Hi BCC. Please can you let us know what has happened to Nnnie Spikey’s post? I received email notification of the post at 17.25 on the 7th May, but it doesn’t appear here.
Slightly mixed feelings today. Went to Charing Cross Hospital yesterday and was told by the Registrar, that although I have been referred to the Royal Marsden for Cyberknife, the Marsden may not offer CK straight away, as they may take the view that the treatment I am on (Lap/Cap), appears to be working. Obviously if Lap Caps is working I’m pleased, but the last time I was at Charing Cross I saw the Prof and he said they didn’t know if it was working or not - only that there was no change in the size of the mets. Now all of a sudden the Registrar is saying that the last MRI showed some necrosis within the brain mets (which may indicate that the cells are dying). Am just a bit concerned that this is just nother reason to drag their feet. Am also concerned because I don’t want to wait for Lap/Cap to fail before having CK. I want to have CK, and then use Lap/Cap to delay recurrence.
All I can do is wait and see how the Marsden deal with things.
Really sorry, Lemongrove, we’re having an issue across the forum with some posts disappearing so it seems like that’s what’s happened here. It’s really helpful when we get specific details like you’ve just provided as it helps our technical team to track down what’s going on. But for the moment, I’m afraid the post is no longer in our system.
Kind regards
Lucy
Yes I did post yesterday and was baffled myself where it had gone. Anyway, will try again.
Thanks Lemongrove and Valia for your good wishes. Had my results yesterday and ALL mets have responded to treatment and have shrunk in size. Brain mets down from 19 mm to 14 mm and 6 mm to 4mm and the inflammation has subsided. All lymph nodes have decreased and some are within normal range but the biggest result has been my liver met down from 35 mm to 10 mm. Even my bone mets are stable and there are no new growths. This is the best news I’ve had for a long time and has given me such a boost.
Obviously, I will be staying on this treatment for all long as it keeps working although my onc has reduced the cape dosage slightly as I am suffering with mouth ulcers, sore feet and split fingers but, hopefully, this will all heal in time. Can even tolerate the side effects as long as the results are good!
Off on my cruise in two weeks and I will be savouring every single moment and memory with a spring in my step.
Liz x
Nannie, that’s excellent news. My treatment also shows some necrotic tissue, so the cancer cells are dying. The Lap/Cap combo seems a good solution doesn’t it?
Have a wonderful cruise.