Question for MF patients

[ccsial]

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.

[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]

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 in reply to jane13]

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

[ccsial in reply to jane13]

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 in reply to ccsial]

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]

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 in reply to beetle]

Good luck wishing you the best!

[Swede]

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

[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