hi dawn, haven't got all your message through. Can you re send xxx

Hi Babe, sorry not got back to you before now, I was rambling on a bit too much, re-living the experience, not always a good thing. How are you doing ? Do you have children? I have one son, whom I rarely see and 3 beautiful grandchildren who I met for the first time 3 years ago. They are do to come over next Saturday (fingers crossed). The youngest is 8, then 11 and 13. Sadly I fell out with my son many years ago, being a single mum is not easy. It's a long complicated story, so will leave it there. Just treasure every moment I get to spend with them. Back to story, I will probably repeat myself!!!!! I was 59 when first diagnosed and I am now 67. Right, here goes........after being diagnosed, it was believed that it was still contained within the breast and surgery was planned. Then one night at about 7.30 in the evening I had a telephone call from an Italian sounding man, I thought he was trying to sell me double glazing until he mentioned the words The Royal Marsden, then I listened. He asked me if I was prepared to go on clinical trials, not necessarily to benefit me but for future generation's, of course I said yes, which turned out to be my second lucky break, because I was given a PET scan, which showed the cancer had already spread. I was still given the option of surgery, but as one 'not so nice oncologist, think he was a, can't think of the word der!!!! not yet fully qualified, put it 'No point in mutilating yourself when it's already spread' lovely bedside manner, I don't think, did not have surgery, but even now because of the trials, I can still have surgery if I want. Was put on Letrozole which worked for 59 months, yay, thought it would work forever, put in loads of weight, but didn't care as side affects were minimal and could live a normal life. Had PET scans every 3 months, then came big shock had spread to liver and spine. Tried a couple of different hormone combos, side effects really bad so had chemo for 6 months, got off very light, hardly any side effects, had my head shaved, got a wig which I only wore to two family funerals (and where my son started talking to me again) .One of my aunt's knitted me several little cloche hats with flowers on, which I wore mostly as it was winter time, else I went head Brazilian!!!!, got the usual stares, but just embraced it. Chemo did trick no sign of cancer anywhere, put on Tamoxifen which worked for 7 months, then back it came then put on chemo tablets, which lasted a year and now this combo. Been having PET scans every 3 months throughout the whole time and tummy injections every four weeks for bones, so back again in Tuesday to see if Pabociclib has arrived. To be honest not looking forward to taking it, side affects scare me, so truly value your input. I can't understand why it costs £85,000 per year per patient with such scary side effects. I hope the combo has now kicked in for you and is having good positive results. Have added you to my very long prayer list, thinking of you and sending you hugs xxxxx

o that's great news I'm so glad u have the tablets. I take mine after a snack about 8-9pm because I read some forums that all said night time was best as u sleep through some of side effects. What do u mean when u say they can help u in the future ? Sounds great but not really understanding. I'm no more comfortable, I'm thinking it's getting worse, my liver bloods were not good today either so might try see oncologist next Tuesday xxx

Hi Babe how are you doing, I hope by now that the combo has kicked in well and truly for you and that your liver is less swollen and painful. Have been thinking about you over the Christmas holiday. Did you go to see your oncologist and what did he say? This thing with regard to the gene. Having obtained my original biopsy of 8 years ago with my permission for research, I was told that it would not be beneficial to me personally, but could help in the future for other people. However whilst testing it with recent bloods, my DNA has changed and they have found this specific B gene that now makes up my DNA. I think they were as surprised to find it as was I and so quickly. Beyond being told that it could be of benefit to me in the future, I know no more. I didn't ask as was grateful for new treatment. However last Thursday I did develop Bells Palsy on the right side if my face haha. Been taking meds for that, but so far no change. Eating and drinking over the Christmas period was interesting to say the least. Need a bib!!!!!. Well tablet time is calling. I take mine half way through breakfast, which is always porridge with blueberries. It says to take with (preferably a meal) not after food so I always read that as in between the meal. Please let me know how you are getting on, love Dawn x

Happy Christmas Dawn, o no I'm sorry to hear this. What's caused it ? Hope you recover from it quickly. We don't know still if this new drug is working yet, they said after this second cycle it should of kicked in. I'm guessing time will tell, hoping I don't get any worse. I'm no worse than last week but so so uncomfortable with the swelling, can't really eat much as no room the liver is that big, I look about 6-7 months pregnant. Oncologist did ultrasound last week because I wanted to check if some of it was fluid, in which case they could drain to make me more comfortable, however no fluid was found, it's all liver, hence why I can't eat much throughout the day because no room. I'm hungry too so it's very annoying ha ha , I just want to eat everything. Anyway I'm not letting it spoil my time and remaining positive, it is going to prevent me from getting any worse. It's sounds very interesting and beneficial to you for future then this gene discovery, I'm pleased. Let me know how you get on, I have been thinking of you but didn't want to bother you over the festive days. Big hug Dawn xxx