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
Hi Jinnie , I’ve no personal experience of your situation but just wanted to say I hope your scan appointment comes through quickly & this can be resolved. Thinking of you.
Nicola
Hi weekend walker
sorry for my late reply
not really surprised you feel more tired after 5 cycles, those products are really strong. If your body needs some rest it’s important to listen and just take the time to “recover”.
I had 2 cycles. First 2 weeks I’m sick, then I have 14 days without perfusion so it’s better. It’s really easier than DCFm chemo I had last winter. I still feel the tumor so it makes me anxious. I’ll have a PETscan end of September.
that said I still feel pretty weak. I think my body is exhausted from these 2 years of treatments. I don't even remember what it's like to get up in the morning and feel good anymore. but my mind is holding on, I avoid thinking. I live one day at a time and don't make plans for more than a week.
I'm thinking of you and I hope your scan will be positive 
take care
xoxo
