very young with stage IV colon cancer

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lmhs1935
Posts: 2
Joined: Thu Jan 31, 2013 9:57 am

very young with stage IV colon cancer

Postby lmhs1935 » Thu Jan 31, 2013 10:10 am

Good Day. I have a friend who is only 26 with stage 4 colon cancer. She is going soon for a clinican trial out of state. What can I tell her to expect? She didn't even make it through a whole round of chemo as her cancer was discovered in another place and more surgery was required.

shmurciakova
Posts: 782
Joined: Wed Nov 08, 2006 6:25 pm
Location: Sugar Grove, VA

Re: very young with stage IV colon cancer

Postby shmurciakova » Thu Jan 31, 2013 10:26 am

Well, it is good news that surgery was required. That implies that something was able to be removed. Can you provide a little more info. on her case? Has she had a second opinion, or has she been to a major cancer center? You say she is going for a clinical trail? How long has she been dealing with this? It is kinda hard to say what she should expect without more details - but she is not alone! I was diagnosed when I was 31, and there are others on here younger than that. I am sure you and she can find lots of support and answers to your questions on this forum.
Best wishes,
Susan H.
diagnosed at 31 in 2002, Stage IV
Sigmoid colectomy - 6 mos 5-FU/Leukovorin
liver resection - 6 rounds XELIRI (xeloda/irinotecan)
lung wedge resection Oct. 2004 - no chemo
NED!!

lmhs1935
Posts: 2
Joined: Thu Jan 31, 2013 9:57 am

Re: very young with stage IV colon cancer

Postby lmhs1935 » Thu Jan 31, 2013 10:48 am

Her first surgery was to remove a big mass in her colon. Lots of lymph nodes with cancer, a few that didn't of the ones they biopsied. Her last one was before Christmas and she had several "muscuous"(sp) tumors removed along with one that was on her aeorta in her stomach, left side. They removed 13 lymph nodes and 9 were positive. After that her dr here thought she needed to go to Vanderbilt for a clinical trial. Pet/CT scan done last week and it showed more in her abdomen, close to where she had the last ones removed. It is not in her lungs or liver but because of the location they are saying stage IV for sure. She had chemo for several months and during this time is when it returned in a different location. She only has her mother, who lives out of town and her fiance, who is wonderful and lives with her. She is on prednisone right now for pain in her leg, the same side of the last surgery because of inflammation radiating down. She has seen quite a few different doctors here in town. (Fairly big city) I think she has only actually had drs appointments with one oncologist though. She did see an surgery oncologist for the last surgery since it was on her aeorta. Does this extra info help. She has come to be for support and help because I have a sister with a different type of cancer but I am at a lost about trying to help her. I've encourged her to get on this sight.

smm313
Posts: 2
Joined: Thu Jan 31, 2013 10:23 am
Facebook Username: Stephanie Martin
Location: Birmingham, AL

Re: very young with stage IV colon cancer

Postby smm313 » Thu Jan 31, 2013 10:56 am

I am pretty sure this post is about me. :D Thanks Lauren you are so sweet. I have a post that says HELP!!! Questions!!! that has more of my story. Any information would be very helpful. Thanks, Stephanie
5/2012 Diagnosed 3C
5/2012 Colon Resection
6/2012-11/2012 FOLFOX Oxciliplatin
11/2012 Cancer Back
12/2012 Lymph Node Resection
1/2013 Stage IV
2/2013 Sent To Vanderbilt for Clinical Trials
3/2013 Supposed to Start Folfiri and Avastin :(

7/2013 Took myself off of Chemo
12/2015 All clear no Cancer

hannahw
Posts: 2098
Joined: Sat Mar 22, 2008 4:35 pm

Re: very young with stage IV colon cancer

Postby hannahw » Thu Jan 31, 2013 11:38 am

A lot of what you can expect from a clinical trial depends on the phase of the trial. For example, Phase 1 is very different from Phase 3 because, Phase 1 trials focus on establishing toxicity of a drug whereas Phase 3 is about determining efficacy. The best way to know what to expect from a clinical trial is ask the doctor. Really, the doctor should provide thorough information to a patient before the patient even signs on. Unfortunately, this doesn't always happen. A lot of times patients have misconceptions about what to expect from the trial and what they can potentially expect to achieve from participating. If your friend is unsure what to expect she should speak to a doctor involved in the trial and ask for detailed information about expected side effects and prognosis. She should also know whether there's a group of patients getting placebo.
Daughter of Dad with Stage IV CC

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Yellowbird
Posts: 143
Joined: Sun Mar 04, 2012 10:00 pm
Facebook Username: Laura Yarbrough Abbott
Location: Texas

Re: very young with stage IV colon cancer

Postby Yellowbird » Fri Feb 01, 2013 11:57 pm

Sounds like she has peritoneal carcinomatosis.

Has anyone mentioned Cytoreduction with HIPEC? If done right - by a very experienced surgeon - she might expect a CURE.

I suggest she contact a HIPEC surgeon - not the closest one to you - find the best! I went to Armando Sardi in Baltimore, Mercy Medical Center. Paul Sugarbaker is another one. The point is, this is a serious surgery and you want to go to a surgeon who primarily does these surgeries....not one who does them as a sideline.

And the sooner, the better. Her chances for survival are best if she does the surgery asap. Have her call Jennifer Francis at Mercy Medical. A look at her records will tell if she is a candidate.

The first person Dr. Sardi did this surgery on was over 15 years ago...she is still alive.
Dx stage III July '10
Colon resection August '10
8 rounds Folfox
dx stage IV peritoneal carcinoma May 11
HIPEC Aug 11
Mop up folfiri with avastin
July 12, liver mets multiple metastases


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