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I'm struggling with the knowledge that my father has this horrible disease. He received this dx a week ago, and with all the research I've done, his life expectancy is about 1-2 years. Dad's not talking to anyone, and that bothers me. I know he needs help, and won't accept any at all. He won't even talk to me, who has the knowledge and can provide total support. I've gained so much inner strength, and have no clue whre it came from. nurse We live 3,000 mile apart, which really makes things difficult for me. I also have not one person to talk to, so I'm working hard on my coping mechanisms. It's hard, as I feel something is wrong as I have cried briefly once. I do accept the fact he has cancer. I just don't know if his form is hereditary. I should add that he did have benzene exposure for 40 years as an auto mechanic. My theory, is, if the gene was present, that could make the diease activate. Question I will tell you, I'd be lying if I told you I'm not petrified. I am. This whole cancer thing and poor prognosis scares me half to death scared Any an all information will be greatly appreciated. Thank you.
Christine 4you
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First Helper light1v3
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replied December 21st, 2009
Thank you so much for your reply and the info to a chat area to receive the support that I need. I still feel selfish asking for help, but I know if I don't get support for myself, I don't think I can hold up my strength for my dad or the rest of my family. Especially my kids, who are very close to my father. From the bottom of my heart, may God Bless you, and Merry Christmas/Happy Holidays.
Chris
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replied December 23rd, 2009
my father's mylofibrosis
As it so happens, tonight (actually in about 30 minutes) is the 20th anniversary of my father's death from mylofibrosis complications. I was thinking of him tonight, and thought I'd do a search for new mylofibrosis info, and i got here.

My father was diagnosed 10 years before he died. The docs said 1-2 years, maybe a bit more. My father was not an extraordinary physical specimen, and this was 20 years ago. I have to think technology and medicine has improved the odds by now. I've been through it and I know somewhat how you are feeling. There is hope!

Good luck!
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replied October 27th, 2010
Hi Snowflake,
I was diagnosed with idiopathic myelod fibrosis on the 23rd of Dec 2009. According to my oncologist this was a fatal, non curable, non treatable leukemia and due to my condition, he gave me a very short time to live. I have been symptomatic for 10 years and put down the tiredness and lethargy to my massive workload and long hours worked. After taking 5 ml per day of sodium selenite and 40 grams per day of ascorbic acid, my oncologist couldnâspam�t (wouldnâspam�t) believe I turned it around in 5 weeks. After insisting I must have had blood transfusions (He was on holidays during this period) to get the positive result âspam haemoglobin and platelets back to normal, energy levels high, no weight loss, pain, etc., etc. My white blood cell count was still up, but not noticeably, but he took me off the death list. He was quite blase` when I told him what I took to get the great result, but suggested I move on to Ascorbic Acid IV injections after I mentioned I was heading in this direction. I am back at work and life is looking good. Google Sodium Selenite or Elaine Hollingsworth and follow the links. I took not once ounce of treatment from the oncologist (no chemo). My self treatment including sodium selenite and ascorbic acid worked or was it good luck or divine intevention. I will go with the sodium selenite and ascorbic acid. The luck was all mine.âspam I am also pleased to see that some are discussing natural alternatives on other forums because conventional medicine has no cure for this insidious disease. There is also potentially a Class Action run by a US law firm for myelofibrosis sufferers exposed to Benzene. By the way, I am 61 years of age. Eat organic. Keep fit. Don't drink or smoke. I was exposed to benzene in a printing business I owned for ten years. There is no incidence of leukemia or similar in my family ever. My relatives tend to drop dead from very old age - late 90's to over 100. I don't plan to buck the trend. THERE IS HOPE!
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replied March 25th, 2011
Hello Dalt,
I am 59 years old and have had essential thrombocytosis for over 20 years which is now myelofibrosis. I am feeling fine although my spleen is at the mid line of my torso. I also eat well, enjoy wine, don't smoke and keep myself busy with gardens, books and work. I have always been tired but that is no reason to stop everything I do. Effectively I am very healthy - but life is fatal and we may be earlier than others.
My hemoglobin is 9.4 (up from 8.6) and my platelets and red blood cells are lower than normal. White is just under normal.
Because this is a very rare bone disorder there are few persons to talk to. I really don't know what to expect nor do I feel I must be overly concerned - things will happen as they will and I will deal with them then.
I do find I am empathetic with those who have life ending issues, but find I am not always as sympathetic as I might wish with those whose conditions are curable. There are so many persons with worse and longer lasting problems than with which I may be faced that it keeps my concerns and complaints to a minimum.
My hematologist says this is not a cancer and chemo and radiation are useless - I am pleased since I would refuse to ruin the few years I have left destroying my body and wondering why I felt bad. I think your options of natural alternatives and good sense living is the correct way to go. Although I won't abandon wine - it probably has vitamin C in the grapes and alcohol kills many things naturally.
Nice to know someone out there who is as healthy as we can expect.
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replied October 15th, 2013
Hi Dalt,
Just wanted to ask you about Sodium Selenite as there have been a few negative articles on the toxicity found in many brands. My brother-in-law was recently diagnosed with Myelofibrosis and it's pretty aggressive. Doctor's are pushing for him to get a bone marrow transplant with a 35% chance of survival. I'd like him to try something alternative and your article seems to be the only one with a positive outcome. Can you please let me know what brand of Sodium Selenite and Ascorbic acid you used and how long it took to see results?
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replied April 8th, 2011
Hi Light1,

I am sure a wine or two is not going to ruin your health. One needs a vice after being diagnosed with Myelofibrosis. I agree with your hematologist regarding chemo and radiation being ineffective. I have also read horror stories regarding bone marrow transplants. They at least serve the hip pocket of the medical profession nicely. It is almost 1.5 years since my diagnosis. I am pleased to say that I have no symptoms of the disease and live a normal life. Yesterday I played a 45 minute game of very competitive football. I was initially concerned how I would go, but I found it was easy and I managed to score twice. I currently maintain a daily regime of 30 grams of vitamin c, 3-4ml of selenium and 4 grams of pharmaceutical grade bi carb. I don't plan to vary this much in the future with the exception of the selenium which I will reduce down more at a later date. I consider this daily regime a maintenance level as I was taking huge doses orally of vitamin c when I was ill.

I recommend all myelofibrosis sufferers try a natural regime as the medical establishment have nothing to offer. I hope in the future to be able to report more success story's using natural therapies.

There is hope.
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replied April 11th, 2011
Hello Dalt,

My hematologist also agrees that the bone marrow transplants don't work - at least not at our ages. I don't like medicine and will avoid it as long as possible. But I have a doctor who says that we will deal with the systemic effects as they appear and until then I am as fine as can be. I do have the enlarged fibrous spleen, but it does not cause me any trouble or pain for the moment.

It does take longer to get rid of normal infections but such is life. I don't have normal regimens except coffee in the morning, ice tea in the afternoon, hot food whenever possible, and wine at night. I work full time, garden, read, cook, volunteer for my town and travel whenever possible to see museums and shows.

I think that being concerned with living a good life as fully as possible is best. You could die tomorrow in a car accident, let alone in five years from myelofibrosis. Good to keep things in perspective.

Enjoy - the vitamin C is probably a good suggestion and I will drink more juice and eat more fruit.
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replied October 20th, 2013
is anyone still posting here?
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replied November 24th, 2013
Questions on treatments for myelofibrosis
Hi, I don't know if anyone is still posting?? My brother is 74 and recently diagnosed. He is anemic and has night sweats. The Dr does not offer anything??...because of his age..Please tell me of any alternates that have been helpful...thank you.
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