First, they “think” this is not hereditary…but my mother, my 15 yo niece and i(70) all have it! They think It only shows up after 60? Come on…read these posts. What they think they know is dangerous. This is a Rare Blood Cancer, and there just is a lot of no answers or think we know. Doctors are known for their Ego’s and arrogance…they do not know it all! YOU need to be in charge of YOUR care! I have disagreed and even questioned and refused some options…interesting looks I do get! I have gotten used to hearing we do not know and I prefer that to what they THINK!
Second, you need to be your own advocate….I read everything I can about Any comment or test result. Blood tests are NOT enough…you need atleast an initial BMB! I have had three. They not only confirm your issue, but also need to be used to monitor your progression. I have ET with minimal scaring and a lot of genetic markers including Jak2. Most that they identify are not anything they understand, state of knowledge in Medicine, but an increasing number of them indicates some change and potentially higher risk. Push for the best outcome for YOU. Side effects vary by individual. My first Oncologist was a lung cancer specialist, next breast cancer….finally asked how many MPN patients they treat….I WAS IT! So I researched BEST MPN specialists and found one of the best in the world in Phoenix, az where I live. I see her PA routinely since he has 50+ MPN patients and my doctor monitors and jumps in as needed or as I demand! I have been to MAYO Clinic, MD Anderson and recently went to City of Hope….always with a MPN DEPARTMENT. I believe All doctors have their preferred treatments and tools so I continually get second opinions, third and forth. Each time I learn something new.
Third, actually read the side effects of All medications you are taking and know Why you are taking it. I have found drugs prescribed in emergency that they continue to renew, but turns out to be redundant? I have found drugs that impact my gums…? It is there under rare side effects. I have eliminated drugs and Informed Dr of My decision and I have never had anyone push back! They are Not Gods!
This is my second Cancer diagnosis, so CANCER does not scare me….it just means I have bigger challenges than many…but I look at the children and young adults and I feel fortunate I am Where I am right now. My “diseases” have made me focus and learn and grow and I am fortunate to have a wife of 40 years who is supportive and participates in my dr visits and care!
I wish you all well in your Battle to improve your quality of life!
Steve

Another thing to note. My sister and her husband are both very good physicians and 66 years old. They went to medical school in the 1980's. At that point, platelets had to be over 800 to be considered worrisome. The medical profession did not know about Jak2, Calr or MPL mutations, much less other high risk mutations yet.
We did not have all the medications we have discovered in the past 5 years to treat the symptoms and possibly alter the course of this disease. Things have advanced rapidly in this field, and now Drs. will look at platelets over 400 as possible disease. They will look at mutations as well as a bone marrow biopsy. This is a rare disease and doctors have so many other diseases to follow and stay up to date on. My sister is a geriatrician and her husband is in critical care. This is not their specialty. Even doctors who specialize in MPNs have a hard time today keeping up with the research and new treatments for this disease. I agree with others here, get a bone marrow biopsy and see a specialist in MPNs. Read all you can on clinical trials and ask your specialist questions. Be your own advocate. Doctors are human. Most are trying to do the best they can but you can help them take better care of you. Most good doctors will be happy to work with a specialist in MPNs so you don't have to always travel to see a specialist - but maybe you go to see a specialist once or twice and your local hemotologist/oncologist consults with them on your care. Often this disease can be stable for many years. Don't despair but do be proactive and get good care for yourself. There is a reason it is called a healthcare team and you have an important role to play.

Hi Kim!

You are not too young to have MPNs. That is just a myth stemming from little knowledge in the medical community about rare diseases which led to patients being left undiagnosed until later in life.
More recent studies on MPNs mention that the median age in some samples was ~55 years, as opposed to 63 - 72 from older studies. This age drop happens because people have a much easier access to information these days and ask questions and push their doctors.
In one of the studies the authors actively searched for patients with higher platelet levels and tested them for MPNs. And the average age was mid-50s. These cases would have probably been left undiagnosed until their 60s.
I have ET with MPL mutation and it took roughly 7 years of higher than normal platelets in tests and plenty of my efforts to get a diagnosis. This means I have been having higher than normal platelets since age 31. I was diagnosed at age 38 after quite some struggle. I am 41 now and still need to push for regular appointments because health issues accumulate. Medicine is rife with misogyny and my high level of platelets were put on me having heavy period bleeding (ironically, a sign of ET which was ignored) which resulted in low iron levels. So more time was spent on trying to convince me to accept medication that would put me in early menopause (with a drug known to cause liver failure 🙃) than in finding why those platelets were still high despite the level of ferritin getting back to normal after iron supplements.
You need to have the BMB, because that is the only way to diagnose myelofibrosis. Some of the answers to your question describe very well what information BMB can give you.
I hope you find a good specialist.

Many hugs of support,
Tatiana

Have the BMB is my advice. It isn't that big a deal to be sure of the diagnosis and treatment you may need.

Hi Kim
Like others I definitely would forge ahead with both a BMB as well as a consult with an MPN specialist .
I live in Canada. My BMB revealed two genetic mutations . U had the slides couriered to Mayo Arizona where Steve has also mentioned.
She did not need to repeat the test but they did a lab analysis to confirm my diagnosis ( as I was seeking a second opinion of my diagnosis from a specialist(.
But she also suggested a genetic analysis of my blood work where they’ve discovered a third genetic mutation. This has led the MPN specialist to recommend a change in medication because this third mutation place is me in a higher risk of more rapid progression than was known before. Fortunately, my oncologist here in Toronto is responding to her advice and meeting with me in a few days from now. The drug that is being recommended may not be covered by insurance in Canada, but there’s a possibility that my oncologist might have some influence in getting approval for me. I agree with Steve, who responded very comprehensively to your question when he says that we do have to be our own advocate. I tend to be placing my trust in the hands of my doctors, but I’m fortunate in that my spouse is more aggressive about self advocacy.
In closing I want to say that, despite having to pay out of pocket for the Mayo MPN specialist tests and opinion I feel as though I am doing everything as well as possible to deal with my condition, and to create the possibility of a longer and healthier life style. After all this is our lives that we are talking about. I hope that this is helpful and not worrisome to you. I am very encouraged to read how many people have lived many years very successfully after their diagnosis
This MPN net work of peoples experience and comments is very informative and very encouraging. So I wish you the best in forging ahead and encourage you not to allow any of this to overwhelm you. Wishing you the best.
Diane from Ontario Canada.