Hello there,
I’m new here but I don’t think I’ve read a case similar to mine in treatment’s failures.
It all started in July 2022, I was 49. In September had the diagnosis : anal SCC. T2N1M0
I had chemo radiotherapy until December. (Chemo was two infusions of mitomycin and Xeloda pills the week days). On march 2023 I had a complete response. But 4 months later the PET scan showed it was back. APR surgery and stoma were planned for August (probably the most horrific time of my life). Apparently surgeon was unable to remove all of the tumor because it was so close to sciatic nerve, blood vessels and small intestine (in a very damaged landscape due to radiotherapy). And 2 months later it was back again (20x20mm). I then had a chemo: DCF modified, 8 cycles. Was so hard but I was keeping in mind it can still cure me. Ended in February this year. March TEP was clear but I couldn’t feel happy. For 2 years I have never gone more than 4 months without a recurrence. This is why I have scans very close together. well it didn't fail, the June exams showed the return of a 10x20mm tumor. it's always in the same location... Now the doctors are offering me a new chemo with Paclitaxel-carboplatin. 6 cycles. They told me that the goal was no longer to cure me but to keep me alive. But they also said it’s not a chemo I can live with because very toxic. I should not consider having it for more than a year they said….
I am divorced and live with my 2 kids (17 and 14). I was supposed to go on vacation next week. So I declined the chemo for now. I want to go and have this vacation with my kids. (But it’s planned for august). I still haven’t told my kids. How to tell them once again…Plus, now I have no hope…I just can’t believe it’s happening, there is no end to this nightmare. I realized I’d probably never go back to work…I spend my day in bed since I saw my oncologist. I am quite an isolated single mum, with no close family and few friends.
I know I should be strong for my kids but I no longer find the resources within myself.
have some of you, like me, failed all these consecutive treatments ? Did you have Paclitaxel-carboplatin when surgery and radiotherapy were no longer possible and what was the effect ?
And for those who experienced such loss of hope, how did you get back on track when you thought you were doomed and you no longer wanted anything?
That’s a long message, thank you for reading me and for the help you can provide
Hello Weekend Walker,
so sorry for my late reply .
I’ve just ended my 3rd cycle. 2 weeks feeling tired and nausea. Still have my (short) hair. My PET scan is in 10 days. We’ll see, I’m not expecting miracles…I do feel the tumor (in what’s left of my vagina).
I just don’t understand why your oncologist sees you 4 weeks after your scan, such a long time to wait !!! Did they told you anything after the scan ?
I’m sending you all my positive thoughts hoping that chemo will have results on you .
I would be happy to stay in touch with you, as I also find it helpfull to share with people having the same treatment. forgive my late replies though
Let me know how about your scan report (if you want)
I´m here, with you
xox ️
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Hi Helen they didn't say why 4 weeks just that they were giving me a rest
I'll let you know when I get my results
I'm getting better and stronger each week and if it's more treat.emt I'm.rrady
Thanks for your support and like I said ill keep you all posted xx
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