Mar 4, 2013 02:12PM Karen14 wrote:
Hi Mariol & All,
I'm also from Dublin but living in Kildare. This is also my first post.
I was diagnosed Stage IV in Nov 12 with mets to my liver and bones. I had a 1.8cm tumour on the neck of my femur so I had a partial hip replacement in Dec. Not what you expect when you're 38.
I have been on A/A since early Jan. It's not easy but it seems to be working. My tumour markers have dropped from 89 on 2nd Jan to 43 when tested last week. I have scans next week to see exactly whats going on.
I have been hospitalised twice since starting it. First time was after only 4 days on the combo. I had a temp of 38.7 and severe mouth ulcers and blisters on my throat. I spent two days in the hospital and had to come of A/A for a week. The second time was just over 2 weeks ago - I caught the flu and after spending 5 days in bed I almost collapsed in the shower. Blood tests showed that I was severely neutropenic - my neutrophils (part of our white blood cells that fight infection) were down to 0.4. Normal levels are between 2.5 -7.5. I came off the combo again and spent the week in hospital waiting for my counts came back up to 1. While neutropenia is a side effect of Afinitor its not a very common one.
I'm back on A/A a week tomorrow. My biggest complaint is dry/raw mouth and taste changes. I find looking after my mouth a full time job - brushing my teeth, mouth wash, steroid mouth wash, dissolvable steroids etc. I hope this eases off - I'm sick of everything tasting salty and I really, really miss red wine and coffee.
Mariol - if you want to ask me anything about the drug feel free to send me a message. As far as I'm aware there is a very limited number of women on A/A here so far.