Normal life expectancy with PV

[Manouche]

Overall Survival with PV clinically tested.

mpnforum.com/pv-os/

[JP1952]

So am I reading this correctly? Is the conclusion to this study things are way better for PV patients who receive good care?

[Manouche in reply to JP1952]

…Good care with an emphasis on INF therapy.

[MWxxxx]

I'm sorry I don't really know what this means? I've probably had PV for about 15 years but wasn't diagnosed until about 5 years ago. And what is INF therapy? I think everyone here on the forum is so much better informed than I am. I just take my hydroxy and aspirin every day and someone tells me my blood level results over the phone every 8 weeks. I'm not sure if it is better to be blissfully ignorant or if I should be more proactive. I am only in my early 50's so would quite like to live for a good while yet!

[EPguy in reply to MWxxxx]

INF is Interferon. It has been around for many years but newer versions are easier to take.

Check out the post "Long Term INF Results, link below. Bottom line is INF gives longer life and less likely to progress to MF. Other studies point this same way.

With your lower age especially you should ask your Dr about INF and get a 2nd opinion if the Dr does not give a satisfying answer.

It's a bit confusing because the study in this post above both supports INF and just doing what you are doing with HU and good quality care. Be sure your Dr is carefully monitoring those blood numbers you are getting, it does matter INF or not.

healthunlocked.com/mpnvoice...

[MWxxxx in reply to EPguy]

Thank you this is really informative. I was given hydroxy because my doctors seemed to really hammer home how difficult it is to tolerate interferon. They said the side effects were really bad and most people cannot tolerate it. Then they couldn't get my WBC down, so wanted to put me on interferon. But I was then too scared to give it a go because I was feeling pretty normal on hydroxy and didn't know how I would be able to hold down a job and look after my children if I felt ill all the time taking interferon. Then the doctors seemed to stop worrying about my WBC, even though it hasn't reduced, and keep telling me that Hydroxy protects against blood clots so they are happy to keep me on it. It seems there is no easy answer.

[EPguy in reply to MWxxxx]

HU is quite good for keeping us alive. But it doesn't fix things at a deeper level as INF seems to. For PV you need to esp watch HCT numbers. It's likely ok if your Dr is ok with it, but you should ask. Male they look for less than 45, female less than 42.

The current INF is Pegasys (PEG). The older one your Drs might be thinking of is INFα. You can know which one by how often you would need to take it. INFα required many per week, PEG is one dose per week or less. So PEG is better tolerated. There is a newest one we are hoping will be approved next month, Ropeg. This is best tolerated of all and is one dose every two or four weeks.

In this forum you can find many who are doing well on PEG, but not all do well. But even some of these are trying to stay on it for the better long term benefits. I hope some of them see this and give you 1st hand info.

If your Dr is recommending INF, you are fortunate, and you should consider their advice. You may tolerate it just fine. You should for sure ask about Ropeg if applicable. If you're in Europe it is already approved, in US not yet.

If you start PEG, you should get your allele burden % (likely JAk2) before starting it for future reference, INF can often reduce this number and you want to know.

[MWxxxx in reply to EPguy]

Thank you for taking the time to explain this. This is the most information I have ever had about interferon. I live in the UK and when the doctors discussed it with me back a couple of years ago they told me there were a couple of different types, one given weekly and another daily but couldn't tell me which one I would get as it would be whatever was available at the time. I remember asking which would be better tolerated but they didn't know. I'm beginning to wonder if interferon is more expensive or more difficult to get hold of, they certainly seemed to want to only use it as a back up. I wish I had known more when I was first offered it. I did casually drop it into conversation again at my last appointment but I'm not sure the offer is on the table any more. They seemed to think I was doing ok on Hydroxy - maybe just didn't want to destablise things during the pandemic. My HCT hovers around 37/38. Its my WCC which is crazy high. I will certainly be having a discussion with my doctor at my next appointment.

[EPguy in reply to MWxxxx]

You're right about the cost, HU is very cheap, INF is quite expensive. But as Manouche notes below you likely have a very good case for INF. I think near all of us has a good case based on recent data and starting early seems to be the recommendation for most.

Regarding the type, don't accept the old INFa, insist on the current Pegasys or if/when you get access, Ropeg.

[Aneliv9 in reply to EPguy]

I told my heam about INF but she told me that there are not solid clues that it halts progression... I would like to try but she doesn't think i have to

[EPguy in reply to Aneliv9]

You should check the post "Long term INF results", and show that info to your haem. I think all of us would like to see her opinion on that There are other posts here on the subject also.

This info is recent but compelling that INF often helps progression and can even reverse allele burden

[neela2020 in reply to EPguy]

No doctor would suggest to change medicine if hydra is controlling the counts well.

Hydra is still most popular and first line therapy, and many are doing good without any side effects.

[EPguy in reply to neela2020]

I understand it is the decision between Dr and patient. I would not suggest any medical advice. But I agree with Hunter that we are part of our care and Aneliv9 is entitled to be proactive.

In that context I believe the info in the new study I reference is revolutionary in our small world and we should no longer assume HU is best for our long term interest even as it can benefit us near term. I plan to pursue switching if my Dr agrees.

I would like a lower probability of progression or death and I'm sure others here would also.

If the study is of low quality or refutable by others we should know that too. Maybe some members can help there.

But at least we and our Drs should know about it.

😁

[Manouche]

Hi MW,I would suggest to watch first how Richard Silver manages Polycythemia Vera

youtu.be/Qi1MSJjTxgk(Not working as expected?)

[EPguy in reply to Manouche]

Great video. I think it's partly a presentation of the paper in the link here. I've made an easy read list of some of the key findings here (reproduced from an older post)

It's clear Cornell is a top leader in INF for MPNs.

Another point he made on the video is Cornell's efforts to change world standards to move INF to a 1st line PV treatment. This happens to correspond to the goal of one of his company disclosures, the makers of Ropeg. But I agree INF needs to move up the priority chain.

==============

Below is a summary from the report. MFS is myelofibrosis-free survival, OS is overall survival.

-----

-Low Risk- (generally under 60)

--20 year MFS /OS--

INF: 84% / 100%

HU: 65% / 85%

PB: 55% / 80%

-Hi Risk- (Generally over 60)

--20 year MFS /OS--

INF: 89% / 66%

HU: 41% / 40%

PB: 36% / 14%

====

healthunlocked.com/api/redi...

[MWxxxx]

Hi. Thank you so much for sharing this youtube video. It was really informative and I understood more than I thought I would! I suppose my only question would be: does anyone know how well interferon stands up to high white cell counts in comparison to hydroxy, as this is where hydroxy is failing for me. I haven't needed a venesection since starting hydroxy and my platelets are stable, but I could really do with getting down my WCC. WCC wasn't really mentioned in the presentation.

[Manouche in reply to MWxxxx]

High WBC are sometimes a sign of early myelofibrosis. In this early stage interferon is known to be quite effective as it can sometimes reverse the progression. Well worth trying.« … treatment with IFN was shown to reduce the risk of myelofibrosis by 9% per year of treatment »

onclive.com/view/interferon...

[MWxxxx]

Hi. Thank you. I will definitely be initiating a discussion about interferon at my next appointment. I have raised by WCC several times and queried whether this together with a moderately enlarged spleen could be an indication of MF but they didn't seem concerned. Maybe I should learn to trust my instincts more.... Thank you for all your help.

[Aneliv9 in reply to MWxxxx]

are your white blood counts elevated more than normal range?

[MWxxxx in reply to Aneliv9]

They are around 34, which I think is way out of normal range. But hydroxy didn't seem to touch them.

[Aneliv9 in reply to MWxxxx]

So your doctor is not concerned at all with this out of range number? What is a possible explanation for this white blood cells elevation? That is very good. Is your doctor an MPN specialist?

[MWxxxx in reply to Aneliv9]

They were initially particularly. Once I started hydroxy my platelets fell quite low and my red blood count was also quite low, so they couldn't increas the hydroxy. But then they stablised but my WCC remained the same. It ranges between 29 and 34. I have no idea if any of the haematologists are MPN specialists. To be honest before I started reading this forum I thought they were one and the same. I speak to someone different from the team every appointment. I am in the UK so assume that when you are referred under the NHS you are referred to the most appropriate department. I guess if I wanted something else I would have to go private but that is way out of my affordability.