Myelofibrosis--I need some help please

On 3/30/2008 JuJusdaughter wrote:

 

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. 

 

I'm so sorry to hear of the new diagnoses. Hon I think...now this is my own opinion that I'd go for the bone marrow transplant/stem cell transplant. Her disease seems to be really up there with all the transfusions shes getting now.

Little story for you...While I was sitting at MD Anderson to do my BMB I meet a lady that had had the stem cell transplant 45 days earlier. She got out the hospital before 30 days and was living in a apt in Houston for the 90 days stay after being released from the hospital. She did great for those 20+ days...she threw up once...she told me she kept waiting to get sick...she never did. She did have a little set back after she left the hospital but doctors got her back in hospital and got it corrected real qucik and she was doing great since.

I know how your mother feels...as long as your feeling well, you don't want to go back because you don't want them to ruin it...I've thought that way myself Hon.

As for you and being down...you have every right Sweetheart...shes after all your Mother!!!!! You have every right to be angery and hurt and sad...I went thru the same thing when I was diagnosed...my doctor put me on a mild anti depressant med and its helped me more than I can say. It helps you to have the courage to face each day...that way you can make the most of it!

I hope your mother considers the stem cell transplant. It may buy her some more time.

God bless and if you ever need someone to speak to that has this...I'd be happy to! Just leave me a message here and I'll give you my email!

Best wishes for you all,

Peppe'

Dear Peppe'

Thank you for letting me know how you are doing and about the woman that you met. Your compassion for me, when I have no health problem, is a tribute to the beautiful person that you are.  I hope you are having some good days and feeling well lately.  I will always remember you in my daily prayers. I love the name Peppe' by the way! It makes me smile.

Thank you for your advice on the transplant too. I will be strong and stick by her and let the experts do their thing! :)

talk soon!

Jujus Daughter

Hi JuJus,

I wanted to share with you a site that I found the other day. Infact it's part of cancercompass this site we are on. http://www.cancersociety.com/forum//viewtopics.cfm?Forum=30& This may give you some hope Sweetheart. There is one man on here that has had this for 18 yrs, another for 17 yrs.

I hope your mother is feeling better...you both remain in my thoughts and prayers.

Hugssss,

Update on my Mom, who is doing fine now but WHAT A WEEK!

This past week was bad. I have never seen her so sick and frail. She had a bleed starting last Sunday evening. It stopped but started back on Monday afternoon and lasted until about 2am Tuesday. We all headed to her Dr.s appt. Tuesday and bless her, the bleed started back up in the waiting room :(  

I  tried to help hold her ice pack and switch out gauze as fast as I could.  She was shaken up by the whole thing. I stayed the night with her and we checked into outpatient Wednesday morning for her transfusions. Everything went fine until she had a reaction to the platelets. After benadryl and steroids she fell asleep. The color was back in her face and it was the first time I had really seen her looking peaceful all week. It just brought quiet tears of relief to my eyes. Once I knew my step father was on the way, I left my Aunt and Mom to go home for some rest. I couldn't rest though. When I did sleep I had terrible nightmares and just woke up sobbing. I guess I just held it all in for three days and the flood gates finally opened.  That and catching up on sleep was all I needed to get back to normal.

She will continue to do transfusions unless they begin to fail. If they ever do, her Dr. recommended five day chemo with a week off and repeat until five rounds are completed. We all still have a lot of faith that the transfusions will last and hearing about people here that have gone years and years with transfusions still helping, gives me so much HOPE. :)

Still keeping everyone included in my prayers, I hope everyone is doing well and staying strong!

Andrea