Myelofibrosis--I Need Some Help Please

On 3/28/2008 Ditey wrote:

I am so sorry to hear about your mother.

I was diagnosed Sept 2006 with Myelofibrosis. My symptons have been great fatigue (one that no one could explain), hot flashes, low grade fever, and brusing, memory loss and fog. The fatigue I had for many years before any thing was ever discovered. I went from doctor to doctor looking for answers...NONE! Blood test were done for years...NOTHING! I had a blood test that came back with counts out of wack 5 yrs ago that my GYN did, she thought it could have been just one of those things, said take some iron and we'll retest. Well bad me...I didn't think much of it! Never went back till three years later to continue my search once again as to why I was so fatigued. (Jan 2006) Once again my counts were out of wack. So I was sent from one doctor to another till I found myself at a hemotolgist and doing a BMB. Results seem to take forever to come back...he called and said I had a little scarring in my bone marrow we'll keep watch. Over the next few months he kept saying if my counts didn't rebound he was going to send me to MD Anderson in Houston. In Sept 2006 he finally diagnosed me with Myelofibrosis. He sent me to MD Anderson for a bone marrow transplant. My condition as not serious, but because of my age he thought I should see them. Long story short, I've been to Anderson many times, no BMT insurance would not pay for it. I did do a study with Revlimid, but was not able to take it any more after my 6 mts (from March 07 to August 07) on the study. My counts dropped and doctor felt it may be in part due to the medication. Since August 07 my counts have gone to a good levels for me and I have been stable...Thank God! Because my counts are better I feel better. I am as the other woman said tho....no matter my mind set that I will do the things I want to do, my body fails me. I've always been a determined woman all my life to do the things I want to do...and when this began in my body years ago...I was brought down to my knees feeling sick...I'd rest and get right back up...at times I thought it was in my head...NO IT WAS'NT! I know that now! It's taken lots of time for me to accept the fact that my body will not do the things I want to do...but I finally have...the most important thing now knowing my future is to enjoy life...Enjoy every moment. If I feel poorly...I don't beat myself up any more...I enjoy watching TV and accept thats how my day will be today. If I can do more...then I'm off and doing it. I have a beautiful grand daughter that came to me when we were in search of this illness...and she has been the greatest blessing...of course I've had to deal with my issues about not being able to have her as much as I'd want to...but I'm doing better with that...

So to go back to your questions about time frame...

You can research on the net and find all the answers you need...

In short they say 5 years from dignoses...but there are a small number that have gone 10 yrs and one lady I read about 18 yrs before the disease hit her enough to stop her life style. There are many sites...here are a few...

http://www.bonemarrow.org/about/index.html

http://mpdinfo.org/faq/faq_mf.html#q5

http://www.acor.org/mpd/mffaq.html#stages

We can document I've had this for 5 yrs now, and my counts are not much lower than they were back then. They have bounced back and forth and besides the study I have not had any other treatment, not even blood transfusions. So how quickly does this progress? I don't think they know! I was 50 when diagnosed...how old is your mother?...See my thoughts on this is...most don't find out for years and years...usually people are in there late 60's or older...so did they find mine early?...doc said if they had not looked at my bone marrow they still wouldn't know what I have.

I agree with the lady also care givers are a blessing! I worry about my days or years ahead...who will care for me...the burned I will put on my sons.

God bless you and your mother Darlin....I sure hope things get better for her soon...please tell her hold on...there is a cure coming soon I'm told...lots of research finally happening with this illness.

I wanted to thank each of you for giving me such good advice and kind words of encouragement. Last week my Mom had a new dx added. She has myelodysplasia with myleofibrosis in that. The fibrosis in her bone marrow has rapidly progressed. Her transfusions have increased from once a month to every 2 weeks over the course of  6 months. In order to slow or stop the disease,  she can have chemo (DECITABINE)  for five days at a time while hospitalized, then go home for a break and repeat the hospitalization routine...etc. The other option is a marrow transplant from her older brother, The Dr. says this disease is different and will only allow this family member if he is a perfect match to be a donor.The mortality rate for the transplant is 20-25%. My mother was feeling pretty good after a transfusion this week and canceled her lab appt.  She was supposed to get her Aranesp shot at this skipped appointment too! Her  platelets were at 19k about 10 days ago and I think she was afraid to get the lab done as the Dr will order platelet transfusions at 15K. 

We were blindsided by this new DX. I am putting on my happy face for her, but deep down I can't seem to find my positive spirit that has kept me going as a caretaker. Still, It's happening to her (not me) and I cannot be selfish, especially now. 

Prayers, peace and love to you all.  I wish I could take this disease from every single person that has been touched by it.