Newly diagnosed rectal cancer

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MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Sun Sep 29, 2019 4:18 pm

Do oral pain medications do anything to help with burning bowel movements? None of the topicals I've tried so far seem to help much.

Has anyone used Dermoplast spray in the area?

I bought a sitz bath but I can't sit more than 5 minutes. It feels like too much pressure or something. The sitz bath does help, I just have to figure out how to stay on it for longer than a couple of minutes. Any tips to using one that would be more comfortable? It seems like sitting that way is poking things out where I want them to stay in if that makes sense.

My mouth sores haven't gotten any worse. I'm using magic mouthwash a few times a day and swishing with the baking soda and salt water mixture every time I go to the bathroom. Seems to be working!

My hands and feet are doing well, too. I have some soreness with a little red here and there but the burning sensation seems have have gone. I keep them moisturized as often as I can. I notice sore places the next morning and try to think what I was doing, usually it's the way I was holding something so I try to do things with a lighter touch.
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: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Mon Sep 30, 2019 4:14 pm

My doctor is calling in a prescription but I forgot the name. Procto-something. He said it will help with inflammation and to use that I think three times a day and the other creams when I wasn't using that one.

I asked if over the counter pain pills like acetaminophen would help and he said it can so maybe I will try that. I don't know if it would cause constipation though. Maybe it would even out the diarrhea.

I lost two more pounds. I was doing well and almost hitting my calorie goal every day until this weekend when I didn't eat enough. I'm behind today so trying to get more in before bed.
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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dianetavegia
Posts: 2718
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

Re: Newly diagnosed rectal cancer

Postby dianetavegia » Tue Oct 01, 2019 3:18 pm

Low thyroid can cause false elevated CEA so might want to work on that, too.

Best of luck,
Diane
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. PET = 1.5cm liver met. HR 4/11/12 No chemo

Over 10 years since dx and 7 years post liver resection.
NED since 2012

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

Rikimaroo
Posts: 257
Joined: Tue Dec 20, 2016 8:48 pm

Re: Newly diagnosed rectal cancer

Postby Rikimaroo » Wed Oct 02, 2019 9:36 am

MeAndMine wrote:My doctor is calling in a prescription but I forgot the name. Procto-something. He said it will help with inflammation and to use that I think three times a day and the other creams when I wasn't using that one.

I asked if over the counter pain pills like acetaminophen would help and he said it can so maybe I will try that. I don't know if it would cause constipation though. Maybe it would even out the diarrhea.

I lost two more pounds. I was doing well and almost hitting my calorie goal every day until this weekend when I didn't eat enough. I'm behind today so trying to get more in before bed.



Probably ProctoFoam. I got it and never used it because honestly the contraption was so complicated LOL...and yes I suffered through radiation and the burns were unbearable during the bathroom and lingered for a while after that. Once Radiation Treatment was over after 28 days the pain subsided after about 3 weeks exactly from going to the bathroom. Unfortunately all the ointments, calmoseptine, aquafor, witch hazel, anything under the sun that you can think of will not make a huge difference. It's going to hurt no matter what when you have a bowel movement and the lingering pain afterwards, calmoseptine might help with or aquafor, but unfortunately not really well. Taking Hydrocodone was my relief if it was super painful, I didn't take it much because honestly I was scared of getting addicted, but I took it when it was absolutely horrible lingering pain.

You are just going to have to truck through it my friend, you can do it. I am sorry your going through it, it was rough and I will never forget it. Stay strong, press on and once its over, get your LAR and hopefully that's it. Ileostomy and reversal of ileostomy is a whole other adventure.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Wed Oct 02, 2019 11:31 am

Low thyroid can cause false elevated CEA so might want to work on that, too.

Thank you Diane, I didn't know that! It's so great to get tips and advice from everyone here. There is such a wealth of knowledge in all of you.

Probably ProctoFoam. I got it and never used it because honestly the contraption was so complicated LOL...and yes I suffered through radiation and the burns were unbearable during the bathroom and lingered for a while after that. Once Radiation Treatment was over after 28 days the pain subsided after about 3 weeks exactly from going to the bathroom. Unfortunately all the ointments, calmoseptine, aquafor, witch hazel, anything under the sun that you can think of will not make a huge difference. It's going to hurt no matter what when you have a bowel movement and the lingering pain afterwards, calmoseptine might help with or aquafor, but unfortunately not really well. Taking Hydrocodone was my relief if it was super painful, I didn't take it much because honestly I was scared of getting addicted, but I took it when it was absolutely horrible lingering pain.

Thank you for telling me about the ProcotoFoam. For some reason the pharmacy could never get the prescription. The doctor would send it digitally but it never came through on the other end so they had to call it in and it wasn't until this morning that it was finally available. But then it was too expensive. It may be different from ProctoFoam as it was called ProctoMed but similar at least. I've paid for two other compound medicines that were high but this was $100 and just hydrocortizone 2.5%. The over the counter one is 1%. So far nothing I've bought has done much to help, like you said, it's something I have to get through and nothing is really working so I don't think I will get that prescription. There's so much insurance isn't covering and I'm still at the beginning of all of the treatments.

My radiation oncologist doesn't really like to give out meds. He told me I could use Tylenol if I want. I did take it and felt like I got some relief but then I felt like I should take more so I didn't take it at all. I don't want to get constipated on top of everything else. My surgeon is wonderful though and always says there is no reason to hurt. He prescribed a compound ointment, lidocaine and asked if I needed something for pain. I didn't get the lidocaine prescription because it was $250. The pharmacist said it wasn't covered under my insurance but it was 5% and the over the counter one was 4% and under $10. I can always go back and get the prescriptions later.

Thank you for your encouragement. I needed to hear that!
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: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Mon Oct 07, 2019 11:46 am

Things have been pretty rough here but I think it's normal for the treatment. I'm just trying to get through each day so I can mark it off and go on to the next. I always want to ask a million questions but really, it is what it is and I have to get through it.

Today one of the men we see often at radiation completed his last treatment. He was so happy and got to ring the bell and we all were clapping and cheering him on. I know some people don't care for the bell but I think it's a great thing to celebrate completing radiation treatments! He was always cracking jokes and someone you love to be around. When he got ready to go, he told the people in the office how wonderful they were and how much they truly helped him through this. He said he'd never been through anything like this before and the way they treated him and helped him meant so much. He had all of us in happy tears. We will miss his happy attitude and stories throughout the rest of our journey.
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: 37
Joined: Fri Jul 26, 2019 5:13 pm

Re: Newly diagnosed rectal cancer

Postby annieliz » Mon Oct 07, 2019 12:50 pm

So sorry to hear that you are having a rough time — I am looking forward to the day you post that it was your turn to ring the bell!
Wishing you all the best as you keep marking off the days until the end of your treatments!
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Mon Oct 07, 2019 1:39 pm

So sorry to hear that you are having a rough time — I am looking forward to the day you post that it was your turn to ring the bell!
Wishing you all the best as you keep marking off the days until the end of your treatments!

Thank you Annie! You lifted my spirits and I appreciate 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

MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Mon Oct 14, 2019 2:32 pm

This chemo radiation combo has got to be the hardest thing I’ve ever gone through.

Any ladies who’ve been through this have any suggestions for me for the burning in the inner labia? I’ve tried the suggestions from different doctors and nurses but nothing has helped. They’ve said try aquaphor or vaginal moisturizers or even coconut oil. I can’t be the first one who’s ever had this problem but no one really knows what to do for it. Even plain water burns. Just wondering if anyone has a tip that worked for them even if it’s unconventional.

I’ve tried everything in my arsenal for the pain in the rear, too. Aquaphor, sitz baths, Regenecare with lidocaine, straight lidocaine, hydrocortisone, Radiaplex gel.

I’m eating low residue. I miss salad and vegetables but rather not eat anything right now. I need to eat 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

annieliz
Posts: 37
Joined: Fri Jul 26, 2019 5:13 pm

Re: Newly diagnosed rectal cancer

Postby annieliz » Mon Oct 14, 2019 8:24 pm

Ugh! I am so sorry that I don’t have any tips for you as I have yet to go through the treatment you are enduring. I have to wait until Christmas for that :( Sounds like you have tried everything in the book. I hope you at least get a few hours of relief every day. 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.
Annie
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed rectal cancer

Postby NHMike » Mon Oct 14, 2019 8:32 pm

Radiation is very tough and I've heard that it's rougher on women. I recall the pain and not really being able to do anything about it. 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.
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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dani.biri
Posts: 3
Joined: Wed Oct 09, 2019 8:48 am
Facebook Username: Dani Martin

Re: Newly diagnosed rectal cancer

Postby dani.biri » Tue Oct 15, 2019 7:47 am

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.
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

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susie0915
Posts: 937
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Newly diagnosed rectal cancer

Postby susie0915 » Tue Oct 15, 2019 8:33 am

MeAndMine wrote:This chemo radiation combo has got to be the hardest thing I’ve ever gone through.

Any ladies who’ve been through this have any suggestions for me for the burning in the inner labia? I’ve tried the suggestions from different doctors and nurses but nothing has helped. They’ve said try aquaphor or vaginal moisturizers or even coconut oil. I can’t be the first one who’s ever had this problem but no one really knows what to do for it. Even plain water burns. Just wondering if anyone has a tip that worked for them even if it’s unconventional.

I’ve tried everything in my arsenal for the pain in the rear, too. Aquaphor, sitz baths, Regenecare with lidocaine, straight lidocaine, hydrocortisone, Radiaplex gel.

I’m eating low residue. I miss salad and vegetables but rather not eat anything right now. I need to eat more.


My radiation oncologist gave me some lidocaine. I remember it felt like broken glass every time I urinated. I would take a dab of lidocaine and put in up in my vaginal area and it would numb the area so I could urinate. That was very helpful. My radiation oncologist had tubes of lidocaine in their office. There is also a product over the counter called recticare that has lidocaine in it. I would use this as well and it would numb everything for me.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy

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dani.biri
Posts: 3
Joined: Wed Oct 09, 2019 8:48 am
Facebook Username: Dani Martin

Re: Newly diagnosed rectal cancer

Postby dani.biri » Tue Oct 15, 2019 9:42 am

I found this in another thread it might be of some help to you.

Re: Surviving radiation for rectal cancer
Postby weisssoccermom » Fri Jul 13, 2018 3:50 pm

When I was undergoing radiation, my rad onc had Rx'd me some Premarin cream....for the dry vaginal issues. I thought....well, heck, why not use it on the 'back end'. Man does that stuff make the difference! I spoke with my colorectal surgeon who admitted she never thought about it but when we discussed it....she said it made a lot of sense. During radiation, the treatments thin and dry out the skin and the skin in the rectal issue is already thin and sensitive so adding radiation to the issue doesn't help one bit. I should also add that I NEVER used anything but a glycerin based soap from the waist down during radiation.....it is SO much better than regular soap which may say it is soft, promotes all sorts of stuff, but, in reality is still very drying. Back to Premarin though. It is an estrogen based cream used by women primarily during menopause to help with the extreme dryness that most of us experience due to menopause and changing hormones. It does more than just 'lubricate' the vaginal tissue....it replenishes the hormones (in minute local amounts) that help the tissue have more elasticity and not be so dry. So, when I started using in the rectal area, I experienced the exact same response and my colorectal surgeon (and GYN agreed as well) that it made sense and the small amount of 'local' hormones wouldn't do anything. It made the world of difference. The tissue around the anus wasn't dry, didn't feel as though I was sitting on barbed wire when I had a BM and overall.....it was a welcome welcome relief!
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: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Newly diagnosed rectal cancer

Postby MeAndMine » Wed Oct 16, 2019 2:21 pm

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.
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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