What is radiation/chemo treatment actually like?

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Caat55
Posts: 677
Joined: Sat Dec 23, 2017 6:01 pm

Re: What is radiation/chemo treatment actually like?

Postby Caat55 » Sun Dec 15, 2019 12:21 am

Take the talk with the nurse seriously. Radiation changes everything down there. If you haven’t gone through menopause you will now. The sitz bath are good, a bidet seat better. Use the creams liberally. I didn’t wear pants, couldn’t wear pants after about half treatments due to soreness. Like you I worked all the way through, took time off post op and that’s it. Still get sore occasionally, once a week but living my life.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

annieliz
Posts: 48
Joined: Fri Jul 26, 2019 5:13 pm

Re: What is radiation/chemo treatment actually like?

Postby annieliz » Sun Dec 15, 2019 3:36 pm

Thank you, everyone, for sharing your tips and experiences. I am also starting 28 rounds of chemo/rad on 12/18. I already got the tattoos, and was supposed to have a set-up appointment with the radiation technician last Friday, but insurance denied the imrt procedure. So now on Monday, my radiation oncologist will conference with the insurance company and either imrt will be approved, or we will have to switch to another type of radiation. In the meantime, I am enjoying my time off from FOLFOX!
Wishing everyone a good holiday season!
annieliz
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3, 2/28/20-1.7
8/16/19 - 11/23/19 FOLFOX - 8 rounds
10/9 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
25 days Xeloda and radiation 12/17/2019 - 1/22/20
Robotic LAR 4/14/20 - clear margins - 0/15 nodes
Temp ileostomy

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Jacques
Posts: 579
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Preparation for neo-adjuvant chemo/radiation (rectal cancer patients)

Postby Jacques » Sun Dec 15, 2019 11:49 pm

Ulendon -
Thank you for taking time to post your experience with the chemo/radiation orientation session. I think that your post will be very useful for those rectal cancer patients in the future who will be facing similar chemo/radiation sessions.

I notice that you now have 10 days until the start of chemo/radiation. You can use some of this time now to do all the shopping and preparation necessary to be ready for the various kinds of side effects expected for the upcoming 5-week chemo/radiation regimen. You can look at some of the links below to start making a list of the things you need to have at hand during the next few weeks.

I think the main issues will probably be: 1. Control of diarrhea, 2. Control of proctitis (sore bottom), 3. Control of hand-foot syndrome, 4. Control of mouth sores, 5. Female anatomy issues, 6. Management of fatique.


Ulendon
Posts: 52
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: What is radiation/chemo treatment actually like?

Postby Ulendon » Tue Dec 17, 2019 3:34 pm

Jaques you're awesome!

Shopping and reading done. In addition to lotions, soap, mouthwash, and disposal panties. I also bought a bidet seat attachment and several seat cushions for car, home, and work.

Today I have to go to "chemo class“ at 3:00
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

Ulendon
Posts: 52
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: What is radiation/chemo treatment actually like?

Postby Ulendon » Thu Dec 26, 2019 1:35 pm

This morning I had my first radiation treatment and started the Xeloda pills. Last night I took a long hot bath since it's the last one I will be have for a while and afterwards I set up all my self care stuff. I used a moisturizer all over my pelvic area. I used a heavy duty Eucerine product on my hands and feet. I packed my lunch bag for work and included a 32 oz water bottle with some lemon and 1/2 teaspoon of L-glutamine powder to sip over the day. I packed a bag of work snacks/drinks a few different types of stomach settling herbal teas, ginger snaps, crackers, soup and salad for lunch, water flavorings. I brought a extra soft toothbrush and toothpaste, cushion for my office chair, and a tube of Calendula lotion.

I'm not usually a breakfast eater but the Xeloda is supposed to be taken with food and I've read here that more snacks means less nausea so I mixed extra almond milk into my coffee and added a powdered meal replacement shake to it. On the 30 minute drive to the cancer center I ate a banana and took my (4) 500 mg pills. I felt a weird reluctance to take them. It kind of felt like taking poison but I told my self it was poison for the cancer and did it.

When I got to the center I scanned my card at the front desk to check in and went back to the dressing room. I changed into a gown and stashed my pants and boots in my provided cubby. This time I left my underwear on. I bought some cotton short underwear and intent to wear it and just pull it down when I'm on the machine. It makes me feel a little less vulnerable. I waited a bit then they came and got me and led me to a different machine than the one I had been set up on. There were two techs. The spent a while getting me positioned and lined up and they taped my butt cheeks. This was less humiliating than I expected it to be. It was fast and not "exposing". Just a piece of tape on each side from thigh to butt. I was surprised at how very stressed I got during the treatment. This first session took longer than I had expected and the techs said it would be much faster in the future.

After I climbed down I headed back to the changing room, put my pants and boots back on and then went to the bathroom where I emptied my bladder of the mornings coffee and spread the Calendula lotion everywhere. Then headed out to my car and off to work. It wasn't until I got into the car that I relaxed a bit and realized how tense I had been! I'm assuming this will get better each time. The clinic is warm and comfortable and the staff is super nice.

Traffic was super light today and it only took me 40 minuted to get to work. I've made myself comfy and had a cup of tea. I've had a wave or two of mild nausea and felt really flushed but I'm thinking those are just psychosomatic and/or anxiety related.

So that's it for treatment 1/28
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

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Jacques
Posts: 579
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: What is radiation/chemo treatment actually like?

Postby Jacques » Thu Dec 26, 2019 2:23 pm

Thanks for getting back to us with a report of your first chemo/radiation session. It looks like you have prepared yourself quite well for the treatment. Just remember that if you start having severe diarrhea then this means loss of fluids and loss of electrolytes and that the loss will have to be replenished. Be sure to keep yourself well-hydrated.
Last edited by Jacques on Sun Dec 29, 2019 1:13 am, edited 1 time in total.

Ulendon
Posts: 52
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: What is radiation/chemo treatment actually like?

Postby Ulendon » Sat Dec 28, 2019 9:35 pm

Fatigue is REAL. Thursday I made it through the day at work but Friday I went home early and took a 3 hour nap. Then I went to bed at around 10:30 and slept till 2 pm today. Poops are fine no diarrhea so far but we will see how next week goes.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

Ulendon
Posts: 52
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: What is radiation/chemo treatment actually like?

Postby Ulendon » Tue Jan 07, 2020 6:01 pm

Today was treatment #8. So far I’m tolerating everything pretty well. If I keep food in my stomach I don’t get nauseated but that isn’t always easy so there have been some nasty waves but they pass. My skin is holding up so far and I think the lotions really are helping with that. After the first couple of treatments the fatigue got better but now seems to be amping up again. I think it’s cyclical which is way better than constant but still no fun.

It’s been hard making it through my now 2 hour longer days with the driving and treatment and then working late to keep up. I had a flyball tournament with my dogs this last weekend and I’m pretty pooped from that even though my team let me have all the easy jobs. Last Friday I went to treatment then drove 5 hours, helped finish the tournament set up, and then was up at 5am Saturday and Sunday for the tournament which ran until about 6pm. Sunday I drove home after and was up again Monday morning for another treatment. I feel lucky that the tournament is early enough in my treatment that I was able to compete but this week is hard and it’s only Tuesday!

I have been having some low back and hip pain but not terrible.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: What is radiation/chemo treatment actually like?

Postby NHMike » Wed Jan 08, 2020 11:12 am

Radiation: they have a pre-appointment where they do scans and marking for alignment with the machine.

The regular appointments for me were early morning. I drank 20-24 ounces of water 30 minutes before the appointment. I'd wait in a room and get called in. I just wore regular clothes without any metal. I got up on the very narrow table, lay on my stomach, pushed my pants down and they covered part with a towel. Then I held very still for several minutes while the arms came around and shot out the radiation. After that I got up, pulled off pants, jumped off the table and ran to the bathroom.

The radiation pain started after two weeks of radiation and it lasted until about one week after treatment ended. I wore pads for a while as there could be fecal material or blood on underwear. I didn't use any creams for the burning but lots of people do.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Ulendon
Posts: 52
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: What is radiation/chemo treatment actually like?

Postby Ulendon » Wed Jan 15, 2020 5:12 pm

Half way through. Still have normal poops and no skin issues. Though I'm slathering myself in lotions before and after treatment. As each week nears it's end I'm more and more tired but otherwise nothing major.

I got my period last Friday. I was looking forward to not dealing with those anymore so darn! My period has been extra long and very heavy. I'm just starting to be a bit concerned and if things don't slow down tomorrow will contact my doctor. Today is day 6 and it usually only lasts 3-4 days.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

AmyG
Posts: 334
Joined: Tue Dec 25, 2018 8:08 pm

Re: What is radiation/chemo treatment actually like?

Postby AmyG » Wed Jan 15, 2020 10:11 pm

Hey! I missed your post about the flyball tournament. Did you compete with your dogs? What breed do you have?

It's good to read that you're tolerating things so well, all things considered.

You're a rock star, keep it up!!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...

Ulendon
Posts: 52
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: What is radiation/chemo treatment actually like?

Postby Ulendon » Fri Jan 17, 2020 2:33 pm

AmyG,

I have a Malinois and a Dutch shepherd. I only ran one dog this tournament. Bruno, my dutchie ran full time on a team for the first time. He was awesome! The rest of the time I was mostly sitting in a chair box judging. I helped with set up and breakdown too as it was my teams sponsored tournament. We run 4-5 teams at most tournaments so it's usually extremely exhausting but my team was so good to me.

I've already missed way more work than I'd like. The long days with 1-1/2 to 2 extra hours of driving are really tiring but overall I'm feeling pretty lucky so far.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

AmyG
Posts: 334
Joined: Tue Dec 25, 2018 8:08 pm

Re: What is radiation/chemo treatment actually like?

Postby AmyG » Fri Jan 17, 2020 2:48 pm

That's just so neat! We have 5 dogs, 3 GSD and two lord knows what mixes. Combined, it's 400lbs of dog!! I think two of our shepherds would really excel at something like flyball but we live in the middle of nowhere. :roll:

Keep on trucking, you'll be finished before you know it.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...

Ulendon
Posts: 52
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: What is radiation/chemo treatment actually like?

Postby Ulendon » Tue Jan 21, 2020 5:28 pm

Day 17. Still fine bowel movements. Some burny/discomfort in the lady bits and some burny sensation when passing stool emanating, I assume, from near the tumor site. Totally bearable but I'm hoping it doesn't increase rapidly!
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

Ulendon
Posts: 52
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: What is radiation/chemo treatment actually like?

Postby Ulendon » Thu Jan 23, 2020 5:58 pm

Yep, lady bits are feeling pretty crispy. I've had a mild stomach ache and cramps for the last couple of days.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28


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