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by Rikimaroo
Mon Jul 13, 2020 10:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need advice on colostomy
Replies: 3
Views: 385

Re: Need advice on colostomy

I didn't get the barbie butt and I have mucus discharge. I regret not doing it. Permanent Colostomy has given me my life back, LARS was horrible I dealt with it for 1 year and I couldn't do it anymore. I think doing the full APR is the right thing. I don't know why I decided not to do the barbie but...
by Rikimaroo
Mon Jul 13, 2020 9:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 3 year scan. Wish me luck!
Replies: 10
Views: 425

Re: 3 year scan. Wish me luck!

Hoping for clear scan!! Good Luck!!
by Rikimaroo
Fri Jul 03, 2020 11:06 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Getting regular with colostomy????
Replies: 2
Views: 291

Re: Getting regular with colostomy????

Hi Trying, Your lucky that your Colostomy worked like that. Mine does what you are describing where it will periodically go all day, and I just snap off bag clean it and snap it back on. Sometimes I do get the nice go once for the day, but that is very rare. It sound normal to me lol...Sorry I could...
by Rikimaroo
Thu Jul 02, 2020 9:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 487
Views: 176695

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Roadrunner, It is definitely the unknown and something we are not use to that puts us on edge and sometimes our thoughts are unclear on how to proceed. Who would of thought you can poop through your stomach. It's just amazing what doctors can do to save your life. This is why you have people like me...
by Rikimaroo
Wed Jul 01, 2020 1:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 487
Views: 176695

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

"I am PRAYING for a complete response as I have decided after much reflection that I would rather end my life than undergo a surgery that would leave me with a bag." I really hope everything works out for you, but I wanted to pull this statement out of your post. When I first got diagnosed...
by Rikimaroo
Tue Jun 30, 2020 5:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: FDA Approved Keytruda for MSS Tumors w/ TMB of 10+!!!
Replies: 10
Views: 825

Re: FDA Approved Keytruda for MSS Tumors w/ TMB of 10+!!!

Cynthia, That is awesome news. Very happy things are working and your here for a long time to enjoy your beautiful family. So the side effects Fatigue is nothing like being on FolFIRI? not even close right? How long does the fatigue last for? That CEA at .8 is the most wonderful number. I was there ...
by Rikimaroo
Mon Jun 29, 2020 11:57 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: FDA Approved Keytruda for MSS Tumors w/ TMB of 10+!!!
Replies: 10
Views: 825

Re: FDA Approved Keytruda for MSS Tumors w/ TMB of 10+!!!

This is great news. My Onc mentioned something about FDA approved something, not sure if it was Keytruda, but will talk to him. My TMB is 8, but I want him to do a new test from my last surgery, will talk to him about it. So when you say your Cancer free, are you not doing any regimen at the moment?...
by Rikimaroo
Sun Jun 28, 2020 10:28 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413
Replies: 8
Views: 542

Re: Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413

Rock did you get the vertical stealth or the one that you have to move your bag horizontal? How are you doing Rock since Ileo reversal? Glad to see your 6 months scans are good as well. I am debating getting the stealth belt. I just want to conceal it a bit more, just this particular bag brand stick...
by Rikimaroo
Sat Jun 27, 2020 10:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413
Replies: 8
Views: 542

Re: Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413

I assuming on the ostomy wraps you wear it only when your going out? Doesn't it feel constricting when your stoma is going to be active obviously this is unpredictable, so how do you work around that?

I think I wrap is a good idea as well. I just don't want the thing to show lol.
by Rikimaroo
Thu Jun 25, 2020 2:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413
Replies: 8
Views: 542

Coloplast SenSura Mio Click Two-Piece Closed Pouch 6211413

Hello All, Question regarding this pouch. I love the pouch and how easy it is to remove and snap back on. My only question is I feel this pouch is much more bulky in regards to sticking out. I know Lee uses it and not sure who else, but what have you done to make it less noticeable. I don't have a b...
by Rikimaroo
Wed Jun 24, 2020 12:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA on the rise ... PET scan scheduled
Replies: 2
Views: 964

Re: CEA on the rise ... PET scan scheduled

Sorry to hear this. CEA always makes me nervous and causes so much anxiety. My CEA was once 600 and went down doing FolFox. Eventually my oncologist decided that FolFiri is the next step for me and put me on that and it made a big impact on reducing my CEA. Has your husband Oncologist tried FolFiri ...
by Rikimaroo
Tue Jun 16, 2020 2:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 6 month scans clear
Replies: 21
Views: 2312

Re: 6 month scans clear

Great news buddy!! You have been very knowledgeable and helpful to a lot and I am glad good news for you. How are you doing post reversal?
by Rikimaroo
Mon Jun 15, 2020 11:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dog Deworm Has cured some cancer in humans
Replies: 5
Views: 674

Re: Dog Deworm Has cured some cancer in humans

Thanks everyone for the replies. Most informative CRG.

I am going to continue on as normal as right now I am not at the point for I have no options. Yes it is regarding Fenbendazole.
by Rikimaroo
Sat Jun 13, 2020 6:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dog Deworm Has cured some cancer in humans
Replies: 5
Views: 674

Dog Deworm Has cured some cancer in humans

Have you guys heard of this? I was wondering for some of those who are running out of options, or in a position to perhaps try the drug for a few months to see if it does something and report back, that would be something welcomed. Obviously a MD is not going to support this, because it is not somet...
by Rikimaroo
Wed Jun 10, 2020 9:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Well, its been a minute
Replies: 15
Views: 1861

Re: Well, its been a minute

He won't return to Cleveland clinic. For anything I feel like he's looking for and excuse to quit now I am sorry this is happening. Like your husband my cancer keeps coming back and now I am going to have to be on maintenance chemo for life. Excuse to quit or not, no one knows how hard and difficul...

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