How long did you wait for jak2 calr mpl results - MPN Voice

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How long did you wait for jak2 calr mpl results

Notdiagnosed profile image
7 Replies

I have today had the mutations tests done. I think there was 6 tubes in all ao at least they are being thorough.

I was told it takes 8 weeks for results. Is that how long you waited??

I also am having a scan of my spleen but have to wait for a phone call for that appointment.

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Notdiagnosed profile image
Notdiagnosed
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7 Replies
Orangeboykitty profile image
Orangeboykitty

I'm in Israel and it only took 2 weeks for results to come back. I'm JAK2+. Maybe it takes longer for other mutations.

Kari1961 profile image
Kari1961

Hi Notdiagnosed I'm in the UK, and it took 4 weeks from bloods to diagnosis - I'm Jak2+ PV. Mine happened over the Christmas/New Year period, which may have delayed it a bit.

Notdiagnosed profile image
Notdiagnosed in reply toKari1961

Hi. My husband says she said 6 weeks odd. And we have bank holidays too in my period. I didn't think they took that long but looking on here properly they do for most. 6 to 8 weeks. Thanks for replies. Just a waiting game now.

And sorry for your diagnosis.

BlastedKnees profile image
BlastedKnees

Seems to vary a lot by country. I had two tests for JAK2. The first one was a blood test which came back positive in 5 days. The second was a test from the BMB and that came back next day.

For the full genetic panel (NextGen sequencing) I received the results 3 weeks after the BMB. Verified the JAK2 but nothing else except some oddities that still are unknown for their MPN relevance.

Wyebird profile image
Wyebird

A spleen scan seems to be routine. I was told 6 week wait for my mutation test I know it was a little shorter. Maybe 41/2 to 5 weeks x

Mujer profile image
Mujer

After my bone marrow biopsy I queried my gene mutation and was advised that because of my age and the cost involved my treatment for PMF wouldn’t be altered no matter what the gene mutation so none was done. I do know it however because of a previous biopsy abroad.

Notdiagnosed profile image
Notdiagnosed

Hi again. I have been impatient and rang and asked if any bloods are back. jak2 is and negative. He said that pretty much rules out any myeloproliferative diseases. I still have to wait for my calr etc but looking good up to yet. My appointment is 29th June so maybe have to wait until then but itz good I'm jak2 negative and as he stated it is pretty much ruled out have et or any others. Just dont know why my platelets are always high.

If they all come back negative and my platelets are still high what then ??? Inflammation ruled out. My infection thing was ok. Will they just discharge back to my gp maybe and we are back to square one!

I know it pretty much rules out polycythemia but I don't think it rules out et does it. ?? Only 50 / 50 isn't it?? He definitely said anyone jak2 negative is unlikely to have any myeloproliferative disease.?

He was just the haematology nurse I think. He's now made me lose all confidence in this because it's only 50 odd per cent with et that have jak2. I wish I'd never rang tbh. Because guidelines say one thing and they state another. I honestly don't think they are particularly interested in et diagnoses . They say they are busy and I think they look at it as there are far worse cancers we have to deal with than this et.

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