BMB score

[Skye333]

Hi I apologise if this is duplicated but my last post seems to have disappeared.

I have previously seen a post on here about a BMB score. I asked my nurse what mine might be but she hadn't heard of it so spoke to the haematologist and neither did he.

Does anyone know anything about this?

Janet x

[jane13]

Hi, have had several BMBs but never heard of a score? Genetic results usually. Only thing I can think of is the amount of aspirant they get out - which could relate to the level of fibrosis - or something like that?

[Skye333 in reply to jane13]

That's what I think too as I have only seen 1 post referring to it, just thought I'd ask. Thank you Jane

Janet x

[Norman45]

Hi Janet,

Apparently BMBs are scored out of three - one being the lowest level of scarring and three the highest. This is how my haematologist explained it to me after my BMB. Unfortunately my score was three with significant scarring and confirmed my ET had transformed into MF.

Now on Ruxolitinib which my consultant says has shown some evidence in trials of reducing scarring. I hope that happens in my case.

[Skye333 in reply to Norman45]

Hi Norman thank you, I thought I must have been dreaming I'd seen this. Can I ask which hospital you attend please because my Haematologist hasn't heard of it and I think we should be told what all the results of our BMBs are.

I hope Ruxilitinib helps you.

Janet x

[Norman45 in reply to Skye333]

Hi,

I attend the haematology oncology dept at Heartlands Hospital in east Birmingham. It's about twenty miles away from where I live but has a reputation as a centre of excellence for treating MPNs.

It is now pioneering stem cell transplants where you are given the transfusion one day and return home the next to be isolated in your own bedroom. Outreach nurses visit daily to monitor your condition and make certain you are on track.

It seems the luck of the draw where you live for the care you receive.

Do you live near the midlands?

[Skye333 in reply to Norman45]

Hi no such luck Norman, I'm in Halifax West Yorkshire hence the reason I'm going to see Professor Harrison on Tuesday then I'm hoping to be transferred to Leeds where there is a team of haematologists who specialise in MPNs. I attended the forum there and feel I would have confidence in them and their care.

Janet x

[Norman45 in reply to Skye333]

Good luck on Tuesday with the highly respected Prof. She seems a great choice of second opinion for so many MPNers.

The consultant who gave me my BMB results took them to her and next visit, six weeks later, I was on Ruxolitinib!

Good practice does seem patchy over the UK and it must make it more difficult for people to get the right care if they are under a non-specialist haematologist or just a GP as I've read in some cases.

[Skye333 in reply to Norman45]

Thank you Norman I will post on here when I've been. My GP didn't even remember I had MF so it doesn't inspire confidence in the system so we need to go where we will be looked after.

Janet x

[JediReject]

Hello Janet, , to be honest I've not heard of a bmb score but when I had Myelofibrosis it was scored using what is known as the International Prognostic Scoring System or IPSS . This is widely recognised as a tool to roughly predict survival dependent upon how ones symptoms over time develop. For instance I was told back in 2007 that according to my symptom burden at that time I would very likely need a Stem Cell Transplant within the next 5 years. As it happened it was about 9 so as I say it's a guide.

Though I'm sure for most cases it was fairly accurate but with the development of new drugs i guess it will need updating as new data becomes available. It may even become redundant if new drugs delay or even reverse fibrosis.

Take care -Chris

[Skye333]

Thank you Chris, as ever a mine of useful information. It makes sense now that what my haematologist said was very similar.

Janet x

[Cecilie]

Hi, I understand that they look for scarring in the bone marrow. I was told that I have stage one fibrosis, which means that there is some scarring but not enough to be diagnosed as MF. I found it a bit confusing, but I guess there is a lot of overlapping and changing of diagnosis as the MPN develops.

[Hidden]

Hi, I occasionally check this blog but have never posted. My background is that I was dx with PV over 6 years ago and shortly after that with ET when my platelet count went way up. At that time I was put on HU and remained on for 5 years at various amounts until I developed leg ulcer. No fun! I then had a BMB and which showed extensive scaring designated as 3/3. I live in the states and get my treatment from a university oncology center. Maybe different places use different ways to express the extent of scaring. I'm presently on Jakafi - a remarkable drug and doing very welI with no debilitating symptoms. Thanks to all, I really appreciate this blog - it's very informative and friendly.

[Skye333 in reply to Hidden]

Hi I'm so glad you are doing well on jakafi it does seem to be the best drug for a lot of people.

I was beginning to think that it might be the states that use that scoring system. I'm so glad you decided to reply to my post and clear that up for me.

I hope you continue to tolerate jakafi and you feel good whilst taking it.

Thank you again for replying.

Janet x