Radiation + Chemo (Mitomycin-Fluorouracil) for anal cancer: Anyone?

checking in on you as you go forward in your journey
hugs from kindred spirit who is only a month ahead of you .!!

As I said, my treatments ended October 15th, had MRI and CT scan which were both clear of all cancer!!! 60 days. I am still healing (which I feel has been more difficult than the treatments) but very pleased with the progress.

I too had anal cancer. I had radiation and treatment with Capecitabine for 6 weeks. The chemo was in pill form. The side effects from the chemo were mild. Loss of appetite and feeling tired. The radiation wasn’t as easy to tolerate. The burns and damage to the skin were very painful. There was a week when I could hardly get dressed. One thing that helped was a bidet. My husband insisted that we have one installed. It was really a lifesaver. I also used a lot of Aquaphor cream. It is now 2 years later and I have been cancer free. I have scans every 6 months. The radiation cooked my sphincter muscle so now I have an ostomy. It’s been a year since that surgery. The ostomy has given me my life back. My next set of scans is in March. If those are good I won’t need more scans for a year. I hope this helps you in your journey.

Hi Clare1235,
Thanks so much for checking in on me; I really appreciate it.

Yesterday I had my 15th radiation treatment - 1/2-way home! I get my next round of chemo starting on the 23rd - 4 days with the pump and then hopefully that will be the end of chemo! So far, the side effects haven't been too bad. I have not been nauseous. I do tire more easily than before. I sleep really well. My appetite is hit and miss but I haven't lost much weight, and my blood labs have been good. My skin is still OK - no burning or blistering - but my "tushie" is sore! 🙂 I have a bidet, which so far hasn't made much of a difference in my discomfort level. I got a portable sitz bath, I lather up with aquaphor and I have a lidocaine cream that helps. I gather from what I've read, that things will presumably only get worse before they get better, but I am hopeful that I will beat the odds; I am remaining optimistic!

I hope you are continuing to do well and that you are able to fully enjoy the holidays. I will keep you posted as to how I do with the next round of chemo (I have to admit, I'm not looking forward to it!) 🙁

Hugs, Angelika

Hi rioa21,
Thank you for responding to my post.

I am 1/2-way through my treatments and, so far, I have not had any harsh side effects, the kind you describe in your post. I am on the chemo pump, not pills, so I have 2 rounds of chemo, my 2nd starts on the 23rd. I have had 15 radiation treatments, with 15 more to go. When did the burns and damage to your skin begin? I have been using Aquaphor cream since the start of my treatment, as well as some lidocaine cream to help with the rectal discomfort. I realize that the effects of treatment are cumulative, and that my side effects can worsen, but I insist on remaining positive and hopeful that once my treatments stop, I will have nothing but smooth sailing from there on out! My husband and I booked a cruise to Japan and China for November 2025, and I have every intention of being on that ship, sipping wine on my balcony, enjoying the ocean breeze and feeling that all is right in my world! 🙂

Wishing you a merry and a happy!
Hugs, Angelika

Being positive is the key!
The burns started as the radiation advanced. Everyone’s tolerance and level of radiation can be different.
It’s funny that you mention a cruise. My husband and I just returned from a cruise. Our first vacation since my diagnosis. It felt good to be away!
Sending you the very best!

so good to read that the ostomy gave you your life back
This helps take away the fear and reservations should that prove to be my path as well
Thank you!!!!

you are doing great!!!!
yes "sore tushie" is the deal!!!! and the portable sitz bath is very very helpful to me
Sore tushie has been a constant companion, not invited , but shows up anyway !
Aquafor and Silvadene ointment help
You may very well beat the odds on further discomfort !! I will be optimistic with you!!!! so glad you are doing so well with this !! YAYYYYYYYYYYY
Look forward to any other news !!! Enjoy your holidays and I hope you are either at home or can go there !!!

Yes, my treatment was very similar. Never want to repeat it 😖. Grade 4 mucositus (?) in the mouth so swallowing medicine and water near impossible. Radiation burns with skinned blisters where underpants should be. Recovery was rapid a few weeks after finishing treatment. So: my advice? Be creative with dressings , use the creams for healing and topical pain relief. Accept all the help you can get. Australia is pretty good for these things, local Community Nurses are priceless. If you have a tough time, remember that there is an end date to it all.

A quick question: did you experience hair loss? I haven't lost my hair but it is starting to shed more. My doctor said thinning is likely but complete hair loss is not. No one has mentioned hair loss as a side effect, so I was just wondering if you experienced any. Thanks!