Connect
← Return to Primary Myelofibrosis
Discussion
Comment receiving replies
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.
Replies to "My first meeting with an oncologist after an accurate diagnosis of Primary Mylofibrosis was disturbing. She..."
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 .
Connect
Thank you for your kind words.