Hi all

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

28 Replies

  • 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

  • Thankyou Suzuki x

  • 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.

    Best wishes, Solange 😊

  • Thanks Solange x

  • Wishing you all the best for your treatment with COC. No matter what your Onc says it is definitely worth a try. Hugs xo

  • Just wanted to send you lots of love. My heart goes out to you. What a crappy disease this is to put you in this position.

    Love Juliax

  • Easier said than done Gina but keep sthong. We are the same age and have a lot to do yet. Sending hugs. Tracey x

  • Just wanted to send you lots of love. Hang on in there, please don't give up 🌻🌻xx

  • My hospital buddy has just had her first sign of shrinkage in 3 years after trying several regimes. Never give hope. They may just find the key. Xxx

  • Sending you lots of love too. You are brave to have got this far. Keep posting and let us know how you get on.

    Lou xxxxxxxxxxx

  • Lots of love stay strong xx

  • Don't give up Hun, we are brave ladies and there is always a way through, they just haven't yet found the right combination for you.

    We are all with you,

    Carole xxx

  • Thank you so much for all the kind wishes - I feel like I was just in a big group hug! It really helps xxxxxxxxxxx

  • Lots of big hugs x

  • Hi Gina

    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.


  • Thanks Molly xx

  • Fingers crossed for you, sending a big virtual hug.

    LA xx

  • Thanks Lily-Anne xx

  • 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

  • Thanks for the vibes!

    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.

    Big hugs


  • Thanks Chris, hope you're doing well xx

  • 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

  • So glad to hear you're doing well - onwards and upwards! 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

  • Hi Nicky - I can see you're fairly new to this site.

    It can be a good idea to look at when a post was written and check that the writer is still active. It's upsetting when she is no longer with us.

    I'm sorry to say that Gina/Gaynor died in September.

    It's an easily made mistake. so don't worry about it. x

  • I am sorry...

    How do you know if someone is active?

    Thank you for your advice. X

  • It can be difficult!

    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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