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CSN Outage 7/29/21

CSN will be down briefly for maintenance 7/29/2021, starting at 10pm EST. We apologize for the inconvenience. 

Roll Call ****ALL****

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I think it has been awhile since we had one of these, I welcome all newbies, and those thay have been around to give history and an update on where we are in our journey.  Lurkers plesae let us know how you are doing.  


I  will start


I was diagnosed November 2008  Stage IV

Colorectal Surgery took out tumour, about 7 lymp nodes had cancer. 

Started Folfox/Avastin Janaury for 3 months

liver resction April 2009  60% of liver removed

Folfox for another 3 months

NED until January 2012 then CEA started going up, watched keep doubling to the 40ss

On Xeloda since June 2012.  CEA down about 25 then started to climb back up

Avastin added in April 2013, still climbing

June 2013 stopped Xeloda, CT July 2013, and waiting results which I will get on the 31st.

Off on and on through the last 3 years there has been a a light up on the pet but it comes a goes, they are not sure what it was/is

I can't get a pet until January 204 because of insurance. 

VA hospital told me that they never would have put me on Xeloda until there was evidence, my private ONC says why let it go that far, lets get to the activity now. 

I may start a new chemo next week, a decision, that I have to make.  VA may send me to Standard for a second opinion. 

I will up date you all after I find out more.  


Love to hear from you all


dmj101's picture
Posts: 527
Joined: Nov 2011

I was Dx with Rectal Cancer stage 2B in December 2010, Followed by neo-adjuvant treatment of 5FU and Radiation for 30 day.

April 2011 had Abdominal Pertonial Resection - Colonectomy resulting in Colostomy (Rectum and Anus removed)

July 2011-November 2011 FolFox resultng resulting in Nuropathy of hand and feet.

Feb 2012 went for Thryroid Cancer(2007) followup and found Metastatic Colon Cancer appeared in my lungs.

May - Oct 2012 FolFiri treatment with Vectibix - 

 Nov 2012 repaired back end 

Remained on Vectibix from Nov 2012-July 2013

Began Xeloda in March 2013 when we found growth in Lungs had progressed.

Both Lobes of my lungs have mets the disease is classified as minimal.

July 2013 began Avastin along with Xeloda - both every 3 weeks.

Minimal dosage of Xeloda as hand and foot syndrome occurring.

June 2013 I turned 50.. ... feeling good and looking good Hair has grown back from FolFiri and my eyelashes are luscious from Vectibix.

I have been very lucky.. I have worked thru all of the above treatments.. My job allows me to work from home.

Stay Well Everyone!!!!!



wolfen's picture
Posts: 1329
Joined: Apr 2009

I am part of the resident huggers, supporters, and shoulders to cry on. I found the board in 2008 and joined in 2009 after returning home from helping my daughter, Johnnybegood, who was diagnosed in 2008. I will let her post her bio.

I am still trying to be supportive to all of you, "oldies" & "newbies", but have had a bit of difficulty lately. Ron, my husband of 40+ years and Johnnybegood's stepdad, was diagnosed Oct. 2012 with H&N cancer w/lymph node involvement and a secondary of lung cancer. He fought bravely through many complications and lost his battle on May 5, 2013.

I may not always join in a thread, but know I am still rooting for each and every one of you.


Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Such a great attitude!   Way to go! 

annalexandria's picture
Posts: 2573
Joined: Oct 2011

mastered advanced-level 'gator wrestling as a toddler,

developed unhealthy fear of clowns at age 7 due to that circus incident,

scarred for life at age 12 when I looked under my bed only to see...



You mean my cancer journey.


In short, dx'ed in '09 with weird cc tumor type, super aggressive and fast-growing.

Have had five surgeries, sliced open from stem to stern (so to speak), lots of tumor bits removed from here and there.

Luckily, despite a lot of spread, so far no sighting of anything in other major organs.

Did a couple of chemos along the way, failed them both (bringing back unpleasant memories of 9th grade).

Thanks to my super-duper surgeons (whose fancy, waterfront houses I do not begrudge in the slightest), I made it to NED in 2011.  Last PET was in February, and still clear.  Will find out if I am still a lucky duck next month.


KathiM's picture
Posts: 8077
Joined: Aug 2005

Age 49: Dx November 2004 with stage III rectal cancer:

2 inch tumor in first rectal fold.  Pre-surgery (neo-adjuvant) chemotherapy (Cisplatin and 5FU pump) and radiation.  

Surgery to remove rectum, sigmoid colon, and total hysterectomy (I figured as long as they were there...and I wasn't using that stuff anymore...and my mom had uterine cancer, so it was a no-brainer).  J-Pouch procedure to fashion a 'new' rectum out of descending colon, so I could be spared an external appliance.


Dx January, 2005 with stage II breast cancer (found during PET scan for the rectal).  Typical treatment: lumpectomy, chemotherapy with ACT, radiation.


Last treatment was July 3, 2006.  NED ever since.  When I figured out that I should ask what the line was for before getting in it, I stopped getting cancers....*grin*....


Found CSN early 2005 after my hair fell out.  Met a bunch of fantastic people...all in total we were called the 'semicolons' and met once a year somewhere in the U.S.  


Last 3 years, living in America and The Netherlands (Holland) with my life partner.  Currently tethered to So California because 3 weeks ago he received a new heart.  Will resume switching countries in a year, with clearance from his heart team.

Hugs, Kathi

pepebcn's picture
Posts: 6352
Joined: Aug 2010

Dx may 2009-
Lurking the board may 2009-
Member of the board mid 2010-
Status, nearly 5 years of Stage lV (. 5 times NED 6 recurrences)
Having chemo since the begging just 8 months off after surgeries of colon an liver. currently playing with cancer stopping and continuing chemo when I feel exausted of it! For the moment it's working keeping minimum SUV activity in tumours , mainly lymph nodes!
Abrazos Raquelita!

pepebcn's picture
Posts: 6352
Joined: Aug 2010

For me .Few hours later I was on chemo and starting to be cured after the first control , 4 months later i was operated so chemo saved my life, despite I'm sure one day will kill me as well! lOL.

KathiM's picture
Posts: 8077
Joined: Aug 2005

BIG hugs, Kathi

serenity101's picture
Posts: 82
Joined: May 2013

I was diagnosed in May 2012 with stage 4 colon cancer. They found numerous metatases in both lobes of liver: "more tumor than liver" is how my onc describes my first scan. First CEA was 8800.

Had surgery the day after diagnosis, did not need colostomy.

Did 7 rounds of FOLFOX + Avastin which shrunk the the tumors significantly, then had allergic reaction to Oxaliplatin. Still way too many tumors to be resectable, but at least now you can see my liver in my liver scans, and it's back to a normal size.

Currently on 5FU + Avastin, stable as of last scan, although CEA was up a little (almost 15, at its lowest was around 6, I think). Have had to have a couple of breaks due to reduced platelets and elevated liver function tests. Am also now taking prednisone to see if it will keep the platelets up a bit more.

Considering retrying the Oxy, but we are waiting to see what my next scan shows in late August.

Have come to care about all of you, even though I don't post much.

Best wishes,




Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Hang in there!  It's tough, but one foot in front of the other,

herdizziness's picture
Posts: 3642
Joined: Apr 2010

Diag 02/06/2010 given 2 weeks without chemo, 4 to 6 months with. CEA count was over 2000, numerous mets in liver, lungs, colon and met in ovary and one in ureter.  Told never be surgery candidate.  By Dec. 2010 Christmas week, had liver, colon and ureter resection, all other tumors calcified, thanks to chemo everything shrunk or disappeared.  Tumors back by march of next year in lungs, liver and colon.  More chemo, more tumor growth in July, too many for surgery, then shrunk had liver surgery May 2013. Tumor in sigmoid colon still there (showed gone, but scans were wrong) looking to have surgery on it shortly.  Have been on chemo for all these years with exception off for surgeries (heart in April 2012 Being one of them).

Winter Marie

db8ne1's picture
Posts: 142
Joined: Feb 2013

Diagnosed on Dec. 7, 2012 - the week after 50th Birthday - with Stage 3 Colorectal Cancer.  Large T3 tumor with at least 1 node involved, per endoscopic ultrasound.

Chemoradiation: Every week day for 6 weeks.  5FU pump.  Jan through mid-February 2013.  Worked full-time throughout.

Joined board after lurking for a while in February 2013.

MRI:  Radiologist and oncologist had concerns regarding spot on my kidney that showed up on pre-radiation CAT scan.  So off to the urologist for 2nd opinion.  Urologist said lets wait and see and to concentrate on CC cancer first.  Will revisit on post treatment scans to monitor growth.  Also watching 2 suspicious spots on lungs (very small).

Surgery: April 11, 2013.  Removed 10 inches of colon/rectum.  Got a last minute "two-fer" surgery, as enlarged uterus was impeding access to colon.  (History of large, numerous fibroid tumors in uterus anyway. Uterus looked "20 weeks pregnant" due to tumors). Removed one ovary due to radiation damage, too.  No ostomy needed and no NG tube after surgery.  Textbook recovery.

Pathology:  Chemo/rad completely eradicated tumor and lymph.  No evidence of any cancer in tumor, 15 lymph nodes, clean ends of anastamosis, uterus, and ovary.

FOLFOX: Round 1 on May 15, 2013.  Experienced just about all the side effects, plus debilitating pain for 4-7 hours daily from Sunday to Sunday.  This occurred for the 1st 3 rounds.  Round 4 onc cut Oxi by 25% and the pain decreased, only lasted a few days mid-cyle, and the RX's that were prescribed during earlier rounds finally helped to ease discomfort.  Unfortunately, pain ramped up a bit during Round 5, although not as bad as the 1st 3 rounds, so it's still manageable.   Gotta love the cumulative effects...  Just had Round 6, so we will see what this round has in store!

2 Broken Wrists: Due to side effects of FOLFOX, I'm sure (neuropathies and imbalances), I fell on the 4th of July and fractured both of my wrists.  Bruised my tailbone, too, but there's nothing they can do for that).  I just saw the orthopedic surgeon and got new, tighter casts this past week.  He indicated that I could get the casts removed as soon as August 8, depending on how well the breaks have healed.  I will then need to wear splints and get physical therapy until healing is complete.  I had been working full time (except for surgery and recovery), but had to take another leave for wrists.  Hopefully I can get back to work after I get my splints, as my brain is turning to mush, thanks to chemo brain!

Looking forward to my LAST FOLFOX treatment on September 18, 2013 - as long as my CBC's remain good.

Have been following the boards regularly and praying for you all.



Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Goodness. So sorry to hear about the fall.  I know it must be tougher for you then me. I only broke my foot while on chemo   Hang in there.  

Semira's picture
Posts: 378
Joined: Mar 2012

Hi everybody and thanks for all that amazing stories. Annalexandia, I love your introduction :-) Tell more about Clowns and gators :-)

So, here we go...

I am caregiver to husband with stage IV Coloncancer. He was diagnosed at the age of 43 back in Nov 2011 while we were sitting on our luggage ready to leave for a 4 weeks trip to India. Well, no trip... but a rollercoaster ride instead of sitting in a plance...

He had surgery 8 days after diagnosis and luckily his 2 liver mets could also be removed. He got an temporary ileostomy and 6 months of chemo (Xeloda + Oxi). Not too much side effects (the ileostomy helped somehow) but neuropathy in hands and feed. Hands are back to normal now but feet still numb. In Mai 2012 the Ileostomy could be removed and since then it is wait and see. His CEA was 95 at the beginning and went down to 0.4. All checks so far were clear and next CT will be end of August. CEA was 1.2 two weeks ago, still deep in the normal range, I know,  but I dont like the upward trend. Well... we carergivers have to much time to think about all the what-ifs...

What more... we are from Cologne, Germany (sorry if my English is a bit bumpy) and I am glad I found this board early in our journey. I checked the german boards but there everybody was so down and pessimistic, wich depressed me even more in that bad-news-time. But then I found you and all this wonderful people here, all that knowledge and wisdom which helped and helps so much.

A big hug from


PS: we were able to catch up with our trip to India this January and spent 5 wonderful weeks in Rajasthan. The picture freaks check in here http://www.travelblog.org/Asia/India/Rajasthan/blog-773419.html :-)



KathiM's picture
Posts: 8077
Joined: Aug 2005

I LOVE your travel logs, dearest!!!


Hugs, Kathi

ron50's picture
Posts: 1729
Joined: Nov 2001

Dxed in Jan 1998 with an aggressive stage 3c colon cancer into six nodes. Small but nasty. 48 sessions of chemo for the rest of the year. I have had no recurrence of cancer since surgery. I joined the board at the end of 2001 and am still here. I have seen a lot of grief and sadness in that time but I choose to keep coming back. I have met some of the finest people I have ever known here and I miss those no longer here.
I have very many ongoing medical problems as a result of my cancer and the treatment but how can I complain when I have had over 15 years of bonus life. At the start I was assured by my surgeon that It would get me. Too aggressive too many lymph nodes he said. I told him I didn't die of cancer. He just laughed and said I hope you are right......So far .so good.. Ron.

Posts: 271
Joined: Nov 2011

Dx'd Stage III Colon  4 1/2 years ago.  Surgery and then FOLFOX all 12 tx.  

At three year check up in Feb. 2012, a small liver met showed up on CT scan.  

Liver resection April 2012

NED since.  Now on 6 month CEA and PET/CT scans. Next visit is October 

wawaju04976's picture
Posts: 316
Joined: Dec 2012

Husband dx stage 4 melanoma November 2012.

I was dx stage 4 cc with liver mets a week later. Colostomy put in, rectal abscess found, biopsy of liver confirmed CC in liver.

Folfox tx started before Christmas.

Colonoscopy in Feb. revealed clean colon. April PET showed shrinkage in liver tumors.

June 17 reversal of colostomy; as of now (July 25th) that is going great!

Folfox tx number 16 this Friday. Two weeks ago reintroduced Avastin after being off it for eight weeks.



johnnybegood's picture
Posts: 1122
Joined: Oct 2008

dx colorectal cancer in sept.2008,had 5 wks radiation and xeloda to shrink the tumor,had  surgery dec.2008 my mom(wolfen stayed with me for six months helping my husband take care of me she found this site for me) had temp colostomy for 5 wks then reversal in feb 2009,march2009started preventative chemo.oxy,leucorvin and 5fu pump had 10 tx of that almost killed me.doc kept saying i would be fine,you are young(dx at 44 years old)was ned for 2010 but still had severe neuropathy and was always tired could not return to work so finally got disability.had my yearly scan in jan2011 and found spot on liver.was sent to my surgen who did a better ct scan and found 3 spots on liver and 2 spots in one lungnow stage 4.started irrinatecan +avastin march 2011,had liver resection sept2011 and back on irritatecan+avastin for lung mets until march 2012 when it began to beat me down with stomach cramps and diareah.put on low dose of xeloda because platelets were too low for avastin.spent much of 2012 trying different drugs to get my platelets to rise as to no success in any of it had my spleen taken out in feb 2013 to get the reserve of platelets.that worked well during consult with my surgen for spleenectomy i wanted to know how many spots were in my lungs,last count in 2011 after liver resection(3 spots in one lung and two in the other while i was off chemo for liver resection it went over in my other lung)He told me as of feb 2013 i had 38 spots total now i am inoperable doing higher dosage of xeloda+avastin and have developed bad hand and foot syndrom.i will tough the next month out until my next scan in august and onc may take me off chemo for a month to clear this hand and foot thing up.so thats me living one day at a time on earth with my glorious Lord until He decides to take me home ...Godbless....johnnybrgood

thingy45's picture
Posts: 633
Joined: Apr 2011

I am one of the lucky ones. After 6 years of complaning to family physician, specialist etc, I was finally given a colonoscopy which specialist was unable to perform because obstruction was to large to let him see anything. Stage IIIB

Three weeks later (April 25 , 2011)  I had a left Hemi, 40 cm of colon was taken. Onc offered me the usual cocktail , but I declined. I had just lost my husband, moved to another part of Canada to be closer to my kids and said to him.... I just want one more summer........ and decided to go the natural way, juicing, walking, and eating a simple diet with a few herbal supplements thrown in to make it exciting.

LUCKY ME....... , so far so good, still NED. I am again enjoying another summer, I am sooooo blessed.

Lurking on and off but praying for all of you.

Hugs, Marjan

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

God bless you.  We started this journey only months apart, hang in there with me. Hugs!

abrub's picture
Posts: 2166
Joined: Mar 2010

“Routine hysterectomy” on April 6, 2007 found metastatic Appendix cancer tumor engulfing my ovary, and seeded throughout my peritoneum.  Dx: a very rare Stage IV Mucinous Adenocarcinoma of the Appendix.


More surgery followed, removing my omentum (seeded throughout with tumor) and 2 sections of my colon, one section of my ileum (all reconnected perfectly – never had a bag.)  Then Intraperitoneal (IP) chemo – 4 liters of chemo infused into my belly every other week starting 24 hours after surgery.  5 cycles of IP chemo.  Then 7 cycles of FolFox + Avastin as “adjuvant chemo” including a major error.  1st dose of Folfox was based on my body temp in Kg (98kg = 215 lbs) rather than my body weight (135 lbs back then!  A nurse had entered my temp as my weight.  As my Scots friends say:  “Nae good.”  (I’m a curler – lots of Scottish friends!)



Extreme side effects and complications every step of the way.  However, 5 years post-treatment, I remain cancer-free.

Maxiecat's picture
Posts: 544
Joined: Jul 2012

I was dx in June of 2012.  I did not find out the pathology until I was in chemo in July of 2012.  I had poorly differentiated signet ring adenocarcinoma.  They still are not sure of the origin...wether it is a colon cancer or an appendix cancer...but according to the specialist I am seeing...it makes no difference because the signet ring behaves very much like an appendix cancer.  My tumor was in the cecum...coming from the appendix but growing inside the colon...I was lucky, had it grown entirely within the appendix...it would have burst and spread cancer throughout my peritoneum.  It did go to 4 out of 18 lymph nones tested.  I did do 12tx ... 6 months of Folfox ... Finished up in January.  I wound up with neuropathy in my hands and feet.  I have had 2 clear scans since the n...but have been experiencing pain on my left flank and back...under my rib cage - since February. We also found out that since my diagnosis my CEA levels have gone up 5x higher than they were in the beginning.  They are still low...but what is significant is that they have jumped up.  The specialist that I am seeing wanted to rule out further spread of the cancer, so I just had a laparoscopic surgery on Monday.  thank God... There was No evidence of spread of the cancer.  They did do a "belly wash" - which is being tested for cancer cells... But for now everything looks good...no visible signs of cancer.  I still have the side pain and now am dealing with the recovery from the surgery...it has been a little harder this time than the surgery last year.  I got home from surgery on Monday night and have spent the last 2 1/2 days pretty much resting on the sofa.  I go back for my follow up in a week and a half...hopefully I will get the official good news.  The plan as far as I know it is to check CEA again in another 3 months...then do another cea and a pt/ct scan at 6 months....if all looks good the dr wants to do another laparoscopic in a year or year and a half.  The key to this is to catch the signet ring cell progression before it gets too far along.



lilacbrroller's picture
Posts: 412
Joined: Jun 2012

Hi, all, My name is Karin. I'm 46 and have been alive fourteen months since diagnosis. 5 cm Rectal tumor (primary) that had grown into my pelvic area, lots of initial lymph node involvement, four liver mets (largest was 5 cm+) and four small lung mets initially.  Not given a good prognosis at first - not a candidate for any kind of surgery. Frown  I will say that when I was diagnosed, it was a complete surprise. I was not sick at all, felt fine, and was very active - I was walking a lot and swimming 1000m/day.  I had had slight but naggingly annoying digestive problems (not serious) that were misdiagnosed over the course of several years, so got a colonoscopy last May and then, the rectal mass was found and my life completely changed.

Had FOLFOX plus avastin for six months.  Good results (Jan 2012) - primary tumor disappeared as did the junk in my pelvis, lymph nodes dark, two out of four liver tumors gone, the remaining two calcified and smaller, and a couple of the lung mets also disappeared. Dark pet.  Initial CEA was over 700, and in January of 2012 it was 14. It dropped further to 8.  Note: every scan (PEt, CT) showed a different number and position of my lung mets. that was weird...  The oxaliplatin messed up my hands - now I have full functionality but my fingertips feel waterlogged all the time, like I've been swimming.  At first after treatment, I couldn't put on earrings or hold a pencil, but now all of that is restored, which I'm grateful for.

Went on maintenance Xeloda - first a baby elephant dose of 4000 mg/day, two weeks on, one week off, and then reduced to 1000 mg/day metronomic. During this period I sought several second opinions - MD Anderson, Johns Hopkins, U of Pitt, seeking surgery, and applied for clinical trials. Was rejected from the trials, and also from surgery. Hopkins at least gave me a "wait and see." 

Tumors slept nicely until June 2013 and they woke up. CEA climbed to 21. However.. I also sought a 5th opinion and followed Pete and Ren to Dr. Nesselhut's clinic in Duderstadt, Germany via Dr. Chang in the US/NYC.  Yesterday I had my first dendritic cell injection in New York!! I opted for the Newcastle virus (a/k/a chicken flu). So we'll see.  I do hope it works, and understand that it is not a miracle cure.  I will be blogging about my experience separately on this site.

So that's my situation.  Personally, I like gardening, travel, reading, television, movies, and walking. and I"m an Earth sign.

glad to know you all!

- Karin

Posts: 199
Joined: Nov 2012

I went to get my routine annual exam November 2011.  Dr. said I needed to get a colonoscopy because I had blood in my stool (no other symptoms).  Colonoscopy revealed a cancerous growth December 2011.

Had 9 inches of colon removed January 2012.  Cancer found in 7 lymph nodes. Colon cancer stage III.

Started chemo Feb. 2012.  Chemo was very difficult (diarrhea, constipation, fainted all the time and had to get stitches in both of my eye brows two weeks apart, checked in the hospital 5 times, lost 50 pounds...blah, blah, blah...).

Finished chemo end of August 2012.

NED since then.  I go in for another blood test tomorrow so I am hoping I am still NED.


Posts: 453
Joined: Aug 2008

Gosh, it really has been awhile since I have check in on the board. I was glad to see Nana's "Roll Call" as I have replied to them many times over the years.

In October I was fortunate to hit my 5 year mark. I was diagnosed in 2007 with Stage 4 Colon and have been NED since november of 2008. At the time I had  10 and 12 year old daughters. A few months ago I was able to see my oldest graduate for high school (something I never imagined would happen) and will send her to college in just a few weeks. My youngest will be a junior and I hope to see her graduate too.

Just know that there a Stage 4 survivors both NED and living lives with the disease! Wishing the very best to you all.



Dyanclark's picture
Posts: 296
Joined: Apr 2012


I post here and I am married to George Clark. Dxd 2008.   Surgery for stage 2 colon cancer then three year remission.  He has had radiation and all the chemo's etc  .Past year he has been feeling good even though still doing treatment.  He gets  to Ned and normal CEA only to have it rise again after treatments.  We will see, CEA was .07 two months ago while on vectibix.   CEA now rising and is 3.6.  The roller coaster  ride is never over.

Hugs George &Dyan. 


chp's picture
Posts: 29
Joined: Dec 2012

My story begins with my mom being diagnosed with colon cancer, stage 3b, in her ascending colon in May of 2012.  While I was with her for one of her appointments with her surgeon, he asked me if I had ever had a colonoscopy -  I had 8 years previously.  He suggested i go in for another one. Was busy being my mom's caretaker during her chemo, but managed to get in for one in August.  Surprise - colon cancer for me also.  Had a resection of my ascending colon, appendix, cecum and a small part of small intestine. Fortunately, it was stage 2a.  Unfortunately, it was signet ring cell.

I finished up 6 rounds of Xeloda in May.  I will not have another ct scan until September.  Feeling really apprehensive about waiting so long for ct scan, esp after hearing Maxicat tell about how proactive her doctors are being.  My onc doesn't seem to think the signet cell needs to be handled any diff than any other kind.  I have been tested to see if it is hereditary, thankfully, it is not.

My mom is 84 and just had aother ct scan--all clear!! 

Best to all!  Cathy

DD3's picture
Posts: 134
Joined: May 2013

Care taker here.


Wife was diagnosed with CRC Stage IIIA Dec 2012.  Eleven lymphnodes removed, six positive. Ugh.  Yell  Her tumor had practically closed off her colon off.  So, the doctors put a stent in her to allow bowl movements to pass and by some time to get everything in order.

Let's see...  First up, 28 rounds of radiation + Xeloda (sp?).  Last two weeks were brutal, really took a toll on her.  Ugh again. Undecided

Next up... Surgery.  Removed about 10 inches of her colon and "installed"  a temporary ileostomy (nicknamed tempe [short for temporary]).  Some set backs for fluid build up.  Clean margins on both sides of the removal.

Today... FoFox.  Five of twelve rounds completed.  So far, so good.  Fatigue, some neuropathy.  However, to my amazement she still has a appetite.  Laughing

We will get through this and move on.  Just a long journey.  Although through various channels my wife has found of couple of new friends that are traveling the same road and have provided invaulable support. 

marbleotis's picture
Posts: 715
Joined: Mar 2012

Here is my story;

Dx'ed on 1/13/12 (Friday the 13th) with stage 3b signet cell colon cancer. 

Some backstory - had "flank" pain for 4 months prior.  On left side front and back.  After many tests, OOps found a gallstone, more like a gall-bolder.  Had it removed, pain went away for about 2 weeks then came back in back only.  Horrible, could not sleep, paced the floors for days and days.  Insisted something was wrong, got the colonsocopy and the story begins.

Surgery to remove right side of colon on 1/31/12.

6 months of Oxi and 5fu ended 8/24/12.  Neuropathy hands, feet, face, lips, teeth, tongue. Only moderate hands and feet today

CEA very low no spikes, CT's are all clear, had the genetic testing done - all clear I am NED - thank God!

1 yr colonoscopy found a "pre-c" polyp removed, follow up flex sig 3 months later found some pre-c cells.  I guess I am special.

So I am closely watched like everyone else in my position.  I am nervous as most of us are.

Next CT in August.

Cancer has changed me.  I do not tolerate things/people like I used to.  Which is a good thing.  I need to manage and control stress in my life better.

I will update again after the CT scan. 



Posts: 1170
Joined: Sep 2012

My husband, Steve, was diagnosed with Ulcerative Colitis in 1999.  Pan Colitis meaning his entire colon was affected.  Very very sick off and on.  Went for regular scopes.  May 2011 became constipated.  Very unusual for someone with UC.  Eventually became completely blocked.  Diagnosed with colon cancer on June 1, 2011.  Sub total colectomy with Ileostomy.  After the surgery I was told that it did not look good.  Surface cancer still remained in the abdominal cavity and two retroperitoneal lymph nodes appeared cancerous.  Pathology report confirmed this.  Did 13 cycles of Folfiri with Avastin.  The only cancer that showed up on scans prior to chemo were the two lymph nodes.  After eight weeks of chemo he was Ned.   Went into Hipec surgery on April 13,2012 with no evidence of disease.  (But we knew it was there).  Surgery was 10 hours.  Lost spleen, tail of pancreas, some small intestine, some abdominal wall, omentum, remnants of rectum.....  Went well.  Complete cytoreduction was achieved.  Did not develop any complications.  Pathology report was great.  Only surface cancer, no affected lymph nodes.  Had scan Sept 2012.  Numerous liver mets.  Began Folfiri.  Very affective at first.  Major shrinkage.  Surgery seemed possible.  A scan in May showed progression of liver mets and several small spots on lungs. Surgery was off the table.  Started Folfox.  Has done 3 sessions. Throughout the past two years he has developed numerous complications which have affected his QOL.  Blood clots, hematoma, kidney stones, blockage of small intestine...  Steve has the K RAS mutation, therefore options are becoming limited.

traci43's picture
Posts: 775
Joined: Jul 2007

Had no symptoms until my abdomen got bloated and would not go down no matter what I tried.  Went to GP and it took about a month to find a large mass where my left ovary was. 

DX June 2007, age 44 - Surgery to remove ovarian tumor as MD thought is was ovarian cancer because the ovary weighed 5 lbs! MD found sm tumor on transverse colon, lost only 2 inches, when looking for a missing sponge, also tumors in omentum, only 1 positive lymph node out of 20+.  Had problems with a leaky incision.  12 rounds of FOLFOX and normal CEA (December 2007)

December 2008 - recurrance in same area, 8 rounds of FOLFOX--HIPEC surgery (August 2008) only 3 small spots in a part of the omentum, lost one inch of colon because tumor resting on it, appendix and gall bladder, that was not removed during original surgery--6 rounds of FOLFOX and normal CEA (December 2009)

November 2010 - recurrance this time near rectum, mostly lymph nodes--18 rounds of XELIRI. Had a bad reaction at round 4 while in NY and reduced dose.  Normal CEA (July 2011)

July 2012 - recurrance, same area now solid tumor, 6 rounds XELIRI, surgery to remove tumor, I don't believe any lymph nodes were taken (October 2012), no post-surgery chemo.  Surgeon went in from backside and removed my tailbone to get to the tumor.  Had internal abcess and problems with a leaky incision.

February 2013 - Diagnosed with CML--chronic mylogenous leukemia - taking Sprycel daily.  Likely had this since December 2011 but chemo side effects masked the problem

July 2013 - rising CEA 6.8, CT Scan showing enlarged lymph node.  Onc says wait and see. 

Last Wednesday, the day before I saw the onc, I developed fever/chills and have an undetermined infection along my rear incision line and a UTI.  So no real discussion of the cancer, just trying to treat the infection which is going away with antibiotics. 

Not sure what the heck is going on right now.  Will talk to my onc next month to discuss a game plan.


YoVita's picture
Posts: 590
Joined: Mar 2010

It's good to hear from others. 

StageIIIC rectal - Feb. 2010, Surgery, radiation and chemo.  One solitary lung nodule after 2 1/2 years of NED. Surgically removed and biopsied, metastasis from rectal cancer so I'm now Stage IV.  Clear CTscan and colonoscopy one year after lung surgery.  Good to hear from all especially lurkers.


braelee2's picture
Posts: 130
Joined: Sep 2010

Dx in Aug of 2010. (Age 37) with stage 3 colon cancer . 12 inches of colon removed and 12 rounds of chemo

           April 15 2011 Surgery on colon to remove a abscess

          May 16 2012 Liver resection and 6 rounds of chemo.

          And now I go in Aug 27 for another Liver resection. And keep chugging along. 

fatbob2010's picture
Posts: 467
Joined: May 2012

Age 58

First Dx 2009

2009 Colon resection

5 months Folfox

2012 Liver resection

More Chemo

Bad reaction to Chemo

Currently NED

Big Hugs to All



joemetz's picture
Posts: 493
Joined: Nov 2011

well, i think I'm becoming an old timer now... cuz my chemo brain is so damn bad, that I had to scroll through this entire Roll Call string to see if I replied at all.

and, I haven't.

my "long story" is within my profile. But the short story, is for the last six months I've had growth and progression of the cancer.

it is spread from the liver to several areas of the bones in the pelvic area as well as both hips and ribs. It's strange, because I do not feel it very often, but hopefully the new folfuir which we started in the first of June is working.

It's been a very difficult time for me on FolFuri... but i sure hope its kicking cancers ***, cuz it sure is kicking mine.

my family is amazing, and it feels like we are having the most wonderful summer ever.

Big news for me will be August 21st.... after the PET and CT, we'll see if Cancer is winning or Chemo-Joe is winning.

hugs and great idea for a roll call.


Joe Metzger


GOOFYLADIE's picture
Posts: 233
Joined: Aug 2009

1998 I was diagnosed with Stage IV Dukes C Carcinoma.  My fantastic surgeon removed a baseball size tumor with 16 of the 32 lymph nodes positive.  My first Oncologist said he would give me Chemo and radiation and make me as comfortable as possible.  To me those 3 words (cap) meant he had no hope for me, he already had me on my death bed.  He told me this about 3 days after my tumor removal, my brother walked in my room looked at me looked at the Doc and said I believe my sister would like you to leave now, and do not return.  My brother had not even heard one word of our conversation with the Doc but I guess I had kiss my Cancer butt on my face!lol The doctor left and in a couple days I went home released by my surgeon.  I then found an Oncologist who literally ordered a hospital bed to his drs office, because I lived 2 hours away and he did not want ER doctors watching over me he wanted to see for himself how and why I was reacting to the chemo. Because as my Gastro dr teased me, I was a case of Murphys Law, I was supposed to do a 6 month chemo and maybe radiation after, but the 6 month chemo absolutely kicked my rearend.  I was so sick my kidneys, liver, pancreas, every thing that functions quit functioning, so I went to the old fashioned method of leucovorin and 5 fU and a cocktail of sometype I apologize I cannot remember what it was called Chemo brain I guess, but my mom and husband dont remember either.  But my mom still cant remember me telling her all the possibilities before my surgery like it could be cancer, she chose selective hearing (never hearing Cancer) and my husband despite him going thru a phase with prescription meds, and then later having a stroke and then before my treatment was over he was a full blown alcoholic.  But he was functional, He was my Hero at one time he didnt drink when he had to take care of my young boys, and he went to work and my friends would take me to chemo treatments or my mom, and then my husband would take turns too. But everytime I was in the hospital my husband was beside me when I woke up, he went work, he played with my 3 j's, (my 3 sons, there names start with j's) and he took care of the house but more he was there when I needed him. 

My Oncologist would tell me this is how you will do on the treatment plan, and I always did the opposite, when everything my age, 31, female, in great shape except for having cancer I was a brick shi$ house, until chemo I was 6 ft tall and usualy 145 lbs when chemo his at my absolute lowest point when I think only my Dr and I believed I was going to pull thru I weighed 118.  Thats skinny, skeleton.  I couldnt take a bath or shower without puking the smell of the minerals in the water made me sick so I finally had my husband run my water for a bath then I would waith 30 min or more before getting in letting the minerals settle and then I could bathe.  I was freezing or hot all the time, never made much sense.  My fingernails were so tender with the cuticles tore up from the floor up, I wore cotton gloves  on my hands at night because I couldnt stand them on my hands all the time I like to feel things in my hands you cant with gloves.  But when I got so then at 118 I knew it was time to move in to do something I wasnt going to die because I couldnt eat.  I am and always will be a foodie.  I love to cook for those who like to eat and I like to try new things. So I'll be damned if I was going to dye of cancer and starve to death to boot.  I finally was given ativan, a sleeping pill that in cancer patients works for nausea.  Then I would go thru Burger King of all place and get a whopper Jr and I drank hot tea and water that I carried with me all the time.  Water was extremely hard for me to drink because of the mineral deal, but anyway then I would drive 2 hours get my chemo  go have the spiciest mexican food I could get even have a Strawberry Daquiri or Margarita sometime Onc said it wouldnt hurt.  He would look at me and say Cass you have Cancer do you really think a drink with your lunch is gonna kill you! and smirk! He was and still is an awesome Dr. His father had passed away of Colon cancer so I had a physician knowing firsthand perspective what it feels like to have a family member with colon cancer and a dr treating someone with colon cancer.  Before we started treatment my Onc heald my hand and said Cass I'm going to make you sick, I am going to make you sicker than you have ever been in your life; I may even take you to deaths door.  But I am going to use everything I have and In my power not to let you pass thru.  He did not say it like he was God! He did not say it with a God like complex or arrogant attitude.  He simpley told me straight up, this is going to be a ***** of  a ride and if I can hang on, he'd help me get thru it!! Somedays I know I was treading deep water, other days when all my bodily functions shut down I knew my Onc. was treading right along with me.  If I was doing poorly he knew about it, and he was on it.  I remember the 3rd time the chem knocked my bodily functions for a loop and they thought that was it.  They figured they went to far there not coming back this time.  I  guess I didnt realize how bad off I was, because when I started feeling better I sat up and told Doc okay Ive had a few days rest.  Lets go lets do it again, my Onc just cried.  He couldnt believe I was willing to do more, I could imagine not I had a 4 yr old, a 6 yr old and 10 yr old at home.   On that note we both cried, and he said Your so young I cant get the cancer board to take in the fact you are only 31 and female age, and health status, before should count for something in statistics.  So I bounce around with my stats from Stage IV which is what they say I was, to Stage III C because my Oncologist way back then was trying then to help change the way the stats were writen.  Because the only stat at that time was a female my age should not have colon cancer.  Wow , did not give me anything to go on at all, but I am and always will be full of P and V, I have been having a hard time in my relationship with my spouse who is an recovering alcoholic and I let his problems start to define me my his mistake degrading and embarassing me to where I didnt want to leave my home.  My weight has suffered, my friendships have suffered, my family has suffered, but as the open book I promised my dad to be, (because people dont know unless you tell them, or let them ask) I got dipped in **** to come out of this smellin like a rose, not be wallow and wondering why Im still here.  So life still happens even after cancer free, the good, the bad and the ugly, you just have to put your best foot forward even if when your on chemo your best is gettin up to go to the bathroom and I was there in those shoes at one time, today im trying not to go bankrupt, still heavy thinking on divorce because we just go in circles, and I know I was kept here for greater things then arguing and fighting.  But let me tell you, there is not a day I dont thank a higher power, the great all mighty, the whoever, whatever that kept me here, because I have got to see some fantastic things in these 15 years and life is good.

Sorry so long,

Goofyladie (Cass)

BusterBrown's picture
Posts: 221
Joined: Mar 2005

Here's a recap of my journey. On Dec. 14, 2004 I was diagnosed with stage 4 colon cancer, (1) tumor in my liver the size of a pea and (3) spots on my liver. Immediately following the dx, I was put on folfox and had very good results, 6 wks later the spots were gone from liver and the tumor on my colon began to decrease in size. March 2005, I had a colon resection; they took 6 inches of colon and left the rest. After I recouped from surgery I finished my folfox and (5) wks of radiation. A month later I was declared NED, I took the next 4 months off. Fast forward to Feb 2006, one tumor reappears on my liver, doctors decide that surgery to chryo tumor was the answer, they did, and for the next 2 years I was cancer free. June of 2008, I go for scan, they find a spot very near chryo’d tumor, this time they decide to do a liver resection. Surgery goes well, I’m NED until Oct of 2009. We do a periodic ct scan, results show 2 more spots appear, a very small spot on a lymph node in intestinal area, near liver, and the other in the plural of my right lung. At that point my doctor tells me that my cancer is now incurable,the plural tumor is inoperable, and chemo (folfiri) is my only option. Two years later, Oct 2011, doctor is surprised that no other cancer appears, especially given the fact that I was taking chemo every 4-5 weeks. We decide to do a Pet scan to see if there’s anything new, and as it turns out, there’s not. The tumor in my intestine has been the same size for 2 year, it’s showing up hot in the Pet scan, and the spot in my plural looks to be calcified, no activity shown on Pet. Today, both my onc and surgeon decide the once inoperable tumor in my lung is now operable, they want to remove it along with the tumor in my gut in the near future, early Dec, 2011.
I went through with the abdominal surgery last April 2012,my doctor removed a lone tumor from my lymph node. I was in the hospital for 4 day and they sent me home with a bottle of motrin. It's truly amazing how good they are getting with large incisions. I had a recent scan and the spot in my lung has not change and there is no other evidence of disease.

Another CT scan done Feb. 2013, scan was clean, next appointment was set for Aug 2013.  In April 2013, i got influenza B, was really sick and dropped 20 pds in 4 wks, I knew there was something wrong. So, I go to my primary physician for some tests, she's convinced that it's the flu, I'm convinced it's something else,  So I have her call my Onc to let him know what's going on, my Onc says highly unlikely it's cancer, afterall, just had recent scan. I convince them both that I need a CT scan and they agreed. New CT scan April 2013 shows cancer has come back in my liver and abdomen wall, my Onc recommends Folfox asap. That was 10 wks ago, I'm now on my 5 dose and I feel a lot better, I've gained back 15 pounds and feel pretty good, no pain anywhere.  Recent scan showed dramatic improvement, I still have cancer, but it's manageable.

There's been a lot of peeks and valleys along the way, but I'm happy to be here despite all the chemo I've had to endure.




Posts: 4
Joined: Jul 2013

Easter 2003 - admitted to hospital with severe gut pains , woke up with a colostomy , tumour blockage , ruptured colon  . 37 years old .

Diagnosis of Stage 4 Colon , with secondaries in the Liver .Prognosis not good .

June 2003 - half a yard of colon removed ,colostomy reversed .

August 2003 -course of chemo via hickman line 5FU (?) and oxyliplatin .

December 2003 -Liver resection .

Regular scans and colonoscopies no further sign of disease since .Still not quite sure how . 

Intermittent neuropathy and severe fatigue ,no rhyme no reason to it , sometimes I am good for months , healthy and active , then bang , I crash . Small price to pay for survival , but gets me down at times . Come and lurk here occasionally ,helps me  realise that other people have had similar experiences ,and hopefully posting this will let someone know that they can get thru too . 

 thanks ,

    Wish you all well ,


TxKayaker's picture
Posts: 177
Joined: Jun 2009

April 2009 Stage III - 12 rounds chemo , colostomy reversal December 2009 clear scan since surgery in April 2009.

TxKayaker's picture
Posts: 177
Joined: Jun 2009

April 2009 Stage III - 12 rounds chemo , colostomy reversal December 2009 clear scan since surgery in April 2009.

emma_s's picture
Posts: 22
Joined: Mar 2013


My husband (60y) was dxd in April 2, 2012 with stage 4 cc - numerous mets in liver and lungs, later they found lesions in femur and iliac bones. He has also KRAS mutantion.
Had a pathological femur fracture after 3d radiation in early June 2012.
From July 2012 started - 12 rounds of Folfiri + Avastin, which shrunk all mets by 60% and primary tumor dissappeared.
CEA in January dropped to 7 and Onc. decided to send him for a 2.5 month chemo break until March 2013.
CT scan in March 2013 showed significant inlargement of all mets.
In late March did 5 radiations on pelvis and started a new chemo treatment with the same coctail - Folfiri+Avastin with an addition of Zometa for bones.
Currently he completed  10 rounds of chemo, which seems to be not working any more as the last blood test showed the elivated liver enzymes and CEA went up from 98 to 130.
The next CT scan is scheduled in August.
We are thinking about doing a chemosensitivity test and plan to do it through the local Nathuropatic clinic. And may consider a local Hypothermia for liver.
Best wishes to all!


Posts: 1282
Joined: Apr 2012

Dxed in Dec. 2009. Tumor in rectum stage ii bordering on stage iii. After Chemo pump and concurrent radiation resection  requiring ileostomy. Reversal of ileostomy brought a fistula. Fistula healed itself from inside out.  Thus NED  by July 2010 .  June 2013 pet scan showed nodule in lower lobe of lung with 2 lymph  nodes involved.  Biopsy showed Lung node non-cancerous, but result of coccidioidomycosis(better known as valley fever) thus still NED.  Yea!!!  First colonoscopy at age 77, now 81

Bluejuniata's picture
Posts: 20
Joined: Nov 2012


I was diagnosed December 2011 with stage 3 rectal cancer., I found blood in my stool and went in right away. ( my Grandmother and Aunt both had colorectal)  went on xeloda and had radiation then had my rectum removed and a temp. iliostomy in May. Two out of 17 lymph nodes tested positive. After a week in the hospital and two very miserable weeks at home I went back into the hospital with an abcess for another week. Then went home with a tube to drain the abcess and my new iliostomy. It really was not what I would call a good time, right? Anyway....in July was told I had 2 mets to my liver. Got a port, started chemo/ erbitux August first and the first round sent me to the hospital emergency room and for another week in the hospital. Ended chemo Oct. 18th. NED the day after Thanksgiving. Jan 2nd had iliostomy reversal and they said as long as they were in there the surgical oncologist was going to burn off and resection where the mets had been...so I got a two-fer. Scan in March inconclusive because of operation scarring..they thought. Scan in june, mets back where the resection was done and the burning off was done and one new smaller met. Am now in paperwork process of receiving y-90 spheres and hoping I qualify re pre testing. If not, they'll do chemo emb.

That's my cancer journey story so far! I am 52, almost 51 when diagnosed, female. It's good  to have you all to talk to. Thanks.

Posts: 1282
Joined: Apr 2012



Have you inquired of you Drs. about reversing you Ileostomy.  Even though I developed a fistula, it was the best decision I ever made,

You might want to discuss it with

your Drs,  Best of luck to you!!!

SCMorrow's picture
Posts: 3
Joined: Jul 2013

Diagnosed stage III rectal cancer in January 2013. I had pre-surgery radiation and chemo(5-FU). Doc removed cancerous tumor with clear margins, found 6/24 lymphnodes still cancerous, and removed apendix while he was in there (haha) in May 2013. Began adjuvant chemo. in the end of June. Standard Folfox every other week. I've only had three treatments and geeting bad side-effects ie. neuropothy, throat, muscle spasms. Maybe I just need to suck it up? Going to talk to oncologist about trying Folfiri. I'm so glad I found this site, I was reading everyone's posts. It's such a relief and inspiration.  

impactzone's picture
Posts: 542
Joined: Aug 2006

Hello old timers. It is now 7 years since dx with stage 4 colon cancer (mets to lungs and liver) and I am still here. I know I haven't posted much  the last year but I do read many posts. I just had CT scan and shows NED. This is now 1.5 years since my last lung resection as clear. ( 4 lung resections, liver, resection, colon surgery, pulmonary embolisms, chemo). I often don't post because the randomness seems so wrong. I am very grateful and fortunate. It was important to me early that there were chances of some success so here is at least one for now. If I had to credit anything, I did change eating habits, got surgery at every chance I could ( all done at Stanford), stopped suger almost completely, stopped all sodas and fruit drinks, kept working, tried to get negative things away, kept very busy with kids and coaching, take 1 aspirin a day, have a great supportive family, do use prayer frequently, and developed a huge hatred of cancer.



Helen321's picture
Posts: 1428
Joined: May 2012

Chip, I wish there was a like button!

Posts: 20
Joined: Aug 2012

Ive been hanging around here for a couple of years but im more active elsewhere, but i guess I can at least give an update.

Dx Sept 2011 after a colonoscopy intended to find the cause of a bout of bloody diarrhea (which cleared up of ist own accord and almost certainly wasnt cancer related).

Rectal cancer StIII. Radiation and Xeldoa.

Lar Feb 2012, temp illeo reversed after 6 weeks after developing a fistula between illeo and op wound.

Adjuvant Xeloda and CEA @ 3 but CA19-9 @40 even after surgery. After 3 months CEA rising and CA19-9 doubling every few weeks, liver mets Dx Sept 2012. 3 rnds FOLFOX & Avastin, 6 weeks break, liver resection Jan 2013, something like 10 mets and 60% of liver removed. NED after surgery, CEA 1,7, CA19-9 27

Currently finishing 3 rounds adjuvant Folfox  & Avastin, status unclear, follow up scan end of Aug, Hopefully still NED.


Posts: 20
Joined: Aug 2012

Ive been hanging around here for a couple of years but im more active elsewhere, but i guess I can at least give an update.

Dx Sept 2011 after a colonoscopy intended to find the cause of a bout of bloody diarrhea (which cleared up of ist own accord and almost certainly wasnt cancer related).

Rectal cancer StIII. Radiation and Xeldoa.

Lar Feb 2012, temp illeo reversed after 6 weeks after developing a fistula between illeo and op wound.

Adjuvant Xeloda and CEA @ 3 but CA19-9 @40 even after surgery. After 3 months CEA rising and CA19-9 doubling every few weeks, liver mets Dx Sept 2012. 3 rnds FOLFOX & Avastin, 6 weeks break, liver resection Jan 2013, something like 10 mets and 60% of liver removed. NED after surgery, CEA 1,7, CA19-9 27

Currently finishing 3 rounds adjuvant Folfox  & Avastin, status unclear, follow up scan end of Aug, Hopefully still NED.



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