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
I'm on same chemo to contain and treat not cure 
I started cycle 4 today. I've not lost my hair yet, although it's very thin I can style to cover for now.
hello Weekend Walker I am delighted that the treatment has reduced your tumor and node ! For my part, I only started carboplatin/paclitaxel on August 2, I don't have a scan before the end of September. I tolerate this chemo much better than the modified DCF (which made my tumor disappear before it reappeared 4 months later). So regarding your question about radiotherapy, I am being treated in France and the first line of treatment here is also radiotherapy coupled with oral chemotherapy with Xeloda and 2 cycles of mytomicin. From what I understood, this protocol cured 80% of patients. Unfortunately, when it doesn't (for me the tumor came back after only 4 months there too) the curative options are slim. I saw that there was currently a clinical trial which consists of putting new patients on modified DCF in order to reduce the tumors as much as possible before drawing the "nuclear weapon". in fact radiotherapy is one shot, (can’t irradiate twice in the same location) it is therefore better to weaken the tumor to maximize the chances of sterilizing them with radiation. This could become the first-line protocol. For my part, I regret not having had this scheme which allows a crescendo attack, because in fact, radiotherapy being the strongest "weapon", everything that comes after is weaker, and less effective. Maybe the members here with secondary tumors had them in another locations which allows a new radiotherapy ?
In my case the doctors were so sure they would cure me with first line radiochemotherapy! I think that is starting to change, there are many of us on the forum for whom radiotherapy has failed, I imagine that it is the same in other countries.
I also think that at our stage a solution would come from immunotherapy (as Alex suggested), and I am crossing my fingers that a treatment or a trial will arrive... This is my hope to hold out through these very aggressive chemo treatments for the body but with a limited effect on tumors. My doctors today hope to block the growth of tumors, not destroy them, same as Jinnie Which is already good, but I can't imagine staying on chemo for years... Well, I would say that today I'm moving forward one day at a time, and this chemo has the advantage of not making me very sick. which allows me to carry out everyday activities without too much difficulty. I also hope that my tumor will shrink and stabilize, I will keep you posted.
strength and courage to you for the rest of your chemo 
xox
Hi Irene, actually the trial isn’t regardless of the stage at diagnosis. Here’s the trial:
PRODIGE 85- KANALRAD : Prospective Randomized Phase III Study Evaluating Induction Chemotherapy (Modified DCF 4 Cycles) Followed by Chemoradiotherapy Compared to Standard Chemoradiotherapy for Locally Advanced Anal Squamous Cell Carcinoma (T3-4 or N1a, b or c) (KANALRAD)
apparently it’s French, I do think it is a good strategy. I was T2N1M0. Nothing that worried my oncologist at the diagnosis …See the result after 2 years of unsuccessful treatments…
thanks for the hug
take care 
️
Helen
