Semi Colon ROLL CALL
Hi Everyone,
Back in 2007/2008 when I was deep in the fight I remember a thread that everyone listed where they lived and being amazed at how many people actually read this board (there are many more lurkers than posters!!!).
I will start a new one with a little twist, stage and current status (in treatment, starting treatment, surgery scheduled, NED, etc). As a stage IV survivor I remember how I felt that there were so many others fighting and beating the beast and the stats were so WRONG!! I think it was Stacy that said "numbers are for Vegas" and we all know medical science does not understand nor can it measure internal fortitude.
For the "newbies" NED means No Evidence Of Disease. You have to be NED 5 years before the docs and insurance companies deem you cancer free.
I will start.....................
Dxed 05/07stage III, had surgery, Chemo and radiation, clear for almost 6 months, came back in 10/08 stage IV with met to right lung, surgery again, more chemo, but currenly NED 5 1/2 years, I currently live in San Antonio, TX. USA
next..........
Comments
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AWESOMEDD3 said:Dorookie
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 glad to hear your wife is NED and i will pray for that to continue for say always! Caregivers are just as much apart of our fight as our ONC teams, i know i would have been lost without my partner.
HUGS
BETH
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Again AWESOMEYolllmbs said:I'll give it s whirl
diagnosed April 2014 stage 3b. two lymph nodes out of fifteen effected.
I did 10 out of 12 scheduled rounds of Folfox5
My oncologist and surgeon consider me NED
i live in Huntington Beach CA
no bloodwork or tests until March 2015
Yolanda
Great news to hear, keeping you in my prayers...
Maybe more will chime in too, its interesting to see where people are from and how their story goes
HUGS
BETH0 -
Stage IV
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
Petra0 -
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.
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BTW if it wasn't clear from my story,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.
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GREAT thread, dear one!!!
Dx'ed stage III rectal cancer Nov 2004. During PET scan to see how far it had spread (there was a worry it was all over abdomen), a lump in my breast that I had been 'watching' (mammograms yearly, self exams daily) 'lit up' as to being on the intake. Most likely cancer, as well. (Turned out to be stage II breast, second primary).
My oncologist said "If you survive the rectal cancer treatment, then we will treat the breast". I responded: "Change the 'If' to a 'When', and we have a deal!
Long story short, that was 10 years ago...
I was blessed to have both cancers respond to each of their first line protocols: Chemo/rads and a J-pouch resection for the rectal, and lumpectomy chemo/rads following for the breast. I remain NED....
I must add, though, that up until the time that it was waived, insurance companies refused to underwrite me....with dual primaries, there is no 'cancer free' consideration after 5 years. So, I was one of the lucky ones that already had coverage(although VERY expensive), and then when the 'pre existing' clause was banished by the Obamacare, I quickly secured a new policy, at almost half the monthly premium....
As I posted a bit ago, I am living a totally different life. I have retired, and with my beau of 23 years (who received a new heart transplant July 2013), live both in The States, and The Netherlands. And both of us are now authors....
*grin*.....what a lifestyle....*grin*...take THAT, cancer!!!!
Hugs, Kathi
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Anniversary on 22ND of jan
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.
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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 : )
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It Is What It IsEasyflip 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
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My turnabrub 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
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Freshman
Just Dx four days ago. Colon, Dr is guessing right now late stage 2 early 3 maybe I should ask my team for the lotto #'s in next weeks drawing as well and take everyone on this board on a very well deserved trip to say Bora Bora.. Would that be ok with everyone??? lol....Sorry jus trying to keep positive,don't think it has actually sunk in yet. Last week I was in gym at 430 am then off to work then to coach my girls basketball team now I'm here..life is wacky sometimes I guess....I'm going in for surgery tomorrow Dec 16th with Dr.Paty at Sloan Kettering. Haven't even yet received my surgery time As of yet... It's 5am an I went to sleep at 12:30 I'm guessing my dreams weren't so pleasant
I would like to say hello to everyone on planet Colon and wish everyone happy holidays. I just joined this site two days ago and everyone on here is wonderful and very helpful. Thank you very much 
I guess I will be seeing a lot of everyone here and thank you for welcoming into your family I greatly appreciate it. 0 -
What made you refuse chemo??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
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Private messagelilpep1972 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
You can also send a private message, Chris. Just in case Thingy doesn't get to see this post.
Tru Sue
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Welcome to the forum, lilpep!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!
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Dear Ms. Kathi,KathiM said:GREAT thread, dear one!!!
Dx'ed stage III rectal cancer Nov 2004. During PET scan to see how far it had spread (there was a worry it was all over abdomen), a lump in my breast that I had been 'watching' (mammograms yearly, self exams daily) 'lit up' as to being on the intake. Most likely cancer, as well. (Turned out to be stage II breast, second primary).
My oncologist said "If you survive the rectal cancer treatment, then we will treat the breast". I responded: "Change the 'If' to a 'When', and we have a deal!
Long story short, that was 10 years ago...
I was blessed to have both cancers respond to each of their first line protocols: Chemo/rads and a J-pouch resection for the rectal, and lumpectomy chemo/rads following for the breast. I remain NED....
I must add, though, that up until the time that it was waived, insurance companies refused to underwrite me....with dual primaries, there is no 'cancer free' consideration after 5 years. So, I was one of the lucky ones that already had coverage(although VERY expensive), and then when the 'pre existing' clause was banished by the Obamacare, I quickly secured a new policy, at almost half the monthly premium....
As I posted a bit ago, I am living a totally different life. I have retired, and with my beau of 23 years (who received a new heart transplant July 2013), live both in The States, and The Netherlands. And both of us are now authors....
*grin*.....what a lifestyle....*grin*...take THAT, cancer!!!!
Hugs, Kathi
What a great life you have, i would trade you in a second...ANd so good to actually hear from someone that benefited from Mr. Obama...LOL
Love you
HUGS
BETH0 -
Dear Wolfen,wolfen said:It Is What It Is
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
I too dont post often, i get conflicted at times, because for whatever reason I am still here, stage 4, and yet just passed 6 years, i struggle with why me, although i know i shouldnt, we have lost so many to this beast, i am glad to see you still around, i am truly sorry for the loss of your husband and more recently your wonderful daughter, who we all loved so much!
HUGS
BETH0
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