Curiosity may kill the cat but I want to know.

[Devrob71]

When I had my BMB done it showed mild fibrosis. What exactly does that mean to one with ET and does anyone else have this?

[Cecilie]

Hi, my BMB showed the same thing. It left me kind of confused, as it changed my diagnosis from ET to "MPN unclassified" . I still don't feel that I understand properly what that means although the doctors have assured me that it makes no difference to the treatment. Hopefully someone here will know the answer.

Cecilie

[Devrob71 in reply to Cecilie]

I agree! I have plans to seek out another doctor's opinion very soon. I like the one I'm at now but after 3 years I'm beginning to just feel like I'm a number. 😞

[Janll]

Dear Deveob71, I do believe it takes a real professional to decipher blood test result but more importantly BMB. If your professional doesn’t know then ask for another opinion. I have been diagnosed with Myelofibrosis since my BMB. This doesn’t mean you have this too, but the biopsy does show the most detail of what’s going on. Insist on knowing more.

Jan

[ChelseaF]

I have mild fibrosis also. I am triple negative and my biopsy was inconclusive. My doctor is working on a presumed ET diagnosis and says the treatment wouldn’t change either way. It’s frustrating to be in limbo. I’ve seen three hematologists, one of them a specialist. Still considering a fourth opinion down the road. It drives me bonkers not knowing for sure what is going on.

[Devrob71 in reply to ChelseaF]

My goodness! I do hope you get better results and a diagnosis this next go around. Best wishes 🌺😊

[Sarahjane100 in reply to ChelseaF]

Hello. I'm just about to see my heamotoligist for the 2nd time next week, and hoping to get a diagnosis this time. I have a platelet count of 591 and rising. No symptoms really, just referred to heamotoligist by doctor. I'm jak2 negative answer waiting for results of others. I'm pretty surel I have ET, but he wants to do a bone marrow biopsy to be sure. I hate this limbo state, feel like I'm going crazy, just waiting! Now I keep thinking every headache is a stroke and an aching heavy arm is a heart attack! Can I ask what your platelet level was when diagnosed, and is it normal to feel so exhausted all the time?! Sarah.

[ChelseaF in reply to Sarahjane100]

I’m not sure if you meant to reply to me with this but my current count is around 800. I am exhausted most of the time and have lots of symptoms but still actually not officially diagnosed.

[Sarahjane100 in reply to ChelseaF]

Hello again. Thanx for responding to my question. I had not heard of MPN's, ET. PVi or MF before last December. Now, I'm nearly an expert! I'm still not clear if I have cancer or just a blood disorder. My heamotoligist is not very informative, and very vague about what is wrong with me. Can I ask, what symptoms you have? I'm just exhausted and have very blurry vision. And a thumping in my chest sometimes, kind of palpitations. Sarah.

[Devrob71 in reply to Sarahjane100]

My platelet count was around 1045 and I was JAK2+ when I was diagnosed.

[jane13]

as i understand it, think about what a normal BMB sample looks like: sort of semi-fluid soup? In full fibrosis your don't get much if any of that "soup" because what there is left of it has migrated to the extreme ends of your bones and all that's left is dried up remains (that's what I have with myelofibrosis). You sound to have a nearly normal semi-fluid sample with just a few signs that it's drying up. If it dries up (full fibrosis) you have trouble producing all the constituent blood cells - don't think it makes much difference at that stage whether you started off with PV or ET. Think most people here will have mild fibrosis if not worse.

[Devrob71 in reply to jane13]

Thank you for the information. 🌺😊

[Norman45]

Hi Devrob,

I was Hospital diagnosed with ET in 2011 although I suspect I had had it for at least four years before. Had a bone marrow biopsy in 2016 which showed significant scarring.

My consultant explained they grade the scarring from one to three with one being the lowest. Sounds like you are at stage one but you could ask your consultant.

Because I was at stage three I went onto Ruxolitinib straight away which seems to have stabilised the condition somewhat.

Fingers crossed it’ll keep me on the straight and narrow for a few more years.

Good luck

Norman

[Devrob71 in reply to Norman45]

Thank you for the information. Best wishes 🌺😊