wondering how those of you who are going through clinical trial of low dose chemo and radiation are doing.what are the side effects?fingers crossed for you.
Interested in more discussions like this? Go to the Colorectal Cancer Support Group.
Hi @samclembeau, I moved your discussion about chemoradiation for anal cancer to the colorectal cancer support group. I believe the @2023badasseva and @susanwatanabe have had chemoradiation therapy and can share their experiences.
Sam, are you getting chemoradiation? Are you part of a clinical trial?
still weighing my options colleen.
want to know more before i decide to go ahead
@samclembeau, I did chemoradiation when I was diagnosed with anal cancer. I’d be happy to share my experience if you’re interested. Tim
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did you do the full course or the new half dose.
how bad were the blisters? how long did they last?
was yours hvp related?
has it returned? what are your odds?
was it on your sphincter muscle? was it harmed?
please share your experience Tim.
I have to make a decision soon I guess.
@samclembeau, I did the full round of radiation and two rounds of chemo (5FU) both were unpleasant but not unbearable. The blisters were very painful however didn’t present until about the 10th treatment, at one point I had to skip a week to allow them to heal. I also had blisters in my mouth and throat due to the chemo. My cancer was due to HPV and my sphincter was damaged due to the radiation. Everyone is different however I was out of commission for about 6 months, I slept a lot and my diet was limited to soft food, (my choice) I was treated in 2007 at the age of 45 and in 2021, it returned which I was told is uncommon. In 2021 I wasn’t able to do chemoradiation again as I had maxed out on the radiation and had anal scarring. In December 2021 I ended up having an Abdominoperineal resection (APR) and because of the scarring, a rectus flap. I know that the chemo and radiation sound daunting/overwhelming but it gave me 15 years cancer free. I blogged my experience from start to finish which helped me get through it and let my friends and family know what I was going through. You’re not alone in this journey.
thank you Tim for your quick response. helps me a lot.
i pray for you and what you are going through now and hope for the best outcome possible.
Hoping for another 15years +.
Sharing my experiences with recent ChemoRadiation for rectal cancer (T2N0M0, a Signet Ring cell adenocarcinoma, localized in the rectum).
I completed a 25 session treatment of ChemoRadiation on Oct 4, 2023 (3 weeks ago), aiming to shrink the tumor to an operable size. My treatment was with Capecitabine (aka Xeloda), the dose was 1300×2 on the days of the treatments (combination of the 500 and 100 pills), 5 days a week, and rest on the weekends . I am not sure if this is a low dose, or a clinical trial, this was the combined suggestion of my chemotherapy and radiology lead doctors for my type of cancer, aiming to shrink the tumor, so it could be surgically removed. I am currently in the ChemoRadiation recovering period, with a chemotherapy to follow, treatment plan to be finalized in November. I did not have any side effects during my ChemoRadiation treatment, no change of appetite, no nausea, no fatigue, no diarrhea, only the continued constipation, and the urge to pee and poop (both painful during the post radiation burns flare). A week after the end of my treatment I started feeling tired, and the full blast of the radiation burns hit me: the pain, the itchiness, the burning in the genital and anal area, the lack of sleep- it was hell 😣… I am really glad it is over now, 3 weeks later! One thing that it is still a mistery to me: a week after I finished my treatment I started getting itchy pimples, first on my back, then on my chest, mostly on my arms and legs, including around my anal area. They felt like mosquitoes ' bites, and continued to pop up until recently. The radiology doctor did not think they are related to the Radiation, as they started appearing post treatment, and prescribed hydrocortisone cream. My family doctor prescribed antihistamines (both Reactine and Benadryl) which seem to help with the pimples on my body, at least not itchy anymore, and no new ones appearing recently… I haven't been seen by my chemotherapy doctor for that. Although this past weekend (2 weeks after the end of treatment) I noticed that I have a rash on my face, which is very different than the one on my body. The rash is more like tiny pimples with a red base, more like a single pore with a tiny puss cap, and they are not itchy. I just not feel right using the corticosteroid cream on my face, so I clean it with rose water a few times a day. I also made a honey mask yesterday on my face (spread some natural honey on a facial tissue and left it 10 minutes), which reduced the rash and the redness on my face. It looks like my body reacts later than usual to the ChemoRadiation treatment. My own research brought me to the Canadian Cancer Society page, where skin issues as the one I am experiencing is mentioned: cancer. ca/en/treatments/side-effects/skin-problems
I hope the above (longwinded) experiences help shed some light on what is expected from ChemoRadiation treatment, and are helpful to anyone who might have to go through this as well. Wishing you a ALL the BEST,
Eva G (aka BadAssEva ;))
I had chemoradiation for 6 weeks in April-May of this year. The treatment included 30 radiation treatments with FU5. I only made it through 1 of the 2 FU5 courses, because of side effects (the biggest problem was my blood, platelets got down to 11, I don’t remember the other counts, but my rbc, wbc, hemoglobin… all tanked as well). The burns & blistering got bad around the 10th treatment, & continued to worsen for a month after finishing radiation. It took about 2 months from when the burning stopped, to be healed to the point of manageable. I saw the colorectal surgeon at the beginning of the month, she assured me that I will heal completely. Mine is also hpv positive, & involves the muscle. I would say the state I am now in, is manageable. This was the second cancer I have been treated for in two years. The first one was thought to be ureter cancer (UTUC), but when they found the anal rectal cancer, they decided that it most likely is the primary cancer, & the ureter cancer was actually from a metastatic lymph node that invaded the ureter. I will have my 6 month follow up scans in November. The August scans showed that the tumor had diminished but was not gone, & the associated lymph nodes were gone. This is what the oncologist expected, as it can take 6 months to resolve.
If you decide to do this treatment, you will get through it, although it is extremely hard. I resisted pain medication, I would not do that again. Also, we attached a bidet sprayer to the toilet. It was very helpful. They can be found on Amazon, are inexpensive, & easy to attach.
Good luck to you. I’m sorry you are also on this journey.
what a hell to have to go through. i hope all the post follow-ups will find you back in good health..prayers and positive thoughts your way.
so sorry you had to suffer like that. thank you for the frank response. hope all is well now and is better than "manageable" . you should be ready for your 6 mo. check-up? please let us know how it turns out. my fingers are crossed they say you are free of cancer this time.
curious…how did they treat the ureter cancer?
praying your nightmare is over.
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