Polycythemia and Jakafi

[ccsial]

I have had ET for 13 years and then PV for a year. I am a 74 YO white male. I have been taking 1000mg of hydra every day for 14 years. I got some bad mouth sores and my doctor put me on Jakafi.

My CBC showed platelets at 340 10(3), White cells at 14.1 10(3), and RBC at 4.31 10(6) when I started 10mg/day Jakafi.

I went in for my 2 week check up and my white cells were at 89 10(3) and platelets at 1630 10(3) and RBC at 4.27 10(3). My WBC and platelets sky rocketed while RBC stayed the same. I also showed 1% blasts in my blood. Now my doctor thinks I have leukemia and I am having a BMB tomorrow.

Does anyone have an idea of what happened here?

[jane13]

Oh dear, can't really help, I guess it needs a haem to look down a microscope at your bmb.

But I felt I couldn't leave u without any comment, so:

I wonder if something was going on when yr doc put u on Jakafi - it's an expensive drug and there are other ways of dealing with mouth sores

When I went onto Jakafi my blood counts see-sawed around a fair amount before settling down

>1% blasts indicative of progression

Good luck

[MCW22]

Please let us know how it goes. Although unable to offer you any help or advice, by posting your experience you are helping others who may be in a similar position. Hope everything goes well for you. Take care.

Carol.

[Tico]

Hi ccsial, can't any advice but sincerely hope all goes well tomorrow and your doctor is wrong on this occasion. Please keep us informed. Sending all good wishes to you.tina.🤗

[ccsial]

Had the BMB today. Doc says odds are it is AML, but there are a few things that might show CML. If AML I have 3 or 4 months. If by God's grace it is CML I may get a few years. But ET an PV almost always go to AML.

He thinks the Hydrea was masking the AML. I'll know for sure in 5 days.

I'm getting my wonderful wife of 52 years ready for this. When I first got ET I saw Mayo said 10-15 years. I'm almost at 15. For the last 15 years I have lived a perfectly normal life for which I am very thankful for. I'm feeling fatigued today. I guess I have to get used to that.

[socrates_8]

Hey ccsial...

I used to also acquire bad mouth ulcers when I was on HU back in 2016... Personally, I was never comfortable w/ HU, and was always a tad concerned by some research that suggested HU might also lead to AML conversion more quickly... Although nothing definitive was ever proven just speculation...

I have now been on Jakafi for two years (20-25mg bd), and my platelets have also largely stayed in the higher ranges of mid 700s - 1M+. However, there has not been any increase in my Blasts,( that I am currently aware of), at this stage...

I found a very useful video from Patient Power where Dr. Srdan Verstovsek of MD Anderson Cancer Center, describes what CBCs can tell us about “blasts” in your blood. What are they, and what do they mean? Dr. Verstovsek explains the significance of blasts, which MPNs are most impacted by them, and what you should know about their presence in your latest complete blood count (CBC).

patientpower.info/video/wha...

Hope this helps a little. It suggests that once blasts are over the >20% then that is usually indicative of a Leukaemic transformation...

Let's all hope that they are wrong in your case...

Best wishes

Steve

(Sydney)

[ccsial]

Thanks for the link. I got my results from the doc later today and blasts in PB are still 1%.

I have to wait until the 14th for the verdict. I wish I had not started HU when I was first diagnosed with platelets at 800. I would have waited until they climbed to 1500. No strokes or heart attacks in my family. That may have given me a few more years. I'm back on two 500 mg of HU every day and my counts are coming down again. Oh well, now I wait.

[jane13 in reply to ccsial]

I think the jury is out on HU and links with progression: I wish i had taken a higher dose of HU back when I had PV and venesections, as there is some evidence that it slows down fibrosis and I now have MF. I know that's not the same as progression to leukaemia but just saying don't beat yourself up about it - it's not clear cut

keep us informed

[ccsial]

Well my BMB results were posted on my health site today. The only big difference I see from 9 months ago is my ME ratio went from 4 to 24. My last BMB blasts were 1%. This time was 2%. I understand that >20%is AML. It looks like a high ME is a severe infection or CML. I would much rather have CML than AML for the time being. I go in Friday for Doc's assessment of this. So far all I have is Google.

[ccsial]

Got a mesage from doc a bit ago. He says I have MF, not leukemia. Post ET MF.

[Bigmann1 in reply to ccsial]

Great news! How are you feeling on the rexo?