What is Myelofibrosis?

I was diagnosed with mf June of 15. I am a 68 year old woman. I started out with a high platelet count and from there had a bone marrow biopsy which showed Myelofibrosis. I started on a new medicine that I call Jakafi. I get it at the specialty pharmacy at Vanderbilt University Medical Center In Nashville, TN. I am seeing a leading doctor specializing in Myelofibrosis. He is into the research and treatment of this disease.

I have been on Jakafi for a year and a half and went into remission for a short time. I am out of remission but am holding steady blood counts and progression is very slow. I am presently in a clinical research trial for a new medicine for this disease and so far, so good. I go to the Ingram Cancer Center where there are a lot of stem cell and bone marrow transplants done. My doctor, Michael Savona, travels around the world giving lectures on this disease and is very knowledgeable about it.

My advice to anyone is get a good doctor who knows about this disease and is up on the latest treatments and is not afraid to be aggressive with their treatments. There is no cure but they can improve the quality of our lives. You can also get help with the cost of the Jakafi medicine as it is $9,000 a month, but what my insurance doesn't pay, they found a grant that picks up the rest and has done so since I started on it.

Can someone please give me advice? My aunt's husband was recently diagnosed with myelofibrosis. They seem reluctant to talk to people and seem to think that death is inevitable. When I try to discuss it with other family members they say things like, "you can't control other people".

I feel I have every right to help them, and if I'm self-centred for imposing my views, then I'm justified, because I'm sick of having people die on me. Personally, I have been diagnosed as being on the autistic spectrum and that makes it hard for me to communicate with other people.

Who is a good doctor for this?

I was diagnosed with myelofibrosis in March 2012. Since then I have done the following (and generally feel fine still): 1) I refused Hydrea but am interested in JAK2.

2) I contacted Dr. Patrick Kingsley who was highly recommended in WDDTY due to his success in treating cancer naturally. Dr Kingsley put me onto lypospheric vitamin C (also known as liposomal vitamin C (look online). This stopped the itching I was experiencing (as it did to a contact in Edinburgh).

3) I had also contracted Lichen planus - a rash on my lower legs which has been connected with myelofibrosis. This was healed by my Aromatherpaist who, by chance, had had the same condition.

4) I joined Cancer Compass, a website devoted to cancer, with a message board. I found several very informed patients who were active also in seeking solutions. Two (or more) minds are better than one!

5) I had the amalgam removed from my fillings. (I have a good dentist who was aware this requires great care.)

6) I have organized my files into a rainbow set of colors to cover different aspects of research and solutions offered.

7) Oh yes, I don't know if it will help, but as the cause is possibly radiation or benzine, I bought a Q-link, which is supposed to keep radiation and electrical waves at bay. I have also bought modifilan. This is an extract from Laminaria japonica. I did research into Chernobyl some years back and learned of this then.

8) I follow a healthy organic diet with such foods as pineapple, garlic, ginger, blueberries, raw foods etc etc. (Look up, amongst others, Jess Ainscough, Wellness Warrior.)

In short, if you doubt nature's powers of healing you may be slightly brainwashed. Just think how long it took to solve the problem of that terrible disease scurvy!

My father was diagnosed with MF seven years ago and had been on Hydrea. He has an enlarged spleen and that resulted in cirrhosis as well.

After brief ICU care, he is continuing on Hydrea, but his health condition is deteriorating every day. He can't even get up from bed, and needs assistance for everything. We haven't done any blood transfusions so far. Will it give any short term relief?

My mom has had this disease for 11 years and she has a very large spleen. She has no symptoms of pain or night sweats. She has lost a lot of weight. She also has high blood pressure, is diabetic, blind in one eye and anemic. I am the only child for my mom and it hurts me so bad to watch her suffer like this. She is my mom and my best friend.

I do not know how much longer she has to live and wish there was a cure for this horrible disease. My mom is very strong and she knows that she will die soon but she never weeps in front of us.

I am a 54 year old woman. I was diagnosed with MF in February of this year. It is scary. What can I expect? I am on Hydrea.

My Mum is 62 and was diagnosed with Myelofibrosis almost two years ago. Before that, she had a myleofrolivative disorder. Since almost the beginning she has been on a medical trial at the Alfred Hospital in Melbourne. They say the results are 'static,' meaning she isn't getting any better but not getting worse. She has transfusions about every three weeks. The pain she gets in her tummy is horrid.

Her tummy is severely swollen but her liver and spleen are O.K. She is in complete agony. The doctors say there isn't anything wrong and it isn't connected to the MF?

With Jakafi just recently approved by Health Canada and possibly to be covered by provincial health plans, it is worth it for patients to give it a try when it becomes available. It's not for everyone, but in some patients with MF it works better than hydroxyurea. About 50 percent of patients have a decrease in spleen size, many lose constitutional symptoms like night sweats and itchiness from water. But some people derive no benefit.

As a previous poster said, there are many drugs being developed right now. There is much more hope for patients with MF now than there was even 10 years ago.

My dad has had MF for five years. Since June he has had two blood transfusions. I am curious and no one will tell me: what will his last days be like?

I just wanted to comment on a few things that I find very disturbing. I have MF and was diagnosed in 1998 at age 39. I was told at the time I had five years to live. This is so wrong and that any doctor would say that in 2012 is very scary!

Anyone who is not seeing a specialist for these diseases is cheating themselves. I have finally found a doctor who really knows about these diseases and it makes a huge difference. This is doctor no 10 for me. Also, when they say that these issues with feet, legs and swelling have nothing to do with the disease, they can be very wrong. I am in a support group that some of the experts attend and we also have a professor who teaches blood studies at a college who will answer our questions for us.

You really need to educate yourselves to the best of your ability. There are online support groups. This is how I finally found this new hematologist and oncologist.

My wife, age 48, was diagnosed with myelofibrosis seven months ago. She has had about 20 blood transfusions before we found a bmt donor. She is on day 90 now since the bmt and is improving with each passing week. Platelets are finally up to 48,000.

They just did the day 90 bone marrow biopsy which had fluid as compared to the pre-transplant biopsies which were all dry. We are very hopeful.

I have ET which progressed into MF. I take anagrelide and hydrea everyday and narcotics for the pain when needed. I have the same symptoms as others on this blog and whenever I tell both of my doctors (one is a specialist in Chicago and the other is my hematologist locally) they both state that those aren't symptoms and none of their other patients have mentioned these symptoms. This is ridiculous! Why hasn't the medical community been updated on this disease? Do they think a pat on the back is helping us?

I've asked if diet will help symptoms and they chuckle and say there's nothing I can do. I started eating more fruits and veggies and taking multi vitamin, calcium, and vitamin C and exercising every day. My counts have gotten better and I feel better. I still have the night sweats, chills, foot pain, joint pain, left side pain, etc. Is anyone else frustrated with the response from their doctors? I hate when they say we are just watching and waiting. What the heck?

My husband was diagnosed with myelofibrosis in july 2011 and he has had twelve units of blood transfusions. He was confined in the hospital in december twice for pulmonary infections. He has diabetes, hypertension and kidney crystals. His spleen is a bit bigger than normal and we visit his doctor every two weeks and are anxious every time we get his CBC results, since his Hb, WBC and RBC have not been normal since july. There were times when his platelets were normal.

He is on thalidomide and proviron. Please tell me what more I can do for him. He is only 52 years old and mine and my children's lives would not be the same if he leaves us.

My mother is 85 and has had Myelofibrosis. She was diagnosed 15 years ago. She was on Hydrea up until a month ago. We were told by her doctor that the progression of the disease has now made the Hydrea less effective, causing her platelet count to go too low and she became extremely anemic. She has had one blood transfusion and is now taking a new approved drug Jakafi. We are experiencing extreme lower leg swelling as she has transitioned off the Hydrea onto the full dosage of Jakafi. Has anyone else experienced legs swelling while on Jakafi?

My grandmother is currently in the hospital with Myelofibrosis. She is getting blood and platelet transfusions everyday and is taking Amicar to clot her blood. The doctor has told us she is in the last stages. She has been given weeks to months left. She has decided not to stop any treatments because she is the strongest fighter I have ever seen. I feel so bad for all that she is going through.

I am constantly researching and I find nothing really to help her. Her platelets are steady at 5,000 currently, which dismisses many treatment options for her. Her doctor is going to start her on Jakafi because he said we have nothing to lose. I am very afraid. Our family is extremely close and we cannot imagine losing her. Anything that we can try, we will.

I was diagnosed at the age of 24. I am 29 now. I have had a high platelet count that I can trace back to the age of 20. No other blood lines affected. I also suffer from hypertension. My spleen was last checked at 11 cm. That was five years ago. I had hydrea the first 1 and a half years of diagnosis to bring the platelet count down from a million. I normally run about 800 to 700, although my last count a couple months ago were in normal range.

I'm scared to go back. I'm afraid this means progression. My night sweats have returned and my stomach has gotten bigger although I'm not gaining weight. I'm still in denial that I have this disease and so is my family.

For as long as I can remember, I haven't been able to have body massages because the pain is unreal. Also, when I travel, my ankles swell to almost a splitting point and go bright red. Now I'm convinced its all because of Myelofibrosis.

My doctors could never work out what was going on. I'm now 65 and have just been diagnosed. I'm appreciating all your helpful letters. Thank you. --Dianne.

someone asked about Revlimid. I am over 65 and have been diagnosed with MF for a year. The doctor said I have one to two years. I do not have enlarged spleen yet but all the other symptoms. My blood work is all too high or too low, whichever is worse. I had to have blood transfusions every three to four weeks to keep up my hemoglobin and other stuff. I have been on Revlimid for 4-plus months. I did not see any results until about the fourth month on the medicine. I have not needed a transplant for over eight weeks.

I am in line for a bone marrow transplant, from a donor from Germany. I am wondering about the BMT protocol for one with MF. By the way, no spleen problems yet. I think that is due to the transfusions.

I have had Myelofibrosis for 2.5 years now. I am 54 and so far I have been treated with procrit every two weeks. I just prize my wife and son every day I get up. Because I don't know what will happen next. It makes life very scary.

Since I am not old enough for Social Security, I am a groundskeeper my family and the man upstairs keeps me going.

Moffit Cancer center told us that I had five to seven years. I plan to be here a lot longer then that.

I was diagnosed with Myelofibrosis when I was 13, and that was 25 years ago. To this date we are waiting for a marrow donor as I have taken a turn for the worse. The bone pain, is bearable at best. Everyone keep your chins up. things will get better. I have four wonderful children, that the doctors said I would never have. At this point in time I will be going back on Interferon A again. The last time I was on it, it put me in remission for 12 years. Let's see if it does it again. Just please remember that even if you do have this syndrome it is not a death sentence.

There is doctor at MD Anderson Cancer center in Houston, Tx who specializes in the myeloproliforative blood disorders. His name is Dr. Srdan Verstovsek. Look him up! He leads several clinical trials and has lots of informative information posted online regarding these diseases. Very knowledgeable.

I have had an illness since january 2011. When water touches my skin, it burns and when i sweat, i have this burning feeling on the top of my arms and it hurts. i am going for a pet scan to find out what is going on but it's started to hurt and now I am bleeding from the mouth, but nobody will tell me what is going on. They must know something.

My brother is suffering from myelofibrosis...his spleen size is 24 now. It's 2011 and still there is no cure for it! How can he reduce the size of his spleen? any suggestions for reducing the size of the spleen?

my cousin is suffering from myelofibrosis. she is only five years old. please tell me about latest and best treatment for this disease. please.

My mom has had myelofibrosis for the past 35 years and is now in the final stage of this difficult disease. She had a great doctor who kept her going all these years with a range of medication.

She now has impending leukemia and is being given a low dose of chemotherapy every two weeks. Time will tell how long she has. Maybe we can all form a group on Facebook or something to keep the discussions relevant and help each other. Thanks and regards to you all.

my Mom was diagnosed with Myelofibrosis two years ago. It is the post-polycythemic type, and she has the jak 2 gene variation. It has been very aggressive. Her spleen is the largest anyone at Mayo clinic has ever seen. They estimate it is over 20 pounds, while the normal spleen weighs around 1/2 a pound.

She is exhausted all the time, and weighs 110 pounds. That's not good considering her 20lb. spleen. I can't seem to get any answers from doctors about what end stage Myelofibrosis looks like. They keep saying it's just like she is now but worse, and no one knows how long she will continue like this before things get worse.

Do any of you have answers? I'm frustrated and looking for answers. I want to be able to give my 66 year old Mom some hope. We pray every day, and she expects to be around for a long time. I just want to be prepared.

I was diagnosed at the age of 19 with Essential Thrombocythemia (very high platelet number) which, in the past five years dropped tremendously to Thrombocytopenia (very low platelet count) and Myelofibrosis.

I have an enlarged spleen (used to be 23 cm) and I was on the was to a Bone marrow transplant with 30, when I started yoga! Yoga is a genius! Everyone should try it! Change your eating habits, more raw food (fruits and veggies), meditate and do yoga. We'll beat medicine!

My spleen shrank 7 cms in volume -- more than 40 percent. I feel good, healthy and just do my regular check ups! Whoever is out there with Myelofibrosis, my advice is: Keep breathing, be positive and heal your life! Lots of love, Csenge

Is there anyone out there who has had a successful bone marrow transplant. I am 32 and I was diagnosed at 28. There's got to be someone who's had success. --Jeff

Oh my goodness, I am scared to death. I was diagnosed with idiopathic myelofibrosis at age 18. I am currently 25. My platelet count was one million, and I was infused with iron which dropped it down to 600-700 thousand. I've had that steady number for about four years.

Now my count is 145 thousand, down from 200 something thousand. I'm scared to death as this looks like progression. Most doctors can't believe that I even have this horrible disease because of my age. They all say I'm the youngest they've ever seen with MF. I have an enlarged spleen and anemia. My red white count is normal and my liver is normal.

If anyone knows anything bout this condition to better assist, please post. I have a five year old, seven-month old, and I am five months pregnant with my third. I need to be here for my children's lives!

I have been diagnosed with Primary Myleofibrosis and I am a female and only 37 years of age. It was confirmed after I had a bone marrow biopsy. At first my doctors led me to believe that it is nothing serious as I have no symptoms of the disease except for the shape of my red blood cells.

I have had bronchitis three times this year but reacted well to antibiotics. I have to go for blood tests every six months, just to confirm that nothing has changed severely. When I started reading up on it, it changed the complete picture for me. I got so scared when I read that the life span of patients with PMF was only five years.

I suffer from hypertension and depression and also have a severe increase in my platelets. I had a pulmonary embolism in 2001 and since then I have suffered with high platelets. I recently started smoking and they have dropped dramatically. At first I thought it was from the smoking, until I realized I might have been living with MF for two years undetected. I badly need support and reassurance that my life will be longer then five years. My little boy is only nine years old and I want to be there for him at least until I am 50.

If it comes to a stage that I get very sick, I think I will opt for a bone marrow transplant. I feel so sorry for my husband. He has absolutely been my rock over the years. To all of you out there with the same disease, I hope they find a easy cure for us soon. My prayers go out to all the sufferers with MF. Warmest wishes from sunny South Africa.

Dear Will (16 yrs old): I was diagnosed with myelofibrosis at the age of 26. I am now 50 years old. I have an enlarged spleen producing my red cells and dry marrow. I have not had any medications or therapy in all these years. The only time I remembered that I had the disease was when I would have an infarction in my spleen. The pain never lasted very long and was tolerable.

It is hard to realize that you are sick when nothing happens and the doctors have no answers for you and tell you just take care of yourself and we will check on you periodically during the year.

Be glad that you currently have no symptoms of being ill. When you look at the other posts of people in so much pain and going through so many tests and therapies, consider yourself lucky. I have all these 24 years.

At least you have the internet to connect with other people with the disease. When I was diagnosed, there were only four people my age across the country who were diagnosed at a young age.

Good luck to you in the future and like I said before, count your blessings that you are as healthy as you are now and that maybe you could be like me and go many, many years without any problems.

Dear anon10498: If I understand your post correctly, you purchased a a household memon 4-combi electro-magnetic radiation (EMR) transformer and found it to be helpful in treating Myelofibrosis. What is a (EMR) transformer and would you recommend investing in one? I am hopeful for alternative solutions in fighting this disease. God Bless

I have been diagnosed with mdf, md and mpd. is there anyone with all three like me? I am taking aspirin and hydroxycarbamide each day. I feel OK but get very tired sometimes. --kaz

my brother was diagnosed with idiopathic myelofibrosis with eosinophilia, about 25 days ago. Life has come to a complete standstill as we are still not able to come to terms with reality. He is 32 years old and has been married for four years and has a three year old old son. Life has taken a very drastic and dramatic turn.

At this juncture in time, one just wants to give him the best medical facilities but here in India not so many facilities are not available. please advise.

@anon61199: I was diagnosed with MF 2 years ago after been diagnosed with essential thrombocythemia 11 years ago. ET has a tendency to transform into MF, unfortunately mine did.

My mother and I were both diagnosed 11 years ago with a blood issues. My mother was diagnosed six months before me, she was diagnosed with AAL. She managed to survive for three years. It was horrible watching her deteriorate before my eyes. My mother and I lived three kilometers or less away from a oil refinery called Port Stanvac oil in Adelaide SA. They say AAL and MF can be caused by being exposed to benzene. Depending on the wind some days, mum would have to close up the house for the smell of the refinery. it smelled really bad, like burnt toast day in day out for 15 years, then we moved.

I've often wondered if the oil refinery had anything to do with our diseases. The oil refinery has been shut down for the past seven years and has now been turned into a desalination plant.

I'm wondering if there are clusters of blood cancers in that area? I would love to investigate that but have no idea where to start. Plus, the government would cover up a lot.

I have just come upon this site and have learned much from it. I am 70 years and have had myelofibrosis for the last five years and, yes, miraculously still going strong, although I do get breathless and my blood count could be better. But, I have not had a transfusion for the past eight months which is a thrill.

I was glad to learn that my foot numbness and itching, hotness, etc is probably from myelofibrosis as read above. I had blamed it on diabetic neuropathy which my dad had. I, fortunately am not on much medication and I do try to eat healthy.

I joke about my condition. Keeping positive can only help.

One contributor mentioned "healing" and all I can say is "It wouldn't hurt." I personally call down a white light and direct it through my bones. Sounds silly, but something is working.

I was diagnosed with myelofibrosis when I was 55. To answer Dee in a previous post, I also had redness and swelling in my ankles and tops and sides of my feet that for years confounded every doctor and rheumatologist. The redness is like a sunburn, sensitive to hot showers, etc. The only known cure is a bone marrow transplant.

I was diagnosed with MF when I was 53 years old.

After months and months of transfusions and radiations, I am having a BMT.

I am terrified but my quality of life went down the drain for six months now. I am hoping for the best, even though my chances are 30 percent.

My husband was just recently diagnosed with primary myelofibrosis, and the only blood irregularity is a heightened white count so far. They just started him on the hydrea today and we are not sure what to expect, but our primary doctor prescribed immunizations for the all kinds of pneumonia, influenza, and mononucleosis.

We were just wondering if anyone has tried the interferon-alpha and with what results?He has splenomegaly to an advanced degree so much so that they refuse to remove it as the risk of death would be about 25 percent! We are hoping that the hydrea will reduce the size of the spleen enough that a splenectomy will be possible, but we also are weighing the risks against the benefits and would like any input you may have.

Our hearts go out to anyone with this dreaded illness and pray for all of you that God will reveal a cure soon! God bless and keep a positive outlook!! Thanks to all for the information as it is helpful just to see what others are going through.

They are talking about some clinical trials at MD Anderson in Houston Texas and we were wondering also if anyone has been involved in any and what the outcomes were?

As for the pain and burning in the feet and ankles, he has it as well, so I am assuming as are you that it is a symptom of this illness. The doctor put him on neurontin and mobic and it has helped considerably, but if you know of anything else that will help we would love to hear of that also. Best of luck and blessings to all!

Myelofibrosis is one of the fastest growing diseases \cite[11,13]. When literature refers to "rare disease" it mirrors the seventies and eighties and early nineties. Look at the numbers after wireless technology in correlation with the occurrence of the disease.

How many of you have tried revlmid? We start this new drug next week as my husband's symptoms continue to progress even while on hydrea. Have any of you used healing touch?

My mother died from this horrible disease aged 59. She was a real trooper though and lived with the disease for 14 years. Her doctor and specialist could not believe that she was still alive after five years.

She was a nurse and always looked at the healing process as a whole rather than modern medicine which seems to just treat the symptoms. In the early stages she refused to take chemotherapy, relying on her own concoctions. Some worked and some didn't. But as she pointed out "The doctors don't have a clue or a cure".

At one stage she found that a high dose of cayenne pepper helped immensely.

In the end she declined and unfortunately there was not much anybody could do for her to alleviate the pain and suffering. In fact, I was repulsed by the uncaring attitude of the medical fraternity and we were left pretty much with nursing her.

It was fortunate that she had a strong belief in God and Our Lady and she was able to receive the last rites before she died which brought her great peace.

I feel such compassion for all sufferers of this illness and I hope and pray that some progress can be made in finding reliable treatments for this disease.

i got diagnosed with this disease when i was 9. I am now sixteen i don't see how i can just die when i feel so healthy and i never get sick. Can you have a less severe myelofibrosis and live longer? I want to have my life back. -Will

I was diagnosed with myelofibrosis in 2002. I test positive for JAK-2 MUTATION; white female diagnosed at age 49. I am doing great, praise the Lord.

I have taken hydrea before; it affects my skin, gums, soft tissues, although it reduces my spleen; I stopped taking it a few years ago. My prayers go out to everyone involved with this disease.

Everyone responds differently to the disease physically. I've always been anemic (since childhood).

I just know we have to be positive and know that

things could be worse. If anyone must have this, I would rather have it than my children, siblings or parents. I have a wonderful doctor at Duke and a God who will take care of me no matter what.

My husband is 49 years old and was diagnosed April 2009 with myelofibrosis. He started having heel pain and legs swelling late 2007 but the doctors could never find a cause.

He was admitted to the hospital for stomach pain and the ER doctor asked him how long had he been on chemotherapy. My husband asked him what are you talking about I don't have cancer! The doctor told him they would have to run more tests and that is how he found out.

The doctor advised him to cease working and he applied for social security disability but was denied. He was five years from retirement, he can't work and he cannot get social security disability, and now he has just lost his medical insurance through his employer.

This is a military veteran who does not qualify for assistance through the VA either. I was wandering if there are others that have been denied there social security disability?

I was diagnosed with myelofibrosis last may. I was 31 at the time of diagnosis and it was a shock to me and my hematologist.

I have had pain, swelling, burning, redness and sensitivity in my feet and ankles, and my doctors tell me it could be from anything but it isn't a symptom of my disease. What bewilders me is that 70 percent of the testimonials of patients is complaints of these added symptoms.

The disease is rare and they are still searching it, so how are they to say that they are not a symptom, when it's apparent to me that it damn well is. Is there any way to convince these doctors that this is a legitimate symptom and side effect of the disease?

We should all band together and get this one added to the already long list of problems associated with our disease. If anyone has any information or ideas please let me know.

My name is Dee. Good luck and god speed! Remember, you may have plans for your life, but life already has a plan for you. ~Dee

I was diagnosed with MF at 32. My doctors believe that my illness was caused by benzene exposure at work. It can also be caused by ionized radiation. However, apparently only 2 percent of those diagnosed can attribute their illness to occupational exposure.

i am 39 years old and i have several medical problems, but recently when i stand for a short period of time my legs turn bright red and are very hot to the touch and have some swelling but no one can tell what the problem is. Does anybody knows anything about this?

My husband[59] was recently diagnosed with myelofibrosis and suffers from severe gout in the feet. He keeps losing weight and I wonder if this will ease up?

Dear 61199: Apart from a bone marrow transplant where the success rate is very low there is no treatment known to me that will reverse myelofibrosis.

I recently lost my partner not from the disease she had for nine-pus years but by the specialist prescribing Naprosyn which corroded her intestines and shut down her kidneys. Myelofibrosis is a genetic injury and I have identified two potential causes: benzene and EMR. I can’t separate them because all victims had been exposed to both.

Benzene came from (1) cleaning solution used to clean printing presses and (2) years in an automotive repair shop. EMR was implicated for eight out of eight via electric blanket use and one from being a radar operator at Sydney Airport.

With the vast increase of EMR (wifi, cell phone mast farms, wireless Internet, gadgets and toys) now in society myelofibrosis can only increase dramatically.

My partner was supposed to have died in 2005, was twice in hospital ICU and not expected to leave. When we managed to get her out of the clutches of the medical profession we embarked on a healthy eating regime.

Diet is crucial in prolonging quality of life. Eat at least 75 percent food organic and raw, as cooking causes leukocytosis which basically means the body believes the structurally damaged and mostly nutrition poor food is an invader and thus dramatically alters the rate of white cell production to fight it.

Hemoglobin (Hb)can be a problem for myelofibrosis (or AML or Leukemia), either directly from the disease or the cytotoxic drugs used to treat it. We tried (important 1.2 percent yield) Sulforaphane from powdered broccoli sprouts which at genetic level turns on 199-200 of the body’s natural systems including the Ferritin process.

The result was my partner maintained 100+ Hb where previously she couldn’t, thus eliminating blood transfusions for months and one AML sufferer on regular transfusions for years became perfectly normal at Hb 140 after four weeks on it. Needless to say her specialist is incredulous.

I don’t know if you have a certified producer in your country like we do here in Australia and all I can do is refer you to respected world research on Sulforaphane (eg John Hopkins, USA, etc) or the Internet. Amidst all the woes, a positive attitude to living life as it should be lived helps enormously.

Let me just start off by saying I am so sorry that you or anyone you love has been diagnosed with myelofibrosis. Do everything in your power to stay strong and do everything you possibly can to try to overcome this disease.

Myelofibrosis: I lost my mom in 2008 from this horrible disease. She was 59 years young. She was diagnosed when she was 50. The one thing that she felt she knew for sure is that she acquired this disease from being exposed to Benzene.

Benzene was commonly found in factories that manufactured machinery. I am very curious to know if any of you who have been diagnosed with Myelofibrosis been exposed to this harsh chemical.

I had it for a year so far I only has a shot of Aranesp once a week and am doing good. I am only 52. I want to have a long life an will fight every day. New stuff coming down the pike every day.

my father has had myelofibrosis for three years but his platelets go up as high as 4000 and he is in hospital every two weeks due to melina and can get as many as 10 units of blood to put him right.

My mom is 70 and is suffering through what is most likely the final stage of this horrific, cursed disease.

Please be careful if your loved one is hospitalized and is given IV antibiotics. My mom's IV area started turning pink and swelling and we alerted the hospital staff. However, because it hadn't been in the standard three days, they were slow about addressing the issue. It became infected and now the infection spreading rapidly although she is on the most intense antibiotic treatments.

If you observe something that isn't right-demand something be done immediately. Don't wait for the hospital staff to follow customary procedure at the expense of your loved one.

My father has this as well. It has been three years since he was diagnosed. I think about it every day of my life. I feel so much pain for the pain he has suffered. I think this is a horrible disease.

I have seen him go through so much and he is a great person. He is only 66 years old. I am afraid he is not getting any better and I wish there were something for Myelofibrosis. I wish there were a cure for this disease.

My dad was just diagnosed,he was also suffering from swelling of the knee and pain. he is only 54 and we are not sure what the hospital is going to do.

My husband was first diagnosed as atypical CML three years ago but 10 months ago they changed the diagnosis to myelofibrosis. His anemia has been bad with many blood transfusions when he was on hydrea. His doctor changed his treatment to busulfano. This has stopped the anemia but his white cells have now decreased too low. He feels better because his hb is better. He has many lesions on his body that bleed at the slightest knock. The doctors want to do a biopsy on these and his legs have areas that are hot to the touch and swell for no apparent reason.

Does anybody else have or know of all these symptoms?

My Mother has myelofibrosis. It is an ugly disease. She is now on so many meds. She has swelling and nerve pain in her feet where they burn and they get beet red and at some points are blue. She has extreme difficulty breathing now that she is on breathing treatments. I was wondering, she now has lesions appearing on her skin that are painful, not healing and very red. A doctor today told her it could be skin cancer. Does anyone know anyone that has this too.

To Anon10763

Things to watch for include (1)anemia-possibly severe and this can cause excessive tiredness and/or weakness (vitamin D may help but check with your MD)-plus damaged body metabolism, (2)platelets may not be properly formed and count can vary widely above or below normal 150~400 range interfering drastically with clotting, causing inability to clot or excess clotting, if on Warfarin for excess clotting remember vitamin K is important in correct proportion, (3)white cells may not be properly formed and can be excessive which if not controlled may lead to leukemia, (4)fever/chills-victim body temperature may be 1~2 degrees higher than other people so she may be freezing one minute and throw all blankets off the next, (5)where spleen is removed-victim's blood purification is poor and immune response may be seriously compromised, ie common infections become major problems, (6)lower limb fluid retention-once my partner's spleen was removed she had badly swollen legs from the knees down every day. We put in GS dirtypower filters Sep-07 reducing 560~620 GS units to sub 30 and her breathing improved first night and usual mild night time headaches disappeared. One week later lower limb swelling disappeared and only returned when in hospital for 3 weeks for a common Staph infection and ward GS reading was 450, swelling disappeared a week after getting out of hospital, (7)if dangerous medication is required then their side affects may include impaired liver function, liver spots on skin, hair loss, unsightly marks on nails, longer time to heal, excessive uric acid, gout, etc.

While the EMF/EMR cause can only be conjectural, it is obviously heavily implicated because once we removed almost all of it from our home by GS and memon most of the common symptoms associated with my partner's myelofibrosis reduced dramatically or just simply disappeared - for as long as possible we pray as she is now in her 8th year of an expected five! One further suggestion is that diet may help including undamaged by processing W3, W6, W9 oils in correct 2:1:1 ratio, Udo's oils(Erasmus)combined with full range of essential vitamins/minerals including those important ones systematically refined out of our foods eg Silica which is involved in immune system health and connective tissue well being. For the beauty conscious ladies it is the natural source of the body's collagen production.

Please remember you are not alone and we understand your worries, I hope some of what we've learned may help you. Regards from Anon10498

My mother was recently told that she has myelofibrosis. She is seeing the doctor every 2 weeks for blood tests. Can anyone tell me things to watch for. Her ankles and legs have been swelling and painful and I didn't know if this was caused from this or not. Her doctor told her it could just be age. If anyone could give me a good resource to check out more about this I'd really appreciate it.

Dear anon304:

My partner(53) has had myelofibrosis 8 years with spleen removed. Until recently her fortnightly blood tests showed very high 1100+ platelet count (normal persons are 150~400) and she had to have 1000mg of hydrea a day. Years of anemia was so bad she was on 4 iron tablets a day. Two months ago I purchased from Germany a household memon 4-combi electro-magnetic radiation (EMR) transformer in the hope that it would stop my hearing loss (daily hearing tests) and terrible hyperacusis pain from the EMR of wireless Internet routers. Well it certainly did that and inside two days but it had other welcome and very unexpected affects. It was only in the house 2 weeks and my partner's years of anemia vanished entirely. She has not had any iron tablets in the past 6 weeks since and her hemoglobin remains normal. At the 4 weeks mark the very nasty platelet killing Hydrea was halved to only 500mg.

It is still too early to say how much improvement my partner will achieve over time, especially when I can double her protection from 12/7 to 24/7 in 2009 when memon's personal model is expected to be released. We are hopeful that the future will hold an even further reduction in the hydrea from its present 500mg. It's an awfully wild and outrageous hope from the the medical profession's point of view but we hope to reverse the disease or at least reduce her medication to negligible amounts a path that the last 6 weeks of blood tests shows we are well on the way to achieving.

From our limited experience it seems EMR is heavily implicated in some of the side-symptoms (excess platelets and pathetic hemoglobin levels) which would suggest that it was probably EMR which caused the disease in the first place - probably from the intimately very high EMR levels from my partner's now destroyed electric blanket. As the world is sold the dummy that EMR is safe by the wireless technology manufacturers and people are subjected to 24/7 ever increasing radiation I believe the only way the incident rate will go is up, probably dramatically.

My father was diagnosed as well, since then i have met another person with the illness as well. However my father doesn't let us know what is going on with him and it makes it even more scary for us.

Is this a disease that seems to be on the rise? I now know 3 people in the last year, including my father that have been diagnosed with myelofibrosis, which seems odd considering 1 in every 100000 has been previous stats.