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Myelofibrosis

Jontue22
Posts: 1
Joined: Jan 2011

Hello- I stumbled upon this board last night and thought I would write. I am 59 years old and was diagnosed with myelofibrosis in November of 1996. I don't know how I have lasted for almost 15 years. In the beginning, of course, I panicked. My husband and I were living in the Boston area then and I immediately went to Dana Farber Cancer Center. I was told that the disease was "in it's infancy" --I was diagnosed after a routine physical at my doctor's office-and put on a trial drug of Interleukin 4. It almost killed me. I went from feeling pretty normal to requiring 2 blood transfusions a week. After about a month and a half, I decided no more-and I have not had any medicine since then, with the exception of Procrit infections and I didn't find that to help at all.

I have never had much pain in my spleen and liver, although they are both enlarged and almost meet in the middle of my stomach. I can feel them. I have never had any bone pain. I haven't seen my oncologist in almost a year. Last February, though, I developed shingles in my throat- huge blisters- and lost 30 lbs. I could only drink ice water. Since then, whenever I get a small cut I have my regular dr. prescribe Cipro as I get infections very easily. I am currently using it as I developed a small cold sore last week that just won't go away.

Aside from going on disability when I was first diagnosed, I lead a normal life. Four years ago we moved to a tiny town in northern NH, 4 miles from the Canadian border. I would say the lack of stress has had a lot to do with my health.

I would like to hear from anyone, really, who has this disease. Perhaps when you hear that I have lived this long it might give you some hope. We are all different, but so far it I have been lucky.

Karen_Lynn
Posts: 5
Joined: Aug 2010

Hi Jontue22-I am 61 years old female and I too have myelofibrosis. I was diagnosed in 2005 and at that time a specialist at University of Chicago told me I would probably live about 5 years. This greatly upset me and he asked why I was crying I told him that I wanted to live longer than that. His reply was "If you expect to live another 20 (years) it is not going to happen." Needless to say, I went to another dr at Northwestern Memorial Hospital in Chicago. My brother is a match for a stem cell transplant and his cells were harvested in Feb. 2006. They are in a frozen state now at Northwestern. My dr thinks that by the time I would need these cellls, I will be too old. (That is a good thing!)In the last 5 years my illness has not progressed much at all. I have been receiving Aranesp injections twice monthly for the last 4 years and have had iron infusions for my anemia. Other than that my MF remains the same. My spleen appears enlarged on the CT Scan, but my drs can barely feel it. I have occasional pain but it is very mild.

I too lead a normal life and I am going to prove that dr wrong! It was good hearing from you. You are an inspiration to me. Thanks

wooden1dr
Posts: 2
Joined: Jan 2011

I am SO sorry to hear that you had such a bad experience with the specialist in Chicago. My first Hematologist told me that he thought I had MF but wasn't sure as he only had four patients in over forty years of practicing (and I was one of the four) with this disease. he wanted me to get a second opinion, which I did, at the Mayo Clinic in Rochester, Minnesota. I met some wonderful people there and formed the opinion that everyone who worked there did so because they WANTED to, not for the pay. Each person I encountered there was VERY kind and even when they had bad news to give they did so with my and my family's feelings in mind.

I have since moved to Central California and now receive my care through the VA where I have met the MOST wonderful Hematologist. She works at the Palo Alto VA and teaches and works at Stanford University as well. I can attest to having the right medical team making a huge difference. I certainly hope that your new doctor has a MUCH better bedside manner.

I have three half brothers and a half sister (VERY long story...) so none of them are a match for a bone marrow transplant. My "team" is still searching for a suitable donor and I have a TON of people who are beating the bushes trying to get people registered as donors.

I had an enlarged spleen until this past September when it was removed. I could DEFINITELY feel it! It was over 12" long and weighed over 15 pounds! Needless to say I can breath again. LOL! My transfusion dependency went from two units (packed red cells) every week to one unit in two months. I was on Danazol (synthetic testosterone) and Prednisone for over two and a half years which left me with osteoporosis in my lower spine. I now only take daily vitamin D/calcium tablets and get an infusion of Pamidronate every three months and take Exjade to bring down my iron count, no other meds.

I sometimes get leg cramps but started taking potassium and magnesium supplements and they seem to be under control. Other than that and the pain after the surgery it's been a relatively pain free experience, though I could do without the bone marrow biopsies... but who looks forward to those?!?

I am glad to hear that you have taken charge of your health and found a new doctor. Here's to your continued good health in 2011 and thanks for sharing your story. Cheers!

Karen_Lynn
Posts: 5
Joined: Aug 2010

Hi Jontue22-I am 61 years old female and I too have myelofibrosis. I was diagnosed in 2005 and at that time a specialist at University of Chicago told me I would probably live about 5 years. This greatly upset me and he asked why I was crying I told him that I wanted to live longer than that. His reply was "If you expect to live another 20 (years) it is not going to happen." Needless to say, I went to another dr at Northwestern Memorial Hospital in Chicago. My brother is a match for a stem cell transplant and his cells were harvested in Feb. 2006. They are in a frozen state now at Northwestern. My dr thinks that by the time I would need these cellls, I will be too old. (That is a good thing!)In the last 5 years my illness has not progressed much at all. I have been receiving Aranesp injections twice monthly for the last 4 years and have had iron infusions for my anemia. Other than that my MF remains the same. My spleen appears enlarged on the CT Scan, but my drs can barely feel it. I have occasional pain but it is very mild.

I too lead a normal life and I am going to prove that dr wrong! It was good hearing from you. You are an inspiration to me. Thanks

Karen_Lynn
Posts: 5
Joined: Aug 2010

Hi Jontue22-I am 61 years old female and I too have myelofibrosis. I was diagnosed in 2005 and at that time a specialist at University of Chicago told me I would probably live about 5 years. This greatly upset me and he asked why I was crying I told him that I wanted to live longer than that. His reply was "If you expect to live another 20 (years) it is not going to happen." Needless to say, I went to another dr at Northwestern Memorial Hospital in Chicago. My brother is a match for a stem cell transplant and his cells were harvested in Feb. 2006. They are in a frozen state now at Northwestern. My dr thinks that by the time I would need these cellls, I will be too old. (That is a good thing!)In the last 5 years my illness has not progressed much at all. I have been receiving Aranesp injections twice monthly for the last 4 years and have had iron infusions for my anemia. Other than that my MF remains the same. My spleen appears enlarged on the CT Scan, but my drs can barely feel it. I have occasional pain but it is very mild.

I too lead a normal life and I am going to prove that dr wrong! It was good hearing from you. You are an inspiration to me. Thanks

Karen_Lynn
Posts: 5
Joined: Aug 2010

OOPS!!!! I am sorry I posted this 3 times!

wooden1dr
Posts: 2
Joined: Jan 2011

Hello Jontue22, it was so wonderful reading your post and seeing that you have survived for nearly 15 years. I'll turn 40 this April and I'd like to see my youngest, a daughter get married and have kids of her own. I know it's not been easy of my wife and kids and it's a huge change to have Daddy home all day every day (we homeschool our three kids too). I was diagnosed about four years ago and told at that time I had about three years. I became more and more transfusion dependent to a point where I required two units of packed red bloods cells a week. My spleen just kept getting bigger and bigger until finally it HAD to go. It was removed in early September last year (2010) and I feel GREAT! My new hematologist is wonderful (my family and I moved from the Midwest to Central California about a year and a half ago and I now get my care through the VA) and she thinks I can see another 15 years now that the spleen is out (it was over 12" long and weighed a whopping 15 pounds!!!) My most recent transfusion was just last week, only one unit, and that was nearly two months from the previous one.

I agree 100% that eliminating stress in your life helps you maintain better health. If I may, what sorts of things do you do to eliminate stress? I plan on starting a vegetable garden to help my family eat healthier and to get outside more often. I also have started exercising now that the spleen is gone and my abdomen is healed (there's quite a scar left!) I was a cabinet/furniture maker when I was diagnosed and I loved my job so I do a lot of woodworking as well as getting into photography.

Again, thanks for sharing your story and for the inspiration and hope it has given me. Here's to your health in 2011!

shapecontrol
Posts: 1
Joined: Dec 2011

Hi Jontue22, I am reading your story. This is really amazing to hear your story. Blessing to you!

My dad was dignosed with Myelofibrosis. His age is 61. The interesting thing is that his spleen and liver is normal, only with his blood counts, especially his white blood cell very irregular, and occasionally his red blood cells and platelets low. Now we are trying ways to help him to live longer. We love our father very much. But we are at our wits, because doctor told us, there is no medication for myelofibrosis, only bone marrow transplant will help.

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