Thank you so much for chiming in, Steve, as you are certainly our resident patient expert. I was hoping you would offer some information and opinion, and I appreciate it.

I was rather impressed with what AI came up with, actually, and appreciate their responses to questions here rather than them just going out into the ether without answers,

Dr. did some additional tests this week that are not usual for me, I’ll have to look at them. Something seems to be going on, will just have to see what shakes out, and if it is not progression that would be good.

I will do updates here, for those who may find themselves in the same boat.

Anemia is a well known side effect from HU and you were on a very high dose. This may be as simple as overshooting the mark. That happened to me with too many phlebotomies. Suggest that you not presume progression and wait for further blood test results. It would be more concerning if you see blasts on the labs.

You are mildly thrombopenic at 125. Together with an aspirin regimen, it is not surprising that you would see excessive bleeding. It would be more concerning if you develop more lesions and the excess bleeding continues to be an issue.

"Spent phase" and "post-PV myelofibrosis (post-PV MF)" are not exactly the same thing. "Spent phase" is an older, looser, informal term, while "post-PV MF" is the modern, precisely defined diagnosis. You would need a BMB to determine whether you have progressed from PV to MF. Your ongoing blood test and other clinical signs will be used to determine whether a BMB is indicated.

Hopefully, this is as simple as needing to titrate your dose of HU. Please let us know how you get on.

So, I began keeping a running record of labs, phlebotomies, med changes, etc., in July 2023, because I’m a bit (or a lot) OCD, and documentation is hard wired into me because of a career where it was a critical, necessary skill. I’ve been reviewing those notes.

Because of the transition to PV, I was up to 2000 mgm Hydrea a day by August 2023, and that dosage remained until February 2026 when Dr. began reducing it at my request. Labs remained stable via regular monitoring, and I’ve need no phlebotomies since November 2023.

My platelets were last above 200 (at 239) in April 2026, then dropped steadily below 200 in June, July and September 2026, when they were at 125.

I am now down another 1500mgm/week and recheck labs on 10/6.

And so, 2000 mgm Hydrea a day for 2 1/2 years did not pound my platelets down, and I have not been on that dosage since February 2026. It would seem to me that if this was Hydrea overshooting its mark, that wouldn’t happen several months after beginning to reduce that dosage? Or, could it?

I’m writing this mostly for you, Steve, and would appreciate your very informed thoughts, tho would certainly also appreciate hearing from any who’ve had similar experiences. I’m not panicking, but the AI response here to my first post on this providing a link to hospice care for MPN patients is a bit sobering. I do have a need to try to figure things out. What can I say. 🙄

Thanks in advance.

Ai is getting much better but is still prone to hallucinations. Something you can do is to instruct the AI program to only rely on medically curated sites to do the searches. This reduces the chances of random unreliable sources being used.

Please do let us know what additional testing shows. Wishing you all the best.

Had labs and saw my hema/onco yesterday. Platelets and RBC are still low but about the same as 2 weeks ago, WBC’s are up to 24.13. I have been feeling extreme fatigue, a general feeling of unwell and periodically running a low grade temp, suspect I have a sinusitis or some other infection going on. Dr. suggests the high WBC may also be a rebound effect from reducing the Hydrea, and added back 500 mgm a day, plus an antibiotic. He said my “disease is changing”, could be myelofibrosis or genomic changes, which I have never heard of, but a BMB should provide some clarity. I have a labs, molecular labs, a BMB and abdominal CT to check my spleen on November 11th. And so, looking forward to clarity.