Hi my lovelies,
I’m at clinic with my special person on Tuesday so will update you with her then!
My scenario question is you have Carbo/Taxol, get told it’s not working the oncologist automatically assumes the carboplatin isn’t working you’re platinum resistant, is there an actual test or do they just assume it’s the carboplatin? Xxx
I was thinking of you earlier today and wondering how you and your special person were. From my understanding, they just declare you to be platinum resistant. There’s no testing.
Hope the appointment on Tuesday goes to plan (although it sounds like you are preparing for it not to?).
Vicki x
We always prepare for it to go bad then if it’s good it’s a bonus but she said she can feel it’s not working and I’m almost certain myself it’s not working her numbers went up at the last appointment, but as I say I’ll update everyone on Tuesday when we know what’s going on xxx
Platinum resistance is assumed if you have a recurrence less than six months after treatment. Or if there is little or no change during platinum treatment then that is also considered to be platinum resistance.
I had six sessions of Carboplatin ending last October in January the tumour in my bladder was identified so I'm considered to be resistant.
LA xx
Hi lovely. You are so wonderful to your special person. Wish I had someone like you. But, as the girls have said, we just seem to be told we are resistant. I had carbo for the full length, with other stuff on and off and then avastin alone from January and then carbo with caelyx. From January the cancer just grew so obviously the avastin, carbo and caelyx weren't doing their job. I think when the scan results confirm the growth then it's obvious there's a problem with the drugs so we just have to accept it. I'm now on hycamtim. It's an old drug i.e. been around for years. No idea if it's working. Not much written about it on the forum either so I'm in the dark.
Please give your special person my love and tell her that I'm thinking of her. Hoping to see her back on the forum one day with some good news.
Love and hugs Kryssy xxxx
Hi Kryssy,
Glad to hear you have a new Regimen. Hycamtin could be the ticket for you and I hope it is.
This is a long article and all the efficacy info is at the end.
medicines.org.uk/emc/produc...
Best of luck,
Laura
Hi Laura.
Thank you for taking the time to look up something for me. I have read it but not fully digested all of it. Looks like that if it works it can buy me a few extra weeks. Years would have been nice though. Once again, thank you. xx
Best of luck to you both Tuesday, I would ask if there are any other drug such as Parps to use, hopefully ye will know more and have a plan next week
She’s already had Niraparib but I just want to cover every base so depending on what we’re told I have an answer for everything xx
Interesting question as my mum is (back after 5 months) but when she when to the marsden the proff said 'the number doesnt matter as it worked for some time'. Confusing eh! X
Hi I just saw your reply to this post I am considered to have disease progression on sept 21 its small but still there I have no symptoms but only finished front line chemo on April 6th so in the marsden would they have considered your mom platinum resistant after 5 month recurrence, I am been treated in Limerick in Ireland but going to Dublin hoping they can shed more hope or open-mindfulness thanks Clare xxx
I recurred during frontline carbo/taxyl and was just told there was no point in me having either again ad they had done nothing at all.
I asked the oncologist today and as you lovelies said it’s just assumed that you’re platinum resistant thanks xxxx
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