Vensection

[doglover49]

I have had E.T Jak 2 positive for over 3 year now, I have now had 4 venesectlons as my hemocrit slightly high, does this happen with E.T? I asked hematologist if this means I have progressed to P.V and she told me no but it can vary going from E T to PV. They don't actually tell you much, I am only on an aspirin a day for treatment, but just wondered if it's normal to have venesections with ET?

[ainslie]

To the best of my knowledge if you need venisection then it’s likely you have PV now, if in doubt it would be wise to get a second opinion from a MPN expert. You may ask your current Haem why you are venisecting if it’s allegedly still ET.

[doglover49 in reply to ainslie]

Thankyou, this is what I thought after everything I have read about it all, but they would not confirm this to me when I asked the heamoatolgist, I find them very secretive about things and Its though you are not meant to question things, for a long time I was told the ringing in my ears, dizziness etc was not related to the condition, but now they accept it is, it's all very strange and I do not know of anyone in person who has these conditions

[kamiilos in reply to doglover49]

Hello, I am JAK2 positive with PV and my right ear is ringing, especially noticeable during exercise / jog. Wonder if acupuncture would help. Need to try some day.Wishing you best.

[hunter5582]

I do not think most MPN experts would say that it can vary from ET to PV. These are two distinct disease entities with different diagnostic criteria. Some people do seem to fall somewhere in the middle and are diagnosed as MPN-Unclassified.

It is possible to progress from ET to PV. That is what happened to me. It is also possible to have a masked PV that is misdiagnosed as ET. While there is more to the diagnosis of PV, at the core it is defined by erythrocytosis. PV can also include thrombocytosis and leukocytosis. It is still considered PV, not ET-PV simultaneously.

It is not normal to use venesections to treat ET. Venesections can cause reactive thrombocytosis. That is why venesections are only used to treat PV where the risks of erythrocytosis outweigh the risks of thrombocytosis. For someone age 51 with low-risk PV, venesection + aspirin is a common treatment approach.

Sorry to hear that "They don't actually tell you much". That is not an acceptable level of care. You have legitimate questions that need to be answered; however, you may find that you need to seek answers from a MPN Specialist who has the expertise to answer your questions and time to do so. Here is a list where you can get another opinion on your case. mpnforum.com/list-hem./

Wishing you all the best.

[doglover49 in reply to hunter5582]

Thankyou, I do find it all a bit strange to be honest, I get a phone call every three months from.the haematology Doctor, before i speak to them I get my bloods done, Last time I asked her does this mean it is P.V I have and not E.T her reply was that it can vary from .E.T TO PV but it is E.T I have? I thought that can't be right, I will question more next time I speak to them, it does feel like they don't actually know much about things

[hunter5582]

That response does seem a bit odd. Suggest getting an opinion from a doctor with MPN expertise. Perhaps you will get a more clear picture of your MPN status.

[HazeBlue]

I’ve had three venesections over the last 18mths . Having one tomorrow. Have had ET for 10 years and been on hydroxycarbamide for this long . Only recently started to have raised heamatocrit . Don’t like having them . Have increased dose of pills .review in 10 weeks . Good luck . Speak to Doctor about taking pills to help .

[Crossefield]

Hi, I was diagnosed ET in 2019. PLT 7-800. My max HCT was 49. Consultant suggested venesection to see if it helped with the full/heavy head feeling, brain fog etc. So I get venesected to a target of 45. It helps immensely. I can almost predict my HCT in advance based on feelings. In 2023 I was offered a 2nd opinion at The Christie in Manchester where a BMB led to an upgrade from ET to PV and a pegasys trial. (I'll post this experience soon)

My HCT never goes over 50. We're all different and trying to use arbitrary boundaries doesn't always work. I'm happy I gave venesection a go. They clear my head, reduce headaches, give a little more energy. But is a balancing act with low iron! - another story.

[ainslie in reply to Crossefield]

If you have PV your Hct should always be under 45 if male and some docs say 43 for women.

[Barbados19]

I was diagnosed 5 years ago with ET but also had a raised HCT so had to have a venesection. I was given leaflets on both ET and PV and told I had both. Since then have only had 2 more venesections. After reading lots on this forum I questioned my consultant as to which I actually had. (I had also spoken to an MPN specialist who had assessed my BMB and said I had ET). My consultant said sometimes it was difficult to confirm and that I had ET blurring with PV. I questioned this with an MPN specialist at last year’s MPN Event in London. They confirmed this blurring could happen. Since being on Hydroxycarbamide for 2 years I haven’t had to have another venesection (thank goodness as it always took about 45 minutes to get 400ml out of me and was very traumatic). I am still a bit confused but as all my blood counts are at a reasonable level now I am just getting on with it! Hope you get some answers if you get to speak to a specialist. Best of luck.

[doglover49 in reply to Barbados19]

Thankyou, I was just a bit confused as I didn't think getting a venesection was something they done if its E.T, I have just been going along with it all tbh, nothing changes the way I feel which is tired most of the time with little energy I have just accepted this is the way it is now I don,t want to be going on medication unless I need to and just trying to get on with things as best I can too, that's what the hematology told me too it can be varying from E.T to PV it seems a bit strange though to say that

[ainslie in reply to Barbados19]

Could I ask you which expert said “blurring” can occur, I havnt heard of that.

[Barbados19 in reply to ainslie]

Both of the consultants at the breakout ET group at the MPN Event in London last November agreed this was a thing. I don’t know their names I’m afraid. My consultant told me this after liaising with an MPN specialist. I don’t think my HCT was consistently high enough (and also not needing many venesections) to be classified as PV. I am going to bring it up again when I attend this years MPN Event in London!

[ainslie in reply to Barbados19]

Probably wise to check it again with expert and keep a close eye on Hct, it may be that you are early stage PV, I still don’t think you can have both but happy to be proven wrong if anyone has definitive info.

[Timjonze]

I have the same thing - last bone marrow looks like ET but increasingly results and HCT suggest PV. The truth is some MPNs sit somewhat in the middle of the medical definitions. It’s possible you still have what looks like ET with high haematocrit, or it could be your diagnosis is moving towards a PV definition. Either way sounds like you’re being well looked after

[dogsandhorses]

My haematologist told me that venesection doesn't really reduce platelets for a significant period of time. It does reduce red blood cells which is more for PV. If you are only on an aspirin, you may need more than that to reduce your platelets. At least get a second opinion.

[Meatloaf9]

I was diagnosed with Jak 2 + ET in March 2018, in March 2021 my HCT jumped to 55 and the diagnosis was changed to PV with AB of Jak 2 at 50%, my AB was 27% in 2018. I think I was misdiagnosed from the beginning and always had PV. I had one phlebotomy at the beginning and placed on HU, counts have been pretty much perfect since then and never had another phlebotomy since then. Just my experience.

[mhos61]

What are your haematocrit values ?

I was diagnosed with ET Jak2+ in 2016 with platelets at 500. I had no bone marrow biopsy. My haematocrit was 47.9 (WHO 48) and haemoglobin 16.1 (female) (WHO 16). I had no knowledge of MPNs back then, so I obviously didn’t question my ET diagnosis.

It was only later (with acquired knowledge) I started to question had I been in early stage PV. The complication for me was I was put straight on hydrea which brought all my counts into range anyway. I have never had cause for a venesection, but maybe I should have been offered one at my initial diagnosis.

I decided to get a second opinion from an MPN expert (Professor Claire Harrison) a couple of years ago to question this. She ordered more tests, including LDH, Allele Burden and EPO. During this period she referred to my disease status as MPN instead of ET.

My tests came back with an allele burden of 3.69 (low), LDH from memory around 150 and EPO 7. The Professor didn’t think a bone marrow biopsy was necessary at this particular time, and my diagnosis on paper now is ‘likely ET’.

I just think some of us don’t quite fit the WHO criteria. I have been told before that there is some overlap in MPNs.

I do think you need to consider getting a second opinion from an MPN expert. You say you asked your haematologist have you progressed to PV and she said no, yet you’re getting venesections. I just wonder how she/he can be so certain of no progression?