Help just been seen by consultant

[Jbut]

hello all.

Had Et for 12 years

Interferon for 11 years

Asprin. The last 12 months i have been off interferon for 1 year platlets normal range. Today consultant said he wanted to check jk2 again 12 years ago was positive ?

Wanting to do scan of my spleen

Asked questions about my bone marrow biopsy from 12 years ago, told him in come back as sccared.

Connsultant having problems finding information from 12 years ago ?

Said maybe wrong , not essential trombocemia ?

Really confused at the moment, would be great if all the tests were wrong all them years ago. But shocked as what has just been said.

[Aneliv9]

why does he want you to check jack2? Is there any problem? Did you also say that doctor told you your bone marrow was with myelofibrosis?

[Jbut in reply to Aneliv9]

I really dont know, why checking jak 2, was pos years ago.i also had a bone marrow biopsy 11 years ago, and what i can remember the consultant said had scaring ? I think because my bloods have been stable for a while , said might not be ET ? Am with a different consultant now, Before ET i had Tia's bleed in bowl. Am really confussed , today the doctor said they will arrange a scan .

I have had a few numb feeling in my toes ? That all that has been different the last few weeks.

[Aneliv9 in reply to Jbut]

I think because my bloods have been stable for a while , said might not be ET ?

That does not make sense to me... What do you mean?

[ainslie in reply to Jbut]

your counts maybe stable because after a long time on interferon you are currently maybe in some sort of remission but you still have ET. No harm in checking spleen and after 11 years another BMB. If you are not satisfied you could try to get a second opinion from a MPN expert

[mhos61]

Do you have an assigned Clinical Nurse Specialist (CNS)? Most of us have. If so, I would give her a ring and explain that you have been left confused and scared after your recent consultation.

Why were you taken off interferon a year ago? Is it possible your haematologist is just checking the Jak2 allele percentage in relation to this? Understandably, it would be vital for your haematologist to have all the tests from 12 years ago to make any reasonable comparisons. Are all your blood counts good?

The fact is, you have been left confused and scared, and that’s not acceptable. You need a full explanation!

[hunter5582]

Rechecking the JAK2 mutant allele burden is becoming part of MPN monitoring by some docs these days. After 11 years of interferon, it is possible that your allele burden has reduced. It certainly makes sense to recheck this to see what your status is. It is not necessarily a bad thing.

Periodically checking on spleen size is also a good idea. This is pretty routine.

The new numbness in your toes should be followed up on if it persists, It could be any of a number of things. DO be sure to let your care team know.

I would agree with calling back to your hematology office to let them know you are concerned and not sure you understand what your status is.

All the best.

[Pustina]

Hello Jbut, had message that I might help with advice re. interferon? I am surprised at that as I have only recently been diagnosed and am not on interferon. Best wishes to you.

[Jbut in reply to Pustina]

sorry for late reply.

At the time when diagonsed i was high risk, Tia's and had a bleed in bowl.

That was 11 years ago, at present am on just asprin, because bloods, platlets normal range.

I hope you have no syptoms ,and thats why they have not started interferon.

[Jbut]

sorry with late reply. My bloods Hb 139 wbc 9.28 Neut 2.9 Plt 299

With platelets being in normal range for a while there checking me for bone marrow transformation to myelofibrosis.

I hope this is ruled out, will also have ultrasound,repeat JAK 2.