Myelofibrosis

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

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

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.

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

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

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.

 

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!

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?"

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?"

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.