A quick update as I haven't posted for ages: it turns out that I'm not eligible for any trials at the Marsden or UCH for a variety of reasons - Hb too low, ALP too high etc etc - so I'm back with my regular oncologist. The disease has spread to a lung and invaded the bowel, as well as growing rapidly in liver and spleen. UCH suggested Cisplatin and Etoposide as the next step, but my oncologist says I'm not strong enough to take it, and I have to admit I'm relieved, as it did sound daunting. She suggested stopping treatment but after a few tears (mine, not hers) she agreed that I can try three-weekly carboplatin with the Care Oncology Clinic drug regime. I am hoping that the C.O.C. drugs might make the carboplatin effective again. Oncologist thinks there is little chance of it working, but I want to try anyway. Realizing in just how many ways I'm not brave!!
Gina x
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Gina555
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I suppose you go with what you have decided for the moment, take plenty of rest and perhaps in a few months you might be able for the Cistplatin combo, Dont ever give up, have your tears then start the next day anew with determination, best wishes
So sorry to read your post, Gina. Just want to send my love and sympathy and say hang on in there. Fingers crossed there is something that will help you soon. Try to get lots of rest. Tiredness makes everything seem worse.
I just wanted to send you my love and best wishes for a brighter tomorrow. I am glad you are going ahead with treatment as you never know unless you try . Keep your hope alive . Take care.
Hi G. Very sorry to hear you can't take part in trials. Just saw your post. Are the Care Oncology Clinic drugs --- the reconstituted drugs from the London Oncology Clinic? And you'll take them in combo with carboplatin? Hope they help. Sorry this is so tough. Bravery and battling etc are completely missused & overused in cancer and other disease, in my opinion. We all cope the best we can --- nothing to do with ridiculously notions of " bravery". Sending healing vibes to go with drugs & chemos. Love
Yes, the Care Oncology drugs are metformin, atorvastatin and mebendazole alternating with doxycycline. Feeling a bit queasy on all these tablets, so trying to adjust the anti-sickness so I can take them. Yes, taking with carboplatin. xxx
What a time you've had..... Hoping this new regime gives you a bit of a break so you can marshal your resources.
Much better than last time I saw you, thanks. On Ariel 3 and doing fine, except I'm not tolerating sun well so am not looking forward to the lovely weather ahead. Just another reason for hating this disease and how it blights our lives! Off to water the garden before it heats up! xx
Oh Giba, sorry to read that you are not in a great place. How are you getting on now? And are the coc drugs working for you? It sounds like you have been having a rubbish time and I am sending you a huge virtual hug and hope that you are gearing up with all this going on, it certainly is one tough shitty journey. You do not need to feel 'brave' as none of us have a choice in this and all we can do us muddle through the days. So much love to you xxxxx
Look at the posting date top right of each message or reply. If it's a while ago and/or the person sounds very unwell, I click on their name as this shows how recently they've posted or replied. The longer you're on here, the more you get to know what's going on for people.
It's something that various people have tried to get the site organisers to do something about, so far with no success......
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Hello ladeez. 
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