Myelofibrosis

Hii my name is Peppe' I have Myelofibrosis. I was diagnosed Sept 2006. I'm doing fairly well as of now.

My reason for writing is to see if there are others out there that would like to communicate. I'm not sure how I got this, and I'd just like to compaire notes with others.

God bless you all

 

On 2/8/2008 Peppe wrote:

Hii my name is Peppe' I have Myelofibrosis. I was diagnosed Sept 2006. I'm doing fairly well as of now.

My reason for writing is to see if there are others out there that would like to communicate. I'm not sure how I got this, and I'd just like to compaire notes with others.

God bless you all

 

My Mother has it too.Over the past year she has begun to have nosebleeds lasting anywhere from 2-8 hours. She had to stop taking asprin for her leg pain because aspirin kills platelets, and the Dr said it could be the reason for the bleeding too.  So she takes some thing stronger now that works very well but she still has had nosebleeds!   Her platelets were ok last week and now they are too low. The Dr wants to do a bone marrow biopsy to see how the disease is progressing.  I will be with her during this time and help her. I wish I could do more.

I'm so sorry to hear about your mother!

If I might ask...how old is she? How long has she been diagnosed with MF? What has her platelet count been?

I'm doing well right now. I learned I had this Sept 06. We traced it back to a old blood test and we know I've been having it for 5 yrs as of Jan or Feb of this year. The blood test wasn't followed up...no one thought of it being more than anemia...and I never went back in for retesting...I think that was a good thing looking back. There was nothing to do for it any ways.

I'm 52 as of Oct...was 50 when diagnosed. Its been a difficult 2 yrs knowning whats to come. I've been to MD Anderson for a bone marrow transplant, but medicare won't pay for it till it turns into ALL if it does. So sad. I did a study at Anderson last year for 6 mts...it got difficult towards the end...started good tho...but at 6 mts they took me off. I've been feeling better each day. Nothing major, just better.

The worse thing I have found with this has been my energy level, I have a slighty enlarged spleen also. My counts have come up since the study I'll post you my last ones from MD Anderson....

MD AND

1/7/2008

White Blood Cells Normal  6.7

Red Blood Cells Low   3.26

HGB Low 10.1

HCT Low  29.5

MCV Normal 91.0

MCH High 31.1

MCHC Normal  34.4

RDW High 22.0

Platelets Low 109

 

They've been lower this past year, but as of right now or last blood work, doing well for now...

 

If you'd like to write each other I'd like that. Its not easy not having others to talk to about things with such a rare illness.

my email is

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 please feel free to right me.

I'll be thinking of your mother...and by the way...I stopped using ibprofen and noticed I don't have as many bruses.

For myself with the bone marrow test...it helps me to keep talking...talk talk talk...and not think...i really get stressed over that test...

God Bless you both

Peppe'