Hi all
I’ve just been diagnosed in November with PV and am Jak2 positive also my doctor says it’s not a serious condition but the more I read about it the more worried I am getting I don’t know what questions I should be asking I am taking 500 mg Hydrea a day
Hi Breffni3 and welcome to the forum.
It is an anxious time when you are first diagnosed with an MPN; as you begin to understand the disease, it will become a little less worrying for you, especially if you have a good health care team and are monitored well.
I have Essential Thrombocythemia, so can’t comment too much on Polycythemia, but I do understand your concerns.
I’ve attached a link below from MPN Voice about Polycythemia, you should find it helpful.
I was diagnosed with PV in 2012 and after my bloods being stabilised, I take Hydroxy 1G and aspirin plus a statin. I have not had any issues and now 70 lead a full retired life. I regularly play golf, take long walks and enjoy life.
Hope helps
Hi, I was diagnosed in 2014, I also have PV. I take Pegasys interferon and aspirin and my bloods are well controlled. I am in my 50s and lead a normal life with full time work. Try not to worry about it, a key step is that you were diagnosed and are being treated: problems like clots typically occur when the disease goes unchecked. If the meds control your bloods you should be able to lead a normal life too. You could ask about different treatments, Hydrea is the most common, with Pegasys typically offered to younger patients. And if you have critical illness insurance I suggest you check if blood cancers are covered in your policy. All the best x
Thanks Susana I am 49 and am really worried about how long I will be able to keep the full time job that I love I feel well just don’t know how this illness may progress. Is it a blood cancer. Nobody said this to me. I’m going to check my serious illness policy to see if I have cover. Did anyone else with PV have a policy that covered it. Thanks
Yes, PV is a myeloproliferative neoplasm (MPN) and so is classified as cancer. It did not use to be the case, the reclassification happened in the last 15 years. So now it is covered by many critical illness policies and many people have successfully claimed. Don’t let the cancer label worry you though, this one can be controlled by meds if caught in time. And it often stays stable or progresses very slowly, over decades. I am better now than I was in 2014, when I was undiagnosed, with platelets at 1500 and rising and HCT at 0.50 - I was a walking heart attack/stroke risk. Now it is all in normal range thanks to regular check ups and Pegasys interferon. At your age, I would also ask your haematologist if Pegasys would be available to you. It is a weekly injection, although I have been able to space mine out to 2 and even 3 weeks as bloods stabilised. Look up more info on the MPN Voice website: mpnvoice.org.uk/living-With...
Thanks so much for the information
Welcome to the forum. This is a great place to get support and information from the perspective of other MPNers.
I was diagnosed with at MPN about 30 years ago. It presented at ET initially, but about 7 years ago it was clear that I had PV. Like you, I am JAK2 positive, but also have another gene mutation (NF1:c5425C>T) that complicates things. However, despite 30 years with a MPN, I have never had a single incident of thrombosis, in fact tending more towards hemorrhage at times.
I am not sure which doctor told you PV is not a serious disease, but that is most certainly not true. The impact of PV can be quite serious; however, it is a disease that can be managed with appropriate treatment. PV is not a monolithic disorder and each case can present in ways that are quite unique. We also each need an individualized treatment plan. The "standard protocol" is not necessarily the right treatment choice for any one of us. We can each have a unique reaction to the different treatment options. MPNs are rare disorders and most doctors do not have the KSAs to provide optimal treatment. This is true even for hematologists, much less general practitioners and other providers. That is why it is so important to consult with a MPN specialist. Here is a list of docs with the requisite expertise. mpnforum.com/list-hem./
It is a fundamental truth that educated and assertive patients receive higher quality care. Passive patients do not. It is very important for each of us to educate ourselves about MPNs and understand what out treatment options are. Here are a few resources to get you started.
About MPNs in general
legeforeningen.no/contentas...
mpninfo.org/conferences/201...
There are some very good presentations, Including the one about the molecular biology of MPNs
About PV Specifically
mpninfo.org/wp-content/uplo...
mpnforum.com/spivak-how-i-t...
vjhemonc.com/video/4kie_7r9...
Dr. Spivak (my consulting MPN Specialist) has a somewhat different view on PV tx. It is important to see the range of views the MPN expert docs have. They do not all agree on a number of things.
About hydroxyurea
drugs.com/monograph/hydroxy...
rxoutreach.org/monograph/hy...
There are a range of treatment options for PV. We each need an individualized treatment plan that is driven by our unique presentation of the MPN, co-occurring medical conditions, and our own treatment goals and preferences. This is best accomplished by educating ourselves, creating a MPN care team who we trust, and then asserting ourselves in managing our own treatment in collaboration with our care team.
Wishing you all the best as you begin this journey,
Thank you for advise your are very knowledgeable on this subject and I have a lot to learn. I will look through all the links.
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