CSN Login
Members Online: 6

You are here

Semi-Colon Roll Call

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

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..........

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I live in Southern California. Dx stage III rectal ca 12/2004. PET scan found unrelated breast cancer...could someone PLEASE remove me from the list I managed to get on twice!!!!!

Last treatment was rads for breast cancer 7/2006. NED on both ever since. Actually, NERD on rectal (after removal of rectum and sig colon, J-pouch fashioned from descending colon) 5/2005.

Hugs, Kathi

P.S. Hans drove today (without my knowlege...sigh...scared the PEE out of me...demanded the car keys, felt like I was talking to a kid!!!!). But, he is doing better...must be all those grand thoughts from you all!!!

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I am on that list also. Back in 1994 I was DX'd stage 1 cervical cancer, and when they were doing the surgical work-up, discovered uterine cancer, also stage 1. I was told they were two primaries, coincidence on showing up at the same time. Surgery for both, no rads or chemo. Fine after about 6 weeks.

When the colon cancer showed up now, the first thought was it somehow stemmed from the uterine cancer. Nope - my 3rd primary. I want off the list also!

Vicki

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm glad Hans is improving, but I'm sorry he scared you by driving. Yikes! Apparently that turned out okay, but I know it worried you.

*hugs*
Gail

tkd3g
Posts: 768
Joined: Aug 2004

Hi all. Wow, it's been a long time. This site is like an old friend, always there when you need them.

Stage 3 Rectal CA.
Diagnosed March 04
6 weeks Chemoradiation ( 5Fu )
Surgery - 15 inches of colon, 95% of rectum
Follow up Chemo - Oxy until I decided the chemo would kill me.( 3 out of 12 treatments) Switched back to 5FU to finish.
Getting ready to do the Happy Naked Dance for the 5th time in June ( NED 4.10years )

Barb :)

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

So wonderful to hear from you girlfriend. Hope you are getting the pool ready for the thongs and speedos!!!

Much love to you,

Lisa P.

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Hey there! How the heck are you, Elaine?

Too long!

fmsamos's picture
fmsamos
Posts: 35
Joined: Jun 2007

Hi there, I see you are happy & healthy- Cool~ me too~ Haven't been here in days, well year but I remember ya'll and just stopping by to say Life is good and well we are Survivors! Hugs from Northern California! Fmsamos aka Slammer (Amy)

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

Gee Amy I can see why lisa ,em and barb never,never wash their dogs.lol Ron.

fmsamos's picture
fmsamos
Posts: 35
Joined: Jun 2007

What about my cute/ugly dog. J/K Nice to meet you and hope all is well in yur world, BTW~ Nice fish! Live strong buddy........ Sincerley Amy

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hey you!

Great photo with your Newfie!

Oh gosh, thongs and speedos seems to trigger a desire to recite poetry for some reason..... (I truly hope that poem is erased from the archives).

So good to see your beautiful face!

Hope all is well with the girls.

peace, emily

crazylady
Posts: 544
Joined: Jun 2004

Hi Everyone,

Dxed 3/04 stage 2 rectal cancer at age 46. Had chemo/radiation then surgery 6/04 resulting in permanent colostomy, then 6 months of mop up chemo.
Mets to right lung 10/05. Since then have had surgery on right and left lung and numerous rounds of chemo. I've actually lost count. Currently have mets in both lungs and am on xeloda and avastin. Scans last month showed that everything was stable.

I live in the San Fernando Valley in Southern California.

Take care and hope you're all having a great weekend!
Jamie

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Durn, serious hugs to you!!!

I see you are still giving the beast the what for!!! Keep on keeping one and thanks so much for checking in.

Love, Lisa P.

fmsamos's picture
fmsamos
Posts: 35
Joined: Jun 2007

Hi Scouty, this is Amy aka Slammer- I too was Dx in 03-04 w/ stage IV and am proud to say still here, and well Life goes on! My bowel recection, then 6 momths Chemo. re-occurance, ovarian cancer scare- then more chemo in 05~ 6 months more of that horrible stuff, yet beleive me,It was worth it! I am 48 and go in May for my annual check up and CT scan with my wonderful Oncologist who saved my life(well me too) but I have whipped this! So I remember you and others ie: Sponge Bob, Stacy and more by name~ so Greetings and yep, We are awesome! Cannot wait for my 2nd Relay for Life walk in June in my area...Sincerely Amy in California
BTW, yes "NED" for me too!!! Hugs to all of you~~

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Where the heck you been, girl!?!?!?!

I swear it's like a reunion!

fmsamos's picture
fmsamos
Posts: 35
Joined: Jun 2007

Been here in my house, my town , my job! Doing fine except the divorce, (that happens after cancer I think) but am finally very happy. Have a great boyfriend in my life and realized life is too short to live w/ regrets so I do all I can, work, play, party, in love, and all that. Lost my sweet mom to pancratic cancer 2 yrs ago- we didn't have a clue, but that's how that one goes ya know~ scary... you two look great in that photo~ Kudos Sponge Bob. Nice to hear from you- hope you are well. Slammer tee-hee..

fmsamos's picture
fmsamos
Posts: 35
Joined: Jun 2007

Hi again~ Slammer aka me Famous Amos~ well I had to re up my account but have actually been a member since 03-04 because I used this site so much and loved, cherished, took, the advice, support and just general knowledge I gathered by being here. I will stay up on this again I promise because I gained so much from this site- Love ya'll , Sincerely Amy- and those still dealing with this or any cancer or a loved one- I am sorry~ God be with you and Live Strong!

morningstar4
Posts: 15
Joined: Jan 2008

Hi everyone I don't post very often but I'm still in here. I'm from Plainwell Michigan located in the southwest part. I just celebrated my 62nd birthday a couple of weeks ago and I'm looking forward to many more.I was dx July 06 tumor was 4 in. and ulcerated. Wore infusion pump with 5fu and rads for 30 treatments. Jan. 07 had 7hr. surgery hysterectomy,resection,and temp. illiostomy.Pathology neg.Stage 2. May 07kidney failure from so many contrast dye injections for cts scans and colon preps. July 07 illiostomy take down. Sept 07 port removed. Lots of bumps in the road but I'm still NED!!!! God Bless Everyone Judy

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Amy you sound a thousand times better than the last time we chatted on here (chemo brain prevents me from remembering when that was!!)

How good for you!!! Great to hear from you. This thread has been so much fun hearing from so many Old Timers!!!!

Many hugs and why don't you and boyfriend join us at CP7 in Key West!!!!

Lisa P.

fmsamos's picture
fmsamos
Posts: 35
Joined: Jun 2007

Yes Thank you~ It is an awesome site and I hold everyone deep in my heart, those who have had and those who have to deal with this, and families etc. Keep the Faith-- sincerely Famous Amos aka Slammer

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

Dx Feb 25, 2004. Stage IV colon cancer. Age 46
Had yearly checkups by my PCP who was an oncologist too (fancy that) and he missed it.
Did 6 months FOLFOX/Avastin, then in Sept 04 minor operation on colon, 60+% of liver removed, hepatic pump installed, gallbladder removed along with a few lymph nodes.
Around late Nov or early Dec 04, back in for bowel obstruction fix.
More chemo, FUDR(?), CPT11, 5FU (gotta love that name) for 6 - 9 months or so.
Stared Erbitux CPT11 in about Oct 05, 1st lung operation on right lung around March of 06.
More Erbitux CPT11, second lung operation, both lungs, April or May of 07.
RFA in Sept 07 for one lung met.
More Erbitux CPT11 up until June of 08, last lung operation on right side in July 08.
Guess what? More Erbitux CPT11, still on that. Just went to Erbitux around January 09. I am maxed out on lung operations. Too much scar tissue.
Still have some stuff going on but things look stable.
Not NED at any point yet...
Live in the area of the foothills of the Catskill Mountains, NY.

shoppergal
Posts: 118
Joined: Mar 2009

phillieg,where in the catskills do you live. My family has been going there for the summers for about 55 yrs. I have quite a few good memories from my summers there, as a matter of fact, I met my best friend there when I was 11 yrs old. As my sister and I got older my parents always said they would stop going there, then I had my son and then he spent summers there. Now it's just my parents and they still go after all these years! It's changed alot but they still enjoy their summers there.

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

I live in lower O.C. The Appalachian Trail runs through my town.
We've been up here almost 6 years. I wasn't even in the house a
year before I was DX :-(
Before that we lived in Bergen County NJ, right by the NY State border. But

NOW

;-)

Sunriver's picture
Sunriver
Posts: 50
Joined: Sep 2006

Dx'd stage 2 8/06 in Bend, Oregon. Surgery, 4 rounds of chemo (out of 12). NED since!

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

I love to kayak too






I like the morning the best

shoppergal
Posts: 118
Joined: Mar 2009

Great shots, I agree mornings are the best,just before the sun rises. My family goes up near Monticello, but we've gone up to Parksville when I was really young. It's really beautiful but I don't know if I could live in the country, I'm so used to the hustle and bustle of NY. But getting out of the city for vacations are always nice!

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

I'm a little less than 50 miles from the city. I go to Sloan for all my work. I love the open space up here and it's really not that open. We do have to watch out for deer all the time though.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I was born and raised in New York, a Long Island girl from Lynbrook, my parents were from Brooklyn, I miss it, but not the expenses and traffic, I still have family there that I may be visiting if I can get myself through these treatments without ending up in the hospital again..sheesh!

I was dx'd in Jan '09 Stage 4 Colon cancer with a tumor in the liver.
Receiving Folfori with Avastin treatment
Just had a colostomy due to a perforation in the abdomen, could be reveresed in 6 months.
Right now chemo is delayed until I heal from the surgery.

amcp
Posts: 251
Joined: Jan 2009

My husband after some bleeding had first colonoscopy DX rectal/colon cancer 8/24/06
Surgery and permanent colostomy 9/15/06
Mets to both sides of liver
Chemo started 11/1/06 had every known treatment(chemo) until 12/9/08
Stoma repair 7/07
Sent to Vanderbilt for clinical trial...by oncologist ...he had nothing left to try 12/29/08
12/29/09 Appt with Dr at Vandy ...okayed for Phase 1 clinical trial sent home till start up
01/09 Called by Dr said no clinical trial ...surgery of liver possible...
01/13/09 Dr appt with Liver oncologist surgeon...told could have liver resection but had place in right lung that had to be taken care of first
01/15/09 Dr appt with Lung oncologist surgeon...told could do lung resection but had to quit smoking ...had smoked for 45 years...stopped "cold turkey" that night
02/10/09 Cancer nodule removed from right lung and 4% of lung
4/03/09 Embolization to right liver scheduled but cancelled due to rapid growth of liver tumor/leasion....CEA gone up from 1630.0 on 1/13/09 to 16,648.4 on 3/27/09
Surgery for liver resection sch. for 4/29/09 ...giving husband some time to get strength back from lung surgery...Dr said walking a fine line between giving Frank time to get stronger and hope that cancer on liver does not get so big unable to remove it all
Fighting up hill battle...
Married 40 years to my high school sweetheart...met him when I was a freshman in high school and he was a Senior.
I need him so and love him so very much. We live near Maryville TN which is 14 miles from Knoxville Tennessee

Hugs,
Anna

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

My husband was diagnosed 8/07 Stage 4 Colon Cancer with multiple mets to his liver and both lungs. Colon resection surgery, then 6 months aggressive chemo, right now on 3 week break, just had pet scan, awaiting results, starts maintenance chemo next week. - Bayville, NJ

jenalynet's picture
jenalynet
Posts: 363
Joined: Nov 2005

Hi,
I live in Banks, Oregon (11 years now) but was born and raised in PA. I was diagnosed Oct. 2005 Stage 4 with liver mets. I am currently on Folfri because cancer is back with a frenzy. I am still fighting the fight and will do so unless quality of life goes downhill. I am looking forward to going to the egg hunt with my grandsons this Saturday..life is good, God is good. Hugs, Audrey.

fmsamos's picture
fmsamos
Posts: 35
Joined: Jun 2007

Greetings Audrey~~Happy Easter and have a great time w/ grand kids...So positive and upbeat you are. Don't know you but somehow we all know each other here huh? God bless! Take Care, Amy in No. Cali~

Kathi E-H
Posts: 1
Joined: Apr 2010

Hi, Jenalynet. I live in Hillsboro (3 miles down sunset Hwy from you) and am a colon cancer survivor. I hear about lots of same in Oregon but have never found actual contacts! What a great site!! How are you doing? I am going in for my first CAT scan after reconnect last fall. Maybe we can meet for a cuppa coffee?

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Here's the other topic, FAPMom... so plenty of reading material :)

Cheryl

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Live in Plymouth, Mn, just outside of Mpls. Along with Emily waiting for spring to actually come- there have been a few hints and the snow is gone.

Diagnosed with stage 2 rectal cancer April 2005. Treated with chemo/radiation and then local excision in August. Recurrance in April 2006 (found out the day after the GetYourRearinGear walk). Had APR with permanent colostomy. Had 9 cycles of Folfox. Ned since. Just had CEA drawn last week = 0.6 (yea).

Playing tennis weekly, working yet, and enjoying every day of life.

Cheers to all, Dick

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Great idea, Scouty..over a hundred posts strong. This site is a lifesaver for so many of us.

Me: diagnosed on BASELINE colonoscopy in Nov '03. 2 small polyps, no symptoms.
Hemicolectomy, sigmoid colon, 1 node, moderately aggressive, stage IIIb.
six months of 5FU and leuco, completed July '04.
NED on follow-up. My onc counts from completion of chemo.
I am approaching 5 year survival!!!
Born and raised in Pittsburgh, PA. Live outside of Boston, MA for 30 plus years.
Life is good.
All the best, Judy

ruggersocks's picture
ruggersocks
Posts: 78
Joined: Aug 2006

Just read that article about anal cancer on CNN and it always brings back fear to read the survival rate.

Diagnosed with rectal cancer 5/06, rectal resection, radiation/chemo combo, chemo again. finished 1/07

1 met to lung and 1 met to liver found in July 2007

Chemo again, ablation of met to liver, lung surgery, chemo. finished June 2008.

Now having scans every 3 months. Last scan in January showed nothing!

Next scan is on Monday, April 13th. Will find out results on the 15th. Prayers are always welcome!

Hugs,
Cheryl

serrana
Posts: 163
Joined: Apr 2009

Hi
When you finished chemo in 08 were your scans clear? I am looking at being on "maintenance chemo" and gathering stories about the circumstances under which folks stopped having chemo.Where are you having your treatment ( monitoring).
Best prayers for your scan results next week. I have mine then too. Stay in touch
Serrana

dmdwins
Posts: 453
Joined: Aug 2008

Hi Cheryl

I see your scan is coming up tomorrow. We all know how those days are. I am sending you positive thought and prayers!!

Dawn

Owen9
Posts: 3
Joined: Apr 2008

Dx 2/08 IIIC with 7 of 11 nodes positive.

Sigmoid resection then 12 biweekly treatments of FOLFOX6.

CT unenhanced/enhanced last month - nothing lit up.

Review colonoscopy two weeks ago - clean, told to come back in three years.

Yaaaahoooo!!!

I hope everyone beats the beast...

Blog of the whole journey is at: http://coloncancerisapain.blogspot.com/
if you want the details.

Owen9

Anonymous user (not verified)

This comment has been removed by the Moderator

ruggersocks's picture
ruggersocks
Posts: 78
Joined: Aug 2006

I have not had any chemo, maintainence or otherwise, since June/July 2008. My 3 month scans have been in Sept 2008 and Jan 2009...both have been clean.

How are you doing?

Praying for a clean scan for you too!

hugs,
Cheryl

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

I live in Waimanalo, HI, on the east coast of Oahu near Bellows AFB. Grew up in Lima, Ohio.
11/2005 Colonoscopy diagnosed with rectal cancer, stage IIa, at age 63.
12/2005 Surgery: LAR, NED since then.
1-2/2006 Radiation, 5FU+leucovorin (just 10 injections).

Greg

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Greg,
We're right over the hill in Kailua. We love going to Bellows. Good to see the sun out finally.
Aloha,
Kathleen

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

Hi Kathleen,

I knew Kailua was close. I'm a few blocks from Bellows, on Hinalea. I used to run along Bellows beach every morning until the MPs decided to prevent civilians from walking over there from Sherwood forest.

Greg

catherine58's picture
catherine58
Posts: 92
Joined: Feb 2007

Just checked in ... it's been a while and I don't recognise a lot of faces although Scouty and Emily were among those who responded to my early posts - thank you so much, I took a lot of your advice on board .. This site was such a huge support to me after I was diagnosed (in February 2007) with a football-sized tumour on my right colon. Had a right hemicolectomy (sp?), three lymph nodes affected so on to nine rounds of Folfox, which I finished in August 2007. NED ever since and feeling better than I have for years. No lingering side effects whatsoever from chemo.

Have recently embarked on genetic testing: my tumour showed "microsatellite instability" which I gather means there is a 90% chance that I have HNPCC, although I'm still waiting for definitive results from the blood test. Bad news is that there is a 50% chance that my children have the same gene and that I am likely to develop other cancers, good news (I gather) is that the tumours do not tend to be particularly aggressive and are less likely to metastisize (sp?? not a word I use frequently, thank goodness!) than non-genetic forms.

Very best wishes to my fellow semi colons!

Catherine

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I think I must have come onboard much later than you, so I missed seeing any of your posts. WOW... a "football-size" tumour?? That's incredible!! Surely you must have had some sort of signs or discomfort with something that big? That would be like carrying a baby around... then again, I have heard of gals who gave birth and had absolutely no idea they were preggers. But that is so darn amazing to be walking around with a tumour that size. No wonder you are feeling so much better nowadays!!

That is fabulous news that you are still NED. Oh sure, we can look at the statistics and worry ourselves sick that we are going to be the ones that are in the 50% demographic or the 60%, 70%, 90%, etc. On the other hand, someone has to be in the other percentage that they don't get it... so why not us?? :)

Anywho... so glad to make your acquaintance... and I'm in awe of the tumour they found and took out for you. That is amazing and wonderful!!

Huggggs,

Cheryl

catherine58's picture
catherine58
Posts: 92
Joined: Feb 2007

Nice to hear from you, Cheryl.

Well the surgeon said it was the size of a "small" football (and he would have been referring to a soccer ball, not an American football - maybe that's a little less impressive?). Still, it was a pretty big tumour ... I remember the surgeon telling me in the recovery room that I was going to have a much flatter stomach which added to the general euphoria I felt in the first hours after surgery (I was pumped full of heroin at the time!). He was right - I'll never have a washboard stomach but it bulges a lot less now (in fact I'm generally much happier with my body now than I was before diagnosis - just happy to be alive, I suppose!).

The genetic counsellor later told me that HNPCC tumours are often alarmingly large but, as I mentioned above, less likely to spread than other non-genetic cancers ...

I just read your story - sorry you're still fighting the beast but you certainly have the right spirit to beat it!

Courage!

Catherine

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Both balls sound awfully large to me! Heck, if you had said the size of a baseball that is still large! I can only imagine how wonderful you felt, once they found it, to get it out of there! And that is great news that these particular type of tumours are less likely to spread. Phew!

Yep... still fighting the beast although, am in a "wait and see" period right now while we wait and see just what these nodules in the lungs are planning on doing. I tend to like to think that we are going to be "waiting and seeing" an awfully long time as the nodules all decide that they aren't cancer ;)

Hehehe... so, "across the pond" am I right to assume you are in Britain? Or are you across the other pond and in Australia? I figure, we have two ponds that are across from us. I'm here in Canada, so that would make it across the pond and up one country LOL!!

Hugggggs,

Cheryl

pamness
Posts: 513
Joined: Nov 2007

The stories are so great and hopefully very helpful to the newbie lurkers on the board.

I was diagnosed in January 2007 during a routine colonoscopy, 1 polyp, malignant - 2 lymph nodes positive (unexpected, scans were clean). The usual - colonectomy - 7 inches more or less, lymph nodes 2 out of 21. Followed by folfox and chemo/radiation. Currently ned since August 2007. Have had blips along the way, odd CT scans and my cea seems to be normal at 4.2 - at this point in time CT scans are good and my cea has been at 4.2 for quite some time with 6 normal scans.

I guess everything is relative. Had a colonoscopy last week - all clear.

Pam

Annabelle41415's picture
Annabelle41415
Posts: 6241
Joined: Feb 2009

I found out December 1, 2008 that I had rectal cancer. I started radiation/chemo on January 7, 2009 for six weeks. On March 26, 2009 I had surgery to remove my rectum and have a temporary ileostomy which should be reversed sometime later this year. Next month I should be starting 4 months of chemo. The doctor told my husband that my surgery went better than expected (4-6 hour surgery and mine lasted 4 1/2 so I did well). I was in the hospital for 5 days which was normal with my surgery.

I am slowly getting back to normal. I'm still in pain, especially in the rectal area since they took the rectum out and made a new one out of the colon (isn't it surprising what they can do with other parts of your body). But the incision is so low in the rectum that when I sit, it puts pressure on my bottom.

I live 45 minutes west of Detroit and had my surgery at one of the best hospital's around and my surgeon was absolutely wonderful and my radiation oncologist is just so great of a doctor.

My pathology report came out clean with no lymp node involvement and the tumor shrunk from radiation/chemo from 25 mm to 3 mm so that was a huge decrease.

I am improving everyday and thank God he is in my life to get me through this. Kim

Pages

Subscribe to Comments for "Semi-Colon Roll Call"