On 4/18/2006 Spleenqueen wrote:
I would like to establish contact with anyone who is experiencing a long, slow progression of MF and especially if you are in Australia. I was diagnosed in 1990 with ET and then MF in 1996. Have had a few dramas but am travelling extremely well now. Large spleen is controlled by low dose hydrea. Would like to hear from someone in Aus.
I also was diagnosed with ET when I was 45 and have now progressed to Myelofibrosis. I am currently being treated with Melphelan (or Alkeran) to bring my spleen down. An earlier dose kept it down for about a month and I am now on my fourth month of the drug and have two months to go. It has certainly helped my symptoms of breathlessness, stomach discomfort and I dont look quite so "pregnant" as I did before.
My haematologist does not believe that the side effects of this disease involve bone pain, which was in terrible evidence when I started on the Melphelan, and my skin sticks to itself, my armpits are stuck to my chest when I wake up each morning and I have to prise my legs from one another before I get up. I am on a "mild" dose so my hair has not fallen out but looks pretty dry and ordinary.
MF is an incurable, untreatable disease and about the best we can hope for is ease of discomforts. I am a naturopath by trade, but find it very hard to treat myself. I take colloidal silica which is marvellous digestively and helps with hair nails and collagen and Vit B (multi) asprin folic acid (I also have high homocysteine levels) and fish oils. I try to take it easy on "bad" days and go for it on good days. My family very rarely mentions it and they live all over the world - I would sometimes like to cry on a shoulder and talk about the emotional side of being landed with this disease. On the other hand I am grateful for having lived 61 years - but when you are enjoying life, you want it to go on forever.
Hope to hear from you soon.