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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Am I heading for the “spent” phase of PV/secondary myelofibrosis, and what does this mean in real life?

A myMPNteam Member asked a question 💭
Illinois City, IL

Around this time in 2023 I transformed from 22 years of ET to PV. I had 3-4 phlebotomies and Hydrea was increased to 2000 mgm/daily to get it under control. Which it has been, and a successful reduction in Hydrea I requested occurred this year. 2000 mgm less per week, gradually over 6 months or so, and labs have remained mostly stable. I know there is a lot of controversy around Hydrea, but both hema/onc I have seen have said it was the best medication for me.

I have become anemic, tho not… read more

15 hours ago
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A myMPNteam Member

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.

11 hours ago
A myMPNteam Member

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.

11 hours ago
A myMPNteam Member

Your far, far ahead of me in both diagnosis and education so thankyou for posting this, and I wish you the very best moving forward.
Andrew.

12 hours ago
myMPNteam

What a thoughtful and detailed question — it's clear you've been carefully tracking your health journey over many years. First, it's important to say that only your hematologist/oncologist can determine whether you're progressing toward secondary myelofibrosis (post-PV MF), but understanding the signs can help you have a Show Full Answer

What a thoughtful and detailed question — it's clear you've been carefully tracking your health journey over many years. First, it's important to say that only your hematologist/oncologist can determine whether you're progressing toward secondary myelofibrosis (post-PV MF), but understanding the signs can help you have a more informed conversation with them.

Some of the changes you're describing do overlap with markers that doctors watch for when monitoring PV progression. These include:

- Dropping platelet counts (yours hitting below normal for the first time)
- RBC and WBC counts hovering at or below the low end of normal
- Developing anemia
- A high JAK2 allele burden (83.8% is notably elevated)

These are changes your doctor will want to evaluate carefully, which is likely why they've already been adjusting your Hydroxyurea dose. The "spent phase" of PV is considered very similar to myelofibrosis by many doctors — in fact, some don't distinguish between the two. In this phase, the bone marrow becomes increasingly scarred (fibrosis), making it harder to produce healthy blood cells. This is why blood counts can start to fall rather than rise, which is actually the opposite of classic PV behavior.

In real life, post-PV MF can mean:

- Increasing fatigue due to worsening anemia
- An enlarged spleen (splenomegaly), which can cause discomfort or a feeling of fullness
- Night sweats, fever, or unintended weight loss
- Potentially needing blood transfusions to manage symptoms
- A shift in treatment approach — options may include immunomodulators, steroids, or other therapies The good news is that your medical team is already responding proactively — adjusting your Hydroxyurea, monitoring your labs closely, and scheduling a recheck in October. That kind of attentive care matters a lot.

It would be worth asking your doctor directly at your next visit whether a bone marrow biopsy or additional blood chemistry tests (like uric acid, bilirubin, or LDH levels) might help clarify where things stand. These are standard tools used to assess whether PV is transforming.

You've navigated 22+ years of this with a lot of knowledge and self-advocacy — that absolutely works in your favor going forward.

15 hours ago

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