Myelofibrosis

lawnmower511 said:

Myelofibrosis
I was just told I have Myelofibrosis.I am in great health an just turn 52.What are your options?Anything can be beaten try your best.

lawnmower511 said:

Myelofibrisos
I"ve have not been online for awhile.I"ve been getting procritt shots so far I've been able to keep my hgb around 10.7 to 11.3 .Bone marrow transplant has not been suggest yet.I have leg pain enlarge spleen and night sweats.I have it 3 years now.I am still working full time which is hard some days consider I work outside.There always hope everybody just keep swinging.

Hi all,

Whar,s the best cure for myelofribrosis, any one ?

I was confirmed to have myelofibrosis after bm biopsy in 2002. My platelets were around 750,000 but my HB was normal. I was given thre  daily tablets of hydrea. This kept my myelofibrosis stable.

But since 2010 the hydrea became ineffective and my plateles went up to betwe 900,000 to 1,400,000 and my HB haemoglobin went downto between 9.1 to 10.2. This made me aenemic and feels tired all the time.I was then given  5 - 6 agrylin tablets daily. But this is also ineffective. Today my platelette are stil very high and HB very low and fels lethargic and my appetite is not very good. My haemalogist at the Royal Prince Alfred Hospital, Sydney appears to be confused and unsure about my myelofibrosis

Any suggesstions as towhar I have to do ?

My son is 15 Yrs. past bone marrow transplant (given at 10 months of age 1998)  this July. He had Myelofibrosis as a secondary cause of an unknown cancer.  It is crucial to get on the bone marrow registry ASAP as it can take months and years to find a match.Platelets were always low and always needed transfusions before he had the transplant.  He had full body radiation except for the lungs.  We've heard of no other cases of infant radiation to this degree but there was absolutely no other option. His spleen had already enlarged three times it's size and he was only given abt a month to live.  Chemo was given to reduce the spleen size and heave duty chemo given just before transplant to eliminate all cancer cells in body.  Constant check ups with many doctores has been a way of life, but he is a healthy happy young man at this point. He has fairly significant dental issues, as you can imagine.  Very few adult teeth, baby teeth with many cavities, has already had crowns and root canals and has spacers where no teeth exist.  He jokes alot which is a great way to endure what you must.  We tell him his bro in aero space engineering will one day buy him a "small car" and park it in his mouth (implants!).  I've been told to try to keep the teeth as long as possible, also implants can't be done till mid twenties due to continued jaw growth etc. He has cateract that have not yet developed and has what I believe is long term memory loss so struggles with school testing.  At age two he also went thru a mini stoke due to the ant- rejection meds he was on and that resulted in brain surgery to remove one clot.  He has another that was inoperable at the time due to it being directly on the brain stem (nerve center).  That clot is stablized and calcified.  He just can't hit his head! More MRI's show about 5 more very tiny clots. His growth has totally plataued at five feet...  A beautiful and wonderful 5 feet.  Growth hormone daily injections have just now ended.  Growth hormone is something that you should consider as it helps bone density -not just growth.Ask about "adult" growth hormone therapy.  Check "Foundations" that may help cover the cost.  We also pack in liquid calcium daily.  As far as we know he is the only infant who has had and survived this condition which usually effect only 70 yr. old plus.  He is a joy to our family of 8 and to everyone who meets him. Also crucial is liquid vitamins with all the extras...it is very expensive but very needed for your body.