MF and mutations

[billybrock]

Hi I am 79 and have been diagnosed with MF. Blood tests have confirmed I have the following mutations EZH2 x 2, ASXL1, ETV6 in addition to Jak2. I am currently under the care of Prof Harrison at Guys, and she states these mutations make me a high risk patient.

I am not experiencing any symptoms apart from an enlarged Spleen. Before receiving the news about the mutations, my prognosis was a mean lfe expectancy of 4 years, but Ruxolitinib, my current medication could prolong that period. However, now being rated as a highj risk, I am assuming my life expectancy is now less than 4 years.

Anyone had any experience of living with Mf and these mutations?

[piggie50]

Hi billybrock,

I’m afraid I can’t answer your question, I have PV but I am sure someone will respond.

Rest assured you are under the care of the very best haematologist in the country.

I wish you well.

Judy

[billybrock in reply to piggie50]

Thank you for your interest and good wishes. I hope your PV is under control.

[socrates_8]

Hey Billy...

My name is Steve. I was diagnosed w/ Post ET/MF circa 3.5 years ago...

I also have the ASXL1+ mutation, and yes, it is deemed as having a worse prognosis...

However, as you have already noted... Ruxolitinib, is also helping to increase our longevity by the reduction of inflammation, and by suppressing the function of our immune systems...

Hence, if you are fairly healthy for someone of your spritely vintage... try not to be too alarmed. Combining a good diet (less processed foods), with a consistent exercise regime, can also help to improve our Quality of Life (QoL), and our longevity too...

Stay positive Billy...

Best wishes to you and yours...

Steve

(Sydney)

[billybrock in reply to socrates_8]

Hi Steve,

Many thanks for your response and advice. It was good to hear that you were going well after 3.5 years.

I am grateful that I am in the care of Prof. Harrison. Hopefully when I see her in February, she will give me some better news about any other medication and prognosis. Keep well .

Billy

[socrates_8]

BTW... Judy makes an excellent observation below also...

Prof. Harrison is one of the foremost MPN experts in the world...

Really wish I had such access...

Here in Australia, we are lucky if there are FIVE (5) MPN specialists within the whole country...

Anyways... I am sure that she will be able to best guide you with these important questions...

Steve

[tracey13]

I don't think you can put anytime on as medication really helps to live a normal life expectancy.

My husband has MF he's 47 he had PV at first then it progressed to MF last year.

His spleen has reduced now and his bloods are in normal range.

Keep positive x

[billybrock in reply to tracey13]

Thanks for your interest and encouragement. It does seem that MF affects people in many different ways and no 2 people are the same. Although I have MF and the mentioned mutations, my blood count was good at beginning of December, and my WBC was 12, which is pnly marginally about the uooer limit. Wish your husband well!

Billy