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