Unknown

[Mandz12]

I am Amanda aged 47 I was diagnosed 2 years ago with Polycemia Vera and Jak 2 positive. And I am still unaware of things like insurance cover ! Meds I think more should be explained to people with these illness . I can't even get an insurance policy as soon as I say I have blood cancer they say sorry we can not offer you anything. Xx

[hunter5582]

Sorry to hear you are having problems getting explanations you need. Others in the UK can best explain the possibilities for life insurance when you have a MPN. Treatment options would best be reviewed with a MPN Specialist rather than a regular hematologist. This is the best way to get care-specific consultation about your options. Here is a list. mpnforum.com/list-hem./

The very short explanation of medication options is that should cytoreduction for PV be needed, then the choices include hydroxycarbamide, Ruxolitinib, and one of the interferons Pegasys/Besremi. Hydroxycarbamide is often not recommended for someone your age. One of the interferons is usually preferred. Many in your age group would start with venesection only as the most important thing to control is the erythrocytosis. Cytoreductive medications are used in higher risk cases. Nearly everyone would also start on antiplatelet medications such as low-dose aspirin. Please note, this is just a broad overview. You need a proper assessment and consultation from a MPN Specialist to answer your questions.

While you are waiting to consult with a MPN Specialist, here are some resources you may find useful.

nccn.org/patients/guideline...

ajmc.com/view/nccn-guidelin...

mpninfo.org/conferences/202...

Wishing you all the best.

[Mandz12 in reply to hunter5582]

I am currently on hydroxycarbamide 500mg 1 one day and 2 second day x

[monarch5000 in reply to Mandz12]

Here's the most cutting edge information about how choice of medication affects the chances of disease progression to post PV myelofibrosis and overall survival:

The Silver MPN Center in New York City treated 470 Polycythemia Vera patients over a 30 year period and this is how their long term outcomes differed depending on their treatment:

20 years after diagnosis:

95% of PV patients who had been treated with interferon were still alive and 15% of them had progressed to post PV myelofibrosis

63% of PV patients who had been treated with hydroxurea were still alive and 41% of them had progressed to post PV myelofibrosis.

57% of PV patients who had been treated with phlebotomy-only were still alive and 49% of them had progressed to post PV myelofibrosis. Source: tinyurl.com/544sybph

[ainslie in reply to monarch5000]

As before it’s important to explain that the patients selected for this study varied between high and low risk, the interferon patients were selected from low risk and the others were high risk, this info comes from my expert at Mount Sinai. Let’s keep it real

[monarch5000 in reply to ainslie]

The peer reviewers of the medical journal Leukemia considered the "normal life expectancy is possible" claim of the study, via early intervention with interferon, to be credible:

.

[monarch5000 in reply to monarch5000]

There is also this retrospective study of 348 young adults (age < 25) with ET & PV, who were followed for up to 20 years, NONE of those who received interferon as a first line treatment progressed to myelofibosis whereas 25% of those who used other treatments did progress within that 20 year period:

ash.confex.com/ash/2023/web...

[ainslie in reply to monarch5000]

I don’t think that changes what I already posted, ie those selected for the Peg arm were low risk patients, Peg can be very good but it’s also possible to have normal life with MPN if not on Peg especially if you follow the low risk patients

[monarch5000 in reply to ainslie]

10 years ago some European researchers had already recognized the disease progression slowing, stopping and sometimes reversing capabilities of interferon and were questioning whether: "it is still ethical not to offer MPN patients the best available therapy - interferon - at the earliest cancer stage where the chance of a successful outcome is likely the best at any time."

.

[ainslie in reply to monarch5000]

Best available therapy for some maybe but not all, also that was 10 years ago, we now have Rux also,not everyone agrees with Hans views but he is a very nice guy though

[EPguy in reply to ainslie]

This risk set is consistent with my misc posts on Rux studies where most on Rux arms have been HU resistant/intolerant.

[ritaandscooter1 in reply to monarch5000]

You keep posting this blanket study that does not take in consideration multiple variables such as additional driver mutations, whether your low risk and the vast difference between each individual and unique body makeups that have PV. Each individual should be diagnosed and assessed as an individual with PV and not treated according to one study coming from one train of thought (this one of course from the Silver MPN center)

The Mayo MPN clinic for example does not share this train of thought nor statistics. Interferon HAS NOT been proven to slow progression nor has lowering allele burden been factually proven to be of significance. I am an example of that low risk PV individual who was diagnosed at 43 and am now 63, virtually no symptoms, no driver mutations, no further fibrosis (2023 BMB) and have been on 2 aspirin a day with phlebotomy every 3-4 months. This regimen has worked wonderfully FOR ME thus far. I am just one individual though with PV. Again, we are all different.

If your going to post statistical (fear producing) studies on a regular basis make sure ALL the fact are there such as high or low risk patients, BMB info, and other health risks of individuals in study. Interferon is a powerful drug which does not work for everyone and can have detrimental/adverse side effects that can be permanent. Can work wonderfully for others too. One size does not fit all.

Kerry

[monarch5000 in reply to ritaandscooter1]

Silver MPN Center: "Our third key finding was the excess deaths from progression of disease to myelofibrosis can be prevented with interferon-alfa. In fact, patients treated with interferon alfa had a normal life expectancy across a 30 year duration of follow up." youtu.be/W3JJBS645c4(Not working as expected?)

[ainslie in reply to monarch5000]

Not him again

[EPguy in reply to ritaandscooter1]

Ditto on the "permanent" part. It's fabulous med but needs well focused attention for safe use.

[Jamesxyz in reply to monarch5000]

Let's be careful with this data.

Does this study take into account the age of the patient at diagnosis.

My guess would be that IFN treated patients were diagnosed at a much younger age.

[Wyebird]

hi, puffin, stay sure, medical 4 u are policies I’ve used in the past. I always take out an annual so that I’m covered for a year incase something else health wise happens.

[Lyndjs]

Hi Mandz12 ,

Blood Cancer UK have recently update their information for PV and have included names of insurance providers that will cover people with PV/ET. Honestly, I've only read this recently and, not yet looked into it myself but hopefully this will help you.

Lynda x

[Mandz12 in reply to Lyndjs]

Thank you will have a look xx

[Andyf24]

Hi Mandz

I'm 56 with PV diagnosed 2016. We purchased our house 2 years ago and as part of that secured a top up to my life Insurance policies ( first time since i was diagnosed).

It cost me about 25% more than my wife who is in good health.

I just had to answer a few more questions but PV was in their list of covered conditions.

I went with Zurich and got a 30 year term covering £100K for £54 per month.

Hope that helps in some way.

[Mandz12]

Yes definitely thank you x