update on Exon12 result

[Peetzil]

Hi folks, wee update…just received my Exon12 result today which is negative as well as my JAK2 which was repeated by haematology also negative. Awaiting appointment on 9th September for face to face review with consultant. Don’t know what my latest FBC or EPO results were, I will find out at the appointment. I feel so frustrated, if my HCT & Hb are stil high I don’t know how they could discharge me with clear conscience, but somehow I feel that might be the plan. Obviously I don’t want a bone marrow biopsy, but perhaps it would give me a definitive answer to what’s going on. Would love to know everyone’s thoughts? Should I request a BMB? I have so many others tests, lung x ray, non smoker, no alcohol, last EPO normal, liver & kidney scans normal. The haematology secretary was saying to me ‘maybe that’s just normal for you’ yeah well I will discuss that with consultant in September 🙄 jeez, sorry guys I’m ranting a wee bit now lol at least it’s Friday eh!

[Dolman]

Hi as you know I was discharged with high hbc and have to go for bloods every 3 months . If it goes over a certain level which I believe is 51% in my case then I get referred back . Very frustrating as I have had more or less same tests as you and they can’t find the cause

[Dolman in reply to Dolman]

Also I had a bmb that came back normal

[Peetzil in reply to Dolman]

It so strange isn’t it! I just want to get to the bottom of it & worry about the risk from increased blood viscosity. I have MS & Epilepsy too & read that high haematocrit lowers cerebral blood circulation last thing my brain needs is less blood😬also note some small vessel changes on my MRI & wonder if these two are related 🤔I’m sure my Neurologist would say no but it seems logical to me. Anyway I hope you find some answers too, at least they are monitoring I guess!Lynn

[Dolman in reply to Peetzil]

Hi Lyne , hopefully you will get some answers soon and so will I . Mine has been going on for 3 years now and basically I think they are just waiting for them to go a little higher before they do something and maybe the same for you . Hopefully we will both get some answers soon . Take care Shaun

[Peetzil in reply to Dolman]

Yep, that’s 5 years for me now & think you’re right!

[hunter5582]

I would ask specifically about triple-negative PV. Also the very small number of people with PV who have the CALR mutation. You may well need a BMB to get an answer.

There is information out there about triple-negative MPNs is you want to look. here is a good training video you may find of interest.

youtube.com/watch?v=Oc8ujrS...(Not working as expected?)

Hope you get answers

[Peetzil in reply to hunter5582]

Thankyou so much Hunter you are always so generous with your knowledge. I appreciate you taking the time to reply. I’ve downloaded a few articles & will do more research ahead of my appointment!Lynn