Stage 3A Rectal Cancer Diagnosis

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sinewaves
Posts: 13
Joined: Tue Dec 18, 2018 9:44 am

Stage 3A Rectal Cancer Diagnosis

Postby sinewaves » Tue Dec 18, 2018 10:58 am

Hi colon talk - been reading these threads a lot over the last few weeks since I got my diagnosis. It really helps to hear from real people who have been where I am and worse.

I'm a 37 year old male. I had noticed blood in the stool, and after taking a FIT test from my primary care doctor, was recommended a colonoscopy. (This actually took forever to get him to agree too, which is a compliant for another time.)

Colonoscopy showed mass in rectum, so the past month has been consults with doctors, all kinds of imaging (CT, PET scans), and the general working through the process. They're staging it at 3A due to the slight inflammation of one of the lymph nodes.

I'm starting treatment with 6 weeks of radiation and neoadjuvant chemo, then a surgery anout 6 weeks after and follow up chemo for about 5 months. The medical oncologist has recommended Xeloda pills.

What have your experiences been with Xeloda? (I know that it is different for everyone.)

Any tips for dealing with the radiation side effects? The other threads I've seen say don't wipe after BMs, use a bidet water bottle to clean up, and look at numbing creams. Anything else you wish you knew going into treatment?

Thanks again - hopefully I can have an NED soon (and for the rest of my life.)
DX @ 37, married, no children
11/2018 - Dx "MALIGNANT NEOPLASM of DISTAL RECTUM", greater than 3cm at the dentate line Rectal Cancer (Stage 3a, T3N1M0)
1/7/ - 2/14/2019 - Radiation + Xeloda (4,000 mg per day - 4 pills in morning and evening) - 28 days
4/16/2019 - MRI shows no lymph nodes, reduced to stage 2
4/26/2019 - APR surgery, removed rectum. Permanent colostomy.

NHMike
Posts: 2086
Joined: Fri Jul 21, 2017 3:43 am

Re: Stage 3A Rectal Cancer Diagnosis

Postby NHMike » Tue Dec 18, 2018 10:42 pm

Welcome to the board and I'm happy to see that you've read a lot already and have some idea as to what to expect.

I had a similar course of treatment with 28 days of Xeloda and Radiation, surgery in 8 weeks, and 7 months of Adjuvant chemo.

I was able to work through the Xeloda and Radiation but I tried to stay away from people in general as these treatments do a number on your immune system and it's easier to catch things from other people. They suggest that you not shave or have any dental work done on treatment. The dosage of Xeloda is relatively low (it's higher for Adjuvant chemo).

I didn't start to feel the effects of the Xeloda and Radiation until about two weeks in. I wore pads (Men's Depends Shields) because of leaks. I did not use a Bidet but I use Peristaltsis bottles now - you can buy these on Amazon - you get three plastic bottles and put water in them and clean up by shooting water instead of wiping with toilet paper. You could also use baby wipes (I carry Kirkland baby wipes) as they are wet and also reduce friction.

You can get constipation and/or diarrhea with the treatments. Sometimes one after another. Miralax can help with constipation.

There are some ointments that can help with the skin damage - my radiation place gave me some samples but I didn't use any of them. There can be considerable pain from burns at any time. There can also be considerable pain going to the bathroom - the term is "pooping pieces of glass". It can last two to four weeks. In general, all of my issues went away two weeks after treatment ended.

The Xeloda will knock your red blood cell count down so you won't have as much energy. I think that it's a good idea to be somewhat active through treatment - my oncologist wanted his patients to walk at least five minutes twice a day. But many of his patients couldn't handle that. There are some folks that I've run into that spend a lot of the day sleeping because of the chemo.

They will likely give you a water bottle that holds 20 to 24 ounces of water and ask you to fill it up and drink it 30-60 minutes before radiation. This helps prevent damage to other organs during radiation. It is somewhat uncomfortable holding it in but water absorbs a lot of radiation and you don't want any damage to other organs.

That's just some stuff off the top of my head. I'm sure others will chime in.
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

User avatar
WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Stage 3A Rectal Cancer Diagnosis

Postby WriterGirl1969 » Wed Dec 19, 2018 7:31 pm

Hi Sinewaves. Sorry you have to be going through this, but glad you found this group.

Like you, I was diagnosed stage 3. Mine was colon vs. rectal, so I had surgery first with adjuvent chemo for 6 months vs. radiation, but I did do Xeloda oral. I did a *lot* of research on Xeloda pill form vs. IV (5FU) as my oncologist was resisting doing the oral for whatever reason. The most common side-effect with Xeloda, as you've probably read by now, is hand-foot syndrome. I started to feel this maybe 3 rounds in, noticing the bottom of my feet felt "blistery" to walk on - that feeling of having fluid under the skin and the stinging - but there were no actual blisters. However, my feet did discolor. From what I've read, the toxins in Xeloda tend to come out through the bottom of your feet quite a bit. Some things that can help are a really good cream to keep the skin of your feet moisturized, and drinking tons of water. Seriously. It seems almost silly that water can help so much, but it truly does. It helps flush the system and wash the toxins out. So drink lots during treatment.

I worked all through treatment, and did pretty well with the Xeloda. Other than the foot thing and some fatigue, I really responded well to it and didn't have many side-effects. I don't say this to mean you won't have any, just to show that everyone is different. The way your body responds will be unique to you. But there's hope you'll do well with it, and ways to cope with side effects. You're in the right place for that. So many good, good people with lots of information to share with you.

This Spring I'm 3 years NED. :)

Keep us posted. Don't lose hope.

Smiles, hugs and prayers,
Tracy (aka WriterGirl)
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

sinewaves
Posts: 13
Joined: Tue Dec 18, 2018 9:44 am

Re: Stage 3A Rectal Cancer Diagnosis

Postby sinewaves » Sun Jan 06, 2019 5:54 pm

Thanks for all the support and feedback!

I'm starting my Xeloda and radiation tomorrow. I'm prepared with a few things, based on the feedback from your guys and other threads:

    Imodium in case
    Wet wipes to reduce friction
    Radiation burn cream for the skin that will be in the beam's path
    Moisturizer for hands and feet in case of hand/foot side effects
    A case of Gatorade to make sure I have plenty of electrolytes
    A 36 oz water bottle that I'll refill a few times day

Ready to get treatment started and one step closer to the cancer being out of my body, and hopefully just a bad memory soon.
DX @ 37, married, no children
11/2018 - Dx "MALIGNANT NEOPLASM of DISTAL RECTUM", greater than 3cm at the dentate line Rectal Cancer (Stage 3a, T3N1M0)
1/7/ - 2/14/2019 - Radiation + Xeloda (4,000 mg per day - 4 pills in morning and evening) - 28 days
4/16/2019 - MRI shows no lymph nodes, reduced to stage 2
4/26/2019 - APR surgery, removed rectum. Permanent colostomy.

NHMike
Posts: 2086
Joined: Fri Jul 21, 2017 3:43 am

Re: Stage 3A Rectal Cancer Diagnosis

Postby NHMike » Sun Jan 06, 2019 7:02 pm

Best wishes on your start tomorrow.
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


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