Newly diagnosed rectal cancer

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MeAndMine
Posts: 133
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Wed Oct 16, 2019 2:29 pm

The only thing in terms of something to look forward to is that the pain should fade a lot a week after the end of treatment and completely two weeks after.

Thank you for saying that! It’s good to hear that there is an end in sight. Today was the first boost treatment and I am afraid that is super strong and will make things a lot worse. I’m trying not to think about it. Sometimes I think that it’s not as bad as I feel like it is.

Did diarrhea hang around after treatment was finished? I want to know if I’ll have any good days before surgery and if I can eat something besides low residue foods. I really want to eat something healthy and delicious. I’ve missed wheat bread and all of the veggies and salad.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

MeAndMine
Posts: 133
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Wed Oct 16, 2019 2:40 pm

'm new here. I have been reading your posts for a few weeks. I was diagnosed about 2 months after you. I wish I had some helpful advise for you. I've been reading everyone's posts to see what will be in the next few weeks to come. I have been on Oral Capcitabine for the past 12 days. I'll have 1 week off and the start Chemo/radiation. I have felt Great so far... But I know this to shall pass! Of course we are all here to do One thing...Beat it! I really do wish I had some advise for you to relieve your pain. Stay positive, I'll be following along and here to cheer you on.


You have been doing well and you can continue doing well! Everyone is different and some people hardly have any reaction. I think that you are feeling good now and you can keep feeling good. Everyone is different and you may not have anything major come up at all!

I think part of mine was the oral chemo was never given a break. There was only one other person on this board who said they were taking it like me, seven days a week with no breaks. By having a break in between your body will be better able to heal it self and have a little rest so maybe it will be way easier on you. Remember to use a good lotion on your hands and feet and use the salt water or baking soda and water mouth rinse every time you go to the bathroom to keep from getting mouth sores.

I am still full of a lot of questions with very little answers but if there’s anything you want to ask or anything I might be able to tell you, feel free let me know.

And thank you for the info from the other thread. Every little bit of information we can get to add to our arsenal is a good thing!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

MeAndMine
Posts: 133
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Wed Oct 16, 2019 2:49 pm

My radiation oncologist gave me some lidocaine. I remember it felt like broken glass every time I urinated.

Yes! It’s awful. My radiation doctor was out of the office so I saw a different doctor yesterday and he told me to use the lidocaine gel, too! My regular doctor really doesn’t want to offer anything so it’s a bonus to get to talk to someone else in the office. I tried that yesterday and it seemed to work but it didn’t last very long. He told me to use it 2-3 times a day. Thank you for the suggestion, I will try like you said and use it before each time. I burn all over so I don’t even want to go at all. Today I’ve been putting coconut oil over the area to try to keep things from sticking together. It’s such an unusual thing to experience.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2302
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Wed Oct 16, 2019 4:04 pm

MeAndMine wrote:
If I am counting correctly, you are approaching the end of treatment.
Keep crossing off the remaining days - you are almost there!
Hang in there - we are all rooting for you.

Yes, this is my last week! Yesterday I had a really down day. I think because the doctor I saw yesterday was telling me how bad it was going to be next week. He wasn’t trying to be rude about it but was explaining what I needed to get through. It seemed to make everything hurt worse. This morning I decided that I could not have another day like yesterday so I chose to ignore the pain for the most part. It’s hard to do but I just keep thinking I can do this and keep going.

I will be so glad not to have to take these pills on a specific schedule. The radiation is not fun but the pills are making their own issues.


It's that last push to get through to the end.

Yes, the cumulative effects of the radiation are strong but next week you won't have the base levels. Things get rapidly better the second week after you're done.
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

NHMike
Posts: 2302
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Wed Oct 16, 2019 4:05 pm

MeAndMine wrote:
The only thing in terms of something to look forward to is that the pain should fade a lot a week after the end of treatment and completely two weeks after.

Thank you for saying that! It’s good to hear that there is an end in sight. Today was the first boost treatment and I am afraid that is super strong and will make things a lot worse. I’m trying not to think about it. Sometimes I think that it’s not as bad as I feel like it is.

Did diarrhea hang around after treatment was finished? I want to know if I’ll have any good days before surgery and if I can eat something besides low residue foods. I really want to eat something healthy and delicious. I’ve missed wheat bread and all of the veggies and salad.


I do not recall any problems after two weeks past the end of treatment. I actually felt really good between then and surgery.
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
dani.biri
Posts: 3
Joined: Wed Oct 09, 2019 8:48 am
Facebook Username: Dani Martin

Re: Newly diagnosed rectal cancer

Postby dani.biri » Thu Oct 17, 2019 4:01 pm

MeAndMine wrote:
My radiation oncologist gave me some lidocaine. I remember it felt like broken glass every time I urinated.

Yes! It’s awful. My radiation doctor was out of the office so I saw a different doctor yesterday and he told me to use the lidocaine gel, too! My regular doctor really doesn’t want to offer anything so it’s a bonus to get to talk to someone else in the office. I tried that yesterday and it seemed to work but it didn’t last very long. He told me to use it 2-3 times a day. Thank you for the suggestion, I will try like you said and use it before each time. I burn all over so I don’t even want to go at all. Today I’ve been putting coconut oil over the area to try to keep things from sticking together. It’s such an unusual thing to experience.


Thank You for the helpful advice. You're almost through you radiation/chemo. I hope you are getting some relief from the side effects today. I will be here to cheer you on through the next phase of your treatment.
F 54 non-smoker
9/26/2019 - Colonoscopy - 4 cm rectal mass,10 cm from anal verge, and 2- 3mm polyps
9/26/2019 - CT - saw something on my liver
9/30/2019 - MRI -4.2 cm Hemangioma-Liver -Not metastasized to Liver
10/01/2019 - T3 N1 - Stage IIIB, Rectum: Adenocarcinoma
10/02/2019 First visit with oncologist
10/03/2019 radiation eval/planning
10/03/2019 oral Capecitabine Xeloda, 14 days
10/08/2019 First visit with surgeon
10/28/2019 begin Radiation

MeAndMine
Posts: 133
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Fri Oct 18, 2019 12:41 pm

I completed my last radiation this morning. I will take the last of my chemo pills this evening. I’m so glad this treatment is complete. I’m ready to start healing so I can get on to the next phase.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

annieliz
Posts: 38
Joined: Fri Jul 26, 2019 5:13 pm

Re: Newly diagnosed rectal cancer

Postby annieliz » Fri Oct 18, 2019 12:54 pm

Yay! So happy for you. I hope your nasty side-effect symptoms subside quickly.
Enjoy the weekend!
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 - 11/23/19 FOLFOX
11/6 flex sig ~30% shrinkage
Neulasta 9/29/19 & 10/27/19

MeAndMine
Posts: 133
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Fri Oct 18, 2019 2:49 pm

Yay! So happy for you. I hope your nasty side-effect symptoms subside quickly.
Enjoy the weekend!

Thank you Annie! Hope your weekend is wonderful as well.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

MeAndMine
Posts: 133
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sat Oct 26, 2019 11:42 am

It’s been an awful week. I thought I’d feel better quickly but I’ve barely left my bed other than to run to the bathroom and hope I’d make it on time.

My surgeon has been the best out of all of my doctors to try different things to help. At the last minute the other day, he said we should try the compound ointment nifedipine with lidocaine. You use a small amount every 12 hours. I think that is helping bowel movements be less painful. It still burns and I’ve pretty much given up food but I think it helps.

I can at least go less with less food but I have to stay hydrated and urine is like lava. So very painful. We’ve tried Cavilon spray barrier that works well on outer skin but doesn’t really work well on the inner areas that need it. For me aquaphor doesn't stay either. Nothing helps much there.

I stopped using lidocaine before going to the bathroom since it seemed to burn as much as the urine itself for me.

Everyone you talk to, doctors and patients, say you just have to get through it. There are lots of things to try, some work better than others for different people. I’m thankful for all of the suggestions and have tried them all. It’s so good to have something to try when you’re at the end of your rope.

I’m really weak now from not eating or getting out of bed. I don’t think that was the right thing to do but I’ve been unable to even think through the pain. I will have to work up my stamina. Today I went downstairs but after a few minutes I came up to bed and fell asleep. I need to do more.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2302
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Sat Oct 26, 2019 11:49 am

MeAndMine wrote:It’s been an awful week. I thought I’d feel better quickly but I’ve barely left my bed other than to run to the bathroom and hope I’d make it on time.

My surgeon has been the best out of all of my doctors to try different things to help. At the last minute the other day, he said we should try the compound ointment nifedipine with lidocaine. You use a small amount every 12 hours. I think that is helping bowel movements be less painful. It still burns and I’ve pretty much given up food but I think it helps.

I can at least go less with less food but I have to stay hydrated and urine is like lava. So very painful. We’ve tried Cavilon spray barrier that works well on outer skin but doesn’t really work well on the inner areas that need it. For me aquaphor doesn't stay either. Nothing helps much there.

I stopped using lidocaine before going to the bathroom since it seemed to burn as much as the urine itself for me.

Everyone you talk to, doctors and patients, say you just have to get through it. There are lots of things to try, some work better than others for different people. I’m thankful for all of the suggestions and have tried them all. It’s so good to have something to try when you’re at the end of your rope.

I’m really weak now from not eating or getting out of bed. I don’t think that was the right thing to do but I’ve been unable to even think through the pain. I will have to work up my stamina. Today I went downstairs but after a few minutes I came up to bed and fell asleep. I need to do more.


You've definitely had more damage than I had. I had no problems peeing. I'm glad that you have access to Cavilon Spray - I didn't know about it at the time. In most cases, you just have to get through it as it does get better rapidly. The doctors, nurses, etc. haven't been through it and they are repeating what they've been taught. But, outside of some kind of damage, they reflect the experiences of most that I've read here.
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

suereal
Posts: 7
Joined: Fri Oct 25, 2019 4:38 pm

Re: Newly diagnosed rectal cancer

Postby suereal » Sat Oct 26, 2019 3:08 pm

Hi ! Been reading the board for awhile...
You are not alone ! I also finished chemo/rad last Friday after 5 boosts.
Calmoseptine, Imodium, and Metamucil are helping a bit. Have to try a new aloe Vera gel that was just delivered, but was not prepared for how debilitating this after treatment week would be. I read about Burning and shards of broken glass, which so accurately describes it.
Here’s hoping this next week brings us some relief.
Best to you,
Sue

Now to figure out how to add a signature.
F 59 at DX
Colonoscopy 4/10/19
Adenocarcinoma
4.8 cm length
3.7 cm from anal verge
T3 NO MO
Folfox 6 rounds 5/14/19 - 8/6/19
CEA at DX - 4
CEA After Folfox - 2
9/19/19 chemo/rad 6 wks

MeAndMine
Posts: 133
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sun Oct 27, 2019 5:51 pm

I'm glad that you have access to Cavilon Spray - I didn't know about it at the time.


The Cavilon spray was luck. My daughter went to the compound pharmacy and was discussing things with the pharmacist as she waited. She saw it on the shelf and picked it up and asked about it. She didn’t know if it would help but she picked up any and everything she saw that had potential. She also bought me a female urinal but I can’t imagine anything touching the area so I haven’t attempted that. She was thinking maybe it’d direct the stream away from open skin. It might, but I haven’t tried.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

MeAndMine
Posts: 133
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sun Oct 27, 2019 6:07 pm

suereal wrote:Hi ! Been reading the board for awhile...
You are not alone ! I also finished chemo/rad last Friday after 5 boosts.
Calmoseptine, Imodium, and Metamucil are helping a bit. Have to try a new aloe Vera gel that was just delivered, but was not prepared for how debilitating this after treatment week would be. I read about Burning and shards of broken glass, which so accurately describes it.
Here’s hoping this next week brings us some relief.
Best to you,
Sue

Now to figure out how to add a signature.


Congratulations on completing your chemorad treatment Sue! How are you feeling today? I hope it’s getting better. I read the week after was bad but I thought since I wasn’t in active treatment, it had to get better. I had no idea it could get worse. I’ve read that someone began feeling better after day 3. Most say around two weeks but a lot notice improvement on day 10. Everyone is different but I do feel better today than yesterday so I’ll take it!

I’ve pretty much slowed down on products today. I did the tiny drop of nifedipine this morning and some aquaphor in the same area a couple of times. Nothing on the front except a little cornstarch in the crease of my leg because it was burning and can’t seem to stay dry.

I wondered if applying ointment in the vaginal area was keeping it from healing but I had to apply things last week as the skin folds were sticking together. One thing that gave instant relief from that was applying fractionated coconut oil. I could pump it directly on the area and it’s stop it from sticking but seemed to not last very long.

I’m still not eating but I don’t know of any other way to get some relief from going to the bathroom. Yesterday I tried to eat big. I managed around 600 calories which is more than the days before combined. Then I kept having to go to the bathroom and thinking “Why did I eat?!” Today I couldn’t bring myself to take a bite. I’m hungry but right now it’s just not worth it. I’ll try again tomorrow.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

MeAndMine
Posts: 133
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sun Oct 27, 2019 6:24 pm

dani.biri wrote:I'm new here. I have been reading your posts for a few weeks. I was diagnosed about 2 months after you. I wish I had some helpful advise for you. I've been reading everyone's posts to see what will be in the next few weeks to come. I have been on Oral Capcitabine for the past 12 days. I'll have 1 week off and the start Chemo/radiation. I have felt Great so far... But I know this to shall pass! Of course we are all here to do One thing...Beat it! I really do wish I had some advise for you to relieve your pain. Stay positive, I'll be following along and here to cheer you on.


Thinking of you Dani and wishing you good luck as you begin radiation tomorrow! Remember to drink lots of water and lotion your skin well after treatment each day. I was told to get treatments with a full bladder to protect your bladder and I think they said it also lifts other areas up out of the way. Not sure if you were told to do that but just passing it on.

Also wash off any ointment or lotions before treatment. And don’t wash with soap as it burns. My doctor said to use Dove but others recommended pure glycerin soap like Pears. One of the doctors said not to use anything 4 hours before treatment. Another said 6 and another said only use it the night before. I stuck with 4-6 hours and bathed before treatment.

I carried a ziplock bag with different gels or ointments and went into the bathroom after treatment to apply. I made sure to use it everywhere but the inner folds in front because I always thought you’re not supposed to use anything there. That’s where I ended up with the worst burns in the end. It is probably because of where my tumor is located, so low down. But maybe you could ask if there is anything they suggest you could use.

My radiologist wasn’t big on preventing anything. He only wanted to talk if something happened. My oncologist didn’t suggest much but did look up things if I asked if I could use it. My surgeon has been the best about finding things to help. All that is to say, ask everyone you come in contact with if they have any suggestions if you need help. There are lots of opinions and lots of ideas and something will do the trick!

Good luck tomorrow. It really does go by faster than you think. You’ll do great and be on the other end before you know it!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine


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