Search found 29 matches

Go to advanced search

by Phillypatient
Sun May 26, 2019 7:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Whole rectum removed
Replies: 7
Views: 544

Re: Whole rectum removed

Also, I don’t know your treatment teams philosophy, but are they, and more importantly you, open to “watch and wait?” Of course, this depends on whether you have had a complete response to treatment or not. Many of the top centers are incorporating this treatment plan based on the severity of the su...
by Phillypatient
Sat May 25, 2019 10:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Whole rectum removed
Replies: 7
Views: 544

Re: Whole rectum removed

That happened to me. It’s a way to address low rectal tumor. In my case the connect directly to colon so it’s called a coloanal anastomosis. It sounds like that is your case. It’s a way to “preserve” the natural bowel movements as opposed to a colostomy bag. It’s also generally associated with high ...
by Phillypatient
Tue Apr 02, 2019 1:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 395
Views: 112864

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

Congrats Jolene!! You really did just win the lottery!! That said, you should absolutely do the chemo part to address any potential micrometastases. The xeloda dose is slightly higher than the one you took during radiation, so if you tolerated that okay, then that should not be such an issue. It's t...
by Phillypatient
Tue Mar 26, 2019 2:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 395
Views: 112864

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

Jolene Have you considered consolidation chemotherapy which is done CRT first then chemotherapy and finally surgery if there is no CCR? Below are two links worth reading https://www.mskcc.org/clinical-updates/sidestepping-rectal-cancer-surgery-total-neoadjuvant-therapy https://www.spandidos-publicat...
by Phillypatient
Fri Feb 15, 2019 3:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 395
Views: 112864

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

I think the PROSPECT trail shows that chemo itself can shrink a tumor, so it’s possible for chemo to be used to treat any potential micromestastases in addition to addressing the primary tumor. See the below link from MSK from 2015 https://www.mskcc.org/clinical-updates/toward-curing-rectal-without-...
by Phillypatient
Thu Feb 14, 2019 2:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 395
Views: 112864

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

Hi Jolene You should check this out. He is head of MSK Colorectal surgery and running the watch and wait study. I'm surprised you have not been advised to do full chemotherapy. It's called "consolidation" chemo and increases the chance of a full response. My opinion is that I would do ever...
by Phillypatient
Wed Dec 19, 2018 10:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Percentage That Have A Complete Clinical Response To Chemo/Radiation
Replies: 12
Views: 3185

Re: Percentage That Have A Complete Clinical Response To Chemo/Radiation

https://clinicaltrials.gov/ct2/show/NCT03565029 That sounds about right and what the doctors said to me. https://www.mskcc.org/clinical-updates/toward-curing-rectal-without-surgery The above link is one of the doctors leading the study. Really do what you can to get there, because the surgery is awf...
by Phillypatient
Mon Nov 26, 2018 10:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Is LARS a foregone conclusion? Anyone doing W&W?
Replies: 29
Views: 4920

Re: Is LARS a foregone conclusion? Anyone doing W&W?

Neither of the surgeons I consulted with mentioned anything about it. As one surgeon put it, when I asked what life would be life after surgery - he said, "You just may not want to eat before you go to a cocktail party." This is borderline insulting and quite infuriating. I also had a sim...
by Phillypatient
Mon Nov 19, 2018 6:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No chemoradiation before surgery
Replies: 12
Views: 1129

Re: No chemoradiation before surgery

I’m confused. Are they saying to do a LAR? I thought MSK would try to treat it and see if they can get you to a watch and wait status so you don’t have to have the surgery. My experience is that the surgery is brutal and should be avoided at all costs. https://www.mskcc.org/clinical-updates/toward-c...
by Phillypatient
Wed Nov 07, 2018 11:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Did Daily Enema Users consult Doctors?
Replies: 14
Views: 1767

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.
by Phillypatient
Thu Nov 01, 2018 3:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Did Daily Enema Users consult Doctors?
Replies: 14
Views: 1767

Re: Did Daily Enema Users consult Doctors?

Thank you so much for the reply Susan. After 10 months out, I think I'm at my wit's end so I'm ready to try things LARS sufferers' employ as opposed to my surgeon who said "oh, you'll just make a couple extra trips to the bathroom...no biggie" Another surgeon also did not recommend enemas,...
by Phillypatient
Wed Oct 31, 2018 5:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Did Daily Enema Users consult Doctors?
Replies: 14
Views: 1767

Did Daily Enema Users consult Doctors?

Hi All I’ve been doing some research on how to deal with my LARS. I had my reversal Dec 2017 and it’s been brutal. I’ve also read some good advice on daily enema usage and wanted to know if users consulted with their doctors first. Also, how long post-reversal did you start using enemas? Thanks for ...
by Phillypatient
Wed Oct 24, 2018 8:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update from Rikimaroo
Replies: 44
Views: 5997

Re: Update from Rikimaroo

My suggestion is to get a bidet attachment to your toilet. The wiping will take it’s toll on you fast!
by Phillypatient
Wed Oct 10, 2018 5:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I am so worried.
Replies: 39
Views: 5834

Re: I am so worried.

Very interesting about the Watch & Wait approach. I told my mom we for sure should seek a second opinion at Mayo if we are lucky enough to have a complete response. I cannot emphasize how much you want this to happen. When surgeons are trying to find ways to not cut you up, you know the surgery...
by Phillypatient
Wed Oct 10, 2018 7:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I am so worried.
Replies: 39
Views: 5834

Re: I am so worried.

1. If it is rectal cancer, it seems surgery is 4 months out—is that pretty standard? I’m so nervous about it spreading during that time, but the doctor said the chemo/radiation would be fighting to do the opposite. That’s pretty standard. I would also note that some people have a complete response t...

Go to advanced search