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Apr 02, 2009 - 3:58 pm
Hi Everyone, Back in 2004/2005 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 2/04 stage IV (mets to liver and 1 lung), currenly NED 4 1/2 years, Greensboro, NC. USA next.......... |
Joined: Jul 2009
LOVE David Medich!!
Dawn,
Yes, David Medich did my surgery at AGH! Love the man - he is an AWESOME doctor! would you mind sending me your email address - mine is michelle.chappell@cancer.org....I would love to ask you some questions, if you do not mind!
Joined: Sep 2009
Nice thread
A lot of reading here, but so encouraging for me.
I have my first appt with the oncologist tomorrow morning. (I also plan to get a second opinion.) I had surgery on 9/2/09, stage IIIc, moderately differentiated, 5 of 17 nodes positive. Margins clear, CEA 1.8.
I've been researching the different treatment options, survivial rates, recurrance rates, etc., and am overwhelmed. Tough decisions ahead, but once I make them it will be full steam ahead to chase any possible cancer cells out.
Joined: Jan 2008
Jimbob Here
April 2005 saw blood in the stool. Ten days later had surgery and ended up without a rectum and now have a permanent Colostomy.
I am the Poster boy for early detection. I had no bowel perforation or no lymph nodes affeted, stage one. No chemo or Radiation was required. I am easily coping with the Bag, Not a problem.
I was Born in west Virginai, Raised in Ohio, Now living in Pensacola, Florida. I am a Retired US Marine Aviator. 67 Years old.
I do not post much here but am frequently in the Chat Room. come on in and say hello to me.
Jimbob
Joined: May 2006
What a coincidence!
My sister is dating a guy named Jimbob. I didn't know there was another one. LOL
Joined: Mar 2006
Not the only one
I have a cousin named Jim Bob. You'd think with that name he was born in the South. Wrong! He's from a small town outside of Kansas City.
Joy
Joined: Aug 2008
Michelle I will pm you
Ask anything you want!
Joined: Jun 2009
Roll Call
Hi everyone,
Dxed in April of 09 stage II, surgery removed 1 ft of colon,In treatment...Chemo- oxy and 5FU, 12 treatments will start my 8th this Thursday. I live in the Chicago suburbs.
Joined: Jul 2009
Terry from Kentucky
Diagnosed May 8, 2009 by routine colonoscopy
Stage IIIb sigmoid colon with added bonus of right kidney renal cell carcinoma
Surgery June 15 with resected colon 2/15 lymph nodes with microscopic cells no mets and
removal of right kidney with 0/9 nodes no mets
Both were primary tumors (have a lovely scar from stem to stern resembling a local highway complete with pot holes)
Started Chemo with the lovely Oxilplatin(sp?) and 5fu pump for 46 hours. Have completed 5 rounds and have 7 to go. Having issues with neuropathy mostly in hands and feet, even with getting mag sulfate and calcium.
I live in Louisville, Kentucky...home of the Kentucky Derby.
Joined: Jun 2006
Hello fellow Kentuckian
Hello Terry. I think I forgot to mention where I lived in my "semi-colon roll call" post, but I live in Winchester, KY. I have several friends and family members in Louisville. Love to go there and splurge on lunch at the Cheesecake Factory.
I was diagnosed with Stage IIIC colon cancer in 10/04. Surgery, 13/19 lymph nodes, but surprisingly no spread to other organs.
You are on the same chemo plan as I was. There is light at the end of the tunnel. The neuropathy eventually improved and is really not much of an issue now for me. Hopefully it will be the same for you.
Wishing you the best as you continue your chemo treatments.
Kathy
Joined: May 2009
Stage 4
Diagnosed April 2009 stage 4 with 4 liver mets and cancerous nodes in pelvis and abdomen. My location is Lewisville, Tx. A suburb of Dallas. I am responding well to treatment and have only 2 more to go. The last scan showed most of the cancer already in remission and I am expecting ned when I am through.
Eric
N/A
This comment has been removed by the Moderator
Joined: Sep 2009
Saco Maine
This is a great site! I've only been a member since September.
My Journey:
Had a colonoscopy in 2005 at age 50, not even a single polop. Joke with friends about being a perfect A--- H---, vs friends who had polops who were not perfect.
Fast forward to April 2009. Feeling extremely tired, no longer able to walk my 4 miles a day. Daughter gets upset and says you better call the doctor, saw him the next day. 4 days later get the call, "I need to see you and your husband right away". Cried a bit and off to the docs, tells me: You have a mass in your transverse colon, mass in your liver (half of my liver is cancerous) and multiple nodes that are affected, some near my aorta that can not be removed. Admitted next day for a colonoscopy, surgery the day after, on the Saturday before Easter. So in 6 days I went from what I thought was being healthy to Stage 4 Cancer and had surgery to remove colon tumor and multiple lymph nodes. They say I have had cancer for at least 3 yrs. What a trip!!
4/09 Surgery to remove tumor
5/09 Started on Folfox
6/09 Hospitalized for small perforation of bowel
10/09 Going to be 55 on October 29th, 10 days after last Folfox
11/09 ?????????????? What will CT scan show!
Joined: May 2005
Sonia
This was started back in April that has a lot of members stories.
-phil
Joined: Feb 2006
Hello All
Hubby diagnosed 1/5/2006 Stage IV, Met to Liver and 2 Lymph Nodes
Last Scan still all clear, next Scan 11/5/2009
See you all at the NED Happy Dance in November
Patti & Dennis
Florida
Joined: Apr 2007
Better Late Than Never
Hi you guys! It's Mommy here - checking in. I have been lurking , not ashamed to admit it. I seem to tlurk when I have a PET scan due - don't need to be a shrink to figure THAT one out - As I was reading this great big ol' long thread - I was reminded if the first time I "found" this site - after my first round of chemo - post surgury when all this was new and scary to me. I spent hours reading the posts - getting hope by each line and story - I was a sponge soaking up the information, and understanding I was not alone. It was a moment in time I will never forget. So, yes I was on-line a lot during those days - and have gone back to my wonderful life - with cancer taking more of a back seat, and this works for me. But I do checkin here and read and try to help others with ideas or support like some gave to me - I owe so much to this site. I met an amazing friend here, Heather, and she was my angel during my dark hours, when Lord knows she had so many of her own, she help me navigate mine.
So I am in San Diego.
Diagnosed Stage 3 in Feb 07
12 rounds of chemo -
One year later December 08- solitary lung mass - RFA treatment zapped it out -
PET scans every 3 months - all have been clean so far - another one this week -
I am excited and wanting to celebrate my first official year NED - so we'll see - It is in God's hands and He hasn't let me down yet!
Keep the faith my colon cancer friends -
Hugs from Mommy -
Joined: Apr 2009
to mykidsmommy
Hi
I am also from San Diego...north county.There are several of us stage 3 and 4 gals here. What cancer center and doctor do you have? I have the exact history and timeline as you, just had a lung met removed and my onc is making noises about 'maintenance" chemo. Yuk. My post op scans are clear. Any word about not doing maintenance chemo???????
Serrana
Joined: Mar 2008
Hi
Dx 2008 stage 4. just recently diag. with mets to spine and lung. currently in treatment. xeloda oxyaplatin and avastin
Hugs
Karyn
Joined: Sep 2009
roll call
Hi! It's Lynne from New Orleans. I was diagnosed in June of this year - no family background. Went to doc because of severe tiredness. Went in hospital with severe anemia. Did testing. Had resection and total hysterectomy on June 10. Turned 49 years old when I left the hospital on June 15. Great birthday present!! (Ha Ha). Tumor was attached to uterus - that's why I had to have a hysterectomy. Stage III with 2 out of 19 lymph nodes positive. No mets. 4 inches of colon removed. Currently on round 5 of 8 with xeloda pills and oxaliplatin infusion. Should have last treatment 2 days before Christmas - barring unforeseens. Positively HATE oxaliplatin. Onc. wanted me to do clinical trial with urbitux - found out I have KRAS mutation - so I wasn't eligible. Loved finding this board. Have since had 2 distant "friends" dx'd with stage IV and stage II colon cancer. Stage II'er has to have rectum removed and rebuilt - but may not need chemo. Later - Lynne
Joined: Aug 2009
My Story
Sister dx 03/09 stage IV with mets to liver, ovaries and peritoneum. She is 39 with 3 small children. She had no alarming symptoms, but did complain of night sweats, insomnia. She had emergency surgery when her tumor perforated her colon. She is currently on Avastin with 5FU. It has been quite the battle and a very huge eye-opening experience. Cancer sucks and we need to do a better job educating physicians and making this a better process for patients. We are amazed at the kindness of strangers, friends and family. This board has been an amazing strength to me and it has made me appreciate everything I have. To all of you semi-colons out there, I pray for you each night. Not too many Californian's on this board, so here is a shout out to the "bankrupt" state. Palo Alto, CA.
Joined: Apr 2004
Bump
For others to see and add to.............
I really enjoy seeing all the familiar names on this thread!!!
Lisa P.
Joined: Dec 2009
Great post
This has made me feel so much better.
Hubby was dx 12-14-09 stage IV colon cancer with liver mets
He starts folfox 1-25-10.
So good to hear everyones stories
Tina
Joined: Sep 2009
me
Dec 08 diagnosed with stage 3 B
colon resection surgery, 6 mos of chemo
currently NED
my mom and her mom died from colon cancer I never thought it could be beat, you all have taught me different, may God bless you all
Joined: Oct 2009
My turn
Thought I had done this already, but must have been a dufferent thread. Because, I don't remember it being this long. Anyway...
40yo. routine physical, primary suggest colonoscopy due to family history.
Aug 09' - He finds 2 polyps(1 cancer.) Got the news same day as my 1yr. weddding anniversary(easy to remember now, huh?)
Sept 09' - Had resection surgery, post pathology 1 of 13 nodes positive. Stage IIIa, Chemo time (oh joy!)
Oct 09' - Pre-Tx CAT scan shows NED, still have to do chemo, $#*%!
Today - Just finished Tx #6 FOLFOX, at the halfway point!
Married to a beautiful wife and wonderful care giver. Live in Sugar Hill, GA(Metro Atlanta) near Mall of GA and Lake Lanier.
-DJ
Joined: Mar 2009
Bumping for new members
Bumped!
Diane
Stage III, dx Jan. 2009, NED since Jan. 7th 2009 so 1 year
Joined: Dec 2009
Roll CAll
Hi from Tulsa Oklahoma 62 yr old female suffered for 3 yrs with pain had a colonostpy (sp) july 2009 removed 3 precancerous polops ,still had very bad pain they did a c-scan and 2 hrs later in hospital surgery to remove a soft ball size tumor on my colon and the entire colon was removed along with 34 nodes 19 cancerous been on Xeloda 3000 my 2x aday for 4 months 4 more to go. Last c-scan showed NED. Stage3 with no other organs involved no bag of any kind. pooper shooter works fine.
Joined: Feb 2010
Me Too!
Hello all. Its been great reading everybody's stories.
I am a 37 year old wife and mother. I got diagnosed with stage IIIB Colon Cancer (2 out of 26 lymph nodes affected) and 6 inches less colon in June 2009.(My friends and family always told me I was full of it) Now I believe them. Just finished my folfox (yuck). I am now addicted to ice cream because I couldnt have it while on chemo (neuropathy). I am just curious how many stage 3b's there are here and what has been there experience. I have had 2 pet scans that show clear. Should I take a sigh of relief? Is it all gone? Or is it just waiting to come out again when I least expect it to?
Joined: Apr 2009
Roll call
Hi, I was dx. on 3/10/08,stage 3 going on stage 4.Have been NED since july 08.Had surgery 7/16/08,and have a permanant colostomy bag.They removed the tumor,attached to tail bone,appendix,and 11 lymph nodes.Aurora,Colorado.USA.
Joined: Feb 2010
Husband
My husband was dxed 01/08. He's now stage IV, mets to lungs and "belly" (whatever that means). 1st Resection/Colostomy 03/08; first round of chemo and radiation 02/09; bowel resection 11/09; now starting second round of chemo. Had his first treatment two weeks ago. Went back yesterday for second treatment but was unable to receive because of lab work (kidney functions). Try again next week. We live in Kentucky, USA.
Joined: Mar 2010
My Story
I was diagnosed 11/03/09. I had changes in bowel habits for over a year, but between Hurricane Ike flooding my house, my crazy travel schedule, lousy eating habits & way too much stress, my GP thought I had a terrible case of IBS wen I went in to complain of new stomach issues I was having.
I had both a colonoscopy & endiscopy at the same time. While I do have some upper GI issues, the cancer was the priority. I was 90% blocked in my colon by a tumor! They had to use a pediatric scope to finish! How do you walk around with that much blockage, and not have any of the regular symptoms???
I also had a precancerous section in my colon. The docs all agreed that the whole colon should come out, as I had over 150 polyps! I cosr a double resection. I was staged III, and had 2 of 29 lymph nodes with cancer cells, and am now on my 9th of 12 chemo treatments.
I live in a little town just northwest of Houston, called Tomball, Texas. I am very greatful that I have a cancer clinic just a few blocks from my house, and the doctors all come from MD Anderson. I feel pretty lucky about that!
Kathi
Joined: Nov 2014
I love this thread as it is a
I love this thread as it is a "summary" of survival!
____________________
[Content removed by CSN Moderator]
Joined: Jan 2013
Curious
I am curious about this post. I will not be opening the link, just in case.
Joined: Feb 2007
Present
Dx'd 2006 stage 2b colon; dx'd 2007 stage 1 uterine; currently NED 8 and 7 years, respectively. Buford, GA, USA.
Joined: Mar 2012
Here You Go
Dxed: 1/13/12
Surgery: Right hemi choloectomy (ascending colon) followed by 6 months of 5fu and Oxi
Stage: 3B, signet cell
Current Status: NED (3-years on 1/31/15), alive and very happy to be that way!
Neuropathy - still in hands and feet, chemo brain and a little wobly at times
NC. USA
Next....................................
Joined: Jun 2009
April 2009 - Surgery to
April 2009 - Surgery to remove tumor Stage IIIC -- 6 month chem ... Ned 5 years now ....due a scope this month..
Joined: Feb 2010
sans colon here
Rick, 54
DX III two tumors Feb 09
Chemo/rad March 09
Ileo June 09
FOLFOX July 09
Takedown April 10 (failure!)
Mets to the sacrum and presacral area March 11 - NOT
Chronic infection of sacrum that looked like cancer (including a blockage and bone loss)!
Permanent ileo April 11
almost 6 years NED!
happy to be alive! 6 grands and counting!
you know 6 years means a lot to me because statistics suck. my oncologst was a researcher at sloan kettering prior to entering private practice. he said, concerning statistics, (i was concerned about skipping my last two chemo infusions because of nueropathy) ether you are on one side of the line or the other, to the left you die, to the right you live! i am on the right side of the line! yay! ofc course if you start counting NED from the end of treatment (my last chemo was jan 27, 2010), i am only almost 5 years NED. since they took my whole colon i am going with that date. who the hell needs a colon!?!? not this guy!
Joined: May 2012
Love this
You rock Scouty, now these are the posts that I love to see. I know there are a lot of Stage IV survivors but they don't come on much.
Dxed 2/2012 stage I, first surgery was a bust, finished stage III, chemo/rad and second surgery success, permanent ostomy but still kickin', currently NED 22 months, Queens, NY
Joined: May 2012
I just realized this post is
I just realized this post is very old. Makes me sad because I saw someone I thought had passed and I thought OMG she hasn't but sadly, she has. This post is from 2009 but I think it's a great record of all those who have been on this board.
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