I’ve been given a date for the BMB with a follow up phone call two weeks later, but as I won’t have seen my haematologist before then, I was wondering if anyone could give me some pointers of what questions I should have ready.
As an aside - is feeling really cold a side effect of ET? I’ve recently lost almost two stones in weight and I’m not sure if this is a knock on effect of this, or if it’s something a bit more concerning. I feel so cold in my core - hands and feet are fine.
Hi there. I wasn’t sure whether you wanted questions before the BMB or for the follow up call.
To the first, there’s not much you can ask! A BMB is really OK. Not my first choice of leisure activity but eminently manageable and an incredibly important insight into the state of your disease and as a baseline for future evaluation.
With regards to the second, I’m assuming that will be with your haematologist (I was a bit confused by your question). MPN Voice website is a really useful place to start to help you think about the things you are curious / concerned about and put together questions about your BMB results, diagnosis / prognosis, next steps and ET in general.
Feeling cold and unintentional weight loss are not usual ET symptoms. It’s possible the two - weight loss and feeling cold - are linked. Cold can go with low iron levels but you’d expect your extremities to be affected. Definitely something you should raise with your consultant. If it’s really bothering you and the BMB is a way off you can always drop your consultant or CNS (if the department has one) an e-mail. Wishing you all the best.
Hi, I have raynaud’s syndrome ,which affects circulation to the hands and or feet. Had this for a long time, never badly though. I have been having more of an issue the last year, have lost 10kg since starting Hydroxycarbamide. Think it could be having less body fat, but also am menopausal recently too. I get cold hands. If your fingers go white with lack of blood flow, it could be Raynaud’s. Worth checking out with your gp, not diagnosing you, cos could be something else x
I was a nervous wreck about the BMB but in hindsight it was completely okay. I had mild sedation for pain and so glad I did. They had to take a second sample because the first didn’t get enough. Instead of what would have been a 15 minute procedure turned into 45. This is something you can’t predict until you’re in there and how tough your bones are, and I couldn’t have imagined not having the pain medicine via sedation. I was awake and talking the whole time but thankfully did not feel the jabs into my bone. Worst part was trying to sleep comfortably for two nights following. The incision is the size of a pencil tip. And now that’s it done, I know I can do it again down the road if I had to…if that speaks to the experience it wasn’t traumatic by any means. Also my nurses played music and made me comfortable best they could and I know that helped me a lot. Good luck and it’s better to have it done and know for certainty rather than put it off like I did for a year.
Thanks Pumpkinmunchkin - it’s all so new and I suppose until you experience it, a bit scary. I’ve had a hip replaced, so I’ve only got one side they can tackle - hope they get enough from the good side 😉
Hi Megabyte, , just browsing the posts in a quiet moment and saw yours. Wanted to wish you luck with your bmb , not a great way to spend half an hour but invaluable in terms of what it can reveal. I'm sure you'll be ok with it most folk find them quite tolerable though obviously some discomfort in your lower back for a day or two.
On feeling cold I would put that down to your weight loss. You've done really well losing 2 stone but it's robbed away your layer of insulation. I had dramatic weight loss after my SCT and couldn't get warm so wore a thick wooly jumper. I still feel the cold as I've little meat on my bones.
Regards - Chris
Thanks for the reassurance - I’ve always been built for comfort rather than speed so losing the 2 stone seems to be making an impact. Wish the BMB was over and done with - and the results available. I’ve been waiting on a diagnosis since january - it’s a long time to wait.
Yes it is far too long a time to wait , , it was bad enough for me at a fortnight which will equate to your phone call 2 weeks after your bmb which I'm a tad surprised isn't face to face. I lost a stone worrying because I'd got part of the story in that it was one of two diagnoses but the bmb would confirm which I would be facing. I think any questions you have might flow out of your bmb result depending on how much information you're given then.
Hope it goes well - Chris
Yes, it will be almost 6 months since my gp first told me there was a problem. This “problem” was flagged up initially with me trying to donate blood - as I do (or did) every 4 months - in December. The first lot of blood was wrongly labelled so wasn’t processed, the second lot went missing, was found, but then the machine to carry out the gene mutation analysis was broken only getting a result 3 weeks ago - and it was negative! Hence the BMB. I’ve been compiling questions - with a lot of help from this forum - so I hope a face to face will be soon after the procedure, as the list is now about as long as my arm. I just feel I’m in limbo.
I’ve had 2 BMBs, one in 2008 in the doctor’s office. I was 52 years old and surprisingly, it wasn’t bad at all. It only lasted a few minutes with no after effects. The second one was in 2019. It was done in a hospital with light sedation. Maybe because I was older and my bones were harder, it was much worse than the first one. I was achy for a couple of days afterwards. My first BMB I got diagnosed with Et Jak. 2 and my second one showed I had progressed to MF intermediate 1. To sum it, either way both were bearable. I’m sure you’ll do fine. Good luck.
Date for SCT
Update after BMB
BMB score 
