Semi Colon ROLL CALL

I'll chime in as a caretaker.  Wife was diagnosed Stage IIIA.

28 rounds of chemo and radiation

Surgery

12 rounds of folfox

NED for 19 months so far.  (fingers crossed/toes crossed/four leaf clover on hand/rabbits foot and etc... )

So here goes the "german branch" of this great board (Caregiver to husband with stage IV coloncancer):

Husband diagnosed in Nov 2011, 2 mets to liver and 1 met to peritoneum. All was removed during surgery. He got a temp. ileostomy for 8 months and did 6 months of chemo (Oxi + Xeloda). Then ileo-takedown and NED ever since.

In Aug 2013 there was some excitement when a suspect area was discovered on the peritoneum during a CT scan. But the following surgery revealed it was just scar tissue. PHEW!

Last CT in Oct 2014 was clear, next sono + bloodcheck will be in 4 weeks, next CT in next August. So he passed his 3 years cancerversary being NED.

Hugs to you all from Cologne, Germany
Petra

annalexandria said:

Chiming in

Dx'ed in 2009 stage 4 at the age of 43; had been misdiagnosed as having lupus; cancer was discovered in emergency surgery when my tumor ate through my colon and went on a little explore, causing peritonitis.

Unusual blended tumor type, called a carcinosarcoma.  Only about 25 documented cases of it occuring in the colon.  Took a couple of months to get correct dx, a process that involved our local Tumor Board and a trip to MA General for my tumor samples*; very scared during this time as my sister had died only a year after dx at the age 44 of a Cancer of Unknown Primary.

2nd surgery, with removel of 38 lymph nodes (5 cancerous), and spots on the peritoneum.

No "recipe" for me in the "oncology cookbook" (as my doc put it), but tried FOLFOX/Avastin...no dice, cancer spread (or was already there, just not visible on scans) to more of the colon, small bowel, peritoneum.

Had 3rd surgery (again emergency, as the CT scans TOTALLY dropped the ball), supposed to be palliative in nature due to the extensive spread (probably the lowest point in this whole journey, watching family and friends cry at the news was the worst), but surgeon felt he got it all, and surgery became possibly curative.

New chemo regimen (carbo-taxol), which also failed, as PET found one new tumor.  Decided no more chemo, move into "watch and wait" mode.  PET scans a must to make this approach viable.

2 more surgeries, to mop up minor spread to colon and uterus/rectum.  These last two tumors seemed to be escapees from the previous big surgery.

I took cimetidine with the last surgery, which may have helped eliminate the chance of further spread.

A high point came when the gynecological-oncology surgeon who worked with my regular guy on the last surgery tells me that she's never met a patient with my tumor type who is still alive two years in, as it's highly malignant and kills rapidly.  She is the first to use the other "C" word, and give me hope for the future.

I have been NED since Dec. 2011, which is considered more or less cured for a carcinosarcoma (not enough cases to know for sure, but it doesn't seem to be a lurking kind of cancer).  I have a PET scheduled for January, and if it's clear, I will be done with scanning, hopefully for a very long time.

 

*just realized my cancer has traveled to the east coast and I haven't...that lucky little SOB.

surgery is key, imo.  Getting as much cut out as you possibly can really does make a difference in outcome.  I was fortunate to have aggressive surgeons, and I also chose the most aggressive option, when I had the opportunity to make a decision.  I think it's always worth getting a 2nd opinion from a surgeon, rather than relying solely on the oncologist to make this call.

   I was dxed with an aggressive stage 3 c colon cancer that had invaded six lymph nodes. My surgeon took part of my transverse and descending colon. He was not optomistic and stated that it would probably get me within three years. Too aggressive , too many nodes were his words. My oncologist originally put me on infusions of 5fu and leucovorin but after a month and five days of continuous infusions he said I was fast approaching renal failure so he changed over to 5fu and a drug called levamisole and all up I had 48 weekly infusions of 5fu and 234 tablets of levamisole. My surgery was on the 22nd of jan 1998 and I have been cancer free ever since. I have a raft of ongoing auto- immune diseases that they believe are linked to the original chemo therapy I had. The drug levamisole is an immunomodulator normally used by vets to control parasites in domestic and farm animals. It was banned for use on humans in the US in 2001 because of often fatal side effects. It was a weight critical dose ,too much killed you ,too little did nothing to the cancer and just right seemed to work for some of us. Ron.

Easyflip said:

Stage 4 as of a few months ago

Diagnosed IIIb march of 2013. 

Immediate colectomy plus 12 rounds of Folfox

Liver met removed sept 2014, no adjuvant chemo

First post surgery scan will be in early January 2015

Crossing fingers, carrying a rabbits foot holding a four leaf clover, avoiding ladders, black cats,broken mirrors and throwing handfuls of salt over my shoulder : )

A tough outlook, but we somehow adapt. I use the word adapt instead of accept as some things are just not acceptable.

I am Wolfen, mother of Johnnybegood and widow of Ron.

Ron lost his battle with H&N and Lung Cancer on May 5, 2013 only 6 monts after diagnosis and Johnnybegood lost her batlle with Colon Cancer on July 27, 2014 after 6 years. Both of them were true warriors.

Although I don't post often, I remain on the forum among my "family".

Luv,

Wolfen

abrub said:

Appendix Cancer, Stage 4

Dx'd April, 2007.  Surgery, intraperitoneal and systemic chemo.  NED since, and leading full, normal life.

Alice

diagnosed April 2011, blocked colon 3 places , left Hemi emergency operation , took out 10 lbs , stage III

i refused chemo and radiation, changed eating habits. CEA stays around 1.1  and declared NED.

i am a optimist and take things one day at a time, do I worry ......,, Ofcourse .....,, lately some stomach issues

will do test in 2015.  I am born in the Netherlands , met my husband when visiting friends of my mother in Montreal.  I have been living in Canada since 1970

wishing you all Merry  Christmas

thingy45 said:

My turn

diagnosed April 2011, blocked colon 3 places , left Hemi emergency operation , took out 10 lbs , stage III

i refused chemo and radiation, changed eating habits. CEA stays around 1.1  and declared NED.

i am a optimist and take things one day at a time, do I worry ......,, Ofcourse .....,, lately some stomach issues

will do test in 2015.  I am born in the Netherlands , met my husband when visiting friends of my mother in Montreal.  I have been living in Canada since 1970

wishing you all Merry  Christmas

Hello im Chris.

i was Dx less then a week ago an my surgery will be tomorrow actually. They just told me a blockage in my sigmoid colon looks like late stage 2 early 3 ... I have been since arguing with my family about after care. I was very much thinking of NOT getting chemo going a holistic route and seeing what happens but I'm getting blasted for this.. Can you please give me some input on whT made you decide NOT todo chemo ?? Thank you sooooo much. Hope your felling wonderful today and may God bless your family during this holiday season  

lilpep1972 said:

What made you refuse chemo??

Hello im Chris.

i was Dx less then a week ago an my surgery will be tomorrow actually. They just told me a blockage in my sigmoid colon looks like late stage 2 early 3 ... I have been since arguing with my family about after care. I was very much thinking of NOT getting chemo going a holistic route and seeing what happens but I'm getting blasted for this.. Can you please give me some input on whT made you decide NOT todo chemo ?? Thank you sooooo much. Hope your felling wonderful today and may God bless your family during this holiday season  

Thingy may comment too, but I thought I would also respond here...from what my doctor said, there is some thinking now that doing chemo when nothing is visible may not be the best approach, esp if no lymph nodes are involved.

Do you know if you had node involvement?

The things I think this approach requires are careful monitoring and access to surgery as needed.  For me that meant having regular PET scans once I was no longer doing chemo.

Good luck with your surgery, let us know how you're doing!