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 hear you Helen94 , unrelated to cancer but our little family seems to be taking hit after hit at the moment, having lost 2 close family members within 3 weeks of each other one of them being my beloved dad my sister had some news this week that has yet again delivered another body blow! Life just isn’t fair sometimes is it? I don’t want to be that person but why do such bad things happen to such good people?
I also know where you’re coming from on the friends & ‘toxic positivity’ front, I’m blessed with a lovely bunch of friends but I’m the only one of us (thankfully) that has been through a cancer diagnosis, I know they all mean well but they really don’t have the slightest idea! Once I’d completed my treatment they’ve presumed that all’s good & everything has gone back to normal etc., etc., & I really don’t have the inclination to explain the ins & outs of long term recovery, the residual anxieties that this journey leaves behind & so on!
I'm so pleased you have someone to speak with also, it’s so important that you don’t harbour the feelings that this latest news has left in its wake.
I've read through your replies to everyone on this thread & you speak of the changes in your life, your divorce (I know that feeling of freedom & the cutting loose of dead wood!), regaining your independence, your career gathering momentum & your hopes for that future, this made me cry, as difficult as it might be right now please don’t let go of those dreams, go away & have your vacation with your beautiful children, recharge a little & try to absorb a little of that hope that you want your children to hold onto.
More virtual hugs heading your way.
Nicola
Hi Alex, thank you for all this information. It’s very interesting. Radiation and chemo failed for me but actually I’ve never tried immunotherapy as it’s not available in Europe in that cancer localisation. You are right, I have no anus (or rectum) anymore since the APR. That is a devastating surgery.
anyway, you guys helped me standing up again, and I won’t give up.
Time is for rest and holiday for me now.
I’ll search some trials when I’ll be back
Thank you very much for answering me
take care
Thank you so much for your kind words 
️
I’m feeling a little better after all the support received here, and I’m getting back on my feet. It’s not over. I’ll go on holidays then I’ll be back to fight again
Thank you so much for helping me feel strong
