Question for MF patients: A question for you who... - MPN Voice

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Question for MF patients

ccsial profile image
9 Replies

A question for you who have MF. Do you know what your blast % is in your peripheral blood?

Mine was 0 for a few months and two weeks ago was 1%. Today was 2%. I am concerned about going into blast phase of this disease especially since I have a TP53 mutation.

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ccsial profile image
ccsial
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9 Replies
Rachelthepotter profile image
Rachelthepotter

Hi. I have MF, and I’ ve had blasts of 2-3% in my peripheral blood on the last two occasions. I’ll see how it goes when I see my haem next time. I’m making sure that I get the blood taken a week before the apt so that there is plenty of time for a blood smear to be done so that we have all the available info. I was told last time that I also have the TET2 mutation, but that that isn't significant.

I too would welcome info from anyone else on the forum who is further on in this.

Rachel

jane13 profile image
jane13

As I understand over 1% blasts = MF, over 20% = AML

After about 18 months with MF with my blasts hovering around 1-2% I went up to 18-22% but have been blitzed with various drugs and now generally 12-18%. Saw regional specialist to get this treatment: he was clear that I should ideally have been referred to him when my blasts were more reasonable. Certainly worth keeping an eye on blast levels and direction!

Bigmann1 profile image
Bigmann1 in reply tojane13

Hi Jane hope your feeling better! Did you are you deciding on a sct in the future?

ccsial profile image
ccsial in reply tojane13

I hope I get 18 more months. Did the regional specialist say what he could have done if you had seen him/her earlier? I've been on hydrea for 15 years for ET and my Haem added Jakafi now. I'm 74 so not many options. I have read 20% is AML. I wish you the very best outcome.

jane13 profile image
jane13 in reply toccsial

If referred earlier to specialist I would not have deteriorated as far as I have as several drug options available to slow progression (incl azocytiddine which is what I am on now with higher Ruxo dose), liver would not have increased in size so much etc. Also I have cachexia (muscle wastage) and that would not have progressed so far if better clinical approach followed.

beetle profile image
beetle

My last bloods said blasts 6% and as my white cells are creeping back off the floor(!) I am a little bit anxious but determined not to worry yet! One of my sons hinted to me that he might be about to propose to his girlfriend so I am determined to concentrate on the happy news not my health!

Bigmann1 profile image
Bigmann1 in reply tobeetle

Good luck wishing you the best!

Swede profile image
Swede

Hi, yes, yesterday it was 0...No worries then said the doc.

Leighcox85 profile image
Leighcox85

I have had mf for 13 years my blasts have sat at 2-3 for the past 10 years iam waiting for my next results now hopefully yours stop where they are now but your team will watch them carefully

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