Helpful Blog & 1/2 through treatment

Hello! First off, I am thankful for the information and tips I have read on everyone's blogs. I am taking notes about ointments and treatments for issues that may occur later. Thankful for this website/blog!

I started ChemoRadiation treatment 2 weeks ago. My experience so far: 1st week nausea, loss of appetite, lost a few lbs, red flushed face/neck/chest lasted for a couple of days, constipation 2nd week: nausea is better, appetite is back, itchiness started up down below (tolerable), mouth sores/gum sensitivity, rash/reaction where my PICC line was removed (probably from the tape?), and still dealing with some constipation. I am in a clinical trial for early stage anal cancer that is 20 days of radiation and one cycle of mytomicin 5 FU ( during the first week of radiation). 

 I wonder what week 3 will be like. Trying to stay hydrated and going on walks daily. 

6 people sent you a hug.
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Everyone has a different experience...just keep remembering that it's only six weeks of treatment, not six months or more as for some other cancers! Hang in there! A collection of information on my website: www.analcancerhelp.info
Leanne, Janice like this comment
Thank you, I will check out your website.
Just looked at your website! Wow! Very helpful! Thank you again!
It sounds like you are doing fairly well so far…I’m excited to hear that for you! Please let us know if there is anything we can support you with.
Leanne, Easterly like this comment
Thank you! I probably will have questions later.
Did they tell you to push water, and have a full bladder for radiation? I don't know if that's still necessary; which got me addicted to lots of water everyday.
Also, the use of a dilator; we have ladies here that can give good info, if you haven't been told that.(Tyndell, and Daisy are great; and of course, Helens website: http://www.analcancerhelp.info/
I tended to the constipation,too, and still use magnesium oxide 250mg a day and lots of fresh fruit and veggies.
You are doing great! We welcome any questions.

Hugs!
Leanne, Janice like this comment
Thank you for the information about dealing with constipation. Yes I have to have the full bladder and they use a dilator during radiation.
Absolutely need to start early with the dilator, my radiation oncologist was too embarrassed to discuss it and by the time I started, the week after treatment, it was almost too late.
Easterly, Leanne like this comment
Ok! sounds like they are taking good care of you!
Leanne likes this comment
Wow! A dialator during radiation! Well now that's definitely new! So glad to hear the issues with stenosis are being proactively addressed.
Easterly, Leanne like this comment
Recommended on the website of the University of Wisconsin medical school several years ago.
Leanne, Sara like this comment
I had not heard of a dilator until my doctor explained that the radiation nurse would be inserting one in me before each radiation treatment. They tape it to me so that it will not come out.
Easterly, Sara like this comment
Sounds like things are going good so far. Fingers crossed for the rest of treatment. Wow! This study sounds great. Less treatment is good news for less side effects. 😊 Hang in there almost done.
Leanne, Easterly like this comment
Yes I am hoping the rest of treatment goes well! Also hoping the trial has good results. Thank you for your comment! :-)
Nicole likes this comment
I think the last report was very good results!
Leanne, Nicole like this comment
Hi, Leanne. The trial you’re in appears to include 10-13 days less radiation and one less 5FU+mytomicin cycle than the previous Nigro standard treatment. I read elsewhere that this reduced chemo radiation treatment for stage 0 or 1 showed efficacy. Most of us here had the standard Nigro. I can say for me (Stage 3 ten years ago 🤗🎉) that the painful radiation treatment side effects came on after 20+ days and moreso after the second chemo cycle. These are the treatment days you’ll be skipping!! I don’t know if the radiation you’re getting is stronger, but from what I read, I think it isn’t. So, with a bit of guessing involved here, I think there’s a very good chance you will not have the intense treatment side effects typically encountered with the Nigro regimen. Best wishes for you!!

On an aside, I would love to hear something done about the ever present problem of doctors treating anal cancer as hemorrhoids. This problem has been around forever and seems to continue unabated. (My colorectal surgeon told me that gastroenterologists need a major skill upgrade if they can confuse a tumor with a hemorrhoid.) And here it is 2022 and it happened to you. 😞
5 people like this comment
I only had one round of Mytomicin - two of 5FU (such a great name!) The oncologist thought that the Myto was doing too much damage. So far, dancing wihth NED!
Leanne likes this comment
Good to hear that you read about the trial and that it showed efficacy. I am sorry that you and others experienced intense treatment side effects. I am feeling a little more pain now when going to the bathroom, but I think that is expected.

Seems like there is a need for doctors to be more proactive and screen for anal cancer better.
Helen Marshall, Cleo like this comment
and gastroenterologists need to learn to maybe do an anal pap smear and an anoscopy when first presented with questionable symptoms..like bleeding, itching, etc
Leanne, Easterly like this comment
I had one day of mitomycin C and 5FU pills(xeloda) 5 days a week concurrent with radiation. I did not have the mouth sores,white count problems etc, but
bladder and bowel problems and pain in the treatment area. I hope the reduced radiation becomes a standard...because in the end, if there are some
late effects, I think they are from the rads!
Leanne, Cherie like this comment
I am having some painful BMs now. I go straight to the bathtub afterwards.
Your side effects sound similar to what I experienced. Hang in there, you will be done with treatment before you know it!
Leanne likes this comment
Thank you for your encouraging words!
Smurf likes this comment
Leanne, what is the name (number) of this trial? It sounds very promising
It is EA 2182: De-Intensified ChemoRadiation for Early Stage Anal SqCell Cancer (Decrease)
I didn't realize that there is such clinical trial taking place. If successful will reduce radiation by 8 days and 2nd course of chemo. That is awesome. Hang in there, it will be over soon
Leanne, Cleo like this comment
Sounds like you’re doing great! I must say I’m jealous. It was the last 10 days of radiation and the second chemo dose that really did me in. If you can avoid that, consider yourself very lucky! Please keep us posted! We’re on the sidelines cheering for you :-)
Leanne likes this comment
Thank you so much Terri! The support and encouraging words have been so helpful and appreciated!
Hi Leanne, welcome to our group. I'm curious about the clinical trial you're on. Were you offered a choice between standard treatment and the trial? It seems with just one round of chemo, your treatment won't be as bad. I was OK till I had the second round around week 5 which made the burns so much more painful. But I was stage 3B so I would have had to have the full shebang anyway.

Best of luck to you on the remainder of your treatment!
Leanne likes this comment
Hi Mari. Thanks for the welcome! This group has been very helpful.
I was given the choice of MD Anderson's standard treatment (which is a little different than the Nigro Standard Treatment) or enroll in the clinical trial.I chose the clinical trial and I was randomly picked (by a computer) to be in the arm of the clinical trial that is the treatment group - decrease of radiation and chemo (there were two arms one was the Nigro standard treatment and the other arm was the decreased chemo and radiation).
This week I have had low white blood cell count, red blood count, and neutrophil and my hair is thinning which the doctor said is caused by the 5FU+mytomicin cycle I had the first week of treatment and this is expected. I am also experiencing very painful BMs which I was told is from the radiation.

I am sorry to hear that you had such painful burns during your 5th week. How many years ago was your treatment?
Thank you for the luck! Hope you have a good weekend!
That's so great that they are trying different approaches to the Nigro treatment. I was diagnosed in Feb 2011 so I hit the 11-year mark this year!

The hair does thin a bit but nothing drastic. One of my biggest problems during treatment was such severe diarrhea that I'd have to go get IVs cause I'd be so dehydrated. You seem to be going the opposite way with constipation.
I got one of those hand-held sprayers that attach to the toilet which was a life saver during treatment. To this day, I use it cause the skin down there gets very easily irritated.
Hope you have a good weekend yourself! The rest of the treatment will be over before you know it and then you just get better and better, you'll see.
Leanne likes this comment
Thank you for sharing about what helped you when you had pain/irritation. 11 years! That is great!
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Vital Info

Posts

June 19, 2022

college station, tx, United States

Cancer Info

Anal Cancer

squamous cell cancer T1NOMO

May 19

Stage 1

0.1 - 1.0 cm

No

Mitomycin

side effects during treatment and not knowing what the long term side effects might be

There are many helpful and caring people who support me.

No

I am in a clinical trial: De-Intensified ChemoRadiation for Early Stage Anal Squamous Cell (decrease)

MD Anderson Houston

In January of 2020 I noticed a little bump on the perianal area. My doctor examined it and treated it as a hemorrhoid. With COVID19 happening that Spring, my next doctor's appointment had to be rescheduled to May. My doctor examined it again and noticed it was not getting better so she referred me to a surgeon who removes hemorrhoids and skin tags. The surgeon thought it looked like a skin tag. He gave me the option to surgically remove it or leave it. Since it was a little painful and annoying I chose surgery. After he removed it, the pathology results came back as a T1N0 invasive anal squamous cell carcinoma. After this I was seen by doctors at MD Anderson for the next two years. No concerns were reported the rest of 2020 or in 2021. In May of 2022 I was scheduled for a colonoscopy at MD Anderson. The doctor was concerned with some abnormal looking tissue in the anal canal. Biopsies confirmed 1 mm squamous cell cancer and I was diagnosed with T1NOMO. I started a clinical trial with chemo radiation on June 13.

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