Change from PV?

[ERei]

I was diagnosed 3 years ago with PV due to being Jak2+ & having an elevated hematocrit. I was later diagnosed as MPN - U based on my April 2022 BMB. I had no scarring in my bone marrow either.I was on hydroxyurea for a year but stopped in November due to persistent nausea. I only take aspirin.

Now my hematocrit and hemoglobin keep decreasing and are below normal but my platelets are quickly rising (147 on November 1st and 309 last week)

Am I now changing to essential thrombocytopenia or MF? I see my MPN doc in a couple of days and not sure what to make of this or to even ask him.

[Paul123456]

How low is your HB? I’m MPN-U/PV so assumed on the cusp of MF. However you could be ET/PV?

Transitioning to MF with no fibrosis (as of last April) seems odd and hopefully unlikely

[ERei in reply to Paul123456]

Platelets rising since stopped hydroxyurea – still normal but doubled

7/11 = 141

9/12 = 127

11/1 = 147

12/22 – 266

01/02 – 278

02/03 – 309

Hgb –

7/11 = 11.7

9/12 = 11.4

11/1 = 11.2

12/22 – 11.5

01/02 – 10.9

02/03 – 10.8

Hematocrit – 7/11 = 36.2

9/12 = 35.1

11/1 = 33.1

12/22 – 34.7

01/02 – 35.4

02/03 – 34.0

Ferritin – 7/11 = 9.7

9/12 = 9.9

12/22 – 5

01/02 – 7.9

[hunter5582]

Are you currently using phlebotomies to control the erythrocytosis? That would bear on the answer to your question about HGB/HCT.

While HU can cause anemia, it would not cause iron deficiency. With your iron levels apparently low, it is not surprising that HBG/HCT is lower.

The rise in PLT since discontinuing HU is not surprising. It would not constitute thombocytosis until PLT > 450. You PLT may simply be returning to your baseline. DO you know your baseline PLT?

I not think any of us can advise you as to what may be going on. I expect your hematologist may need to run some additional tests to answer the question. Hopefully you are already seeing a MPN Specialist rather than a regular hematologist.

The questions I would ask are?

1. What was my baseline PLT before beginning treatment?

2. What is the status of my iron levels? Note this requires a full iron panel. How do my current iron levels compare to my baseline before treatment? What does this comparison mean in my presentation?

3. Is there evidence of MPN progression? What testing would be needed to confirm this? What is my current mutant allele burden? Has it progressed? Do I have any non-driver mutations (if you do not already know this)?

4. What are the next step in my treatment? What are all of my options?

Please do let us know how you get on.

[ERei in reply to hunter5582]

Thanks for your response.

I have only had 4 phlebs since diagnosed 3 years ago - the last one was on 1/7/21. I became profoundly anemic after the last phleb and had to have IV iron (oral supplements did not work). By the end of the 2021, I went on HU and stopped it at the end of 2022

When do you consider my platelets to be baseline? When first diagnosed, after last phleb, when started HU, when stopped HU, or some other time?

I have a visit with the MPN doc on Tuesday - was trying to figure out what to even ask him. I'm not sure if my #s are now a good thing since my hematocrit & hgb are low (but platelets are rising) or if there is a problem.

[hunter5582 in reply to ERei]

Baseline = levels prior to beginning treatment.

Hope you get answers to your questions soon. Please do let us know what you learn.

[ERei in reply to hunter5582]

MPN doc said my labs are what he would expect - is because I took myself off hydroxyurea due to nausea. Will have a visit with him again in 3 months. He expects will then have to go back on hydroxyurea or interferon

[hunter5582 in reply to ERei]

Not surprising. Since you know you did not tolerate HU, you might want to consider Besremi or Pegasys. I have done much better on the IFNs. Hope you find what works for you.

[Paul123456 in reply to hunter5582]

I’d also ask whether you have had an LDH blood test. If not, this might be a useful (but not 100% reliable) marker for future progression.

Also has anyone checked your spleen size?

However I hope this is all for future monitoring purposes because your bloods don’t look particularly alarming and are probably explained by a bit of anaemia.

Hope your consult goes well and please let us know how you got on.

[ERei in reply to Paul123456]

Thanks! My LDH was normal (171) & so is my spleen size. I'm just really surprised that without any treatment my hematocrit & hemoglobin have not increased and are actually low but my platelets are rising

[ERei in reply to Paul123456]

MPN doc said my labs are what he would expect - is because I took myself off hydroxyurea due to nausea. Will have a visit with him again in 3 months. He expects will then have to go back on hydroxyurea or interferon

[Paul123456 in reply to ERei]

That’s good news, sounds like no worries about MF?

if you have the choice of Pegasys or Besremi, rather than HU, please read up about interferons on this and other forums. Many of us are delighted with them

[ERei in reply to Paul123456]

Any time there is a change from my norm, I get a bit nervous. I guess that is also true for many of us

[Anouchka]

I would think asking him might be a good first step for you…. Perhaps he can refer you on