Myleofibrosis

My mum has just been diagnosed with the early stages of myleofibrosos. Age 78.  Up until  a couple of months ago she has led a very active life.

This disease was only picked up because she had a dizzy spell and the doctor took a routine blood sample.  Her platelets were high 600 but all other results looked ok.

It took 12 months for other blood results to change, now she has low hb 7.2 low wbc 1.4 and low platelets 115

She feels contantly tired, no energy, poor appetite, and loose stools.

im interested to learn if any one else has these symptoms and if any particular foods help with the loose motions.

She finds that eating bacon and eggs and fried bread are appertising, and she eats the lot !!!   but a cooked dinner with meat, pototoes, veg and gravy are not.!!!!  Fish seems to be ok especially fried plaice.

Doctors say there is nothing they can do other than give blood transfusions.   She has had 3 transfusions (4 weeks apart)

2units, 4units and 3 units. 

Any advice would be appreciated, it does seem to be a very worrying condition to have, but we are trying to keep positive.

One thing i dont understand is how after a blood transfusion she feels so low,  She has one ok day, and one bad day,  followed by another ok day and another bad day...

On 1/10/2008 specialmum wrote:

My mum has just been diagnosed with the early stages of myleofibrosos. Age 78.  Up until  a couple of months ago she has led a very active life.

This disease was only picked up because she had a dizzy spell and the doctor took a routine blood sample.  Her platelets were high 600 but all other results looked ok.

It took 12 months for other blood results to change, now she has low hb 7.2 low wbc 1.4 and low platelets 115

She feels contantly tired, no energy, poor appetite, and loose stools.

im interested to learn if any one else has these symptoms and if any particular foods help with the loose motions.

She finds that eating bacon and eggs and fried bread are appertising, and she eats the lot !!!   but a cooked dinner with meat, pototoes, veg and gravy are not.!!!!  Fish seems to be ok especially fried plaice.

Doctors say there is nothing they can do other than give blood transfusions.   She has had 3 transfusions (4 weeks apart)

2units, 4units and 3 units. 

Any advice would be appreciated, it does seem to be a very worrying condition to have, but we are trying to keep positive.

One thing i dont understand is how after a blood transfusion she feels so low,  She has one ok day, and one bad day,  followed by another ok day and another bad day...

 

 

 

 

 

 

Hello specialmum,

I am 64 yrs old and have been MF diagnosed for two years now. I started my treatment with a RBC transfusion of two units. Followed by another RBC transfusion of two units a month later, and then weekly Procrit shots. for the next year whenever my HGB was below 10. A year later I went on weekly Aranesp shots whenever my HGB was below 10. We cheer the good weekly counts, and wonder what happened to them suddenly. My latest BMB showed that my marrow is completely clogged with fiber now, so, no more Aranesp and back onto  the monthly transfusion of two units of RBC schedule until ???

My anemia is caused by my falling RBC count. I have not had any problem with the WBC. My experience is very opposite to your Mum. I eat like a horse, and I can eat anything. After my transfusion I want to get outdoors and catch up on my chores.My current problem is to find a balance point of activity so I don't wear down before the next monthly transfusion. I try to work 4 hrs a day with moderate routines, then head into my snooze time for 1/2 hr, and finish off the day puttering around the house.

I do not have any loose stool problems, and have recently had my Gall Bladder removed as it was full of stones.

I know that we are all uniquely made and even though we all have Myelofibrosis, our symptoms vary ?

Keeping a positive attitude is a must. Celebrate the good days and don't worry about toworrow. Being a Christian (Christ follower) keeps me focused on Him. I get down, like everyone else, but, then I say "Enough", and give it to the Lord in prayer. Having faith and having people to share this disease with is what keeps me smiling for the rest of my life. I suggest getting her into a support group. It is important for her to know that she is not alone.

May God richly bless you and your Mum, 

Bill