Advice appreciated.

[gilded]

As readers on this Forum may know, I’m 80 and was diagnosed withCALR + ET 18 months ago. I’m on 75mg aspirin daily and 90mcg Peg interferon fortnightly. Currently doing well and cheerful and in the best of health, with a dog that keeps me on the go, and still taking adventurous holidays. (I can recommend Madagascar and the incredible lemurs) .However, , being a pragmatic and practical person, I want to know how the condition and when the condition will progress to a state when I face the final curtain. Do you consider this a question I could reasonably expect my MPN Consultant to answer truthfully? Would appreciate all your advice on how to approach this with the Consultant. I don’t want to sound morbid! Tango-ing and quaffing red wine are more my style.

[Hopetohelp]

Have heard it said, and my view too, is that mostly we will die with this condition and not of it. Sounds like you are doing great.

[gilded in reply to Hopetohelp]

Thanks a lot for your reassuring words, Hopetohelp!

[hunter5582]

Like Hopetohelp said, the chances are that you will die with ET and not from it. You have already lived past the average lifespan for a female. Since your health is otherwise good, there is no reason to think that you will not continue to do so. You are following a treatment plan that optimizes your chances for successfully managing the ET.

The question you are asking is not morbid. it is actually quite common to want to know what the future holds when managing a MPN. For better or worse, there is no way to answer the question. Your MPN consultant will not be able to predict your individual prognosis in that way. No one can.

What can be done is to look at your risk factors. Your overall health, lifestyle, non-driver mutations, etc. all play a role in determining your prognosis, including risk of progression. While a general statement about your level of risk can be made, no case-specific predictions can be.

I would suggest that this is more a matter of philosophy than medicine. I know what the risk calculation suggests would be my likely demise from my case of JAK2+ PV, with the NF1 mutation, and a few other health issues. The prediction = approx age 74 - 6 years away. I do not worry about this. At all. There is no "timer" ticking away in my body. Statistical projections will not determine how I live my life. I plan to live a full and rich life for as long as I can. I will embrace each and every day and enjoy it to its fullest. I do not worry about how long I will live. I focus on how well I will live. My current approach to managing PV is what I believe gives me the best chance for both a high quality of life and the time to enjoy it.

We each have to find our own way to create a high quality of life and a way to live it. I love to spend time with family and friends. I enjoy cooking (and eating), various sports and travel. I continue to have opportunities to make a difference in the world around me, which enriches my own life as well.

We each have to find our own way to live the life we wish to live. Wishing you all the best and success living the life you wish to live.

[gilded in reply to hunter5582]

Thanks so much Hunter for your insightful and upbeat response.

[Cindy12]

l was diagnosed with pre-fibrotic myelofibrosis CALR in June 2014 at the age of 81 and I'm still alive and kicking! I still look after myself and do my own shopping, although I do now have a cleaner and occasional help with gardening. Just keep on enjoying life as you are doing and you could have years ahead of you. God bless.

[gilded in reply to Cindy12]

Thanks for your encouraging words.

[Janis12]

ha ha !!! your post cheered me up. I love to read about fellow MPNs getting on with their lives and particularly 'older ones' who are a bit more matter of fact about the 'final curtain. I think it is important to have all the information so at least we can pace ourselves but I know not everyone would be able to handle such frank talk, I am not sure how I would react to being told I had a limited time left. Good luck and enjoy life.

[gilded in reply to Janis12]

I like to think that I eat, drink and am merry, Janis. Thanks

[Meatloaf9]

To quote Mr Spock, "Live long and prosper" May you do both. There is no answer to your question. Best always to you.

[gilded in reply to Meatloaf9]

Thanks for yr good wishes.

[Tyce500]

Hello

Quite new to this but just reading your post (I liked the quaffing wine bit after my own heart) a question though, were you originally prescribed Hydroxycarbamide when diagnosed, my haematologist said that anyone over 60+ is started on this first due to age and other risk factors? I have queried this at my last consult (was diagnosed in June) and will bring this up again this month.

Just like to get more information before my appointment. Thank you am also ET CALR!

[gilded in reply to Tyce500]

Hi Tyce500! I was never prescribed or offered Hydroxy. Pegasys inf. prescribed from the start.

[Tyce500 in reply to gilded]

Oh, I see, will definitely query on my next appointment on the 20th, interested to hear the answer as I am getting lots of aches and pains with the increased dose of Hydroxycarbamide,. Thank you gilded!

[Instow1]

Dear gilded. I have same questions.. I have just read hunters reply. And I think that is the BEST reply we could have.

[gilded in reply to Instow1]

Three cheers for Hunter.!