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MPN Voice
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Suej1968

I have had ET fourteen years and I was told by my haematologist that as I take my medication my life expectancy will be the same as anyone else. It took a few years to settle my medication but I have never felt ill.

I have check ups and blood tests every 6ish weeks and I now have myelofibrosis as well! I know this is cancer but I just put it out of my mind. I now have a shortened life expectancy now. The incidence rate of the two diseases is below the government guide lines for research which is probably why it is so difficult to give a life expectancy for both these 'cancers'. I live in Barnsley, South Yorkshire and we have a specialist nurse for this condition who is really caring and can answer all questions, she knows the diseases inside out - we're lucky. Our haemotology department is brilliant - I always see the consultant who discuss the medication and other problems. I have been given between 5 & 8 years hopefully I'll get more but I'm going to make the time crack!!

,I am 69 and yes I could feel sorry for myself but have 6 beautiful grandchildren - 8,7,6, twins 5 and the youngest 3. Although I know I won't see them go to university, get married have children etc I try to concentrate on the here and now and enjoy every minute of my time with them, which is a lot!

I am taking anagralide 500 mg twice a day and at present my condition is stable - long may it last!!

I'm having a big problem getting holiday insurance - E.T is no problem at all but the myelofibrosis is - anyone got any ideas? Hope this helps someone!

8 Replies
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Wow!! that is an amazing attitude to have, and what's to say with that type of attitude you will go on for many more years and maybe see your grandchildren go to university, get married and just maybe see there children, so I admire your courage it is wonderful to hear.

Jean x

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Thanks jean xx

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Hi, Just Travel covered me, I have MF, age 60, key issue seems to be that yr HB is 100 or over.

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Hi Sue

Sorry to hearcabour your diagnosis. I have MF and got insurance online with Amex. They are interested in IN and white count. Provided these are in acceptable ranges it seems ok. Good luck.

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I admire your courage and attitude....you're right about travel insurance regarding ET not being a problem, with just a supplement of around £2.50, but I haven't a clue with the MF! A good comparison insurance site should help

Michael

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You never know with life expectancy projections. They always give low estimates, to be on the safe side. However everyone is different, attitude always helps. Being a South Yorkshire lass, like myself 😉, you're made of strong stuff and I fully expect you posting pics of you at your grandchildrens weddings, graduations etc. 👍❤️

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Hello Coradelphine, what an amazing attitude you have towards your diagnosis, you are an example to us all, I am sure you will prove the statistics wrong. With regards to insurance we do have a list of companies that do offer insurance to people with MPNs,

mpnvoice.org.uk/documents/t...

and I was informed yesterday by a lady who has MF, that she got cover through her Nationwide account, so worth checking them out if you have an account, or even open one. Best wishes, Maz

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Have you tried Stay Sure insurance, I've heard good reports about them as I believe they cover MPNs. I am about to get a quote myself from them as I am going on holiday in September. Good Luck!

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