Primary Myelofibrosis

You will find on this site lot’s encouraging and people with words of wisdom on your disease. I think you are blessed with no symptoms. My husband was diagnosed in January with myelofibrosis. He just turned 80 years old. We have a wonderful doctor that specializes in treating and research of this disease. So find a doctor you trust and go on with life.

Welcome to this site. Education and information is so important. I am 72. I was diagnosed 9 years ago. I remain asymptomatic. I am on the watch and wait protocol. I follow an integrative health protocol to keep myself as healthy as possible. I also enjoy life to the fullest and am grateful for each day. My husband and I recently returned from a 2-week journey to Amsterdam and Scotland. I hope my story provides some hope and optimism. Wishing you the best!

My first meeting with an oncologist after an accurate diagnosis of Primary Mylofibrosis was disturbing. She told me I had 3-5 years left. After weekly testing and claiming I had no symptoms she decided to stage it based on a list of symptoms and genetic mutations. I only had JAK2. She changed her tune to say I was in the lower risk category of 8-15 years. Then I went to the Mayo Clinic and met with one of the world leaders in the disease and he told me he has many patients that are still doing well past 15 years.
So keep the faith. With few symptoms you are going to do great.

Thank you for the quick response.
Hope you are both well.

Thank you.

Thank you for your kind words.

Which Mayo Clinic location are you going to? The top doctors at Mayo for this rare disease and research are in Phoenix and Minnesota.

I am 76 and have no symptoms from either the disease or the medication . My high platelets, 440, were discovered in a routine CBC I have every 6 months. I have Jak2 mutation at 6% which has caused low risk ET that is being managed by taking 500mg Hydroxyurea every other day. My platelets are back to normal , 340, after being treated since April 3 or within 45 days.

My original doctor is very close to my home and told me that ET eventually progresses to Myelofibrosis because the bone marrow gets stressed by pumping out higher than normal platelets and eventually the marrow becomes fibrotic and no longer performs as necessary. I am not sure that this worse outcome is inevitable in every case, but just in case, I decided to make a change.

Since I already have Mayo Jacksonville doctors and found that Mayo Clinic publishes the top research papers in the field of rare blood diseases, I decided to take the 40 minute drive to change doctors. And in the case of being away for the summer, my Mayo doctor offers tele-medicine consultations. Although my Mayo doctor in Jacksonville is not on the list of world renowned experts he told me that every week he presents his cases to other Mayo doctors for discussion . That reassures me that future medical needs will be directed by collaboration with the best doctors in the field.

I have noticed that some of the comments here are expressing disappointment with medical care or doctors. It helps all of us to share what may be possible to consider when exploring other choices available to even for those living in remote areas. Having a rare blood disease that some hematologists or oncologists may not have any experience with can be a challenge. Today's technology can be used for the advantage of increased options for better care.

Thanks so everyone for sharing your experience. Your personal information offers a wealth of knowledge .

It is a smart choice to see a specialist that has focus on Myelofibrosis. I live in MN and my local oncology clinic is part of the Mayo Clinic in my city. I asked for a referral to the Rochester Mayo Clinic and saw Dr. Tefferi. He claims to be the world leader in this disorder. He is well published. I met with him in person the first time and did a follow up teleconference 6months later. The great part is he can see all of my test results and clinic visits from my local oncology clinic because they are part of Mayo. He has my local oncology doctor order meds or additional testing as he sees needed.
Since you are at a May o Clinic also you can ask about a video consult or a sharing between doctors with Dr Tefferi.
I wish you peace of mind.

Thanks for the information and as an added advantage for the Mayo Patient Portal, there is a way to import all your data from one patient portal to the other so that all doctors have access for updates. This importation option is a typical feature for many patient portals and it eliminates the requirement that the patient carry around a file cabinet from one appointment to the next. Maybe all of this information is TMI for some doctors 🙂 !

Take care

No matter how you feel. Get up. Dress up. Show up. And never give up.