Is Myelodisplasia an MPN?

[skipperL]

After my BMB my consultant seems to have reclassified the name of what I have on the prescription for Hydroxy - I am Jak 2 positive as well. There seems to be a lot of confusion over what we all have, and an overlap between the various forms. Can anybody clarify this?

[Mazcd Partner MPNVoice]

Hi Skipper, no it is not a MPN. Maz

[skipperL in reply to Mazcd]

Thanks for replying Maz - I am quite surprised, as my Haemo seems to be treating me in the same way as everyone else -Hydroxy and aspirin - watching platelets, bloods, etc. He also said I don't have stage 2 fibrosis, by which I assume he meant that I had Stage 1. I am now very confused!

[Mazcd Partner MPNVoice in reply to skipperL]

you are very welcome, this might explain it a bit more for you

nhs.uk/Conditions/myelodysp...

[skipperL in reply to Mazcd]

Again another thank you. I was told I had an MPN until the BMB. However I shall keep reading MPN voice as a lot of the correspondence seems relevant and informative. It is a wonderful support system.

[skipperL in reply to Mazcd]

Hi Maz - I asked my Haemo today and he said I have an overlap of MPN and MDS - so now I know where I stand!

[crapaud]

For what it's worth, it is possible to have both an MDS and an MPN - this is rare though.

In my case it was MDS-U + MF.

In view of the rareness of this 'duel illness' and that both are 'curable' by SCT I was treated in this fashion.

I AM NOT SAYING MDS or MF means an SCT is necessarily on the cards, that depends on each individual case.

Best of luck.

Crapaud

[skipperL in reply to crapaud]

Hi crapaud - thanks for your reply - most illuminating. I have asked about an SCT but have been told its a no- no - perhaps that's due to my age (78). Are you totally cured now? I am seeing my consultant June 5 so will attempt to clarify the MDS /MPN position. Meanwhile I shall continue with the Hydroxy and aspirin. Do you have low Hb counts - I was given a blood transfusion a month ago which improved my stamina a bit. Best wishes...

[crapaud]

Hi Skipper,

Apart from the MDS/MF itself I was in good health (never smoked, only drank rarely and reasonably, and although not highly sportive undertook regular exercise) and was 53 when I had my SCT 20 months ago - the delay from diagnosis to SCT was 16 months.

I was extremely low on red, white, and platelets and later multiple thrombosis in arms and legs.

Today all my counts are back to normal including my Hb and my GVHD problems have pretty well cleared up.

Hope you get the clarifications you're after with the consultant.

Best regards

Gary

[skipperL]

Thanks Gary - it does seem that with all the variations in these ailments even the specialists have a hard time keeping up!