Appointment

[Sand-Dancer]

Well, here we are again - the four monthly appointment with my specialist nurse.

My sister has thrombocythemia and me PV and today we have arranged our appointment together! Let's go get needles stuck in us sis!

Wish us luck!!!

[ourlife]

I wish you good luck,

Bet you have had better family outings though .

Have fun,

Ourlife

[Sand-Dancer in reply to ourlife]

Thanks Ourlife.

Both our results were good (thank you Hydroxycarbomide) and the trip into town afterwards and resulting Costa lunch and coffee were great 😀

[Kerri2]

I have read that MPD s are not thought to be hereditary but they have seen familial "trends " can't think of the word. What does your doctor say that both of you have one? Any other siblings? Sorry to ask, how old are you? My Dr was shocked I hadn't had cbc in the 9 yrs I'very been with my HMO. Possibly have had ET for 2-3 yrs, and I want my children and siblings to get complete blood work done.

[Sand-Dancer]

Hi Kerri2. The only answer we get is it's not hereditary and it must be a coincidence. Surely there has to be more to it than that though?

I am 63 and my sister 12 years younger. We were both diagnosed within two weeks of each other eleven years ago.

I have thought about it quite a bit and when my sister was 8 I got married and left home so if it's an environmental thing we were both exposed to it had to have happened in those eight years we lived together as a family. I do have another sister who has gone through breast cancer and was tested for MPN's . She was clear.

I also have three grown up children and grandchildren so would dearly love a clear answer to the hereditary side.

Lesley x

[Paul42 in reply to Sand-Dancer]

Hi

I have PV and my Sister ET, i do agree its too much to be a coincidence. I think there is evidence some families are more prone than others, however they have no idea of the indicators involved.

My understanding with MPN's is that you cant see if someone will get it, so if you test someone it can show nothing, even the Jak2 gene, but a few years later it might...it only shows up when its happened, so might be worth your other sister just keeping an eye on it every few years or so.

Paul

[harleydavidson]

Good luck to you both. Mel x

[jillydabrat]

hope everything went okay, well as good as can be expected anyway, lots of luv from the Brat gang xx

[Phelpsy]

Glad to hear your results were good ,

More to it than a coincidence ,

Are you at the Freeman hospital if you don't mind me asking ,

I'm still waiting for a referral ,,

Take care Pam x

[Sand-Dancer in reply to Phelpsy]

Hi Pam. No I'm at South Tyneside. I thought you got your referral? That's taking a long time isn't it? L x

[Phelpsy]

Hi Lesley , it's been some time now since discussing my referral now end March I recall think it's time I give them a ring

Meds are running low

Pam X