New diagnosis of primary myelofibrosis

Hi Nigel, welcome to the club no-one wanted to join!  A lot of stuff on the internet about Myelofibrosis is about old studies so are no longer relevant re life span

ive had post Polycythemia Vera myelofibrosis for 2 years and PV for about 18 months before that  

firstly where abouts are you in the UK. You need to be referred to an MPN (Myeloproliferative neoplasm) specialist.   This can either be done virtually or in person. I had one appointment privately for speed, took my blood test results then got tranferrred on theNHS to that specialist. 
I had been treated by phlebotomy only by a haematologist for 4 months. A haematologist is not a specialist in our diseases.  
a specialist would most likely offer a bone marrow biopsy and probably a newer treatment ie ruxolitinib or Pegasys interferon or Besremi. 

I can send you a list of MPN specialists but although it is 2016 most drs don’t change their specialty but there may be new ones 

above all, don’t panic there is hope for you. 

Hi Nige, nice to meet you but I really wish it were elsewhere. 

I don't have myelofibrosis but I do have another blood cancer, MDS (myelodysplasia). I don't see a problem with googling any illness to get more information about it BUT any prognosis of any cancer is most likely out of date as it's based on old information that doesn't take into account new treatments and trials that supercede old prognoses so don't throw in the towel please. I can only too well empathise with you regarding worrying about a wife and 3 children because I also have a wife and 3 children. 

When I was diagnosed with MDS my haemotologist advised me to go home and do some research on it. His secretary posted me a little booklet with a lot of information about my blood cancer. My diagnosis was in March 2015 but when I asked about a prognosis he said that different people go down at different rates. So don't take it to heart about the prognosis that you have researched. I know of some people who have been diagnosed with an incurable cancer before me of less than a year who are still alive today. 

Keep in touch Nigel 

Tvman x

Hello Nige,

my first advice is to get rid of Dr Google. many sufferers live many years with this disease. Look for an MNP specialist doctor (. Macmillan should be able to help you there.)  I followed your path five years ago. Jac 2 positive, BMB and a diagnosis of Myelofibrosis.  For years I was watch and wait taking only lose aspirin three days a week. This is not unusual. When my white cells rose dramatically and HGB went down I was urged to start taking Ruxolitinib. It has helped me tremendously. Many patients have difficult symptoms, fatigue, itching, bone pain. I fortunately have avoided those so far.. the only thing we can control are diet and exercise. A stem cell transplant is the only cure and you may qualify for one. 

Correction MPN.