Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to leukaemia?
On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for various reasons.
The worry of progression is constant and and although I know not everyone does it’s still at the back of my mind all the time.
I try not to worry but I do!
I am not sure that this is a totally parallel comparison. I have the JAK2v617f and NF1:c5425C>T mutations. The NF1 mutation is one of the non-driver mutations that increases risk of progression into AML, but no one knows how much risk. The NF1 gene is a huge gene with over 4000 known mutations. There is no way for me to know what the actual increased risk is.
I was diagnosed with ET over 30 years ago. It progressed to PV about 11 years ago. So I did progress, just not to MF or AML. There is no sign of further progression at this point.
My genetic profile is one of the reasons I opted for Besremi, in hopes of reducing my risk of progression. The good news is that my JAK2 VAF has reduced from 38% to 10%. It is hopeful news.
Trying to "not worry" is like being told to not think about purple elephants. The more you try to not think about purple elephants, the more you think about them. The more you tell yourself to "not worry" the more you worry. We each to find our own ways to manage the realities that confront us. Here are the things that help me.
1. Worry is worse when we feel powerless. Knowledge is power. Building knowledge allows us to make better decisions for ourselves. It also allows us to help others, which is in turn empowering.
2. Based on an understanding of the condition, make the best decisions you can to manage it and reduce risk of progression.
3. Always preserve humor and enjoyment of life. It is harder to worry when one is laughing and having fun.
4. I start every day by saying the Serenity Prayer. I seek to embrace its meaning and implement it in my life.
GOD, grant me the
Serenity to accept the things I cannot change,
Courage to change the things I can, and the
Wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardship as the pathway to peace.
Taking, as He did, this sinful world as it is,
not as I would have it.
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life,
and supremely happy with Him forever in
the next.
Wishing you all the best as you move forward.
Thank you!
Hi, I was diagnosed with MF high risk in September 2017 and a couple weeks later Myelodysplasia -5q deletion was diagnosed also but low risk.I was told no transplant for me...age and another serious health issue Bronchiectasis.I was 68.
I saw my haematology doctor yesterday and we discussed other meds for me(my platelets have been in range now for sometime). I have been on hydroxicarbimide for sometime now and before that lenalidamide. I'm having an ultrasound of my spleen next and take it from there.We discussed EPO injections but maybe not momelitinib as I had 3 bone marrow biopsies and not too much fibrosis showed up.
I am transfusion dependant....1 bag blood approx every 10 days.I cope but sometimes feeling so weary as now... having transfusion today.
I am a positive person.
Hope this helps. Lynn.
Thank you, I’m on EPO injections twice a week plus Rux. Haven’t had a transfusion for a few months (except for one when I had a massive nosebleed but that wasn’t MF related) Pleased you’re still reasonably well, hope you continue to be so.
Another bout of fatigue
Another day in paradise 
Another newly diagnosed
