Anyone doing Chemoradiation?

Posted by samclembeau @samclembeau, Oct 12, 2023

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.

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@samclembeau

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.

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Thank you, Sam,
I am feeling much better now, 3 weeks post chemoradiation, the radiation burns are almost healed, and I am finally able to resume my walks in the neighborhood. My next hurdle in my journey -the chemotherapy - awaits me in November 🤞.
Each body is different, the symptoms might vary and your timeline for recovery from the treatment might differ - but most importantly trust in your doctors, ask them for the Best advice for You, and finally, Believe in the Positive Best End results for your journey🙏
Best of luck with your decision,
Eva G

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@samclembeau

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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Thank you. Yes, my 6 month scans are later this month. For the ureter cancer, I first had surgery to remove the kidney, ureter, & bladder cuff, along with some lymph nodes, & an unsuccessful attempt to remove the tumor. It had grown into the muscle, & was “gooey” & fell apart when they tried to remove it, so they had to leave it. That was followed by 4 courses of chemotherapy (cisplatin & gemcitabine). It was supposed to be 6, but it was really wreaking havoc, so we had to stop. That was followed by 30 radiation treatments. My scans were clean for 15 months, before this new one showed up. Of course I’m hoping for a longer response this time. Thank you for the well wishes.

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hope this one is easier than the first.
positive thoughts for you.

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@2023badasseva

Hello Sam,
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 1300x2 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 ;))

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Thank you

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@samclembeau

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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My scans showed no evidence of disease (NED), which is always the result we hope to get. The ureter cancer was treated with four courses of chemotherapy (Cisplatin & Gemcitabine), it was supposed to be 6 courses, but my reactions wouldn’t allow for the last two courses. After recovering for a month, I had 28 radiation treatments. I am stage IV metastatic, in palliative care, so our hope is for time. I am still having pelvic floor physical therapy for the damage caused by radiation. I feel very optimistic about my recovery. Hopefully these results will last longer than the first treatment.
How are you doing? Did you decide to go forward with chemoradiotherapy?

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@amyb5

My scans showed no evidence of disease (NED), which is always the result we hope to get. The ureter cancer was treated with four courses of chemotherapy (Cisplatin & Gemcitabine), it was supposed to be 6 courses, but my reactions wouldn’t allow for the last two courses. After recovering for a month, I had 28 radiation treatments. I am stage IV metastatic, in palliative care, so our hope is for time. I am still having pelvic floor physical therapy for the damage caused by radiation. I feel very optimistic about my recovery. Hopefully these results will last longer than the first treatment.
How are you doing? Did you decide to go forward with chemoradiotherapy?

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i am taking step forward for chemoradiation, but i am still keeping the door open for proton radiation instead. i will probably know more after meeting with dr from proton center tomorrow. fingers crossed i get accepted to get proton instead of standard radiation.

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@samclembeau
I'm almost 59. Precisely a year ago I took the decision to accept chemoradiation at the lowest dose possible for a very low lying rectal cáncer not even stage 1 (positive margins of the resected polyp). I took 2 tablets of Capecitabine in the morning and 1 in the evening the days of the RT (Monday through Friday). I stopped the Capecitabine after 23 or 24 days, because I starting having parestesias in my left extremities. I kept exercising during the RT in spite of the burns, I just adjusted what exercises I did and the intensity.

My polyp was very close to the sphincter. Now I have developped a very rare rectovaginal fistula 3.2 cm from the anus, in the middle of the necrotised rectal tissue, and we found a ¿new? polyp across from the fistula. My sphincter was not affected by the radiation.

I'm going to have surgery to get rid of the fistula and the polyp.

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@verol65

@samclembeau
I'm almost 59. Precisely a year ago I took the decision to accept chemoradiation at the lowest dose possible for a very low lying rectal cáncer not even stage 1 (positive margins of the resected polyp). I took 2 tablets of Capecitabine in the morning and 1 in the evening the days of the RT (Monday through Friday). I stopped the Capecitabine after 23 or 24 days, because I starting having parestesias in my left extremities. I kept exercising during the RT in spite of the burns, I just adjusted what exercises I did and the intensity.

My polyp was very close to the sphincter. Now I have developped a very rare rectovaginal fistula 3.2 cm from the anus, in the middle of the necrotised rectal tissue, and we found a ¿new? polyp across from the fistula. My sphincter was not affected by the radiation.

I'm going to have surgery to get rid of the fistula and the polyp.

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wish you the best of luck. please let us know how you are doing.
glad to hear you sphincter muscle was not affected.

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In reply to @robal "Thank you" + (show)
@robal

Welcome, @robal. Is chemoradiation a treatment you are preparing for?

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@colleenyoung

Welcome, @robal. Is chemoradiation a treatment you are preparing for?

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yes.
proton radiation with 5-fu

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