to numb the bone surface but that was all.

This second bmb at the Churchill hospital in Oxford hardly hurt at all. I had been offered a sedative tablet ( lorezapam 1 mg) to take an hour or so before the procedure, and given the option to use entonox - gas and air - to inhale ( I’d used it during childbirth , so I was familiar with it) if I wanted to during the procedure itself. Which I did. The very friendly, competent , experienced nurse chatted to me throughout the procedure, having first asked me what I might like to talk about, and whether I’d prefer music. . She made sure that I knew how to inhale the entonox, and that I stayed awake and in touch. The registrar meanwhile did the trephine biopsy. There was a few moments of low level pain, during which the nurse held my hand, and then it was over. The registrar showed me the material he’d obtained, and I’ll come back in a few weeks for the results.

The idea is to see how the disease is progressing, given that the last bloods showed that the allele burden was now very low. I’ll be interested to see if the fibrosis level has changed. I’ve been on rux 10 mg x 3 per day, plus epo ( now in a formulation that comes as a once every 4 weeks injection rather than weekly) for 18 months now.

So, a mild pre med in the form of 1 mg of lorexapam, access to self administered inhaled entonox , and a competent and friendly team made all the difference.

I have an appointment with Professor Mead to discuss the results on 18 th Dec. I hope its a good Christmas present.

Rachel

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Rachelthepotter
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9 Replies
Poppy6060 profile image
Poppy6060

Hi Rachel I am glad it went well for you I have not had one and must admit I am frightened to have one but having such a good team seems to make such a difference I hope you get good results in December keep well and hope you can rest up for few days best wishes Poppy

Rachelthepotter profile image
Rachelthepotter in reply to Poppy6060

Thanks, Poppy. I’m lying on a sofa looking at my garden, feeling entitled to have a morning off!

Stevesmum42 profile image
Stevesmum42

Hi Rachel. Great to hear you had a better experience this time, Like the idea of a mild sedative, that would make you more relaxed.

I had a BMB a couple of weeks ago , my fifth, I have to say it was much less uncomfortable than others, the doc who performed it was very understanding and asked several times if I was ok. It's something that you go into with trepidation so great when it's not too bad. I told him I would give him maximum stars on Tripadvisor.!

I hope you results are good when they come back.

Regards Sandy.

Rachelthepotter profile image
Rachelthepotter in reply to Stevesmum42

Thanks, Sandy. The only downside of having the lorezapam first was that I was warned that I couldn’t drive home, so my husband had to drive me. Not a real difficulty, as he comes to my appointments ( reluctantly) anyway.

socrates_8 profile image
socrates_8

Hey Rachel... :-)

Very best wishes for your coming results...

I also used the gas, (on its own), on both previous BMBs, and found it a minor inconvenience more than anything else.

So glad you 2nd BMB was so much more pleasant, and I also highly recommend this approach as a far less painful BMB experience.

Best

Steve

(Sydney)

Rachelthepotter profile image
Rachelthepotter in reply to socrates_8

Hi. I’d now consider using just the entonox if need another bmb: don’t know why more hospitals don’t use it. All h best

Rachel

stillkicking profile image
stillkicking

Hi Rachel,

So pleased that you had a better experience this time around. It certainly helps to have a reassuring and competent person doing the procedure, and good that sedation was on offer. It is wonderful how much of a profound comfort it can be to have someone hold your hand at a time like that.

I do hope that the results are encouraging.

Best Wishes,

Peter

Rachelthepotter profile image
Rachelthepotter in reply to stillkicking

Hi Peter. Sedation often means a full on intravenous anaethetic type experience, wih unconsciousness and all the risks that go with that.

Gas and ar/ entonox/ nitrous oxde isn’t like that - you just inhale the mix , and it doesn’t knock you out. But it does reduce the pain. Much safer.

How’s the spring/summer comng on n NZ My sister in Winnipeg has just texted me that they’ve had their first snowfall. Here in Surrey Autumn burns gently on. Its been a grand year for leaf colour.

All th best

Rachel

stillkicking profile image
stillkicking

Hi Rachel,

It's been strangely warm and wet for the last 2 days (we got into the early 20s) as we received some excess heat from Australia. Later today the wind changes direction and will bring a sample of weather from the Antarctic, with snow forecast to 300 mtrs to the North of us. Quite entertaining really and no need to travel as we import our weather from overseas! :-)

I'm doing some crystalline glazing at the moment, and got two nice pots out of the kiln this morning. I've foolishly said yes to putting some work in a group exhibition, and deadline is this coming Monday for handing in work. Still one more good one needed so firing more tonight. Am pretty tired, but getting there!

All the best,

Peter

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