A close relative of mine had full blow myelofibrosis and Repeg interferon cured her within 2 years.

I would say do not panic and do not believe everything negative that you may read. I was diagnosed in 2001 with essential thrombocythemia. At the time, I read that life expectancy was under 10 yrs. I joined an online support group MPN.net which helped me tremendously. I may currently be morphing into ET/secondary myelofibrosis according to recent testing. There are fabulous specialists out there working on the development of new drugs and new treatments. Our MPNs are rare, but in the 21 years since I was diagnosed there have been many, new promising developments towards managing our diseases. See a well-known specialist if you can. Stay informed, keep an open mind and do the best you can with the drugs and treatments that are available. I can tell you that there are so many more options available now than what was available 21 yrs ago. Stay strong and explore all options.

Top 10 - What you need to do when you are diagnosed with an MPN

10. Have a good support system - When you are first diagnosed, it feels like you are on your own with limited guidance and nothing other than a diagnosis name. Having a great support system is key, whether it be a spouse, sibling, parent or trusted friend.

9. Attend a webinar - Join Patient Power, Leukemia & Lymphoma Society, MPN Research Foundation, MPN Education Foundation, Voices of MPN etc. to learn as much as you can about MPNs. Check out the experts videos on You Tube. PV Reporter and MPN Forum are also fantastic resources.

8. Donate to research - There is no cure for an MPN other than a stem cell transplant. Donate today if you can.

7. Join Support Groups - Check out Facebook for all the various support groups. There is a complete listing in MPNs R Us Facebook group.

6. Track your labs - A complete blood count (CBC) is a certain lab you will need to pay attention. Keep track of your White Blood Cells, Red Blood Cells, Platelets, Hemoglobin and Hematocrit. Very important to watch for any trends.

5. Get a Bone Marrow Biopsy - Everyone that gets an MPN diagnosis should to get a baseline bone marrow biopsy (BMB). If you are experiencing different symptoms or labs are dropping, it’s time for another.

4. Learn all you can about MPNs - Since we have such a rare cancer, it’s very important to educate yourself on everything and anything MPN related.

3. Be your own advocate - goes along with #4, but an educated patient is an intelligent patient. Your doctor should welcome your knowledge.

2. Have "ME" time - take timeout for yourself. Go to the movies, run a bath, walk around the block. Having an MPN does not define you. Do something for YOU.

#1 reason is SEE an EXPERT! - Having an expert has many advantages over a local doctor. An expert deals only in MPNs and has attended ASH conferences and wrote published papers on MPNs. An expert will look for any anomalies a local may have missed. An expert will re-review past bone marrow biopsies. An expert will perform next generation sequencing. You owe it to yourself to see one.

Joy Ann Anderson
ET Jak2+ - 22 years
MPNs R Us Facebook Group

Weill Cornell research shows interferon as the best chance for a cure now.

My wife was diagnosed with ET not very long ago and there was a couple of things that I found helped me deal with this somewhat tragic obstacle put in our path. I most definitely wanted to know everything I could about the cancer in order to be able to comprehend the processes involved, our options with treatments, the best way to help my spouse deal with the ups and downs she would surely experience, what to tell the children and to find out what both of us wanted for an uncertain future...eg; life for 1, 5, 20 years. Secondly I knew from other adversities that most of us have to deal with during our life that, in my opinion, I've always dealt better with adversities with support from families, friends, professionals, and for me i found wonderful healing from my negative emotional feelings through support groups of people who can empathize because they've walked in those shoes and understands the ups and downs of trying to live the rest of our lives in a positive light, yet knowing that cancer can be unpredictable. My greatest gift I've received during this time was learning to listen to my wife and to let her vent regardless what my male upbringing said I should do; tell her everything will be fine, I'll fix any problems, that's a men's job to fix any problems in the household, don't cry and show feelings or others will be fearful if they see you show unmanly feelings and emotional. Both of us need to be able to have emotional, good and bad and to be able to vent when things get overwhelming and depressing. We also have to discuss how we want to proceed with life knowing it can change instantly and we need to lead a positive led life implementing activities we both love, like anything to do with nature, we'll get a dog as they are tremendous support animals and companions who are great at listening. We'll go to church again to get back the spirituality which we used to have. Last but not least, for all men out there remember there's help out there for the asking and it's not mean you're weak if you ask for help, in actuality it takes tremendous courage to show vulnerability to others letting them know you're willing to show you need help instead of being silent and doing without help because you didn't want others to see you vulnerable and whether you're religious or an atheist, say a prayer in the morning to help you deal with problems and feelings and say a prayer at night thanking whichever creator, or not, for giving us both another blessed day.

Amen