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 » Sun Oct 27, 2019 6:32 pm

Now to figure out how to add a signature.


Sue, to add a signature, click or tap on the down arrow by your name at the top right of the page. Then tap “user control panel” Then tap on the tab that says “Profile” and then “Edit Signature”. I think that will get you there.

Hope that helps!
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 » Sun Oct 27, 2019 7:38 pm

MeAndMine wrote:
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.


I ran into Cavilon Spray because I was having problems with my ileostomy. I'm not sure whether or not you're going to get one but insurance covers your ileostomy supplies and that includes wipes to provide a barrier. You can get Cavilon wipes but they are a royal pain to use. Someone here mentioned Cavilon spray and I bought a three-pack of spray devices and they were far easier to use compared to the wipes. Insurance only covers the wipes, though, so I had to pay out of pocket for Cavilon Spray. I later also found out that the spray is helpful for diarrhea as it protects the skin from the caustic effects.

I hope that you're over the pain and suffering soon. It is really rough but it does end.
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 » Mon Oct 28, 2019 8:27 am

MeAndMine wrote:
Now to figure out how to add a signature.


Sue, to add a signature, click or tap on the down arrow by your name at the top right of the page. Then tap “user control panel” Then tap on the tab that says “Profile” and then “Edit Signature”. I think that will get you there.

Hope that helps!


Yes, thank you ! Seemed a bit overwhelming at the time. :roll:

Today is 10 days after and I feel there is some improvement.
The burning didn’t last as long this morning and the broken glass feel is less.
Like you said... I’ll take it !
I may even get out of the house for a bit, which would be fantastic ! :)

It sure is nice not to have to worry about timing of that Xeloda !
Hope you are feeling better !

Blessings to All !

Sue
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

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

Re: Newly diagnosed rectal cancer

Postby NHMike » Mon Oct 28, 2019 8:57 am

suereal wrote:
MeAndMine wrote:
Now to figure out how to add a signature.


Sue, to add a signature, click or tap on the down arrow by your name at the top right of the page. Then tap “user control panel” Then tap on the tab that says “Profile” and then “Edit Signature”. I think that will get you there.

Hope that helps!


Yes, thank you ! Seemed a bit overwhelming at the time. :roll:

Today is 10 days after and I feel there is some improvement.
The burning didn’t last as long this morning and the broken glass feel is less.
Like you said... I’ll take it !
I may even get out of the house for a bit, which would be fantastic ! :)

It sure is nice not to have to worry about timing of that Xeloda !
Hope you are feeling better !

Blessings to All !

Sue


I had early radiation appointments so making sure that everything was checked off was important and I was off by an hour or two or three some days. The Xeloda and radiation make you tired so it's easy to forget to take the Xeloda. Sometimes I took two pills and didn't remember how many I had taken.
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 » Mon Oct 28, 2019 10:42 am

Hi Mike,
Know what you mean.
One morning driving to radiation I couldn’t remember if I had taken my pills
From then on I started writing down day, time, and number of pills as I took them.
Xeloda did make me very tired.
My memory is still affected or maybe too much on our minds so we forget things.
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 » Mon Oct 28, 2019 4:39 pm

The Xeloda and radiation make you tired so it's easy to forget to take the Xeloda. Sometimes I took two pills and didn't remember how many I had taken.

I started taking a picture every time I took the pills. Sometimes I would all of a sudden wake up and gasp and think I didn’t take them. Finally I just got into the habit of every time I poured the pills into the bottle cap I would sit them on the desk and eat. Because one time I had eaten dinner and was waiting a few minutes to take them and forgot. So I would lay them out so that I would see them and take them after I ate and every time before I took them I took a quick picture on my phone. That way when I freaked out that I forgot or took the wrong amount, I could go back to my pictures and look and reassure myself that I did what I was supposed to.
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 » Mon Oct 28, 2019 4:47 pm

Today is 10 days after and I feel there is some improvement.
The burning didn’t last as long this morning and the broken glass feel is less.
Like you said... I’ll take it !
I may even get out of the house for a bit, which would be fantastic ! :)

It sure is nice not to have to worry about timing of that Xeloda !
Hope you are feeling better !

I’m so glad to hear you’re feeling better. I agree with you, I feel like today maybe we turned a corner. I still dread going to the bathroom and I did have a few tears early this morning, but I know it is better.

I keep thinking I will get out of the house or at least get out of the bed. I have been mostly in the bed since my last treatment. I just have a hard time sitting, but I believe by tomorrow I should be able to do that.

I do not miss taking those pills. At all!

Tomorrow I have an appointment with the oncologist for bloodwork to see how I am recuperating. And a few days later I have another appointment with the surgeon. He wants to check up on my skin since I was having such a hard time at his office last week.
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

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

Re: Newly diagnosed rectal cancer

Postby suereal » Tue Oct 29, 2019 7:51 am

Sitting can be a challenge , I usually curl my legs up and sit on the side of a hip.
Once I settle in, can manage for awhile. If my pup wants to be picked up,
I wince since the movement aggravates the area.
The car doesn’t seem as bad for some reason.

It was good to get out yesterday.
Maybe pushed it a bit too far as was hobbling around the library during my last stop.

Good luck with venturing out for Dr visits.
Seems like that surgeon is really trying to help you.
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 » Sat Nov 02, 2019 4:46 pm

Still trying to heal. I wanted it to be faster. I developed blisters on my thighs and groin area as the other areas started to heal. It’s like you think it’s getting better and something else pops up. Still having bathroom issues but it’s better.

Surgeon is in no hurry. He said I have a lot of healing to do. Feeling down and tired of everything at the moment. Diarrhea went away so now I’m afraid to go the other way and am back to my regular high fiber diet.

Oncologist was worried about my constant weight loss. Surgeon said try to stay where I am and don’t try to put any back on. I’m not eating as much as I should as I’m still worried that whatever goes in must come out.

I’ve done a little walking but the blisters are making it difficult to want to move my legs. I haven’t worn my Fitbit or watch in months.
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 Nov 02, 2019 4:56 pm

MeAndMine wrote:Still trying to heal. I wanted it to be faster. I developed blisters on my thighs and groin area as the other areas started to heal. It’s like you think it’s getting better and something else pops up. Still having bathroom issues but it’s better.

Surgeon is in no hurry. He said I have a lot of healing to do. Feeling down and tired of everything at the moment. Diarrhea went away so now I’m afraid to go the other way and am back to my regular high fiber diet.

Oncologist was worried about my constant weight loss. Surgeon said try to stay where I am and don’t try to put any back on. I’m not eating as much as I should as I’m still worried that whatever goes in must come out.

I’ve done a little walking but the blisters are making it difficult to want to move my legs. I haven’t worn my Fitbit or watch in months.


Hard candies are one way to get some calories without having to worry about output.
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 » Wed Nov 06, 2019 4:32 pm

MeAndMine wrote:Still trying to heal. I wanted it to be faster. I developed blisters on my thighs and groin area as the other areas started to heal. It’s like you think it’s getting better and something else pops up. Still having bathroom issues but it’s better.

Surgeon is in no hurry. He said I have a lot of healing to do. Feeling down and tired of everything at the moment. Diarrhea went away so now I’m afraid to go the other way and am back to my regular high fiber diet.

Oncologist was worried about my constant weight loss. Surgeon said try to stay where I am and don’t try to put any back on. I’m not eating as much as I should as I’m still worried that whatever goes in must come out.

I’ve done a little walking but the blisters are making it difficult to want to move my legs. I haven’t worn my Fitbit or watch in months.


Hi! Checking in to see how you are doing.
Sure hope those blisters are getting better.

Thank goodness the incredibly inflamed area I had is prob 80 percent better.
Have been able to sit regular for awhile now. Actually feel normal at times. :shock:
Bathroom issues a little better, but can’t seem to shake the diarrhea and morning urgency.
Went for a check yesterday. Blood work was good, I’m glad about that.

Regarding weight... the whole eating thing is frustrating.
It’s like you develop a bad relationship with food.
I’ve lost about 25 pounds since dx last April.
My appetite is somewhat back, but still so limited in my food choices.
The nurse yesterday said introduce new foods one at a time.
And the naturopath I see recommended Orgain Protein shakes.

Sue
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 » Thu Nov 07, 2019 3:25 pm

Regarding weight... the whole eating thing is frustrating.
It’s like you develop a bad relationship with food.

True. I still don’t want to eat. I get hungry and I want things but I would just rather not have to deal with any of it. Just when I think I’m starting to feel better, I feel like I go backwards.

I still can’t sit. I feel very swollen in front and burning in back. I feel like everyone thinks I should be over it by now. When I have a bad day, I hear, “I thought you were better. You did so well yesterday!” That’s because I didn’t eat so I could get relief from going to the bathroom.

I’m tired. And all I see is a long road ahead of more of the same. I know I’m better. I was able to clean and do laundry and lift things today I haven’t been able to do. I wish I could feel more optimistic. I have lost my happy thoughts and don’t do any of the things I used to do. I try to want to do things but I go back to bed. I have to work on it 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

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

Re: Newly diagnosed rectal cancer

Postby suereal » Thu Nov 07, 2019 8:59 pm

MeAndMine wrote:
Regarding weight... the whole eating thing is frustrating.
It’s like you develop a bad relationship with food.

True. I still don’t want to eat. I get hungry and I want things but I would just rather not have to deal with any of it. Just when I think I’m starting to feel better, I feel like I go backwards.

I still can’t sit. I feel very swollen in front and burning in back. I feel like everyone thinks I should be over it by now. When I have a bad day, I hear, “I thought you were better. You did so well yesterday!” That’s because I didn’t eat so I could get relief from going to the bathroom.

I’m tired. And all I see is a long road ahead of more of the same. I know I’m better. I was able to clean and do laundry and lift things today I haven’t been able to do. I wish I could feel more optimistic. I have lost my happy thoughts and don’t do any of the things I used to do. I try to want to do things but I go back to bed. I have to work on it more.



That’s how it started when I knew I was getting better... cleaning and laundry.
Even though it seems slow, you are gaining strength and stamina.

I have to take Imodium and fiber for bathroom issues. I try staying on BRAT diet mostly.
Sometimes I have no idea why one day is better than another.
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


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