Roll Call ****ALL****

Deena11 said:

Roll Call...I'm here!

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.

 

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.

Dawn  

Dyanclark said:

George

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. 

 

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

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.

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. 

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

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)

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. 

sunbeamtim said:

Newbie/Lurker

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 ,

             Tim

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

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.