Hi all, I've been waiting for a month after my first BMB. Took weeks to heal btw.
Because I am back home in Australia, Prof Claire's team are going to email me.
I'm an Aussie bit live in Brighton, UK (12 years). So I'm a long way from home, and yet at home if you know what I mean.
I read this after the BMB and was a bit freaked out
"The progression of MF is very variable. People in a good prognostic group can have up to at least fifteen years of being well. Those in the poor prognosis group may have a survival of about twelve to eighteen months. Between 10 to 20% of MF patients may develop acute myeloid leukaemia (AML), a type of blood and bone marrow cancer that progresses rapidly."
Hello. I’m a bit confused! You say you’ve been diagnosed with PV but you seem very anxious about MF. And the potential progression of MF. Is the Prof concerned you have MF and hence the BMB? Or is this just a regular baseline BMB? If the latter, I really wouldn’t angst about MF. Yes, disease progression is always a possibility but for most people it’s a remote one. And even many of those with MF live for years without major impact from the disease. Enjoy life Down Under. Probably a bit more blue sky in evidence than in Brighton!
When first diagnosed, (May, 2016), I was overwhelmed, much like the rest of us here I guess...
However, since having shaken all of that off... These days, I am really becoming quite healthy through diet, intermittent-fasting, and exercise, (cycling in my case w/ some aerobics off the bike too)...
After 12mths or so... I have also seen a regression at a molecular level. My first BMB was Grade2 scarring of the bone marrow. My last, February 2018, showed an improvement down to Grade1 level...
My overall disposition, optimism, and general health has all improved during this same period...
My specialist believes that it is essentially due to the Jakafi I am now taking for MF.
However, I am not having any... I believe that the logic of dietary changes coupled w/ exercise has really worked wonders, in my case, and in my view... There are new studies also underway in the USA to do with diet, inflammation and our metabolism... Makes some logical sense to me at least...
Anyways, I am also in Australia Libby, (Sydney). Another MPNer, Garry, has also recently taken up cycling, and his disposition has also seen a marked improvement, along with his fitness...
If you are based in Sydney, do let us know if you wish to join our little cycling recreational rides we have from time to time...
Best wishes
Steve
(Sydney)
PS. I have seen/heard of a great many people who do have MF and continue to enjoy a long and productive, (almost normal), life etc...
Oh Steve, bless you for your super upbeat, holistic and friendly response. Perhaps we will talk sometime. I'm in Perth for two months, where I hail from, and get my results tomorrow.
It would then be post-ET > PV/MF (Jak2) to explain to Ebot .
I'm also working very holistically and seeing a nutritional therapist with a PhD in oncology. We are following an antinflammatory diet and looking at all the normal stuff: stress reduction, exercise, massage, social.
I work as a coach so am pretty good at the self care thing, when not feeling overwhelmed.
When my diagnosis is clear I will go back to our MPN people and ask for a new buddy if need be, meanwhile I can see how you all might feel like buddies!
How do you feel about pulling the wool with your specialist? I don't know I would be up fro that. I've got legendary Prof Claire Harrison at Guys and she's pretty supportive.
I'm not on aspirin but taking white willow bark extract within the wider regime as I have a history of gastritis.
Are you on aspirin and venesection? How's that going?
There is another MPNer who also lives in Perth, and I'm sure she'd be up for a chat from time to time... Happy to provide you her details if you like... I would just check that she is of course ok w/ that too...
Ummm...???
Not sure what you mean by pulling the wool w/ my specialist? She is a good Haematologist, and she tries very hard to cover all the bases since having first met her etc...
However, we can all agree to disagree on a variety of opinions/topics etc, I am sure...
Naturally, I still have plenty of symptoms, so I am not out-of-the-woods just yet... Being happier is a much better approach all the same, (in my view), and what you are engaged in to manage your own condition sounds ideal to me Libby...
Thanks Steve, I'm here for two months and back most years, so a local contact would be ace.
Sorry I must have misinterpreted you? Thought you were pretending to take the Jakafi? "My specialist believes that it is essentially due to the Jakafi I am now taking for MF. However, I am not having any.."
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