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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: Dec 2001
Here!
Dx'ed 8/01 Stage III sigmoid colon cancer with 2/19 positive lymph nodes zero mets.
Chose to forgo chemo for alternative, Traditional Chinese Medicine, CHEMIA (juice of the plant) protocol.
Have remained NED for 7.8 years!
Two Harbors, MN up in the hinterlands of Lake Superior in the Northwoods with the moose, bear, wolves and mountain lions. Currently. Will be moving to Racine, WI in the near future.
peace, emily the juice chick
Joined: Apr 2009
semi colon roll call
I love this thread as it is a "summary" of survival
However do we need to change the title? My understanding was that "Semicolon" usually means folks with j-pouches, no? yes? Maybe it means someone with part of a colon? Answers?Maybe we need a j-pouch thread?
Serrana
Joined: Oct 2008
Semi Colons
Serrana,
Semi Colons are anyone who has had colon/rectal/anal surgery. We have all lost part of our colon, so that makes us semi-colons. I have not ever heard it refer to just one type of surgery.
hope that helps! Vicki
Joined: Jun 2009
Surgery
I have not had surgery and don't plan on it unless the cancer comes back.
diagnosed 11/08 stage 1 anal cancer NED Washington State
Debbie
Joined: Sep 2009
traditional chinese medicine
where can I get the chemia protocal to buy.
Please explain what you did, it is amazing you cured yourself without chemo
Joined: Oct 2008
OK, my story
DX'd Stage 3 rectal cancer 10/22/08
Chemo/radiation until 12/29/08 - responded completely - tumor vanished, no lymphs involved
Resection 2/4/09
Currently doing mop-up chemo once a month until June 09
Waiting for NED!
Fort Lupton, CO - North of Denver
Vicki
N/A
This comment has been removed by the Moderator
Joined: Feb 2007
Present
Dxed 08/18/2006, surgery + Folfox. Chemo over 02/2007. Dx'd w/endometrial 06/2007, surgery only. Currently NED 1 yr 8 mos. Buford, GA USA.
count off.....
Joined: Jan 2009
my turn
hi still fairly new dx on Jan 22 of this year with stage 4 colon mets to lung , had stage 2, 3 yrs ago got lucky for awhile hopefully itll happen again, Ohio USA
next by the way I love the pic of your boxer We have 3 gotta have a sense of humor to own these dogs huh?
Joined: Apr 2004
3!!!
My one keeps me so busy and I tell everyone she is my cancer fighting dog. On those really dark days, she would always do something to make me laugh. BY FAR, the best dog I have ever had. Have you seen the video of the baby and the boxer touching hand to paw. It is so cool and I love the boxer yawn in it.
Joined: Jan 2009
havent seen that video
Scouty
No I havent seen that video but it sounds like a boxer. You have that post about Florida too I think , I do have a question for you , my husband and I are going to Ocean city this month I love the ocean but the dr has warned me about the sun are the side affects that bad or is it just rash? I just thought you would be the one to ask the Florida vacation sounds like fun too hopefully next year?
Joined: Apr 2004
Are you on 5FU
I used to live in DC so am very familiar with Ocean City. I'm guessing you are taking 5FU or Xeloda (I think that is the pill version of 5FU) and yes they do warn about skin irritation from sun exposure while on it. But they also warned me about digging in my gardens and I could pick up serious infections from the soil. That last one pissed me off big time so I ignored it and planted my veggie and flower gardens anyway (a few time with my 5FU fanny pack on in the sun) and never had any problems. I found it very important to do normal things every once in a while so I could forget I had cancer even if it was just for a few minutes.
I will say it seemed I got red pretty quickly so I just lathered up more sunscreen and was careful not to be out in the sun for too long at a time. I went on an all day deep sea fishing trip and just stayed in the shade more than I usually would.
Today I am not near the sun worshiper that I used to be but I can not stay inside. I believe in Vitamin D!!!
Enjoy your trip and I hope I've answered your question. Give me your personal email on my email here and I'll get you that great boxer/baby video. It's an attachment. Anyone else that wants it can do the same. And you are so right, it is very boxeress with the pawing and the yawn (like that word; boxeress??).
Joined: Jan 2009
Scouty
Thanks for all the info My email is sheri22@yahoo.com I liked your info on the other thread I was going to be really depressed if I could not play in my flowers I hope I get to meet younnext year in Florida boxers are my soft spot
Sheri22
Joined: Apr 2004
got a reject
I tried but got a reject from the email above..........
Joined: Mar 2009
Video and Vit. D
Scouty, I'd love to see the video! Laughter is good for what ails you!
Speaking of Vitamin D, a new study shows Vit. D in the right amounts can cut your colon cancer risk / recurrence risk by 39%. Of course, we have to use common sense, but whatever helps!
tavegia@bellsouth.net
Diane
Joined: Feb 2009
Dog to Baby hi-5
Yes, I have seen that video. Darling. I think highly of dogs, but live in a townhome with no yard or any real place where puppy could run freel I do have two cats (don't tell your dog that a cat lady wrote to you!). Should my husband and I suddenly come into a fortune we will buy a place with a big yard and get at least two dogs. Until the fortune fairy arrives the kitty babies will have our full attention.
Give the cutie pup a hug for me.
Krystle singer
Joined: Jan 2009
Hi, Sheri 22.
Just curious... where in Ohio? I'm originally born in Cleveland in '59 and lived in Bay village until I moved to Texas in '82 and have been here ever since.
Diagnosed: 12/08, ascending colon
Stage 3c, 4 out of 25 Lymph nodes
currently on: Folfox, 5FU & Lucevorin (sp?)
This is a great site. Stay in touch.
Joined: Jun 2007
When do you start?
Hello all,
I used to come here all the time when first Dx'd. This site really helped me with people answering my questions about chemo and what to expect. I would then try and help others with questions.
Dx'd Nov 2006
Stage III
2/28 Lymph Node
Surgery Feb 2007 Ascending colon
Chemo May - Oct 2007
I was actually told No Evidence of Diease in Dec. of 07 (when I had a colonosopy after chemo.
BUT...are you NED after your surgery to remove the tumor or after chemo? I'm either NED 1 year or 2 years.
Claudia
Rensselaer , In (North West Indiana)
Joined: Apr 2004
Great question
I did not follow any of the conventional paths to my NEDness so I talked it over with my oncologist to define my date.
Joined: Jan 2009
scouty
I love your word..."NEDness"!
Joined: Apr 2003
IMHO
In my humble opinion...
I count my NED time from the time I finished chemo and had follow-up testing which showed no evidence of disease.
Then, according to custom, I promptly went out, ordered a retro bowling shirt and had the name "Ned" embroidered on it!
Joined: Mar 2003
Seriously?
CLAUDIA!!!!!!!!! WE ARE PRACTICALLY NEIGHBORS!!!!!!!!!!! I live in Lowell, IN, straight up I-65 from you! lol
We should meet for lunch sometime!
Stacy
Joined: May 2007
I'm Here!
Dx Stg 4 August'04 (4.5 years!)
Currently NED... 2 years.
I'm in Vancouver BC
Rob
Joined: May 2008
My story
OK here is the story
05/2008 DX Stage IV Rectal Cancer, mets to liver and lung, inoperable
11/2008 Finish 12 Folfox+Avastin tumors shrunk 50%, but not good enough
01/12/09 Rectal Surgery, with permanent colostomy
02/19/09 SIRT aborted, due to tumor growing
03/03/09 Start Folfiri+Avastin
What helps me most? Exercise, 1 hour walking, 2 hours chi gong everyday. Diet, all vegetarian and lot of juice (thank Emily). Positive attitude, and of course this board.
Nothern Virginia
Peter
Joined: Jul 2009
Hi Peter
Hi Peter, it sounds like you have had a difficult time, but you are hanging in there. You are working out more than I do. I still feel a great deal of fatigue. Great job on your positive attitude.
Joined: Feb 2009
North Carolina
My name is Jackie I live in Shelby North Carolina.
Dx'd 10-25-2004
no stage rectal cancer
chemo & radiation 6 weeks 11-25-2004
surgery 1-31-2005, temporary ileostomy and removed mass
NED 1-31-2005
chemo 3 weeks
surgery 12-19-2005, polpys removed and reversal
surgery 5-19-2006, permanent ileostomy
waiting for more surgery but biopsy are cancer free
Joined: Jun 2008
History
The following has been my journey so far:
Diagnosed 7/2004 Stage 2, no lymph node involvement
Had surgery; located in colon section near appendix.
No chemo recommended at that time.
3/2008 Recurrence to liver; surgery and 4 treatments
Folfox before surgery and 8 treatments after. Ended
chemo Dec. 2008; had one scan and I am NED, CEA 1.4;
onc says anything below 2 is normal for me; next
scan this coming Monday and hope I am still ok.
Would like to go to my 50th high school reunion
in Alabama with a happy smile on my face.
Barbara
Joined: Dec 2008
History
I live in Gardner Kansas.
I was DX'd 12/1/08 with colorectal cancer after a colonoscopy. I went to the DR thinking I had a hemmoroid - she found a 2cm mass and ordered the colonoscopy for the following Monday. (This was the day before Thanksgiving and I was having my whole family over....) After the PET scan they found 2 small mets to the liver.
I just had my APR surgery with colostomy March 10 at St Joseph's Hospital in KC MO. I am having my liver recection April 9 at MD Anderson in Houston. Then I will do a mop up chemo for 4 months.
You all have inspired me that even though I have Stage IV with mets, I can still be fighting strong many many years from now!!
Joined: Apr 2003
2 4 1... 411
Here's the 411 on us two...
SpongeBob:
Diagnosed Stage 3 CRC (thanks to HNPCC/Lynch Syndrome) in July of 2001 - age 36
Right hemicolectomy, removed 26"
Treated weekly with 5-FU/Lukovorin for 6 months
Currently NED for - GOSH! - 7 years
Married (to usakat) in May 2007
Currently living in Charleston, SC but moving to Key West, FL this summer
usakat:
Diagnosed Stage 3 CRC (also thanks to HNPCC/Lynch Syndrome) on 5/17/2006 - age 42
Right hemicolectomy, removed 19"
Treated w/ Oxaliplatin/Xeloda/Lukovorin for 6 months
Currently NED for 2 years
Married (to SpongeBob) in May 2007
Currently living in Charleston, SC but moving to Key West, FL this summer
Joined: Dec 2001
Mayor Riley
I totally forgot y'all were living in my uncle's town!
:-)
peace, emily
Joined: Apr 2003
NO!
Your uncle is Mayor Joe?
Joined: Dec 2001
Darn Tootin'
I know we've had this conversation before. At least I thought we had.....I am sure I told you this when we found out you were moving to Charleston. :-) I had just forgotten that's where you're stationed.
My mother is from SC and most of my family lives down there. (we have a looooong history in that state from before the Revolutionary War. And don't even get me started on the War of Northern Aggression....) HA!
so yeah y'all, that's my Uncle Joe.
peace, emily
Joined: Apr 2003
SAT NEXT TO HIM ON A RECENT FLIGHT
Sat by him on a recent flight to CA (it was the Charleston to Atlanta leg) - I guess I totally forgot about that chat - would have made for interesting small talk! I worked with him a bit when he was on the Pew Oceans Commission.
Small world
Joined: Dec 2001
Dang
Wish we had reconnected on this before cuz he would have enjoyed the small world aspect. He's got such a great sense of humor.
Oh well, maybe you'll bump into him again some time before you move to FL.
peace, emily
Joined: Jan 2010
Charleston!
I'm from there but live in Columbia now. I still miss it and go home every chance I get!
C Dixon
Joined: Oct 2004
Charleston!
My daughter still lives in the area, so I go visit as often as possible! Funny, I knew someone that used to go to the same church as we did and her name was Catherine Dixon!
mary
Joined: Jan 2010
What church?
My sister in law is Katherine Dixon. Haha.
Joined: Oct 2004
Grace Lutheran
and that's totally how she spells her name!
mary
Joined: Mar 2009
Diane from Georgia
I'm Diane from Villa Rica, Georgia
Dx'd on Jan. 2nd, 2009, just days after my 58th birthday. Had resection on Jan. 7th. Spent 42 hours in the hospital before discharge. Surgeon removed 18" of colon via lap surgery. I was put on a regular diet less than 18 hours after surgery! Port installed a few weeks later.
Stage III
5 out of 17 lymph nodes showed 'a few cancer cells' (surgeons words) No sign of cancer in liver biopsy.
No mets
Currently having chemo. 3 out of 12 completed as of April 2, 2009. . I'm getting the usual triple cocktail and am wearing the fanny pack home for 46 hours. Fluorouracil Levoleucovorin Oxaliplatin
I am exercising, eating a Mediterranean Diet, taking vitamins and praying.
Joined: Feb 2009
Carletta from Georgia
I live in Hampton, Ga, which is about 30-35 miles south of downtown Atlanta. It is the town where Atlanta Motor Speedway is located. I grew up in Chicago. I loved Chicago, but I like it better here, the weather is much nicer.
I went in for routine colonoscopy in Sept 2007. Having no symptoms. Found polyp, did biopsy. It was cancer. They removed 8 inches of colon and tested 101 lymph nodes. They were all clear. Told me I was cancer free, didn't need chemo.
Went back in Nov 2008 for routine follow up colonoscopy, and as Gomer Pyle used to say SURPRISE! SURPRISE! Cancer was on colon wall this time. In the DRS. language they say, Moderately differentiated colonic adenocarcinoma with following features:
Tumor Size:1.6x 1.5x0.2 CM
Tumor invades into the Submucosa, but not the muscular propria.
All margins of resection are negative for carcinoma
Lymphatic/Vascular invasion is present
Metastatic Carcinoma is identified in one of sixty-one lymph nodes
CEA levels after surgery were 0.5
Had surgery on Jan. 7,2009. Removed 24 inches this time, the surgeon says the less colon you have, the less chance of colon cancer. I guess that's one way of looking at it. Tested 61 lymph nodes and 1 tested positive. So currently I am on 12 treatments of Folfox. I have completed 3 and go for #4 on Monday. I would like to think that I have no cancer at this time, Hopefully they got it all out, but with that 1 lymph node, who knows. Maybe it was just starting in that one and when they took it out, that was that. Either way, I am going to do my best to beat this cancer and get back to my life withot Drs. all the time. A person just doesn't realize what a blesing good health is until you don't have it anymore. I don't think I will ever take it for granted again.
Carletta
Joined: Nov 2008
Diane I am just a few yards further down the road
I am on treatment 9 and relate to your story. Good luck, I can see the end of chemo coming,(I hope) and want you to know that number 9,10 , 11, and 12 happens. Hang in there and good luck.
Joined: Jan 2009
Hi everybody
Had emergency surgery Aug. 04, so going on 5 years now. Had large tumor that went through colon wall and engulfed overy, 3 lymph nodes positive. Had colostomy reversed after about a year, chemo, port removed after 3 years. Going to college at age 50 now. Very grateful for time gained, was at the point of dying, intestines completely blocked and ready to rupture when I went to ER 5 yrs ago. Now keeping an eye on liver lesion, very small 1/2 cm, going to have it rescanned in June and colonoscopy done. Hoping shows no growth or activity, just keepin on keepin on! If I had not returned to school would never have touched a computer and never found this site, wish it had been available to me during my surgeries and treatments, but thankful for it now. I live outside Zanesville Ohio, a small rural area. Have found this site very helpful and uplifting, especially when testing times roll around. There are some very upbeat and positive people on this forum, who try to help others, no matter what bad times they may be going through themselves. I appreciate you all.
Pam
Joined: Oct 2007
Roll Call
DX 8/07
stage IV, mets to liver and celiac nodes
5 surgeries
liver radiation
continuous chemo w/progression (I've had it all)
still in treatment
I live in NW Ohio
Kimby
Joined: Jan 2009
Hey, Kimby.
Where in NW Ohio? If you don't mind me asking.
Joined: Oct 2007
NW Ohio
I'm 10 miles from the Michigan border and 30 miles from the Indiana border outside a small town. Very rural and flat, but close to family and good people. Not pretty or fancy, but nice.
Where do you live?
Kimby
Joined: Jan 2009
I was born many years ago in Cleveland, Ohio
I was born many years ago in Cleveland, Ohio but as youngsters lived in Strongsvilee then parents moved us to Bay Village, Ohio. I've lived in Texas for quite some time now and it turns out one of the ONC's gew up in the Cleveland area. Rural areas are quite peaceful and I enjoy them.
Joined: Apr 2003
CLEVELAND ROCKS
So, jenben, you lived in "the Village"? I grew up in North Olmsted!
Joined: Jan 2009
Wow! Someone...
knows the area! When we were kids my parents used to take us to Berea Beach...it was nice and clean back in the day. When I was in college down here in Texas one of my professors attended Baldwin-Wallace college. Yes, I know the area...North Olmsted, Olmsted falls, Lakewood, Berea, Broookpark, Middleburg Heights, and even Parma...when we were kids the joke was "Parma Polaks"...not that we really cared what nationality any one was...we were just kids saying stupid stuff! I can remember riding the Rapid Transit downtown...it was safe back when I was young...I don't know now. Things are really tough up north...so many businesses went under.
Joined: Oct 2008
Another Ohio gal!
I was born in Tuscarawas County. Graduated from New Philadelphia High School. We were the "Fighting Quakers!" I moved after high school, but my Mom and all 4 sisters are still there! We were in the Amish country, but were "English".
Vicki
Joined: Jan 2009
Loved the Amish country.
I really love their "way of life" especially looking back as I got older.
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