After only finding out a week ago that I have ET, I had my first BMB yesterday. I'd like to thank everyone who advised me it wasn't so bad, as I went in calm. It really wasn't bad at all. A bit sore later on, but only like when you've had an injection in a muscle.
I go back at the end of October for results so my consultant can decide which medication is best. Its all been a bit of a whirlwind since I found out in July. So grateful for this site.
Well done! I too didn't think it was so bad. Luckily I was in a position of ignorance and hadn't heard all the horror stories that get around. Good luck with the results. Can I just ask though, how come you had a BMB after being diagnosed? I wasn't diagnosed until after the BMB results had come through. Best wishes, Alan.
The worst part of the BMB for me was when the doctor asked for a longer "needle thing" to get through the "padding" on my hips!! They gave me gas and air while I was having it so it wasn't so bad.
I was diagnosed before the BMB, I had confirmation afterwards and was also told I had no tumour markers in the test results and that I was JAK 2 negative. I was put on aspirin at first, for a couple of years, then 2 years ago I went on Hydroxy when my platelts went over 1100. My platelets are steady at the moment around 380.
Best wishes
Lizzie
X
Well done😊,I recommend saint johns wart to give you a happier time of your first months. Keep Calm And Carry On !!
Hi I was diagnosed with ET and was tested positive for Jak 2 a few weeks ago without a BMB, it does seem to depend on the blood results if they need confirmation they recommend a BMB I think if there's no doubt then it's straight on the drugs which is what happened to me. You have probably had the worst test so well done and good luck with whatever regime you are put on. The first few days were horrible for me but it was just the thought of having to take a chemotherapy drug I've had virtually no side effects. As you say this site is very helpful and I've booked to go to the seminar in London next month hoping to get some questions answered and meet other patients hoping it will help.
Same with me. I was diagnosed with blood work, but Doctor wanted to confirm with BMB the Jak 2 positive diagnosis. Still only on baby aspirin, going the end of the month to check numbers again to see if I need the Hydrox.
I had a BMB and a scan to confirm that I had ET after a blood test ordered by my GP. The consultant I saw thought I had ET as did my GP (this was 10 years ago). Aspirin for the first 6 months and close monitoring, then put onto Hydroxycarbamide. Have been on this drug for over 9 years now. A few years ago I was tested for JAK which came back negative. However, I am CALr positive.
As other people have said, it is the thought that it is a chemotherapy drug that is worrying but it is taken in quite small doses. Still, I'd rather take it than have a stroke or heart attack.
10 years down the line, I am reasonably okay. I do have days of sudden fatigue (usually when I have done too much) and I have altered my life style.
ANOTHER BmB
BMB Negative - so next steps?
Update after BMB
Update on BMB
