When to start worrying about blast percentage changes?

Posted by lmkmom @lmkmom, Oct 27 7:50pm

I have myelofibrosis and my blast counts have normally been in the one to 2% . Today my blast count was 17%. Is that normal for someone with myelofibrosis or should I be looking at possibly having leukemia?
Also, my once high platelet count is dropping drastically . Its scary seeing sudden changes

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Good morning friend!
I also had sudden drop in all of my blood numbers! I also noticed that I had problems climbing one flight of stairs!!
My next appointment! I told my hem/onc that I would reduce my dose of JAKAFI BY HALF !
I trusted my doc but I think now he failed to pay close attention to my test results!! All my blood numbers dropped to below the minimum based on scale !!
For the last two months I have been seeing a new doctor! Stopped JAKAFI now on OJJAARA ! Now trying to increase my blood numbers!!
Very difficult to produce new blood !! Struggling now !
So ! I believe you are smart to get concerned!! Talk to your doctor!! Are you taking any medication to reduce your blood production? You did not say if you are taking medication
I would incourage you to express your concerns to your doctor as soon as you can ! I am not a physician or expert! I am only sharing my experience!!
Good luck ! Do not be afraid to question your doctor!!
Many of us on this site are here to support you and encourage you!! Let us know how you are doing after speaking or seeing your doctor!! Hugs

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Hi @lmkmom Being able to see your lab results before a consult with your doctor can be a mixed bag. It’s nice to have that level of transparency. But it’s also unnerving when you see results that raise an eyebrow and you in a sense of panic. Having been ‘there’ many times, I know the feeling!
The reassurance is that your doctor is watching you closely with your frequent blood work and adjustments to your treatments. If there are any changes, they will be aware of them right away and respond you accordingly.
You’ve mentioned that you are pursuing a bone marrow transplant. Do you have a timeline?
Has your doctor’s office been in touch regarding the results?

REPLY
Profile picture for hanya @hanya

Good morning friend!
I also had sudden drop in all of my blood numbers! I also noticed that I had problems climbing one flight of stairs!!
My next appointment! I told my hem/onc that I would reduce my dose of JAKAFI BY HALF !
I trusted my doc but I think now he failed to pay close attention to my test results!! All my blood numbers dropped to below the minimum based on scale !!
For the last two months I have been seeing a new doctor! Stopped JAKAFI now on OJJAARA ! Now trying to increase my blood numbers!!
Very difficult to produce new blood !! Struggling now !
So ! I believe you are smart to get concerned!! Talk to your doctor!! Are you taking any medication to reduce your blood production? You did not say if you are taking medication
I would incourage you to express your concerns to your doctor as soon as you can ! I am not a physician or expert! I am only sharing my experience!!
Good luck ! Do not be afraid to question your doctor!!
Many of us on this site are here to support you and encourage you!! Let us know how you are doing after speaking or seeing your doctor!! Hugs

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@hanya
Hi. Im on Ojjara. And yes my dr n I discussed this. Im slotted to get a BMT in Decembrr hopefully. Its been a lo ger process then i thought . But once it's leukemia, I have to fight that first, so that's what I'm scared of.

REPLY
Profile picture for Lori, Volunteer Mentor @loribmt

Hi @lmkmom Being able to see your lab results before a consult with your doctor can be a mixed bag. It’s nice to have that level of transparency. But it’s also unnerving when you see results that raise an eyebrow and you in a sense of panic. Having been ‘there’ many times, I know the feeling!
The reassurance is that your doctor is watching you closely with your frequent blood work and adjustments to your treatments. If there are any changes, they will be aware of them right away and respond you accordingly.
You’ve mentioned that you are pursuing a bone marrow transplant. Do you have a timeline?
Has your doctor’s office been in touch regarding the results?

Jump to this post

@loribmt
Bmt is in December hopefully.

REPLY
Profile picture for lmkmom @lmkmom

@hanya
Hi. Im on Ojjara. And yes my dr n I discussed this. Im slotted to get a BMT in Decembrr hopefully. Its been a lo ger process then i thought . But once it's leukemia, I have to fight that first, so that's what I'm scared of.

Jump to this post

@lmkmom
Good morning 😃 I read your post! I hope your doctors can find a good match for your BMT ❤️‍🩹
Stay strong and hopeful
All of us who are sharing our issues are pulling for you! We understand how difficult it is! May the GOOD LORD BLESS YOU
HUGS

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Profile picture for lmkmom @lmkmom

@loribmt
Bmt is in December hopefully.

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Hi, @lmkmom. I’ll keep my fingers crossed for you that all goes smoothly and you can have the BMT in December. There are quite a few of us who have gone through the procedure and recovery so if there’s anything we can help you with just let us know.

A few years ago I started a discussion encouraging others to share their transplant stories along with mine. You may want to do the same. You can also ask questions about your upcoming BMT in that discussion. Here’s the link:

By BMT/SCT Story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Did you hear back from your doctor about the latest blood results showing the blast increase?

REPLY

Im at the hospital getting a transfusion and asked to see my dr. We took another cbc n blasts are higher in just one day. Scared to death currently

REPLY
Profile picture for Lori, Volunteer Mentor @loribmt

Hi, @lmkmom. I’ll keep my fingers crossed for you that all goes smoothly and you can have the BMT in December. There are quite a few of us who have gone through the procedure and recovery so if there’s anything we can help you with just let us know.

A few years ago I started a discussion encouraging others to share their transplant stories along with mine. You may want to do the same. You can also ask questions about your upcoming BMT in that discussion. Here’s the link:

By BMT/SCT Story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Did you hear back from your doctor about the latest blood results showing the blast increase?

Jump to this post

@loribmt
Will they still do a bmt if ive now got Lukemia

REPLY

If you have leukemia, docs will likely want to get that into remission before a bmt.
Think of it as maybe just another step toward a bmt. Wish you the best on your journey.

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Profile picture for lmkmom @lmkmom

@loribmt
Will they still do a bmt if ive now got Lukemia

Jump to this post

Hi, @lmkmom. I know it’s alarming when blast cell numbers escalate. From what you’re saying with the increase in blasts over the last couple of days, it does sound as though there may be a change in your myelofibrosis with a progression to acute myeloid leukemia (AML). Blast cells are immature cells which go on to develop into specific healthy cells in the body. In relation to blood development they are found inside the bone marrow, at the heart of the blood manufacturing site, seldom seen in circulating blood. When blast cells are found in peripheral blood work, that can mean there’s a glitch within the bone marrow somewhere where the blast cells are allowed to proliferate out of control and won’t mature. Without intervention, those defective cells eventually spill out into the blood stream, continue to proliferate and eventually crowd out all the healthy blood cells, including red cells and platelets…(often requiring transfusions) When the level of blast cells in the peripheral blood reach above 20% that can be an indication of leukemia.
At the time of my AML diagnosis, my blast cell count was 85%. Very high and I sure knew it! But with chemotherapy, that number dropped down to single digits with the first round, called induction. The 2 repeated rounds, consolidation, wiped the slate clean so that I could go ahead with my transplant.
So please, if I can encourage you at all, try not to live in fear of this! I literally had hours left on the planet. Chemotherapy saved my life! Without the chemo or the BMT, I’d have been pushing up daisies from the understand for 5 or so years already. I’m 6+ years past all of this and living my best 2nd life! ☺️

If you have progressed to AML, it’s very early and you’d be starting treatment well ahead of where I was at the time. There may be a little setback in the timeline for your transplant by making sure the cancerous cells are gone. From my understanding as I was told, the cleaner we go enter into the transplant journey, the better the chances for a successful outcome. And you want that!
So please try not to live in fear. You’ve already been in treatment for your MF. You faced that head on and did what needed doing…the same will be with this AML. It may test your mettle, but you are strong, resilient and your body is made to heal. It just needs a little help sometime!

I’m here for you anytime you need a lifeline! Please let me know what you find out, ok? Now breathe…

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