Firstly I just wanted to thank all of you wonderful people out there who posted such lovely messages to me last night. It really means so much to know there is so much support...I in turn wish you all the best too!!
So I had my oncology appointment and the results are a little different to what I expected but I suppose thats how it will be from here on in, unpredictable! The PET showed that my liver is fine (YAY) but that I have quite extensive lymph node involvement. More so than first thought. Its in the lymph nodes above and below my collarbone on both sides, in my chest which I knew but there are also some much deeper nodes affected too. I also have one/some(I'm not sure how many)affected in my groin too. The bugger seems to be everywhere!! My onc, Dr Moody, great name, said she cant now offer me rads which is what she said I would have if my liver was clear as there are so many nodes and she may get a bit too close to my heart which would not be a good thing at all. So I am to go back on Herceptin for as long as it works or if it starts to affect my heart too much and take it from there. I had Herceptin before and was fine on it so I dont mind too much but it did affect my heart so I had to have breaks and eventually stop the treatment early. I will just explain...Herceptin can affect the way your heart pumps blood around your body. During treatment you have a heart scan called a MUGA every 3 months to check how your heart is tolerating the drug. When your heart fills with blood it is said to be 100% the scan gives a reading of how much is pumped out again. Mine started at 68% before but went down to 48% anything below 50% and they stop treatment as it can lead to heart failure. As I said before I had a MUGA last week with a result of 60% which is fine but not much leeway before a break may be needed. Hopefully it wont affect the treatment too much and the cancer will respond for a long long time....thats my wish for now although I have plenty more.
I have to go next Monday for my first Herceptin and was told to be there all day. I am also having a portacath put back in on the 2nd September....cant wait!! Didnt much like that the first time around I can tell you. At least theres still hope hey?
FormerMember
Hi Chrissi, a mixed bag of feelings eh? Good news about the liver, but not so good about the lymph nodes. My heart got a bit of radiation during treatment, but there was nothing they could do about that, apparently it's the way my heart is situated! Typical, I never give them an easy time lol.
Pleased to see that you are still upbeat and positive about treatment. You are so brave. And you are right, I believe that where there is life there is hope.
Wishing you all the very best for this fight. Love to you and your family, Christine xx
