If you had a friend that told you that they were just diagnosed with pv by their hematologist, what advice, if any, would you give them?

[Eferret]

My GP suspected I had pv in March by my CBC after talking with another doctor. He had never encountered a pv patient until I came along. He told me to take a low dose aspirin and see a hematologist. He had virtually no knowledge of the disease. I had never heard of pv.

Without the help of MPN support groups like MPN Voice and articles from MPN Research Foundation and the help of my mentors, I would be very ignorant about pv and would just have taken the word of my hematologist for my treatment, without any hesitation.

Given the wide experience of the MPN Voice community with pv, how would you counsel a new pv patient to try to improve their outcomes?

[hunter5582]

You have already found one of the critical things to tell someone. Educate yourself about the condition using reliable sources like MPN Voice, MPN Research Foundation. Patient Empowerment Network, MPN Advocacy & Education International, etc.

An equally important piece of advice is to consult with a MPN Specialist. As you have already encountered, many doctors know very little about MPNs. These are very rare diseases. Unfortunately, many hematologists have very limited experience with MPNs as well. It is very important to find a knowledgeable hematologist who is up to date on MPNs. Here are two lists to give someone who has not seen them.

mpnforum.com/tsr-the-list/

pvreporter.com/mpn-speciali...

It is important when newly diagnosed to not panic on learning that you have a "cancer." PV is a chronic condition that can be managed for a long time. Given the newer treatment options we have, many people with PV can expect to live a normal lifespan when it is properly managed. sciencedirect.com/science/a...

Last but not least, there is more to managing PV than preventing thrombosis. PV and its treatment can cause significant symptoms and side effects. Setting clear goals about quality of life is just as important as length of life in successfully managing PV. We have much better options now for managing PV symptoms. While it can still be a challenge, treatment has improved and new options are on the horizon.

Wishing you all the best.

[Mazcd Partner MPNVoice]

hello Eferret, I would advise anyone who has been diagnosed with PV, or ET or MF, to read the information on our website mpnvoice.org.uk, there is lots of information on there about the 3 MPNs; medications used to treat them; lifestyle hints and tips and lots more. Also, as you have done, to join this forum for support.

[Eferret in reply to Mazcd]

Thanks for the info. I didn't know about the Treatment Leaflets page:

mpnvoice.org.uk/about-mpns/...

I am going to start Besremi soon. I found the MPN Voice Guide to Interferon Alpha booklet to be very informative, especially when dealing with possible side effects:

mpnvoice.org.uk/wp-content/...

It is a little dated since the last update was October 2020 and doesn't mention the fact that in addition to the benefits listed, it also reduces the allele burden, which is probably the closest thing there is to a cure for pv. However it is a wonderful introduction to interferon treatment.

Also, the booklet on Hydroxycarbamide was last updated in October 2020.

[Mazcd Partner MPNVoice in reply to Eferret]

hi Eferret, so glad that you have found the booklets to be helpful. All our booklets are currently being reviewed and where required will be updated with new information. Best wishes, Maz

[ainslie]

Maz and Hunters posts cover it pretty well.

Find a good MPN doc and ask plenty questions after you have read up on the links suggested and others. At some point as Hunter mentioned there is a bit more to it than just controlling the thrombotic risk. There is also the question about if any of the treatments are better for controlling symptoms and possible progression. However the priority must be to control the thrombotic risk first by keeping your counts under control, the big one there is Hct under 45 and some say 42 for female. Aspirin is important also.

The stats used to be and maybe still are that the biggest cause of death with PV is thrombotic issues. Allegedly something like 30%. That data maybe a bit out of date as treatments and Hct limits have improved.

It’s a shock initially but one gets used to it and it becomes just a part of life instead of dominating it. The future treatment wise is looking positive too.

[saltmarsh]

Very good advice here. This disease is something you can learn to live with. There may be a few hiccups along the way but listen to your body and get the right doctor who understands your issues. I'm 77, active and have had this for 5 years - it's an inconvenience for many of us but a good medical team is the key. Good luck