Hi all, i feel I have to apologise for not posting for ages. The fatigue problem has really hit me and I probably spend more hours asleep than awake these days. Just now the problems I have been having with pain are giving me a break and the medication is keeping it well under control.BUT - and it is a big but - I have been on Kadcyla for 2 years now, after being on herceptin for 10 years, but platelets have really been objecting. After changing to 6-weekly which worked well for a while now my platelets aren't recovering and are stuck at around 75 after ann 8 week break. It came as a bit of a blow when I was told that after 8 weeks off the drug it becomes 'out of licence' and you are not allowed to have it again! Add to that NICE doesn't allow you back on herceptin either. Onc thinks cancer has infiltrated bone marrow - if it is just the kadcyla causing platelet problems they will recover in time. On friday I had an echocardiogram (thank goodness Marsden are switching from MUGA scans to these ECGs), and a full body MRI and on Tuesday I will get the results. I just don't know where I go from here. Onc talked of rechallenging the cancer with one of the chemos I had 14 years ago as I had good results on it. I'm afraid I was norty enough to disagree with him. At that time I had a lot of lymph node action around my collarbone, neck and jawline and the chemo (navelbine) did work on them but as soon as the course finished they started to grow again. It was only when I was then started on herceptin (a very new drug to us in the UK) that my cancer was brought under contorol . So for me to be told there are no drugs that involve herceptin available to me - well I'm sure I dont have to tell any of you how that feels. I have heard since that there is a trial going on (phase 1) SYD985 and this, like Kadcyla, is a combination of herceptin/other drug .I know that some of the members of the facebook Chat Girls group know more about this/are on it. If any of you know more or are taking part I would be interested to hear more. Dawn xx
... View more