Introduction of myself, PMF, from China - MPN Voice

MPN Voice

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Introduction of myself, PMF, from China

merlisa profile image

Hi, I'm Qi, from China, I'm 34 years old this year.

I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not so high all the time. These symptoms began to happen to me one after another as early as 2013.

JAK2V617F gene mutation, there is only one mutation in the whole set of genetic tests. The chromosome is normal.

Now, I accept the treatment of Ruxolitinib 10mg bid + Short Acting Interferon 300UI/6 days, additional I also need Prednisone + Androgen + Calcitriol for eating Ruxolitinib and Interferon.

In addition, I have an immune abnormality, and the anti dsDNA is a little bit higher than the normal high value, which is an important index of the red spot wolf storehouse, although it can not reach the diagnosis of the red spot wolf storehouse. That cause me need to eat more Prednisone.

I hope us to discuss this disease together here to avoid future transplantation. I really don't want to take the allogeneic hematopoietic stem cell transplantation (Allo-PBSCT).

21 Replies

Welcome! I have post ET MF, also JAK2 +. There is a lot of support and knowledge in this group so you are in the best place.

Welcome Qi 💚

Mazcd profile image
MazcdPartner

hello Qi, welcome to our forum. You will definitely get a lot of support from the lovely people who are part of this community, and I hope that it helps you. There are a few people here who have had stem cell transplants who will be happy to share their experience with you. Best wishes, Maz

xxbzd profile image
xxbzd in reply to Mazcd

My backstage saw your e-mail, but I didn't learn how to reply. I'm really sorry

Mazcd profile image
MazcdPartner in reply to xxbzd

Hi xxbzd, I have received your message and replied. Maz

Hi Qi and welcome to the forum.

Welcome, you will find people remarkably supportive on this group.I’m unable to give advise as I’m ET.

I’m sure plenty of people will. I do hope so

Welcome Qi. We can all choose how to tackle MF and the various medications can help with symptoms. However, as I am sure you know the only current cure is Stem Cell Transplant (SCT), a challenging prospect. so someone so young should not dismiss it. I had mine for PMF in the UK 10 years ago, aged 58 then. I am happy with the outcome. Happy to help should you wish to know more from the patients perspective.Chris

ps Was lucky enough to tour your country back in 2000 and have many happy memories.

merlisa profile image
merlisa in reply to MFBMT2011

Congratulations. You're cured. I'm afraid that there are no donors for me and all sorts of different arrangements after Stem Cell Transplant (SCT), which is too difficult to predict.

Hi QiWelcome to the group.

I’m ET so can’t advise on condition.

We’re all here to share specifics & if we can’t relate directly to your condition you can always rely on us for support for anything else as fellow MPNers 👍

😘 Welcome MPN friend.Adiewon

Welcome!!You will find an international group here who are kind, supportive, informative and share experiences of their treatment and MPN journeys.

I’m ET, we share the same Jak2 mutation, but different manifestation of its effects.

But we’re all here for each other x

Welcome to the forum!

Welcome Qi! I’m too from China. I’ve lived in New Jersey, USA since 2010 tho. This is a great forum. People here are very nice and friendly. We learn from each other and on this together.

xxbzd profile image
xxbzd in reply to BeHealthy1986

我也中国的,三阴et mf1

BeHealthy1986 profile image
BeHealthy1986 in reply to xxbzd

Welcome to the forum!

saturn0325 profile image
saturn0325 in reply to xxbzd

PMF就是原發性骨纖,一開始就是了,不是真紅或ET後骨纖~

merlisa profile image
merlisa in reply to saturn0325

yes

你是原发骨纤吗?还是et pv后转的呢?

merlisa profile image
merlisa in reply to xxbzd

PMF

So much going on!!! I wish only the best response for you and that you feel better soon.

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