cancer recurrence

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Hello everyone,

My name is Alex. I previously posted about anal cancer recurrence and wanted to share an update.

After my MRI, I was told I may need a total pelvic exenteration to achieve clear margins, which came as a huge shock, as I was originally expecting APR surgery. My case was discussed at an MDT meeting, and an alternative option was suggested: carboplatin, paclitaxel, and RETIFANLIMAB, which gave me a lot of hope.

However, on the day I was due to start treatment, I was told the immunotherapy (ritifanlimab) was not available. I have now started chemotherapy and am in my first week, but without the immunotherapy that was planned.

Has anyone here had experience with carboplatin and paclitaxel combined with immunotherapy (especially RETIFANLIMAB), or started immunotherapy later? Any experiences would really help.

Thanks

Alex

Irene75359 1 day ago

Hello ALEXbukaf4650d

I had carboplatin/paclitaxel prior to the chemo/radiotherapy treatment as I had a spot on my lung so was stage IV at diagnosis. I was offered the chance to have immunotherapy combined with it but this was under trial conditions (as it was at the time) and crucially, I wouldn't have known if I was getting the immunotherapy or not, it was a blind trial. So I didn't go ahead as it meant much further travelling to a different hospital which if I had definitely been having the immunotherapy I would have done.

So sorry, my experience isn't exactly what you are looking for, however, I wanted to reassure you that the carboplatin/paclitaxol is a well-tolerated chemo and very effective for the treatment of anal cancer. I was told that it could eliminate the spot on my lung, but in any case they went on to do lung ablations afterwards as they hadn't completely cleared.

I had a quick look online and there is no reported shortage of Retifanlimab so I think this is definitely worth taking this up quickly with your oncologist especially as you turned up thinking this was the plan.

Wishing you the best of luck, please let is know how you get on.

Irene xx

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