Milofibrosis

Your cousin should be under a doctor's care. Myelofibrosis is a serious illness. His blood should be checked weekly or bi-weekly until the doctor has determined how often he should receive blood transfusions. There are several approaches to this illness, one is to a receive bone marrow transplant, somewhat still experimental, and the other is to remove his spleen, this will slow down the blood loss - mainly red blood cells. Please seek the help of a specialist in blood disorders. Occasionally myelofibrosis is a secondary disease which can be eliminated if a primary illness if diagnosed and treated.

Is milofibrosis a cancer? My mom has it and the doctor for the first time used the word cancer when in the past we were told it was a blood disorder? Her spleen has gotten very large and she has had radiation to help reduce the size and the pain but it didn't help very much. She is wearing pain patches right now. She gets transfusions almost every other week and bruises very easily - any info I can get would be very helpful.

Http://www.Acor.Org/diseases/hemato logy/mpd/mffaq.Html#what%20is%20the

thats is great site for information on myelofibrosis. I found out alot about my mom's disease there and got alot of information. Not to mention the trip I went on with mom to the hospital to meet the doctor. My mom s currently in the middle of a bone marrow transplant and is making a great recovery.

These are some sites that my mom has sent me to also

www.Cancer.Gov/cancertopic s/pdq/treatment/myeloproliferative/patient
www.Seattlecancercare.Org< /a>

i hope these help

Hello,

my father died of milofibrosis 21 years ago. At that time it was a virtually unknown disease which was often diagnosed as leukemia or bone cancer. Right now there is no cure for this disease. However, my aunt (father's sister) has also been diagnosed and keeps up with the current forums held by the best specialiasts in the world. They believe that within a few years, the beginnings of a cure will begin. This disease alway's starts with anemia. But it is not an iron defficient anemia. The bone marrow turns to fiber and stops producing red blood cells. Thus the white count goes up, and the red count goes down. This is why the disease is so often diagnosed as leukemia. Because the spleen produces our red blood cells for the first few years of our lives, it takes over the production when this illness is present. My aunt's spleen is now at 15 pounds. Leaving the spleen in is absolutely vital. When my father had the illness, doctors didn't know better and removed his. This caused him to die at an earlier age. This disease is hereditary. In addition to my father and aunt, I have a great uncle and great grandfather who died of what was then considered to be bone cancer, but what we now believe was milofibrosis. If you are related to anyone with this illness you are at risk. My sister and I both suffer from anemia and see a hemotologist who monitors our hemoglobin, and platelete levels. We take iron supplements which also must be monitored by a specialist. This disease is rare. Right now only 3% of the population suffer from it. Find the best doctor's and do your research. It is available. I hope this has been of some help.
Moontime22

I have been reading your posts. I'm doing research for a course right now on myelofibrosis. My mother has had it for four years. She is a vietnam veteran and although she's skeptical about the causes, I am trying to link it to her exposure to various toxins in vietnam. Are any of the sufferers you know vietnam veterans or were exposed to toxins that you can recall from one or more specific instances. This could include nuclear waste or radiation.

Hi,
my father died of this disease 22 years ago, and now his sister is dying of it. Our family has had to watch this illness very carefully because it is only a hereditary illness. This information is from the foremost specialists in the world right now on mylofibrosis. My aunt attends the forums that are held on this illness. However, not everyone who carries the genetic deviation for the illness will necessarily get it. Often times there are other circumstances that will kick it into gear. With my father it was mono. If your mother has this illness, then you should be getting a yearly cbc blood test in order to monitor early signs of anemia which is what this disease starts with. I have so much information on this illness that I cannot write it all, but if you have any other questions please email me and I will put you in contact with my aunt who is the real expert.
Moontime22

Actually myelofibrosis isn't known to be genetic. It is caused by an abnormality in the philadelphia chromosome. What causes the abnormality to flare is the question. The only link is toxins. Although a you can have an abnormality in that gene; which can be genetic, something has to "trigger" it. This is where the toxins come in. Perhaps your ancestors both carried the abnormal gene and were exposed to the same toxins. That is where I would investigate. I am looking for those who are vietnam veterans and exposed to agent orange, or other airborne toxins and are now afflicted with myelofibrosis. My prayers are with your family. I know how it has affected ours.

Hello - my dad is a vietnam vet and has myeloproliferative and myelodysplasia. I strongly believe that it is caused from agent orange and am looking for additional people too!

I am also wondering about the connection of agent orange and myelofibrosis. My father is not a vietnam vet, but worked in the area where agent orange was tested before it was used in the war. He developed sarcoidosis and then myelofibrosis. Any information of the connection would be most beneficial.

My uncle just died today from myelofibrosis. There is a lot of incorrect information in here. First, the correct spelling of the name should be established. It is m y e l o fibrosis. It is a rare disease that is a result of a mutation in the gene that produces red blood cells. This gene has been found and the mutation found in those with the disease but not in those without it. It has not been found in hereditary material that was swabbed inside the mouths of these patients. Therefore, this gene is not hereditary and neither is the illness. There is a ton of information on the internet about the latest research on this disease. Be careful of the sources you obtain information from. Make sure it is a legitimate medical journal, medical research sponsored site, etc. If you or a loved on has this disease, you'll want to find where the clinical trials for it are being conducted and get in on them. You can go to www.Centerwatch.Org (or .Com). Good luck to you.

I too have mpd and was in vietnam. I would like to know if any info out there linking the two(mpd and agent orange)

I'm also a viet nam vet with myelofibrosis. I'm in the very early stages, but the va claims this this is not agent orange releated, I doubt that. I'm also diabetic, type ii and have had stage 3 melanoma. I also suffer from osteo arthritis and itp a blood platelet count problem. I have too many medical conditions to not believe that it's all agent orange related.

Bio...I so agree with you...get in a STUDY....I did a month ago..this is not a disease to be takin lightly....I have been on my study one month and my spleen has shrunk, my counts are up! I agree....also...research...reseach...but medical sites...ask your doctor questions....don't be afraid to ask!
Studies are going on all over the country.....find one! There paid for by grants!

Benny I'm from Louisiana also...near Lafayette....get your uncle to Anderson I'm in a study there...having great results

I lost my Dad to myelofibrosis a couple of year ago,prior to this he had never had a days illness in his life,and from the diagnosis he lasted only 2 years. Early in his working life he worked with raw chemicals,and we have since found out that at least 4 other men he worked with in the sixties all have died from the same of similar diseases.I am trying to do some research into this so if anyone can help me i would be oblijed.

Hi Ditey,

Hope your condition is still continuing to do well. Are you able to say what treatment you're receiving? My mother has myelofibrosis - which developed from polycythaemia (rubra vera) - and her spleen is very large and painful. Her doctors are reluctant to operate because her heart is weak, but her condition isn't great. Any info would be really appreciated.

I am from New Zealand, aged 54, male and diagnosed with myelofibrosis when I was aged 40, some 14 years ago. what I want to tell readers is to have a positive attitude and seek out alternative medicines, steer away from chemo/radiation and don't let them remove your spleen unless it is life threatening. I use a standard drug each day called hydroxyurea and voltaren (pain relief). In addition I have tried a number of alternatives including daily tonics of chinese herbs, NLP, crystals, bachs flower remedies, organic foods, reflexology, massage etc etc! Now one or some of these may work for you BUT both NLP and reflexology have been most effective for me. I also have a positive outlook and got over the "why me" syndrome. I was a very active sporting person and the disease has eliminated most of my favourites BUT I take the attitude of what can I do not dwell on what I can't do. I still play golf and tennis (doubles not singles), walk our dogs a lot and generally enjoy life.
Best regards to all other sufferers; be cool be positive there are a lot of people worse off than us!

Good to hear directly from somebody living with this condition, and glad you're doing so well, especially on the hydroxyurea.

My mother was on this but got ulcerated legs as a side effect, and switched to anagrelide, as part of a drug trial in the UK. I think Anagrelide is licensed in the US, but not here in UK. Anagrelide worked very well for Mum's myelofibrosis until October 2007, when she started to experience stomach pain and severe swelling throughout her body, and as a consequence lost her mobility. It turns out that the Anagrelide has damaged both her kidneys and heart - she's been hospitalised for most of this year, and has just started a regime of dialysis three times a week, and regular fluid removal to get rid of what the kidneys couldn't. So I would seriously warn anyone on this medication to make sure that their heart is regularly scanned - my Mum's wasn't, and if it had been the doctors would have picked up on the damage sooner and either amended her anagrelide dose, or switched to something else (which they have done now), and saved the heart from further damage.

My dad was diagnosed with myelofibrosis 15 years ago and everyday is a stuggle for him. He was also in Vietnam and was fighting for this disease to be recognized by the military as being caused by agent orange. It is truly sad for all of the people that do not have the time or energy to fight the goverment on this. But I am here to tell you that my Dad won. His disease was recognized and he currently is receiving full disablity thru the VA. This was a long fight but after hours and thousands of pages he was succesful. Please don't give up!!! My Dad and I our going to work on setting a web site up that will hopefully help other Veterans with this disease.

wantacure, that's great news! Wishing your father all the best and strength in his work and you for your support of him. My mum was raised in UK army camps as her father worked in some type of R&D during WW2 and I can't help wondering if she was exposed to some toxic substances during this time. BTW one of the drugs she's on now is called Busulfan, it's a type of chemo and seems to be working. She has hair loss and is still disabled but is otherwise much better, and really positive about her condition.