CancerCompass message board discussion started by Happy70 on 4/5/2005 http://www.cancercompass.com/message-board/message/all,1830,0.htm Wed, 20 Aug 2008 00:00:00 GMT Wed, 20 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Am looking to speek to anyone who has myelofibrosis. Please contact me? Happy70 Tue, 05 Apr 2005 00:00:00 GMT Dear Patrica, my name is Melanie and I am 56 years old. I have ihis condition. I have only know about for 3 months. So far my heomglobin is up again fron 7. I have had one transplant,but I am in pain most of time. I think it is my liver and spleen. How can I help you? Beloved49, Melanie Beloved49 Sun, 10 Apr 2005 00:00:00 GMT Dear MELAINIE thank you for replying it has been one month and you are the frist person I have heard from so thank you please fill me in with what you know so far you can reach me here. Pat. Happy70 Mon, 11 Apr 2005 00:00:00 GMT Dear Patrica, first of all do you have primary or idopthic Myelofibrosis? Or, like me did you suffer from a previous blood disorder? Myelofibrosis can arise on it's own or be the next step in a blood disorder. Either way, I am afraid it is deadly. Only 2 people in 100,00 get so there is not much research going on. Lucky us. Scar tissue develops in bone marrow causing the marrow to produce less and less blood cells. The symptims are many. The main one is tiredness. Others can be diarrhea, night sweats, painful abdomen, fluid retention, vision disturbances ie;spots and blurring. Others are joint pain and bone pain from the marrow expanding into the long bones. 60% of patients with idopathic myelofibrosis have 5 to 7 years but many patients live 10 years or more. I have heard of some who live decades. It all depends on how fast it goes. I know that this is not a pretty picture but it may not be as bad as it seems. I do not know your age or how long you have had this. There is one cure which is complete bone marrow transplant. This in it's self is very risky. You must be in good health other then the bone marrow disease and have a match. You should be talking to your Dr. and if he/she will not be open with you, get another one. There is no need for a second opinion. I learnd most of this on the internet. All you have to do is a google on Myelofibrosis and you will find more than you want to know. I hope I have helped you. As of now I cannot believe that I have this but for the constant pain in my abdomen. Some days I am really down and cry a lot. I try not to let my children see me but they all know. I have three wonderful boys who are my life. They give me the strength to go on. I also pray. As of now I am holding my own and that is all I can hope for. Patrica, I hope that you are not alone in this. I want you to know that you may post me any time you want, to talk and hopefully laugh a bit. I wish you the very best and advise you to speak of you fears with your Dr. Good luck my friend. I hope to hear from you again. Melanie Beloved49 Mon, 11 Apr 2005 00:00:00 GMT Dear Melanie, Thank you again for your letter here is my story am turning 35 on July 26 god willing. I have no kids no husband and family with me but am strong I do have some good friends. I lost my uterus to cancer two days before my 30th birthday and now this what can I say some girls got all the luck (smile) am happy to be able to share what is happen to me with somebody anybody so thank you I put my email address in but it was remove so am not sure how to get it to you bit if you can read the lines here we go kirton487 at the hot place. Hope you get it. Bye, Pat Happy70 Mon, 11 Apr 2005 00:00:00 GMT I also have myelofibrosis. Was diagnosed a little over a year ago. At first, my Dr. didn't make a big deal about it. Now, she wants me to consider a bone marrow transplant. I have scheduled an appointment with a specialist at the Mayo Clinic. He is one of the few Dr's who specializes in the myeloproliferative disorders with an emphasis on myelofibrosis. He is running some clinical trials. This is one of the most frustrating diseases b/c there is nothing you can "do" to treat it. I have a high platelet count and currently take Agrylin for it. I also have a low hemoglobin count. Everything else is fine ( i.e spleen, liver etc.) On a final note, I find the rarity of this disease very frustrating. I had never heard of it. Neither have any of my friends and associates. Sometimes I get these blank, overwhelmed looks when I tell people about this. It is like they think I am making this up. take care Red56 Red56 Mon, 18 Apr 2005 00:00:00 GMT Hello to all, I am happy to have found a message board. My Mom was dx about a year ago. I am very scared for her and am trying so hard to find help for her. She finished three weeks worth of radiation for an enlarged spleen last week. Her spleen seems to have shrunk, however today she needed three units of blood which took about seven hours.This was the first time she ever needed blood. She was getting procrit shots and yesturday they told her they were no longer helping and she needed blood instead. On top of that he mentioned that the procit was very expensive. What's up with that? I am located in Orlando does anyone know of some good doctors for this. It is obviously very rare. I just would like to know how much time she has. I dont know what to do. Or maybe it might make her feel better to acually talk to someone going thru the same thing it might help. I'll leave my number if anyone might want to talk. Just leave me a message. Tommorow I am going to contact the Mayo Clinic for her. She is not well enough or young enough (65) to receive a transplant. I just have to find a way to give her a little more comfortable time. Sorry the message is long but thanks to anyone who might respond. Cheryla Tue, 19 Apr 2005 00:00:00 GMT Hello everyone it`s Pat am trying to deal with whats happening the best way i know how everyone around me seem to think am making a big deal. but i don`t think they understand how i feel and when i try talking to them they say am thinking to far ahead.Well i went for a walk a few nights ago and when i return home there was a kit on my bed so i can write what i want to happen when i die i was upset and decided not to tell anyone here what is going on with me anymore i fell so alone please someone tell me am i making a big deal of this i feel like i can`t breath bye for now Pat Happy70 Fri, 22 Apr 2005 00:00:00 GMT You are going thru exactly what my Mom is right now. This morning she had another bone marrow and things dont look good. I never wanted to give into her wanting to tell us everything that she wants us to know because it's almost like I'm telling her it's OK to go if I do. I am sorry you are in this position. It's hard for your family as it is for me to hear a loved one last wishes or thoughts. They seem to be giving you a message by leaving that journal. Write your thoughts and desires. Trust me they want to know as well it's just so hard. Good luck to you. Love Cheryl in Orlando Cheryla Fri, 22 Apr 2005 00:00:00 GMT Thank you Cheryla for your words. Am feeling a little better today. How is your mom doing and how are you coping? I will keep your family in my prayers. I do hope everyone who has entered my life on this site is doing fine. Thank you guy and good day. Pat Happy70 Sat, 23 Apr 2005 00:00:00 GMT Hi Pat(Happy?) this is Beloved49(Melanie) I lost this site and just found it today. I quess they want us to use our screen names. First, how are you doing? I am surprised to see so many people with this problem. You have a perfect right to be upset. What we all face is very hard and if you are alone, it's worse. I have come to accept this thing that is killing me and have been reading some books I found listed at another site. They help to clear your mind and try to understand what is happening to you. I am still afraid as we all are and angry that there is no cure for me. At 56 I am too old for TBT. If I were young enough I'd go for it. Hope you get this and that I have the right person. Although it does not matter as we all are in the same boat. write if you want to talk.Why can't we exchange email address? Beloved49 Wed, 04 May 2005 00:00:00 GMT Hello MELANIE and everyone. Melanie I am happy to hear from you again and thank you for your kind words. Melanie and anyone who wants to write me my address is in the 5th letter to Melaine on this message board the hot place means dot com. SMILE people well I hope to hear from someone. Well here I go I had a suprise yesterday I got my teeth cleaned and my gums will not stop bleeding. They don`t know what do so here I am still bleeding am using salt water to wash my mouth the doctor said if it does not stop by 6pm then then they will give me something. So please be careful everyone because with what we have the bleeding is hard to stop. So please keep this in mind and do have a great day. Melanie please can you post the name of the books you are reading? Bye for now Pat Happy70 Thu, 05 May 2005 00:00:00 GMT I am having trouble working this message board. I am afraid I do not know what you mean by at the hot spot as being part of your email address. I hope you get this. I have ordered the books. One book is called "Facing Death and Finding Hope" and the other is called (I think) "CutToThe Bone" When I get the books I will tell you the authors names. I have been told that these books help, we shall see. If you can email me, please do. If not I will post you again and look for your post. Till then, be brave my friend. Melanie Beloved49 Sun, 08 May 2005 00:00:00 GMT Hello All, Melaine thank you for posting the names of the books. I hope everyone is doing well and you all had a great mother`s day. Have a good week all. Happy70 Mon, 09 May 2005 00:00:00 GMT Hi, I live in Australia and am 63 years old. My myelofibrosis is a secondary condition. In July of 1983 I was diagnosed with Polycythaemia Rubra Vera and told my life span was very limited. As you can see, I am still here and confounding the doctors. My blood disease progressed to Myelofibrosis 3 years ago and there is nothing more they can do for me. My spleen is greatly enlarged and so is my liver. I did have radiation treatment in December 2004/January 2005 and it did shrink the spleen a little but it has all now come back in full force. I think, like in your case, it is harder on my children (I have 5) and grandchildren (I have 14). The biggest help is a positive attitude and a smile. It is not the most comfortable disease under the sun, but I think of people who are worse off than I am when things are really bad. Keep your chin up and take advantage of each day you have with your Mum. It really makes you appreciate every moment so much more. Good luck. Madelon Mummyfrog Sun, 29 May 2005 00:00:00 GMT I'm 63 and have a greatly-enlarged spleen that shows "abnormal increased uptake" on a PET scan. The radiologist lists both CML and myelofibrosa as his "differential diagnosis." My blood test has both my red blood cell count and my white blood cell count as normal, but my hemoglobin is low (13.1; normal, 13.5-17.5); my hematocrit is low (37.9; normal, 41.0-53.0); my platelet is low (112; normal, 130-400); and, my RDW is a high (15.2; normal, 11.5-14.5). I am wondering what this suggests to those of you here who have already been diagnosed and who have been going through this. Loophole Mon, 30 May 2005 00:00:00 GMT Hi Madelon, I also have secondary Myelofibrosis. I am 56 years old and before my blood disorder turned into Myelofibrosis I had never heared of this disease. Could you explain why you can not have a stem cell transplantation? I was told that I have either 4,7,and if I am lucky 10 years.My liver and spleen are also greatly enlarged. Hope to hear from you, Melanie Beloved49 Fri, 10 Jun 2005 00:00:00 GMT Hi Melanie, Apparently when you get to a certain stage in the Myelofibrosis process, there is nothing much they can do at all. In my case the bones are just one fibroid mass and they have not been able to aspirate bone marrow for some time. All intervention becomes dangerous because your spleen and your liver do not only perform their normal duties, but they also actually go into the bloodcell production business. This means that your body only manages to produce immature cells and as in my case, it wipes out your immune system so that everything becomes a bit of a drama. All they are doing with me is monitoring the progression of the disease and giving me painkillers for the bone pain. The spleen gives me grief at times as well but not so much as the bones. I have actually been taken off all my meds. I was taking Hydrea 500mg daily, which in itself was a reduced dose but now they feel that it would cause more problems than help. I wish you good luck. Know at least that you are not alone. That was my biggest problem. I just felt so alone and unable to relate to other people. Hope we can help each other through this. Madelon Mummyfrog Fri, 10 Jun 2005 00:00:00 GMT Hi Madelon. I am so sorry to hear that you are in much pain. That is what I fear the most. I too am being monitered but I also receive Procrit(?) I have only know of the disease for about 5 months. At first My hemoglobin droped to 7 and I had to have a transfusion. Now with the help of the two Procrit shots every two weeks, it's gone back up tp 10 and my platlets are 150,00. My Docter says that someone up there must like me but he always tells me that it is just a matter of time. He also told me that there was no BMT for my Myelofibrosis. Why I do not know. When I first learned of this I was so angry and I cried and cried. Boy did I feel sorry for myself. I kept thinking of all the things I would never live to see. Grandchildren, Paris, the world that I had hoped to travel and now never will have the time but enough of that. Now I give thanks for each day that God gives me. Everything I see takes on new meaning and I keep a journal for my boys. Most of the time I am in pain from an enlarged liver and spleen. It's not too bad as of yet and I only take Acetami/Cod. It really does not help much but I don't want to become saturated with narcotics till I have to. May I ask what they are giving you for pain and are they good about giving you as much as you need? As I said I am not too good with pain. I am so glad that we have met as I was truly alone and even my family could not understand what I felt. Sure my Dr. says maybe I will get lucky and live for 7 or 10 years and to me that is just not enough time but I will take it. I hope that I will hear from you again and that you are not in too much pain. Maybe we can get through this together my friend. I believe that you must have hope so please keep hope close to your heart. I will keep you in my prayers. Till we speak again, take care, Melanie Beloved49 Sat, 11 Jun 2005 00:00:00 GMT This is my first time in here and i am so glad to find a place that i can talk to people. My husband was diagnosed with Myelofibrosis seven weeks ago after a bone marrow test, he had been feeling tired and out of breath, doc did some blood tests and the result of these meant he had to go to hospital. The same day the bone marrow test was done he was told he had to stay in because he was at risk, over the next few days he was given four units of blood. Then we went back three weeks later and was told he was to have another 3 units that time he was a day patient in from 8-30 am till 6pm. back again two weeks later and he needed blood again but he now has a high iron content,so they are going to wait another two weeks, but if he gets very tired then we have to go back to hospital quicker. i'm sorry for going on but like everyone in here all the information i can get is off the internet, but meeting you all in here makes me feel that joe and i are not alone Sally 1 Tue, 28 Jun 2005 00:00:00 GMT I know what you mean about the blank looks. And so many say, "You look well." I was diagnosed Aug 2001 and have been looking for another person with this in my state (Maine) for four years. None so far! I've been attending a general cancer support group and a Leukemia, Lymphoma, Myeloma Support group. They have been helpful but it would still be good to talk face to face with someone that it would not require a complete medical dictionery explanation for them to understand. Blessings, Dayxday Dayxday Tue, 20 Dec 2005 00:00:00 GMT I am 61 and was diagnosed with Myelofibrosis in August 2001. This is a capricious condition and affects people differently. I have not found a doctor that is willing to discuss "how long do I have" yet. Has your mother given her doctor permission to discuss her condition with you? If so ask! A good doctor will answer any question to the best of his/her ability. Blessings, DayxDay Dayxday Tue, 20 Dec 2005 00:00:00 GMT About 15 years ago I was told I had a myeloproliferative blood disorder evidenced by a very high platelet count. No treatment was recommended. Suddenly in 2004 the platelet count dropped significantly (back to within the normal range) but the red blood count and hemoglobin also dropped to below normal. In March 2005 my spleen enlarged and after a bone marrow aspiration I was diagnosed with idiopathic myelofibrosis. I am 61 years old, work full time, have no pains or discomfort to speak off other than night sweats. (Does anyone know how to reduce night sweats?) I am now taking procrit once a week (40,000 units) to stave off mild anemia and stay at the minimum normal RBC and hemoglobin level and do monthly CBCs for monitoring. Doctors have told me that I will need a bone marrow transplant at some time in the future and I have a sibling who is a match. My doctors don't subscribe to the idea that no transplant should be given to anyone over 55 and go as far as 70. What is so unsettling, however, is not knowing how this disease will now play out. I do not know what plans to make in the interim. Will it be one year, two, five? They can't tell me. A bone marrow transplant will put me out of commission for about a year I've been told, which means that my job would be lost too. Only a few people in my immediate family circle know about my condition but not at work or any of my friends. Is there anyone out there with a similar situation who might have some concrete advice? Upbeat Wed, 21 Dec 2005 00:00:00 GMT Upbeat, your circumstances are similar to mine. I was diagnosed at age 61 (Jan 05)with idiopathic myelofibrosis only because my physician was concerned about my anemia and referred me to a hematologist to check it out. I am doing well and am almost asymptomatic - very little spleen enlargement and the anemia has decreased also. I'm not on any meds at this time. But I have night sweats, fatigue, and lately diarrhea (? is this related). My doctor pushed me to get a consult for a BMT in spite of my age and I am lined up to receive one - when my condition worsens. By then, I may be too old to be considered. Does anyone know the age of the oldest successful transplant? Doctors really scare you about having one but - what are the options considering the prognosis? Froglady Mon, 02 Jan 2006 00:00:00 GMT My husband was just diagnosised with myelofibrosis, and is still feeling fine at this time is not getting any treatments, but his liver and spleen are both enlarged, and is feeling some discomfort from the enlarged spleen the doctor said he has maybe had this condition for a few years. two years ago we started with protein in the urine wonder if others have had this problem. he is still able to work he is 61 years old. there is a new drug that they might try called lenalidomide, when it come to the point he needs something. wonder why we have to wait until this gets bad., before medication is given. I am having a really hard time dealing with this. pete Pete 2 Mon, 23 Jan 2006 00:00:00 GMT Hi You are the same age as my husband that was just told he had myelofibrosis , was wondering if they have started any treatment on you . He feels fine yet too and is able to work. but is really tired. the doctor has not put him on any medication at all. I feel like they should try some of this new medication but wonder why there is a waiting game we just go in once a month for cbc. he said there was a new medication that they could try expensive but at this point any thing is worth a try. My sister was put on this med. as a trial for her bone cancer and is doing lots better after 2 months on it her blood tests are coming back a lot better and expects to be in remission after next month. the med. is revlimid also taken with prednisone. next time we see the doctor I am going to tell him we want to start on somthing or maybe go to mayo see what he says. hope you are doing well . pete. Pete 2 Wed, 25 Jan 2006 00:00:00 GMT Thank you for reacting to my earlier message. I am surprised that you are not receiving some medications such as procrit to fight anemia. Night sweats are common with this condition and in some write-ups diarrhea is mentioned although not in all. I do not have that symptom. My procrit injections seem to keep me from becoming fatigued and the cbc's continue to be stable although the white blood cells show some abnormality. My spleen is working overtime but it is not painful, liver is normal. Has there been any change in your spleen or liver? As far as the upper age range for a BMT, doctors here tell me they go as high as 70 at the City of Hope in Duarte, CA. You are right though, there don't appear to be any options in the long run. Upbeat Sun, 29 Jan 2006 00:00:00 GMT If you suffer from severe fatigue you should be on procrit or something similar. Is your doctor holding off on a medicine due to other factors? Upbeat Sun, 29 Jan 2006 00:00:00 GMT my husband has not been put on any thing for his anemia as they said it is so little at this time but next time we see the doctor I am going to tell him as soon as he sits down he is alsleep things might have changed in his blood work in the past three weeks too. has any one been put on a medication that has slowed down this? I can hardly think of any thing else except his health. hope all is well. Pete Pete 2 Tue, 31 Jan 2006 00:00:00 GMT Ask your doctor about procrit and if that would help. This is a rather expensive medicine (about $2,000 a month I've been told by the pharmacy) and is self injected once a week. It helps to raise the red blood count. My insurance is covering all of it so in my case cost is not an issue and self injecting is a rather simple procedure very much like insuline injections. Is your husband also having fatigue symptoms at work? Upbeat Wed, 01 Feb 2006 00:00:00 GMT Thank you, I will ask the doctor about procrit Our insurance will also cover this medication. he seems to be doing fine at work he does work long hours , so that could be why he is tired. also I know it is a part of this. nothing is really bothering him at this point except his spleen being inlarged. Pete Pete 2 Wed, 01 Feb 2006 00:00:00 GMT My father was diagnosed in December 2005. Fatigue is a big issue. We have seemed to conquer this with natural juicing, carrots, apple and parsley, glyconutrients and vitamin B supplements. He too suffers with spleenomegaly a common occurance with this diease as the organs are trying to store and "make" the marrow the bones cannot. I would suggest that you really research Revlamid. The recent study going on at my hospital had large numbers of drop outs due to the side effects. There comes a point in time where you stirve for quality of life not quantity. Not all cures come from a pharmacy. No doctor is "all knowing". They put their pants on one leg at a time just like us. Do your homework. Research, research, research. I have spent countless hours in a medical and regular library. Find a physcian that will talk on your level and see you as a person not another office visit. Support and attitude go a along way with any terminal dieaase. Keep you chin up. Celebrate every point that gets better in the lab work. Juicing also helps get required nutrients and seems to be easier to tolerate since at times he doesn't feel like eating due to the presssure of the spleen on the stomach. Wishing you the best! Radiationruth Mon, 13 Mar 2006 00:00:00 GMT Dear Radiationruth: What is your father's age and how was his condition diagnosed? Has his spleen been enlarged for a long period of time? I'm also curious why you don't mention procrit injections to fight fatigue over the short term and a bone marrow transplant as a long term solution. Do you have any blood count data you can share? Upbeat. Upbeat Mon, 20 Mar 2006 00:00:00 GMT Upbeat: Love your name! Dad was diagnosed December 2005 thru a routine blood test for a routine physical. His regular doctor then sent him to a hematologist who immediatley did a bone marrow biopsy. It was ONLY AFTER the biopsy that my parents sent out an e-mail informing us (their kids) what had taken place. To make a LONG story short; Dad wanted me with him when he learned the results of his biopsy. I am the only one of their 5 children who work in health care. He was hoping, I think, that I would have answers. I was VERY disappointed with the attitude and the dismissive behavior of his original hematologist, and used all my contacts to secure a wonderful, caring, and knowledgable hematologist. Again, not liking the diagnoses myself, I again used all my contacts to procure "visiting hours" at the residents library in our hospital and password codes to journals, research and study logs. All this information can be found in any good library or if you have alot of time and energy some you can find on the net. Dad just turned 70 in December 2005. I have worked in health care for nearly 17 years and if it's one thing I KNOW for a FACT - ONLY AN IDIOT WILL NOT QUESTION THEIR PHYSICIAN. Get the facts! NOT everything that heals is from the pharmacy. I'm not saying that there are NO treatments available, they seem to be making progress each day. HOWEVER... When you factor AGE and diease progression...I think it's a personal choice. The current Revalmid studies are coming back negative. High drop out numbers due to side effects. Get the reports at NCI. This is not a "wonder" drug. Unless of course after getting the information on the study and you read the 4 pages of side effects do you "wonder" why they think this is a good thing? Sorry, on my soap box again. Dad's spleen has been enlarged for some time. It is palpable and visual. The CT scan shows a large mass (hemopetiesis) in the spleen. This happens when there is no bone marrow in the bones and the organs are trying to "make" marrow. Eventually, this will cross over into the liver and enlarge it also. Should this happen, he will experience jaundice, portal hypertension and be prone to clotting. (strokes, embolisms). He will also have increased joint pain in the shoulders and upper legs and the bone scars down on it self. They tell us there's no cure. They tell us since he's 70 BMT will not be considered. Still, we fight. No one lives forever, and my family is comfortable with that. But until it's time to "turn off the lights and go home", we'll be in the trenches fighting, researching and trying. Our labs have been holding steady for the last 2 months. RBC 5.34 and WBC 1.23. He's not up to a 26K marathon, but then he says, he wasn't before either! Still doing weekly labs. I'm not sure if it will help you, but here's what I look for. If HCT is INCREASED or normal = INCREASED chance of clots. Increase in Leukocyte Alkaline Phosphate falls as diease worsens. Increase in serum uric acid as diease worsens Increase in Indirect bilirubin = RBC destruction. Increase in LDH = inefective cell destruction If Platelets fall below 20,000m3, and HGB is below 7.0/g and HCT below 21% transfusions may be necessary. Everytime we draw a steady lab we're greatful and the party's on, light the grill, put the ice cream maker in the sink. Taking it one day at a time. Living for QUALITY not quantity. So far we've beat the odds already! His original "all knowing md" only gave him 2- 3 months. I LOVE to PROVE them wrong. KEEP THAT TEMPO GOING UPBEAT! I'm with ya. Radiationruth Radiationruth Mon, 20 Mar 2006 00:00:00 GMT dear I need more information about myelofibrosis, and i want know treatment,research, and more information best regards dedy Zion-delarue Wed, 05 Jul 2006 00:00:00 GMT I myself am looking for info on this disease as I was recently diagnosed. All I can really find out on my own is that it's a debilitating disease with no cure.I have yet to have any kind of medication for mine, my oncologist wants to try the ole lets wait and see what happens approach which I'm not happy with. Viv_c Thu, 06 Jul 2006 00:00:00 GMT Hi, I'm sorry to hear of your diagnosis. I'm in my mid 40's and was diagnosed 2 years ago with Myelofibrosis. I don't know what stage you are in, but there are medications to control your plateletes and help with your red blood cells and can lead to a higher quality of life for the duration. Have you done much research on the internet for options? There are a few drug studies that might interest you. What is hardest for me is that for now I have chosen to not let folks outside of my family and very close trusted friends know of my condition, I take a lot of drugs, but have few outward symptoms. Please write back, I will share what information I can. Be hopefull, be strong. Loveandenjoy Sun, 23 Jul 2006 00:00:00 GMT Hi, I'm sorry to hear of your diagnosis. I'm in my mid 40's and was diagnosed 2 years ago with Myelofibrosis. I don't know what stage you are in, but the old wait and see is a very good thing. But, it sounds like you want to take some action. Have you had a bone marrow biopsy for your diagnosis? What do your CBC's show? Taking medications with all the side effects, in my opinion, should be put off as long as possible. What did your doc say about asprin? What is hardest for me is that for now I have chosen to not let folks outside of my family and very close trusted friends know of my condition, I take a lot of drugs, but have few outward symptoms. Please write back, I will share what information I can. Be hopefull, be strong. Loveandenjoy Sun, 23 Jul 2006 00:00:00 GMT Dear Folks, Sorry about the multiple postings, I'm learning this website. It was good for me to read the past posts, there seems to be be lots of correct and good information. Enjoy! Loveandenjoy Sun, 23 Jul 2006 00:00:00 GMT HI, nice to hear from you. My doctor is of the ole let's monitor your labs for the time being and see what happens. According to him I am in the early stages and this is the best option for me. I was diagnosed with rheumatoid arthritis about 3 yrs. ago and that is when my anemia raised red flags with the doctors, altho I have been anemic for most of my life it just didnt register with my family doctor that there might be a cause. My RA doctor finally sent me to an oncologist who said all you need is iron tablets, take these for 6 weeks come back and see me. That didnt even budge my count. I was then given Procrit shots for 5 weeks and after the last one my count was up to normal finally, so he said again, come back in 6 weeks for a final checkup and I will release you. Upon returning my count had fallen back to where it was so I had my bone marrow biopsy and that's when I was diagnosed with myelofibrosis. I think he feels like since I am so young, compared to when people are normally diagnosed that I have plenty of time before I need to start worrying about this. According to all the research I can find on the computer that is not the case at all. I tried asking him about the bone marrow transplant but was more or less told to quit reading on the computer that it was full of nonsense. Viv_c Mon, 24 Jul 2006 00:00:00 GMT Wow, this website is so hard to use. My email is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- All Y'all come. Anyone who reads this please feel free to email me at anytime, use Myelofibrosis in the address line or some thing personal and I'll find ya. Dear Viv, My Mom's name is Vivian.....you too? Some questions, what is your age range. How bad is your hematacrit levels. PAY ATTENTION TO YOUR CBC's Girl! Hey, does your Oncologist realy dismiss your concerns like that, if he does, GET A NEW ONE. You and your doc need to work as a team, if getting info threatens your doc, get a new one. Bone marrow transplant is no easy thing. I think most folks have heard about the gal that won the Alaskan dog sled race, Ididarod, three years in a row, she (the strong, strong, strong goddess that she is) is in the Seattle Cancer Center right now having a BMT, (July 2006). Just GOOGLE Susan Butcher, on her site is a link to "my status.com" and you can look through the journal entries her husband is posting. None of them are easy to read........expecially if you may some day have a BMT. I was diagnosed over two years ago, I had high high platelettes. Three years ago they caused multiple blood clots in my body and lungs. Bad Scene. I'm here to talk about it and that is what counts. Hemotologist came up with the M word, I was totally anemic, (less than 8 hematacrit) and got on to Aranesp and Anagralin. Anagralin reduces plateletts but has bad side effects (like death). After moving to an insurance that would cover BMT I switched to Procrit and Hydrea. Procrit has boosted my Hematacrit to 12.2 and Hydrea (less side effects than Agralin) helps keep plateletts down. If you don't understand what this means, study up on what the bone marrow does. It is very important for you to understand and do every thing in you power to keep your marrow healthy. I have retired from the constrution industry to maintenance. The pace of construction is just too much for me anymore. Hydrea did not make my hair fall out, but I have a reduced immune system and a cold or flu can realy cause problems. There is a quote I like, but I can't remember how it goes...."dance like no one is watching, love like you have never been hurt and laugh like........" Warmest regards, Suzanne Loveandenjoy Sat, 29 Jul 2006 00:00:00 GMT Hi my dad has myelofibrosis and diabetes he has had this disease about 4 years but for the past year he has been getting blood every 2 weeks. he is on some medicine call thelamide because the hydrea doesn't work anymore. he has a large spleen his blood after 2 weeks goes down to 8.2 platlets 33,000 and he gets skin sores and pain in his stomach. he gets alot of indigestion and can not eat because he feels full .he went down from 170lbs to 135lbs can anyone with this problem please tell me what they do to relieve the indigestion part because he stops eating when he gets it and he has to eat because of this disease sorry if there is any spelling errors its because its late and I am tired. thank you Lionassad Thu, 10 Aug 2006 00:00:00 GMT You did not say anything about your Dad's age. His counts are very low and the enlarged spleen is probably not leaving enough room in his abdomen to take in sufficient food. Indigestion can be softened a number of ways, his doctor will probably have prescribed some already. Is your Dad a bone marrow transplant candidate? Has he gone through a period where he took procrit shots to alleviate anemia. I am 61, spleen enlarged to the point of uncomfortable sleep on my left side. Blood counts: White cells 8.7, Red 4.3, platelets 232 hemoglobin 11.4 and some blasts are seen. Only medicine is a procrit shot once a week + wait and see recommendation. Although it's anyones' guess I expect to receive a BMT within the next five years. I have an older sibling who's a match. This disease is a Damocles sword. I wish you well with your Dad. Upbeat Upbeat Thu, 10 Aug 2006 00:00:00 GMT I am so sorry about your dad, it seems like all doctors try the ole do nothing approach. I took procrit shots when my hematologist thought I was just suffering from anemia. After I had a biopsy and the results came back as myelofibrosis I was taken off the shots and told for the time being I was just going to have to be anemic. He ( my dr.) doesnt want me to have any kind of medication until my blood goes down to a 8.5 and stays there. As of now it varies between a 11 to as low as a 8.8. It is very frustrating to want to do something and be told let's just wait. I am only 39 so he thinks because of my age it is in the early stages and not worth getting upset about just yet. Viv_c Fri, 11 Aug 2006 00:00:00 GMT My husband (age, 35) was diagnosed Dec 27, 2004. He had a BMT in June 2005. The BMT is a very long, boring, wild, difficult, different, journey. It is esp difficult with 3 young children that need to be taken care of during the 100 day isolation period. My husband has done remarkably well. We were told that a BMT was a cure. However some 10 days ago we found out that the Myelofibrosis is taking over again. That is why i am searching web sites, to see if anyone had a BMT to cure myelofibrosis and it came back. I do know of a family who lives in our area and the husband (early 40's) with same diagnosis had a BMT some 7/8 years and he is doing well with no evidence of MF. My husband and I chose to have the BMT b/c we wanted him to have it while he was young and healthy. He had his spleen removed one month before transplant. We will find out late this week what our game plan is. Moegreen Sun, 03 Sep 2006 00:00:00 GMT I'm very sorry to hear about your husband having such difficulties. From your message it would appear that the bone marrow he received is failing again. One sometimes hears about graft v. host disease problems, and perhaps that is related to this. Was the spleen removed because of severe enlargement? Will your husband have to undergo another transplant? I am glad you mentioned the hardship it puts on family members. It will help us to prepare for what's ahead. I am a 61 year old BMT candidate but with blood counts that are still not low enough to force a transplant. I wish I could come up with something that would be helpful. My very best to you both. Upbeat Upbeat Tue, 05 Sep 2006 00:00:00 GMT My mother Helen, age 88 was diagnosed with myelofibrosis, and I'm trying to learn what to expect...I have learned a lot, but here's my question: Her right elbow swelled up...is that part of it, or is it not at all a symptom? Caringheart Thu, 28 Sep 2006 00:00:00 GMT I do not recall ever hearing about swollen elbows or joints due to myelofibrosis. Is your Mom's doctor not answering this question? Upbeat Fri, 29 Sep 2006 00:00:00 GMT I do not recall ever hearing about swollen elbows or joints due to myelofibrosis. Is your Mom's doctor not answering this question? Upbeat Fri, 29 Sep 2006 00:00:00 GMT Hi Cheryla, My mother has it too, but she's 88 yrs old and has pretty much enjoyed a long life. She has received 2 units of blood twice, a year apart. It took about 11 months for it to start "wearing off". I'm finding this board very complicated. I asked a question and I guess nobody answered because I can't find an answer. Has your mom had any swelling of joints with this? My mom's elbow just swelled and is painful, and i can't find out whether it's part of the disease. She also has Parkinsons, and chf, so it's REALLY HARD to get her to the dr.s office! God bless u and your mom, I hope she can remain comfortable for a long time. Maureen Caringheart Fri, 29 Sep 2006 00:00:00 GMT What a brave and special lady you are! I pray that you will be comfortable and continue to be a blessing to your kids and grandkids, which it really sounds like you are. Maureen Caringheart Fri, 29 Sep 2006 00:00:00 GMT My heart just goes out to you...you sound like such a loving and caring person, and I'm so sorry you have to go thru this. My mother has had mf for about 3 yrs., added on to Parkinsons and CHF. The rare type of Parkinsons she has has rendered her unable to speak, so she can't tell me much about how she feels. She always pulls her pajama pants down around her hips to sleep, so I guess her abdomen must be in pain. Her elbow recently swelled up, and I was trying to find out if that's part of the disease..I think you answered that one. God bless and comfort you. Maureen Caringheart Fri, 29 Sep 2006 00:00:00 GMT Her dr. seems to have the attitude that "she's 88, what...you want her to live forever?" I need to get there with her, which isn't easy, since she has Parkinsons and low red blood count, she's very hard to move. I wish we could find a dr. who'd make a house call. I've had mom here for 7 yrs. and have been thinking of having her placed in long term care, but she has very little speech, which makes it impossible for her to make friends or be social, and causes health care professionals to treat her like an idiot...also, i can't find a place we can afford that's nice and clean and safe. Caringheart Fri, 29 Sep 2006 00:00:00 GMT Hi Melanie and whoever else might read this post. I celebrated my 64th birthday on the 26th of March with all my children, their partners and some of my grandchildren and I must say it was absolutely amazing. I'm sorry I haven't posted for so long but for a long time I was battling depression and fatigue and I frankly didn't think I would ever get out of the fog I was in. However, here I am (STILL). My doctors are amazed that I'm still around, and so far I have avoided the dreaded blood transfusions. I am anaemic and my platelets are pretty low. My LDH levels are very high so I guess my poor body is fighting very hard. I am now off most medication except for pain killers. For that, they have put me on 50mg morphine in capsule form twice daily and also Panadol which does help a lot with the bones. My children are a lot more accepting of my condition now. It isn't any easier really but we tell each other "I love you" a LOT! I am also always emphasising how special they are and how proud I am of them and have formed an amazing bond with my grandkids. I live each minute of each day to the fullest and do whatever I can whenever I can. Life is to be lived and I consider mine a gift. Please keep smiling. It is easy to fall into a depressed mood, but that really doesn't do anyone any good. I shall keep up with the message board more regularly from now on. Take care Madelon Mummyfrog Sat, 30 Sep 2006 00:00:00 GMT Hi Caringheart, I have Myelofibrosis too and have never had joint swelling although I do occasionally have joint pain. It must be difficult not to be able to communicate with your mother regarding her symptoms. I can tell you some of mine though which might be able to assist you with hers. I can quite understand her wearing her PJ's around her hips as any pressure around her waist would be very painful. I find that by the end of the day, I can't have any pressure at all on the spleen and liver area as they become very painful. She is probably also having a lot of pain in her long bones, in both arms and legs and the shoulders seem to be greatly affected as well. I find it difficult to wear bras for long periods as the rib area also becomes painful. You sound fabulous and very caring. I think at the end of the day, nobody can really understand this awful disease unless you have experienced it in some way. Just keep loving your Mom, that is the best gift you can give her. I know that the love I receive from people around me helps me a lot. Take care Madelon Mummyfrog Mon, 02 Oct 2006 00:00:00 GMT I would just like to wish everyone better health and high blood counts in the coming year. This past year has been rough on us so with a little luck and a lot of prayers maybe we can get thru 2007 in better shape. Keep those spirits up and try to count your blessings each and every day. I am holding steady with mine, some days are better than others but I try to meet each one with a smile and a lil laughter. God bless each and every one of you. Viv_c Fri, 08 Dec 2006 00:00:00 GMT  On 12/8/2006 Viv_c wrote:I would just like to wish everyone better health and high blood counts in the coming year. This past year has been rough on us so with a little luck and a lot of prayers maybe we can get thru 2007 in better shape. Keep those spirits up and try to count your blessings each and every day. I am holding steady with mine, some days are better than others but I try to meet each one with a smile and a lil laughter. God bless each and every one of you.I would like to thank you for the well wishes, and extend my own to all those who frequent here.  I hope this new year finds you all with positive outlooks. I realize this thread has not had much action for a while, but was hoping by posting, maybe I let this thread be re-born again with some activity.I was just diagnosed with myelofibrosis.  I have read all I can find online, and have reached a point of mental overload, so I can't even begin to think of a question to ask.  Still getting over the shock, I suppose my only concern is how much of my 12 year old twins lives, am I going to get to continue to enjoy?  For a rare condition with no cure, there certainly is a wide range of time frames regarding expectations of life. Thank you for allowing me to take up space on here, and I hope you all have a great day! Eeyoretwins Tue, 16 Jan 2007 00:00:00 GMT My husband is 43 years old. He was diagnosed with myelofibrosis when he was 27. The biggest advice I can give, and this may sound weird but, tell anyone you know who is in their 20s to get life insurance as soon as they can. We were young when his symptoms started. He used to play basketball with a friend, and toward the end of one summer, he would come home exhausted and his joints would hurt. His primary care doctor chalked it up to a virus and said it would go away. Meanwhile, he was promoted to associate director at his company. When he was filling out forms, he checked off the boxes for long-terms disablity, short-term disability and accidental life insurance. He figured he was too young to worry about regular life insurance. The firm required everyone in management to get an executive physical. That was when our process began. The doctors noted his spleen was large. They saw abnormalities in his blood. He told them of his feelings of exhaustion and joint pain. They did a bone marrow expiration. They did more tests. They did another expiration. It took a long time for all the tests to be run and the diagnosis to be completed. It came down to him being diagnosed either with chronic myelogenous leukemia or myelofibrosis, depending on a chromosome. He ended up with myelofibrosis. It's been a long haul. He did interferon injections, which brought on horrendous side effects in the beginning (extremely high fever, sweats, nausea). He took a short leave of absence from his job, and then returned. He continued to work through the symptoms of myelofibrosis -- the extreme afternoon fatigue, the fevers, the diarrhea, the mental fogginess that one would feel if with the flu-- for three years. And then there was a changing of the guard at the company, and his new director basically told him that if he couldn't sit in meetings all day and then stay late at night like all the rest of the executives, he was going to get fired. So he went on long-term disability, and has been on it ever since. We have had two children, who are now 11 and 6. They've gotten to spend more time with their dad than most other kids. They know he has an illness because he is sick with something every day--either nausea, diarrhea, fever, exhaustion. He gets cranky a lot because he's always sick. And we're all dealing with that -- some days better than others! But for a disease that takes people in 5-7 or 7-10 years, we've been living with this far longer. For those with young children, recognize this: the disease sucks. No doubt. But it, literally, could be worse. Not that that's what you want to hear when you look at all the healthy people driving their Lexus SUVs to the ski slope. But you'll have time with your children. You'll have time with your spouse. You'll have time to figure out where all your insurance and investment papers are so you can put them all in a safety deposit box instead of four different drawers and shelves around the house. If you reach the point where you can no longer go to work, you can maybe have a part-time career or hobby doing something you always wanted to do. We were married only three years when we were hit with this news. It's been a decade and a half now. Life is strange. PS--To the person who said his friends and colleagues think he's making something up: when my husband was diagnosed, the first thing people asked was, "How did you get this?" But his is idiopathic, and he got tired of saying the same thing over and over again, recognizing that people were just looking to find out if THEY could do something to prevent themselves from getting it. So, and it just proves my husband's cracked, after a while when people at the office got wind of his situation and came up to ask him about it, he would say, "Well, you know how you're supposed to wait until the microwave stops beeping before you open the door...?" And people would get a freaked out look in their eyes. Dark humor.... PPS--We never tell anyone now about his disease. He writes a couple hours a day as a syndicated sports columnist to keep mentally active, and it eases the social aspect of answering, "So, what do you do?" Myelowife Mon, 22 Jan 2007 00:00:00 GMT My husband is 43 years old. He was diagnosed with myelofibrosis when he was 27. The biggest advice I can give, and this may sound weird but, tell anyone you know who is in their 20s to get life insurance as soon as they can. We were young when his symptoms started. He used to play basketball with a friend, and toward the end of one summer, he would come home exhausted and his joints would hurt. His primary care doctor chalked it up to a virus and said it would go away. Meanwhile, he was promoted to associate director at his company. When he was filling out forms, he checked off the boxes for long-terms disablity, short-term disability and accidental life insurance. He figured he was too young to worry about regular life insurance. The firm required everyone in management to get an executive physical. That was when our process began. The doctors noted his spleen was large. They saw abnormalities in his blood. He told them of his feelings of exhaustion and joint pain. They did a bone marrow expiration. They did more tests. They did another expiration. It took a long time for all the tests to be run and the diagnosis to be completed. It came down to him being diagnosed either with chronic myelogenous leukemia or myelofibrosis, depending on a chromosome. He ended up with myelofibrosis. It's been a long haul. He did interferon injections, which brought on horrendous side effects in the beginning (extremely high fever, sweats, nausea). He took a short leave of absence from his job, and then returned. He continued to work through the symptoms of myelofibrosis -- the extreme afternoon fatigue, the fevers, the diarrhea, the mental fogginess that one would feel if with the flu-- for three years. And then there was a changing of the guard at the company, and his new director basically told him that if he couldn't sit in meetings all day and then stay late at night like all the rest of the executives, he was going to get fired. So he went on long-term disability, and has been on it ever since. We have had two children, who are now 11 and 6. They've gotten to spend more time with their dad than most other kids. They know he has an illness because he is sick with something every day--either nausea, diarrhea, fever, exhaustion. He gets cranky a lot because he's always sick. And we're all dealing with that -- some days better than others! But for a disease that takes people in 5-7 or 7-10 years, we've been living with this far longer. For those with young children, recognize this: the disease sucks. No doubt. But it, literally, could be worse. Not that that's what you want to hear when you look at all the healthy people driving their Lexus SUVs to the ski slope. But you'll have time with your children. You'll have time with your spouse. You'll have time to figure out where all your insurance and investment papers are so you can put them all in a safety deposit box instead of four different drawers and shelves around the house. If you reach the point where you can no longer go to work, you can maybe have a part-time career or hobby doing something you always wanted to do. We were married only three years when we were hit with this news. It's been a decade and a half now. Life is strange. PS--To the person who said his friends and colleagues think he's making something up: when my husband was diagnosed, the first thing people asked was, "How did you get this?" But his is idiopathic, and he got tired of saying the same thing over and over again, recognizing that people were just looking to find out if THEY could do something to prevent themselves from getting it. So, and it just proves my husband's cracked, after a while when people at the office got wind of his situation and came up to ask him about it, he would say, "Well, you know how you're supposed to wait until the microwave stops beeping before you open the door...?" And people would get a freaked out look in their eyes. Dark humor.... PPS--We never tell anyone now about his disease. He writes a couple hours a day as a syndicated sports columnist to keep mentally active, and it eases the social aspect of answering, "So, what do you do?" Myelowife Mon, 22 Jan 2007 00:00:00 GMT Hello again, just to update everyone on what's been going on with me. I have just had my first iron infused IV. My hemacrit level was hovering around 9 so my oncologist decided we would try this before starting on the procrit injections again. I must say, I have felt a bit more human the last few days, not as tired as I normally stay, which makes me less cranky; my kids appreciate that. I read something the other day about a new drug they are trying called revlimid, has anyone else heard anything about it? I am going to ask my doctor about it my next visit, but I'd rather have some first hand knowledge from someone actually taking it. From what I can read it is supposed to be really good at raising all levels of the blood. Viv_c Mon, 29 Jan 2007 00:00:00 GMT My husband (53 years old) was on Revlimid for three weeks.  For about 2 weeks he was doing SO well, and then his levels fell like a brick all of a sudden.  He is going to have a BMT next week.  A lady we see at the hospital a lot is on Revlimid and has been for a few months.  She's doing great on it. Clm0706 Mon, 29 Jan 2007 00:00:00 GMT My Dad was on revlimid for a little while. Have you tried it yet? My Dad just passed away Jan 18th from Myelofibrosis. I think it is ridiculous the little amount of information and research that is going on for this disease especially since it leads to other diseases like leukimia. I have started a fund in honor of my father to help raise money and awareness for Myelofibrosis. I have also created a site to help others get more information, talk to eachother and to help raise funds. Check it out. www.freewebs.com/jgrafton This has been a very difficult time on my whole family. God bless all those that are fighting. I wish you all good health in 2007. Julie g Tue, 13 Feb 2007 00:00:00 GMT Dear caregiver & others,I am 57 and was very sad to learn of your dad's passing. I was diagnosed with Myelofibrosis on 14th August 2006 and have a wonderful doctor who is easy to discuss issues with. I have also spent many hours wandering the internet since August and have reached an information overload as to what my future holds. Don't get me wrong, I know what's coming, my problem is I don't know how long what's coming will take to have it's way with me (lucky me). It appears to me from my wanderings that every case is slightly different i what it affects and what is needed to treat it.My platelets are always high and the rest of my blood count is always low. I am on Hydrea for the platelets with twice weekly blood tests because the dosage affects all the blood levels, not just the platelets and have had several transfusions in the past month. I also had severe blood clots in my lungs 3 weeks ago which damaged the right side of my heart and they still don't know why the clots happened. Luckily, I am still here after a week in a CCU unit. I was also lucky enough to have my own stem cells collected when first diagnosed so that was good. Like every sufferer, I have good days and bad days but we (wife of 35+ years) are very positive that we can drag this out for a while yet if we stay positive. My daughter is scheduled to get married in March 2008 and I intend to be around to give her away.It feels good to put my thoughts out there to fellow sufferers and family members as it gets harder and harder to discuss the myelo with people when they ask how you are. Be positive, be strong and have a great day.Cheers, Frank Frank49 Thu, 15 Feb 2007 00:00:00 GMT Thanks for sharing your story with me. I agree with you that positive energy and thoughts can and will help you in your fight. My Dad was always positive and never complained. He had 22 months without a blood transfusion, that was a very happy time for us. I know you will be at your daughters wedding. I only wish that my Dad could be at mine. Stay strong and keep fighting. Julie g Tue, 20 Feb 2007 00:00:00 GMT It'so nice to hear that there is some one else out there, who has been diagnosed with myelofibrosis at such a young age. I am 24 yrs old. Marriad 4 yrs and have a 17 month old son. I was diagnosed with essential thrombcytosis when I was pregnant with my son. I was also diagnosed with high blood pressure at that time as well. Around Thanksgiving I went to the doctor because of fatigue (My husband was getting concerned.) and they did a cbc. My platets were at a million. The doctor called his hemotoligst and asked him what to do. They started me on angylin in dec 06. Awful side affects. The hemotolist did a bone marrow biopsy and confirmed Myelofibrosis. Now I am going to Emory for a BMT. I don't understand why they are moving so fast. My hemo is 14.4. I'm great. Enlarged spleen, fatigue, night sweats, on going fever. I can go on...but other than that I'm alive and enjoying life. My husband has been so great. He does a lot around the house for me because i am so tired from working and chasing my son. I agree on getting your insurance early. I wish I would have. It is so great just to read other people stories, please everyone keep posting. Melissa115 Tue, 20 Feb 2007 00:00:00 GMT Hello There,I was diagnoised with Essential Thrombocythemia when i was 30 years old. I have just turned 40. I didn't have any symptoms with my et, just a high platelet count. I Have an 18 year old son and 2005 i had a beautiful baby baughter she is now 16 months and she is such a blessing to me, so is my son. What am i trying to say here...I dont want to die until i'm 80++. My kids need me expecially my daughter as i'm a single Mum now.Three weeks after i had my daughter i developed a huge pulmonary embolisim (lung clot) that nearly killed me, but it didn't thats to god! I went on wafarin for 7 months. Now off it.I have had ET for years and my doctor said if im lucky it won't progress and she said i should lead a normal life with a normal life expectancy. Last week i went in for my 3 monthly check up and blood test. My doctor said there seems to be a small, very small difference in my blood counts. My LDH went from 300- 489 and my hemoglobin is a little down, but she said i've always been a little low. My red blood cells are shaped funny like tear drops, my spleen is swollen a little. Platelets are 590pmb, which is a good count for me.My hemo said my blood could be progressing to myelofibrosis, but i'm borderline, so she said it could be just an ET thing and nothing to worry about. She wants to do another CBC in 2 months and if my blood has progressed further then i will need another bone marrow biopsy.I pray to God my ET doesn't progress into Myelofibrosis, this cannot happen. I'm so scared. I cant leave my kids. I thought i'd just touch base with someone who would understand and we can email each other if we need to chat. Please email me as i would like to hear from anyone with this, or has had ET and it's progress into Myelofibrosis.Thank so much!Jodie Thank you Jodiemarie Fri, 23 Feb 2007 00:00:00 GMT My doctor gave me a shot of aranesp to make my bone marrow produce, said if this works he will continue them.  The cost to me was a whopping $400. I am getting so frustrated! I am taking so many different things and nothing is working, my doctor gives me such hope that this time it will work, only to go back in 2 weeks for a cbc only to find my counts have either remained the same or fallen.  Most of the time I feel fine other than being tired, but with 2 teenagers I dont have time to give in to the luxury of resting. LOL my resting time is grabbing a book and locking myself in the bathroom. The commode has become my sanctuary. Does anyone know of any foundations that help defer the cost of these expensive meds my doc likes to dole out, my bank acct is taking a beating picking up the cost of what my insurance doesnt pay? Viv_c Mon, 26 Feb 2007 00:00:00 GMT Jodie,I am sorry I haven't emailed you. I still haven't figured out this sight and can't find your email address. I understand you being scared about your ET progressing. I was completely devestated when I found out because I didn't think I had ET anymore. I wasn't getting my labs back from my doctors office for year and half so I thought they were normal. Boy was I worng. I go tomorrow to see the BMT specialist. My sister is a matched donor. I just don't know if I want to go through with this. I have talked with some people at mpd.net, they suggested waiting it out and going to an MPD specialist. I may do that, but by the other posts I have heard the complications of the disease alone can kill you before your bone marrow fails. Some of you guys have had some close calls with blood clots. Yikes! My pocket book has also taken a beating. Do you know how much agrylin is? One thousand dollars a month. I have insurance but they don't cover all. Not to mention I'm on 50 other pills. I will post again after my doctor's appt tomorrow and let you know what I have learned.Melissa  Melissa115 Sat, 03 Mar 2007 00:00:00 GMT Hello Everyone,My name is Angela and I'm 41 years of age. I've just been diagnosed with IMF.I'm married (18 yrs) with 3 wonderful children. My husband is disabled and I "look after" other children as well. I've been trawling the net for about 4 weeks and it's so good to find somewhere that people actually know something more than "textbook". My bloods aren't too bad at the moment, and I've been told to stop the iron as it's doing nothing to help.My symptoms are extreme tiredness (sleeping about 15hrs a day), some joint pain, exteme itchiness (especially front of lower leg), my spleen and liver are ok for now. I just hate the fact that I know my life expectancy is now shorter but don't know by how much! I live in the UK and don't know of anyone else diagnosed with any of the MPDs so this message board/forum is a wonderful find, the reading up to now has given me an introduction to some wonderful people, I look forward to reading more of your comments. Does anyone suffer memory loss as a symptom? I've had some problems but wonder about it's association?Many Thanks. Good luck and God bless Angelac Fri, 16 Mar 2007 00:00:00 GMT I see you are in your 40's and have had this for a few years.  My sister was just diagnosed with Myelofibrosis.  Her main symptom is anemia.  She has had 1 transfusion/month for the last 2 months because her hemoglobin drops to 7.  I was wondering how you've been doing in dealing with this disease.  I'm very worried about my sister and looking for some signs of hope. Thank you very much. Seekinghelp Sat, 17 Mar 2007 00:00:00 GMT My sister was recently diagnosed and is 40, I was wondering how old you are and what treatment you've received so far?  She is still in the early test stages so we are uncertain what treatments she will undergo.Thanks Seekinghelp Sat, 17 Mar 2007 00:00:00 GMT My sister was diagnosed a few months ago, we believe a BMT is in her future.  We too are under the impression it is a cure, and I was wondering how your husband is doing at the present time?  Any information is very appreciated.Thanks, Seekinghelp Sat, 17 Mar 2007 00:00:00 GMT Hello there,The only treatment I've had so far is a 3 unit transfusion before a hernia op about 18 months ago. I was told by my haematologist to stop the iron about 6 weeks ago. at the moment my reds are still slightly low and whites are high. More than anything else just now I'm so frustrated by the tiredness! I've never slept late before and have always love my morning solitude and sanity! Sleeping during the day is completely new to my life and I don't like that much either.My husband is aware ( and a couple of very close friends) that this is going to shorten my life expectancy but everyone else have been told that it's not that bad, and I just have to get used to sleeping more. We decided on that plan because we don't have a prognosis and I don't want people to worry or feel sorry for me.I don't have another appointment until september but I might be asking for an earlier consultation to ask all the questions I forgot before. I'm quite an optimist and illness to me is usually a one-day cough or sneeze so it's all a bit weird to say the least. It hit me psychologically last week for a couple of days and that was horrific as I'm not a worrier either. I suppose I'm in denial if I'm being honest "I'm only 41 and there's no way I'm disappearing before 60" is how I keep thinking, I've too many things to do and people to look after.I hope your sister is a positive thinker and things aren't too bad for her, I don't know if it's been of any help to you but it has for me so thanks for asking. take care and feel free to talk again. Angelac Mon, 19 Mar 2007 00:00:00 GMT  On 3/17/2007 Seekinghelp wrote:My sister was diagnosed a few months ago, we believe a BMT is in her future.  We too are under the impression it is a cure, and I was wondering how your husband is doing at the present time?  Any information is very appreciated.Thanks,My husband had a BMT on Feb. 6, 2007.  He is doing very, very well!  He is on day 45 now.  He got to go home on day 16!  They told us to expect for him to be in the hospital for 40 days.   Right now he goes to the hospital 3 days a week for labs, etc.  The other days he gets magnesium through is port at home.  He had a bone marrow biopsy a week and a half ago and it showed that 99% of his red blood cells are from the donor and 41% of his T cells are from the donor.  His levels are still low, but not like they were before and they are holding or going up slightly all the time.  His ANC is in the normal range.  He did have to have a shot for white blood cells this past Tuesday, but he hasn't had to have a blood transfusion at all.  (Before the BMT he was having them 2 or 3 times a week.)  He feels very good and is acting like his old-self again!  As for it being a cure, we were told that a BMT is a possible cure...and the only chance for a cure.  The let us know for sure that nothing is for sure.  We were told when he left the hospital that it is very common for BMT patients to have setbacks and have to be admitted back in the hospital from time to time and that we should not be discouraged if that should happen.  However, his doctors said he's showing no signs of graft vs. host disease.  We are very optimistic!  Clm0706 Thu, 22 Mar 2007 00:00:00 GMT I too have a lot of fatigue. Unfortunatly since I don't look sick people don't treat me like I'm sick. My husband expects a lot from me and just doesn't understand how tired and weak I feel. I work full time and have an 18 month. That's about as much as I can handle. In the middle of the day is when I'm the worse. I have been so blessed. The agrylin is keeping my platelets in check and the rest of my blood counts have been stable. I have a lot of pain in my spleen and liver. I belive my enlarged spleen is causing edema and reflux. I take 300 mg zantac like candy. I go for a follow up BMB on June 1st I pray that there has been no progreesion. If there is, Emory is talking about a BMT. I'm not looking forward to that at all. I also found out that I have MDS as well. That puts a whole new twist on things. Always something new. Melissa115 Thu, 22 Mar 2007 00:00:00 GMT First of all, thanks so much for the response.  I am SO GLAD to hear your husband is doing so well...16 days is amazing!  Think nothing but good thoughts of a full recovery for him!I am being tested this week to see if I'm a donor match.  We also have three other siblings that will be tested.  Did your husband have a family match?In the meantime, mys sister is starting a treament plan tomorrow.  It is a clinical study.  We are hoping to see some results. I have found quite a few stories of people who have this that had a transplant and are dong very well.  I even found a story of a man who was well over 60 and had a mini-transplant and has been disease free for over five years now!  There is a lot of hope out there and improvements being made to kick this thing!I'd love tohear anything whenever you have a chance.  I feel like I am doing something positive tohelp my dear sister through this time.   Seekinghelp Sun, 25 Mar 2007 00:00:00 GMT Hi everyone, My sister is beginning a clinical trial tomorrow to treat this.  She will receive an injection of  decitabine (chemo) for Days 1-5 and 8-12 then four weeks of monitoring and then repeating that same cycle.  HAs anyone tried this or heard of it?  We hope it has positive effects for her. If it fails, a BMT is her next step.  I have found some positive stories on the INternet of people who have had a BMT for this and are disease free years afterwards.For those over 60, CIty of Hope Cancer Center and the Mayo Clinic does mini-transplants and have cured people with those over the last 5 years as well..just something in case anyone needs to check into it.  There is one success story on their website from a Julius Dix who was diagnosed in 1987, treated until 2000 for his symptoms, had a mini-transplant in 2001 and is in very good health today!   I found that reading such stories give great hope and promise for a good future for all with this illness.  For the person who inquired about memory loss, yes, it is part of this illness.  Low red blood cell count leads to lack of oxygen to your body, including your brain, which causes the forgetfulness.  This is what my sister's doc explained anyway.Bye   Seekinghelp Sun, 25 Mar 2007 00:00:00 GMT We had never heard of this disease before yesterday when my partner was diagnosed at just 37!!! Thank you for your link, every little bit of info helps! We are all in shock here and obviously have a long way to go. my Angel Fri, 30 Mar 2007 00:00:00 GMT Hi All To everyone who has posted something on this site, a BIG thank you, and God Bless! You have all been helping me understand a great deal about the disease and the related drugs etc, for treatment. Anyway, if anyone knows of good juicing tips and/or diet books for helping slow the progression of this PLEASE let me know. I want to start him on a new diet and routine ASAP. On a lighter note I have started calling my man "my one in a million" as this is so rare, although I'm not sure how he feels about his new title to be honest!!! Thanks in anticipation. my Angel Tue, 03 Apr 2007 00:00:00 GMT I posted a message on 8/10/2006 asking for help for this disease for my father.  Like I said the doctor put him on hydrea and that stopped working  after a while (4 years) and  then they put him on a drug thalidemide and that did not work.  He started to get blood transfusions every 2 weeks and his hemiglobin went down to 7 his platelets 22,000.  he had a spleen that was large 17cm and his liver was enlarged he was 60 years old.  the doctor decided to put him on a drug called Inteferon they were shots he took them for a week 3 times a week.  this drug made him feel like he had the flu his temp went up to 103 and his hemiglobin went down  to 5.9 they put him in the hospital for a week gave him many bags of blood and they took him off the inteferon shots.  During his stay at the hospital he was having a bad headache and he never had this before he had it for a week the doctors told him to take tyelenol.   a week later after he was released from the hospital  he had a brain hemmorage (low platelets 17,000)  and he died on 9/16/2006 in the ER room.  the doctors were just trying drugs on him and they didnt know what will work there is not enough research for this disease I guess the drug compaines figure there is no profit in it since its a rare disease.  anyway people have to know what could cause the disease and try to prevent it from happening.  I know my dad was around paint because he painted houses and he was always around gasoline in the garage.  I hate this disease and I wish all of you well who have it.  This disease took my father's life  and it put a hole in my heart.  May God bless him.  Ttmett2001 Fri, 06 Apr 2007 00:00:00 GMT Thank you for sharing your story and I am really sorry that you have had such a hard time! I spoke to my Sister (who is a Genetic Scientist) today about contributing external factors or causes and she beleives that external factors are not to blame for the onset of this disease! So you can be certain that lifestyle wasn't to blame here (petrol or any other substance). How she explained it was that, dividing cells can sometimes mutate as we age and cause diseases, so I guess for our loved ones it was just bad luck! my Angel Tue, 10 Apr 2007 00:00:00 GMT Hello Everyone,I'm quite new to all of this and wonder if anyone can answer my questions please.Is it possible for your spleen/liver to decrease in size after they have become enlarged? I ask because some days I feel no discomfort and other days I do feel quite squashed on the left side below and under my ribs.Is it possible that increased size of the spleen/liver could in turn cause a gastrointestinal hernia? I had 5 admissions to our local A&E in 2005 and on the final admission they wanted to operate immediately but realised I needed a 3 unit transfusion first because my reds were so low, (they thought a hysterectomy would correct the bloods in April 2006). Each time I was admitted to A&E they asked if I had had in infection as my whites were too high.The fatigue, lack of motivation and forgetfulness are my biggest worry at the moment, I forget friends names, don't turn up for appointments, forget to pick kids up from school, FORGET I HAVE THE COOKER ON! It feels like I'm losing my marbles at times! But hey, "I look okay so how can I be ill"I find myself waking up and I can't remember falling asleep and my mind is saying "Get up and go for a walk or do some housework", but my body just slows to a halt and finds somewhere comfy to sleep!Does anyone have any answers or tips on how to keep these symptoms at bay? I'd be ever so grateful if anyone has any suggestions they may have tried.Thank you AllAngela Angelac Sun, 15 Apr 2007 00:00:00 GMT You poor thing... It sounds awful! I'm on the case at this end and will post anything I find out on this site! I dont want 'my Angel' to go through all this, so I am doing all I can to help him early on, he is just 37!!! We are looking into a BMT for the future-to keep his options open. Have a look on the City of hope website, then look at the story about Julius Dix, you might get some ideas there? Good luck with your research and lets both hunt down a safe way of staving off this dreadful thing! Hey theres, nothing like Team Work!!!! my Angel Mon, 16 Apr 2007 00:00:00 GMT  On 4/16/2007 my Angel wrote:You poor thing... It sounds awful! I'm on the case at this end and will post anything I find out on this site! I dont want 'my Angel' to go through all this, so I am doing all I can to help him early on, he is just 37!!! We are looking into a BMT for the future-to keep his options open. Have a look on the City of hope website, then look at the story about Julius Dix, you might get some ideas there? Good luck with your research and lets both hunt down a safe way of staving off this dreadful thing! Hey theres, nothing like Team Work!!!!Many thanks "my Angel",I saw my GP today and have an appointment to see my haematologist next Tuesday. I found it helpful being able to talk to a pro about it. She prescribed some antihistamines for the itching and logically explained that the memory thing was something that she would expect to worsen after the diagnosis, given the fact that my mind is swamped with IMF info at the moment! She also said that gaining as much info as possible would be empowering. I've decided not to leave the kitchen when I'm cooking, or at least switch everything off if I do leave it because yesterday morning I ended up burning the bread I was making after falling asleep for an hour and a half. I'm 42 and find that having a sense of humour about all sorts of things can help get me through things so I still sliced the bread up, buttered it and offered it to my friends!!When I see my hem next week I've decided to ask for definate answers. Last time he said my abdominal scan was okay but it doesn't explain the "fist under my ribs on the left" also I've felt similar to hernia discomfort but more to the centre of my abdomen. I'm going to ask for measurements and also for a record of my blood counts. I just feel that if I know more I'll understand more, I read sites and forums but my head spins when I read about the meds, thats something else to ask about. My GP did say today that I was taken off iron for fear of an overload so I am slowly but surely learning. This forum has been a godsend for helping me learn.Lastly but by no means least, please know that our hearts are with you after yesterdays tragic events in the USA.Take care and thanks againAngela Angelac Tue, 17 Apr 2007 00:00:00 GMT  On 4/5/2005 Happy70 wrote:Am looking to speek to anyone who has myelofibrosis. Please contact me?My dad has this and it is very hard for me.  He is 64 and just found out in November.  His bone marrow no longer makes any red blood for him and he has transfusions.   We sent him to a mayo clinic in Cleveland.  He is on a few new treatments. Deannamarie Wed, 18 Apr 2007 00:00:00 GMT Hi,  My dad has myelofibrosis.  We found out in November.  He is 64.  He was needing blood transfusions every 14 days.  We sent him to the Mayo Clinic in Cleveland and he was put on Prednisone and Thalidimide.  He is not on a newer drug and has gone 4 weeks for a blood transfusion.  His spleen is huge and he has lost 40 lbs.  He is now complaining of severe shoulder pain.  I am concerned for him.  Do you have anything new to add that I might not know about?  Thanks.  DeannaMarie Deannamarie Wed, 18 Apr 2007 00:00:00 GMT My dad is 64 and just dgnsd with Myelofibrosis.  He need a blood trasf every 14 days.  We sent him to a mayo clinic in Cleveland and he is on a few expt drugs.  His spleen is huge and he has lost 40 lbs.  I have never been so upset and concerned. He is very tired.  His red blood count is 10.6 right now.  It goes low as 8.4 and has never been above 11.6  I have researched this and met with his doctors.  He is now having severe shoulder pain and I read this could be a spleen problem.  DeannaMarie Deannamarie Wed, 18 Apr 2007 00:00:00 GMT I have the same hole in my heart.  My dad is 64--just diagnsd with Myelofibrosis.  He too is on many exper drugs.  He has lost 40 lbs., no appetite and his spleen is huge.  He seems to have a great attitude--although so tired and struggles to walk.  He was golfing 10 months ago and now needs blood transfusions often.   I am so scared and depressed about this.   I am sorry about your dad and understand.  My heart hurts and I can not sleep at night.  DeannaMarie Deannamarie Wed, 18 Apr 2007 00:00:00 GMT Dear Deanna Marie and Angela Have they spoken with either of you, with regard to a bone marrow transplant? As well as consulting Doctors for this condition, we have been looking at diet and natural options, to help the body to heal itself. We are on Fish oil (recommended by his Doctor) and I am looking into Liver tonics, like Pomegranate Juice, and raw juices to maintain Liver function. I will let you know if any of these things start to make a difference to his bloods. Perhaps if you find anything else that helps, you could post it on this site? Thanks MA my Angel Thu, 19 Apr 2007 00:00:00 GMT  On 4/19/2007 my Angel wrote:Dear Deanna Marie and Angela Have they spoken with either of you, with regard to a bone marrow transplant? As well as consulting Doctors for this condition, we have been looking at diet and natural options, to help the body to heal itself. We are on Fish oil (recommended by his Doctor) and I am looking into Liver tonics, like Pomegranate Juice, and raw juices to maintain Liver function. I will let you know if any of these things start to make a difference to his bloods. Perhaps if you find anything else that helps, you could post it on this site? Thanks MAGood Morning,I was told when I was diagnosed in January that a BMT could be a possible option later, depending on how things go. I will be discussing it again next week with my haematologist though and let you know. I drink pomegranate juice daily if I can and although I don't juice my veg/fruit, I do eat a lot of them raw. If I find anything new or promising I'll be sure to post it.Take care and thanks againAngela Angelac Fri, 20 Apr 2007 00:00:00 GMT Hi,glad to find this site as I have just bn diagnosed with mf. I am a 40yr mum of two and in some way glad to have the diagnosis as this will ease the guilt i feel as i am always feeling ill!  I received the diagnosis whilst on a long holiday abroad and am still waiting to get home to se a specialist. The whole thing is freaking me out. Noone seems to know the right steps to take and i feel that i am feeling worse as each month goes by.I need to know from other sufferers, is it part of the condition that i have pains in my joints, get out of breath, feel dizzy have pains (real bad) in my rectum when i walk? (i know its stupid, but this is really affecting my life) The dr that tested me said that he thought my results showed the disease to be just starting although there was signs of fibrosis in the marrow and all other signs of weird and wonderful cells present in my blood. but my gut feling is that he is wrong due to how bad i feel. What does anyone think? can i feel so bad if it is still only moderate.?Its good to know there are people out there that can understand.I would appreciate any help/advice you can give Scaredycat Scaredypants Sat, 21 Apr 2007 00:00:00 GMT Hello there,I'm also recently diagnosed and trying to learn as much as I possibly can about myelofibrosis. If you read through this message board you'll find lot's of information about the symptoms of this disorder. There are also sites with very helpful info, mainly American. I'm not good with computers but I'll try to get the addresses to you. Bone pain, dizzyness, shortness of breathe are all quite common symptoms but I haven't seen anything about rectal pain.I'm 42, married with 3 children and in the UK.Feel free to contact me at any time, I've had some much appreciated support and advice from the wonderful people here.Take care and try to think positively, I know it's difficult.Angela  Angelac Sat, 21 Apr 2007 00:00:00 GMT Hello Scaredycat,Sorry to hear you'r feeling so bad. It seems a little early for that. Perhaps there is another medical issue that's causing the rectal pain. It doesn't seem related to MF.I am 62 and was diagnosed with MF nearly 2 years ago. My spleen is enlarged and my blood is showing unusual forms also. I do a complete blood count on the 1st of every month (this is a standing order) and the lab provides me with a copy of the results so I can keep track of any emerging trends on an excel worksheet. So far my white, red, and platelet counts are stable in the low normal range. The hemoglobin level is below normal but not by much.  The doctors always ask if  I'm having fatigue problems, but I don't and still work full time and then some. I do inject myself weekly with a drug called procrit. This is supposed to stabilize the hemoglobin count to fight off anemia. My blood was typed in the search for a bone marrow donor and my sister turned out a perfect match. She is 3 years older than me so as time progresses and I don't have severe symptoms, this will begin to take on more importance, as the hospital will typically not do a BMT on patients without symptoms. Yet they also don't do too many on people over 65, so it's a dilemma. I must say that my doctors are really kind and very knowledgable and concerned, and the best hospitals are close by, which is fortunate. When I read some of the messages in this column, I sense a great deal of desperation by both patients and family members, and there is very little I can do other than to relay my story.I wish you well as you fight this battle, and hope you will share with me and others the times when you feel better. Thanks for your message.Upbeat         Upbeat Sun, 22 Apr 2007 00:00:00 GMT  On 4/22/2007 Upbeat wrote:Hello Scaredycat,Sorry to hear you'r feeling so bad. It seems a little early for that. Perhaps there is another medical issue that's causing the rectal pain. It doesn't seem related to MF.I am 62 and was diagnosed with MF nearly 2 years ago. My spleen is enlarged and my blood is showing unusual forms also. I do a complete blood count on the 1st of every month (this is a standing order) and the lab provides me with a copy of the results so I can keep track of any emerging trends on an excel worksheet. So far my white, red, and platelet counts are stable in the low normal range. The hemoglobin level is below normal but not by much.  The doctors always ask if  I'm having fatigue problems, but I don't and still work full time and then some. I do inject myself weekly with a drug called procrit. This is supposed to stabilize the hemoglobin count to fight off anemia. My blood was typed in the search for a bone marrow donor and my sister turned out a perfect match. She is 3 years older than me so as time progresses and I don't have severe symptoms, this will begin to take on more importance, as the hospital will typically not do a BMT on patients without symptoms. Yet they also don't do too many on people over 65, so it's a dilemma. I must say that my doctors are really kind and very knowledgable and concerned, and the best hospitals are close by, which is fortunate. When I read some of the messages in this column, I sense a great deal of desperation by both patients and family members, and there is very little I can do other than to relay my story.I wish you well as you fight this battle, and hope you will share with me and others the times when you feel better. Thanks for your message.Upbeat        My dad is 64 and diagnosed with mf in November of 2006.  He needs blood transfussions ivery 3 weeks--He very tired and his legs hurt.  He now complains of severe shoulder pain.  His spleen is pretty big.  The doctors have him on an injection of a cancer drug.  Lately, he is very tired.  Can you help me with this?  Thanks!!  DeannaMarie Deannamarie Sun, 22 Apr 2007 00:00:00 GMT  On 4/21/2007 Scaredypants wrote:Hi,glad to find this site as I have just bn diagnosed with mf. I am a 40yr mum of two and in some way glad to have the diagnosis as this will ease the guilt i feel as i am always feeling ill!  I received the diagnosis whilst on a long holiday abroad and am still waiting to get home to se a specialist. The whole thing is freaking me out. Noone seems to know the right steps to take and i feel that i am feeling worse as each month goes by.I need to know from other sufferers, is it part of the condition that i have pains in my joints, get out of breath, feel dizzy have pains (real bad) in my rectum when i walk? (i know its stupid, but this is really affecting my life) The dr that tested me said that he thought my results showed the disease to be just starting although there was signs of fibrosis in the marrow and all other signs of weird and wonderful cells present in my blood. but my gut feling is that he is wrong due to how bad i feel. What does anyone think? can i feel so bad if it is still only moderate.?Its good to know there are people out there that can understand.I would appreciate any help/advice you can give ScaredycatHi there,  My dad is 64--diagnosed in November of 2006.  He is having leg pains, hard for him to walk.  He is very tired and he needs a blood transfusion every 3 weeks.  He has lost 35 lbs since December because he has no appetite.  I really worry about him.  He has been on Thalidimine and prednisone to help stimulate his red blood count.  The prednisone helps, but, they will not keep him on it long--and--his blood count drops and he becomes very tired.  DeannaMarie Deannamarie Sun, 22 Apr 2007 00:00:00 GMT  On 3/25/2007 Seekinghelp wrote:Hi everyone, My sister is beginning a clinical trial tomorrow to treat this.  She will receive an injection of  decitabine (chemo) for Days 1-5 and 8-12 then four weeks of monitoring and then repeating that same cycle.  HAs anyone tried this or heard of it?  We hope it has positive effects for her. If it fails, a BMT is her next step.  I have found some positive stories on the INternet of people who have had a BMT for this and are disease free years afterwards.For those over 60, CIty of Hope Cancer Center and the Mayo Clinic does mini-transplants and have cured people with those over the last 5 years as well..just something in case anyone needs to check into it.  There is one success story on their website from a Julius Dix who was diagnosed in 1987, treated until 2000 for his symptoms, had a mini-transplant in 2001 and is in very good health today!   I found that reading such stories give great hope and promise for a good future for all with this illness.  For the person who inquired about memory loss, yes, it is part of this illness.  Low red blood cell count leads to lack of oxygen to your body, including your brain, which causes the forgetfulness.  This is what my sister's doc explained anyway.Bye  Hi --My dad is 64---really have severe pain, very tired, hard to walk and low red blood count needing blood transfusion every 3 weeks.  Hi spleen his huge and he now has sever shoulder pain.  He has lost 35 lbs and does not have an appetite.  He had been to cleveland mayo and a mini bmt was a possibility.  At this time, should we persue this?  I am afraid things are getting much worse for him.  I do not know what to do.  Thank you.  DeannaMarie Deannamarie Sun, 22 Apr 2007 00:00:00 GMT Hello DeannaMarie:I think that the best thing to do is for your Dad to go see the physicians at the City of Hope Hospital in California. I've been told that the only ultimate cure is a bone marrow transplant.Was your Dad's diagnosis made long after he showed a lot of symptoms like extreme fatigue and a greatly enlarged spleen?  Had he had blood tests on an annual basis that might have shown irregularities?Best regards,Upbeat        Upbeat Mon, 23 Apr 2007 00:00:00 GMT  On 4/23/2007 Upbeat wrote:Hello DeannaMarie:I think that the best thing to do is for your Dad to go see the physicians at the City of Hope Hospital in California. I've been told that the only ultimate cure is a bone marrow transplant.Was your Dad's diagnosis made long after he showed a lot of symptoms like extreme fatigue and a greatly enlarged spleen?  Had he had blood tests on an annual basis that might have shown irregularities?Best regards,Upbeat       Hi Upbeat,   It is nice to hear from someone.  My dad went to the Dr. in November for fatigue.  At that time he needed a blood transfusion.  After a bone marrow test, they told him what he had.  He was needed a pint of blood every two weeks.  We sent him to the Cleveland Mayo Clinic.  They put him on Thalidimine and Prednisone.  He went almost 3 months without a blood tran.  He is very weak, however, server shoulder pain and leg aches and he has lost 40 lbs and has no appetite.  His spleen is huge.  He is now back to needing blood every 2-3 weeks.  He is 64 and his dr. said he can not have any type of a bone marrow tran at all--not even a mini one.  I do not think there is anything we can do.  Today he felt a bit better and got out of the house.  He said he feels like he needs blood, but, wants to try and wait.  It is the saddest thing I have ever, ever, ever experienced.  I have lost no one--My grandparents are still alive.  My dad does not smoke  or drink and just wants to live.   Thank you for talking to me.  Any help is great.   DeannaMarie Deannamarie Wed, 25 Apr 2007 00:00:00 GMT  On 4/19/2005 Cheryla wrote:Hello to all, I am happy to have found a message board. My Mom was dx about a year ago. I am very scared for her and am trying so hard to find help for her. She finished three weeks worth of radiation for an enlarged spleen last week. Her spleen seems to have shrunk, however today she needed three units of blood which took about seven hours.This was the first time she ever needed blood. She was getting procrit shots and yesturday they told her they were no longer helping and she needed blood instead. On top of that he mentioned that the procit was very expensive. What's up with that? I am located in Orlando does anyone know of some good doctors for this. It is obviously very rare. I just would like to know how much time she has. I dont know what to do. Or maybe it might make her feel better to acually talk to someone going thru the same thing it might help. I'll leave my number if anyone might want to talk. Just leave me a message. Tommorow I am going to contact the Mayo Clinic for her. She is not well enough or young enough (65) to receive a transplant. I just have to find a way to give her a little more comfortable time. Sorry the message is long but thanks to anyone who might respond.Hi there,  I am going through the exact same thing.  My dad is 64.  He was diagnosed in November.  He has seemed to have gotten weak quick.  He has had about 7 blood tran.  His spleen is huge.  He has lost 40 lbs and has no appetite.  We sent him to the Cleveland Mayo Clinic.  He has been on Thalidimine with Prednisone.  It helped at first, but, is not now.  His legs hurt and he has a hard time walking.  It is very sad.  He seems to have a good attitude, but, told his friend that this thing is beating him.  I go crazy over it and just want a solution.   Prednisone is the best thing, but, can damage the liver.  Prednisone seems to stimulate the red blood cells, but, he can not be on it for very long.  You are right, all of the medicine is so very expensive.  Thanks for listening.  DeannaMarie  Deannamarie Wed, 25 Apr 2007 00:00:00 GMT  On 4/25/2007 Deannamarie wrote: On 4/19/2005 Cheryla wrote:Hello to all, I am happy to have found a message board. My Mom was dx about a year ago. I am very scared for her and am trying so hard to find help for her. She finished three weeks worth of radiation for an enlarged spleen last week. Her spleen seems to have shrunk, however today she needed three units of blood which took about seven hours.This was the first time she ever needed blood. She was getting procrit shots and yesturday they told her they were no longer helping and she needed blood instead. On top of that he mentioned that the procit was very expensive. What's up with that? I am located in Orlando does anyone know of some good doctors for this. It is obviously very rare. I just would like to know how much time she has. I dont know what to do. Or maybe it might make her feel better to acually talk to someone going thru the same thing it might help. I'll leave my number if anyone might want to talk. Just leave me a message. Tommorow I am going to contact the Mayo Clinic for her. She is not well enough or young enough (65) to receive a transplant. I just have to find a way to give her a little more comfortable time. Sorry the message is long but thanks to anyone who might respond.Hi there,  I am going through the exact same thing.  My dad is 64.  He was diagnosed in November.  He has seemed to have gotten weak quick.  He has had about 7 blood tran.  His spleen is huge.  He has lost 40 lbs and has no appetite.  We sent him to the Cleveland Mayo Clinic.  He has been on Thalidimine with Prednisone.  It helped at first, but, is not now.  His legs hurt and he has a hard time walking.  It is very sad.  He seems to have a good attitude, but, told his friend that this thing is beating him.  I go crazy over it and just want a solution.   Prednisone is the best thing, but, can damage the liver.  Prednisone seems to stimulate the red blood cells, but, he can not be on it for very long.  You are right, all of the medicine is so very expensive.  Thanks for listening.  DeannaMarie   Deannamarie Sat, 28 Apr 2007 00:00:00 GMT Hello everyone,My husband, 61,  has just had his spleen removed (3 wks ago) which has stopped him from having blood transfusions every 4 days..(very good thing) and stopped the pain that he was having in his groin area. We think the spleen was pressing on many organs causing great pain..  He is still in need of platelets weekly and his WBC have dropped to 2.3  but his pain seems to have increased in his legs, to which he can not walk or stand for long periods of time..... and the pain is NOW starting in his arms.  He is on morphine twice a day and takes liquid morphine when the pain breaks through. Do to all the painkillers he is sleepinging most of the time . My question to anyone and everyone is, has anyone else had their spleen removed and what has been their experiences after the operation. We are on the list for a bone marrow transplant but I recently read that a person had the transplant and it did not work.....Our doctor told us that 20% didn't make it through the transplant, 50% had host vs donor problems and 30% had no problems....never has it been mentioned that it didn't work.... has anyone had the transplant and it didn't work?  has anyone had the transplant and what has been your outcome??  Because this is so rare... nobody seems to really have any strong answers... its feels like it is a trail by error approach to this disease.  I really thought by removing the spleen my husband he would have had a little better quality of life and bought us time for the transplant... we got the time but his pain has increased in leaps and bounds.  Thank you in advance for any input you might have.  I know anyone who is acaregiver for someone with  Myelofibrosis must feel like I do.. helpless because I cant do more...SS Shellys Tue, 03 Jul 2007 00:00:00 GMT I was diagnosed with MF this past February. I was feeling very weak and sure enough my blood test showed anemia and after my BM biopsy , my MF was confirmed.I have lots of joint pains but I realized aftr going to my hematologist and rheumatologist that these pain have nothing to do with MF. I have osteoarthritis and I am menopausal. Taking 6 pills of fish oil/day helped my joints tremendously. Let me know if they will help you Louna Fri, 06 Jul 2007 00:00:00 GMT  On 7/3/2007 Shellys wrote:Hello everyone,My husband, 61,  has just had his spleen removed (3 wks ago) which has stopped him from having blood transfusions every 4 days..(very good thing) and stopped the pain that he was having in his groin area. We think the spleen was pressing on many organs causing great pain..  He is still in need of platelets weekly and his WBC have dropped to 2.3  but his pain seems to have increased in his legs, to which he can not walk or stand for long periods of time..... and the pain is NOW starting in his arms.  He is on morphine twice a day and takes liquid morphine when the pain breaks through. Do to all the painkillers he is sleepinging most of the time . My question to anyone and everyone is, has anyone else had their spleen removed and what has been their experiences after the operation. We are on the list for a bone marrow transplant but I recently read that a person had the transplant and it did not work.....Our doctor told us that 20% didn't make it through the transplant, 50% had host vs donor problems and 30% had no problems....never has it been mentioned that it didn't work.... has anyone had the transplant and it didn't work?  has anyone had the transplant and what has been your outcome??  Because this is so rare... nobody seems to really have any strong answers... its feels like it is a trail by error approach to this disease.  I really thought by removing the spleen my husband he would have had a little better quality of life and bought us time for the transplant... we got the time but his pain has increased in leaps and bounds.  Thank you in advance for any input you might have.  I know anyone who is acaregiver for someone with  Myelofibrosis must feel like I do.. helpless because I cant do more...SSHi there, My dad is 64 and was diagnosed in Nov. of 2006.  Although his spleen is large, the doctor does not want to remove it.  I believe that this disease affects everyone so differently, due to the red bl count---white blood count---and platelets.   His problem is with Rd blo cells---he needs transfusisons of Red blood every 3 weeks or so--hd been going 12 weeks, but now is very weak with a lot of pain.  He has been to 3 specialists in 3 different states and all say not to have a bone marrow trnplt at his age----perhaps a mini bone marrow transplant---this was from the mayo clinic in Clevelant----great doctor there.  Let me know if I can help at all.  I wish you the very best!!!!    Deanna Marie Deannamarie Sun, 08 Jul 2007 00:00:00 GMT  On 4/11/2005 Happy70 wrote:Dear Melanie, Thank you again for your letter here is my story am turning 35 on July 26 god willing. I have no kids no husband and family with me but am strong I do have some good friends. I lost my uterus to cancer two days before my 30th birthday and now this what can I say some girls got all the luck (smile) am happy to be able to share what is happen to me with somebody anybody so thank you I put my email address in but it was remove so am not sure how to get it to you bit if you can read the lines here we go kirton487 at the hot place. Hope you get it. Bye, PatI just got this terrible news this week: I have myelofibrosis.  I am 35 as well with 2 young kids: 1 is 4 and the other is 10 month.  I am devastated just thinking about not able to be there with my kids at their graduations and weddings, etc.. I don't have any symptom except for extremely high platelet counts, I was told it will be bad when the count starts dropping.  PLEASE EMAIL ME ABOUT YOUR EXPERIENCE IF YOU ARE/WERE YOUNG WHEN YOU WERE DIAGNOSED WITH THIS ILLNESS. thank you for your support. young mom Tue, 10 Jul 2007 00:00:00 GMT Deannamarie ,My husbands doctors did not want to remove my husbands spleen.  He was getting transfusions every 4 days...then it whent to 1-2 days.  I told our doctor he needed to fight for my husbands life!!! I WANT HIS SPLEEN REMOVED.  Our doctor found a surgeon that would do the operation, and  now he has not needed a transfusion in 3 weeks.. still holding. The spleen was almost 10lbs when it was removed... it just kept eating up his blood.  Removing it has bought him some time for a transplant.... I don't know if this helps but if it had not been removed he would have died.  Right now there is nothing for me to do... I wish I knew more so that I can ask.. more.  I wish your family the best. Shellys Tue, 10 Jul 2007 00:00:00 GMT  On 7/10/2007 Shellys wrote:Deannamarie ,My husbands doctors did not want to remove my husbands spleen.  He was getting transfusions every 4 days...then it whent to 1-2 days.  I told our doctor he needed to fight for my husbands life!!! I WANT HIS SPLEEN REMOVED.  Our doctor found a surgeon that would do the operation, and  now he has not needed a transfusion in 3 weeks.. still holding. The spleen was almost 10lbs when it was removed... it just kept eating up his blood.  Removing it has bought him some time for a transplant.... I don't know if this helps but if it had not been removed he would have died.  Right now there is nothing for me to do... I wish I knew more so that I can ask.. more.  I wish your family the best.It is nice to hear from you.  I know that my dad's spleen is large, but, I do not know how large.  Although he has lost 40 lbs., his stomach is large due to his spleen.  He went to his oncologist yesterday and he said he is pleased with the injections he is receiving because his RBC is 9.8 and he does not need a blood transfusion.  My dad asked why, then, is he so tired and can hardly walk.  The doctor told him it was not from low blood and maybe his heart, but, my dad's heart dr. has not said anything.  I was so sad and it drives me crazy.  I just keep waiting for it to get better, some how.  My dad said his dr. told him to try physical therapy and so my dad is going to try this next week.  He really felt weak -- and thought he needed blood, but, they do not give blood unless it is in the 8 range.  I appreciate talking to you. Thank you so much!!  DeannaMarie Deannamarie Tue, 10 Jul 2007 00:00:00 GMT My husband, age 68, was diagnosed with myelofibrosis Feb. 2006.  We went to M.D. Anderson Cancer Center in Houston in June of 06.  He was put on a clinical trial and had 14 cycles of chemo.  Fatigue is still a real issure and he has blasts in his cbc.  He continues to work what he can.  It is good to hear others that deal with myelofibrosis.Retired teacher  retired teacher Tue, 10 Jul 2007 00:00:00 GMT  On 7/10/2007 retired teacher wrote:My husband, age 68, was diagnosed with myelofibrosis Feb. 2006.  We went to M.D. Anderson Cancer Center in Houston in June of 06.  He was put on a clinical trial and had 14 cycles of chemo.  Fatigue is still a real issure and he has blasts in his cbc.  He continues to work what he can.  It is good to hear others that deal with myelofibrosis.Retired teacher Hi, It is nice to hear from you!!    A doctor in Philly was going to do chemo with my dad, and decided not to at this time because of some injection he gets weekly to stimulate his red blood cells.  I hate the fact that my dad is so tired all of the time though.  He is going to start Physical therapy next week to see if this might help his strength.  Keep in touch and take care!!   DeannaMarie Deannamarie Wed, 11 Jul 2007 00:00:00 GMT  On 7/10/2007 retired teacher wrote:My husband, age 68, was diagnosed with myelofibrosis Feb. 2006.  We went to M.D. Anderson Cancer Center in Houston in June of 06.  He was put on a clinical trial and had 14 cycles of chemo.  Fatigue is still a real issure and he has blasts in his cbc.  He continues to work what he can.  It is good to hear others that deal with myelofibrosis.Retired teacher Hi, It is nice to hear from you!!    A doctor in Philly was going to do chemo with my dad, and decided not to at this time because of some injection he gets weekly to stimulate his red blood cells.  I hate the fact that my dad is so tired all of the time though.  He is going to start Physical therapy next week to see if this might help his strength.  Keep in touch and take care!!   DeannaMarie