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by susie0915
Thu Nov 29, 2018 2:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1350
Views: 242769

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Glad you are doing well Mike. Maybe you have turned a corner.
by susie0915
Wed Nov 28, 2018 6:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Using a vaginal dilator after radiation
Replies: 8
Views: 683

Re: Using a vaginal dilator after radiation

I can bleed sometimes if toilet paper is rough. I went to my gynecologist and he gave me some Premarin cream to use externally to plump the tissue. It has seemed to help. He said it is definitely from radiation.
by susie0915
Tue Nov 27, 2018 3:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surviving radiation for rectal cancer
Replies: 141
Views: 30684

Re: Surviving radiation for rectal cancer

HI Susie. Thanks for your positivity and your experience. I am not sure if it worked (scan in mid Jan will tell!) or whether I'll have a biopsy (that's a questions I have for my team!) but I do hope it worked (so I have an option to consider). Funny that I went from not even considering W&W to ...
by susie0915
Tue Nov 27, 2018 3:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Robotic surgery and LAR syndrome
Replies: 10
Views: 359

Re: Robotic surgery and LAR syndrome

Hmmm. The last time I spoke with my surgeon (and another surgeon elsewhere), they both told me that taking only PART of the rectum "causes more trouble than it's worth" (at least this is how I understood what they said) and they planned to take my entire rectum (and uterus, given where th...
by susie0915
Tue Nov 27, 2018 10:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Robotic surgery and LAR syndrome
Replies: 10
Views: 359

Re: Robotic surgery and LAR syndrome

Thank you so much for this info. I think my surgeon wants to do my surgery robotically. You most likely will do pretty well since your tumor was 10-11 cm from anal verge. My tumor was 4-5 cm from anal verge so most of my rectum was removed. I am doing pretty well and have found by doing daily tap w...
by susie0915
Tue Nov 27, 2018 9:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surviving radiation for rectal cancer
Replies: 141
Views: 30684

Re: Surviving radiation for rectal cancer

This is good news. I too had a great response to chemo/radiation. Pet scan showed no sign of disease, and surgeon did a sigmoidoscopy and said all that was left was scar tissue. I was never offered a non-surgical decision, just depending on pathology after surgery I may not need to do chemo. The pat...
by susie0915
Mon Nov 19, 2018 4:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA as a marker during chemo?
Replies: 11
Views: 568

Re: CEA as a marker during chemo?

My oncologist told me that CEA can actually go up during chemo. Mine did go up a little but was within normal range. I dont know if it is a marker for me.
by susie0915
Sat Nov 17, 2018 9:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: RESTRICTIONS ON IMMODIUM SALE
Replies: 6
Views: 311

Re: RESTRICTIONS ON IMMODIUM SALE

Isn't this crazy? I read some will take up to 300 Imodium to get high. There are stores that already have Imodium behind the counter. I know Costco does. I use lomotil, and in the last year my doctor cannot call in the prescription anymore. I have to go to his office and pick up the script and take ...
by susie0915
Thu Nov 15, 2018 9:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Extrusions vs Nuggets
Replies: 14
Views: 419

Re: Extrusions vs Nuggets

I understand this so well. You think you have turned a corner and nope, not to be. I tried different things for a year and a half. Not having a rectum to store stool until it is filled and ready to evacuate I think is the issue. Yes, diet can make things difficult but I think the lack of a storage f...
by susie0915
Wed Nov 14, 2018 1:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1350
Views: 242769

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Good to see that bloodwork draws at other hospitals. My local hospital is hit or miss. Sometimes they are good and sometimes they are awful. It was like that in the hospital too. The phlebotomist was as good as it gets but I only had him once. Most of the other draws weren't as good as the people d...
by susie0915
Wed Nov 14, 2018 9:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1350
Views: 242769

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

That's how the blood draw area is at Henry Ford Hospital in Detroit area. They are really good at it. My bloodwork came back fine CEA 0.6, so all good there. I'm okay with not getting a scan until the spring, just a little anxious as there was a tiny nodule on my lung that was being monitored for th...
by susie0915
Tue Nov 13, 2018 3:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1350
Views: 242769

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

I just saw my oncologist for my 6 month check. She told me she will order a ct scan for April, one year after the last. She had been doing them every 6 months but said she thinks yearly is fine. I know there is a balance of radiation exposure and how often to monitor. I guess less to worry about for...
by susie0915
Sun Nov 11, 2018 2:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Surviving radiation for rectal cancer
Replies: 141
Views: 30684

Re: Surviving radiation for rectal cancer

Hi Annie! W&W approach is changing. Used to be only chemo/rad, risk was high, one doesn’t know if any microcell is left in the body, or not. That extra chemo is to wipe out those questionable microcells. California was most advaneced, they have been doing this kind of approach for more than 10 ...
by susie0915
Fri Nov 09, 2018 7:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: To share my “ghost” story
Replies: 9
Views: 670

Re: To share my “ghost” story

Those six months scans and check ups are bitter sweet. You want to go and confirm everything is fine and you are still NED, but at the same time you are anxious because it's time to go and get checked to see if you are still NED. I go next week to see oncologist. I am 3 years from resection when I w...
by susie0915
Thu Nov 08, 2018 8:40 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Did Daily Enema Users consult Doctors?
Replies: 13
Views: 697

Re: Did Daily Enema Users consult Doctors?

The only thing I take anymore are a couple lomotil just to make sure I'm okay all day. I use for peace of mind, don't really think I need. Did your doc ever mention any long term effects of immodium? My surgeon said it can mess with the natural process of peristalsis and warned against using it. No...

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