stage IV roll call

Betsydoglover said:

Still here - diagnosed 5/2005
Still here - diagnosed 5/05 with liver met.

Sigmoid colectomy 6/05
6 cycles Xeloda/oxaliplatin/Avastin - NED after 3 - stopped chemo 12/05
Tiny lung nodule (9x11mm) shows up 11/08; removed via VATS 4/09
6 cycles Xeloda/Avastin
Continuing Avastin only every 3 weeks
NED again since 4/09

march '08
stage 4 with several mets to liver, gall bladder, sigmoid colon, etc, also have a 2nd primary cancer in thyroid, stage 2
not a surgical candidate
folfox with avastin x 6
colon and liver resection
ilieostomy, takedown 2 months later
folfiri x4 w avastin
folfox x6 w avastin
2nd liver resection
serious infection(5 months of hell too many procedures to list)
folfox with avastin x6
bland embolization
xeloda with avastin x 12
prepped for novalis but aborted due to several new tiny mets to both lungs

when diagnosed my CEA was well over 7000, the lowest it has been is 25. It is currently 177. But I have had three treatments of abraxane since last checked. I'm expecting it to go way down.

I have never had a single symptom from the cancer, only from the treatments. Often times I feel like I don't have cancer but the Drs say I do. I look forward to Novalis or Rapidarc (both are forms of stereotactic radio surgery). I don't expect it to cure me but it can buy a bunch of time.
As far as battling cancer. My advice is to learn as much as you can. Trust that your Dr is doing the right thing, but get 2nd and 3rd opinions. Stay on top of new treatments. Your Dr only does what he knows. If he/she hasn't heard of a new treatment and you have, don't hesitate to educate him or her. You have to be on the front line. Don't expect your Dr to be there with you.
In March of 08 the Drs gave me 2 months to live and most recommended hospice. In August of 09 they gave me 1 month. Here I am, proving folks wrong and doing my best to keep up with the cancer. I'm not expecting a win, but I'm cool with a win or draw.

snommintj said:

march '08
stage 4 with several mets to liver, gall bladder, sigmoid colon, etc, also have a 2nd primary cancer in thyroid, stage 2
not a surgical candidate
folfox with avastin x 6
colon and liver resection
ilieostomy, takedown 2 months later
folfiri x4 w avastin
folfox x6 w avastin
2nd liver resection
serious infection(5 months of hell too many procedures to list)
folfox with avastin x6
bland embolization
xeloda with avastin x 12
prepped for novalis but aborted due to several new tiny mets to both lungs

when diagnosed my CEA was well over 7000, the lowest it has been is 25. It is currently 177. But I have had three treatments of abraxane since last checked. I'm expecting it to go way down.

I have never had a single symptom from the cancer, only from the treatments. Often times I feel like I don't have cancer but the Drs say I do. I look forward to Novalis or Rapidarc (both are forms of stereotactic radio surgery). I don't expect it to cure me but it can buy a bunch of time.
As far as battling cancer. My advice is to learn as much as you can. Trust that your Dr is doing the right thing, but get 2nd and 3rd opinions. Stay on top of new treatments. Your Dr only does what he knows. If he/she hasn't heard of a new treatment and you have, don't hesitate to educate him or her. You have to be on the front line. Don't expect your Dr to be there with you.
In March of 08 the Drs gave me 2 months to live and most recommended hospice. In August of 09 they gave me 1 month. Here I am, proving folks wrong and doing my best to keep up with the cancer. I'm not expecting a win, but I'm cool with a win or draw.

my path so far
Diagnosed 2/08 with Stage IV - extensive mets to liver
3/08 surgery - colon resection and HAI pump installed
4/08 - 8/08 IROX plus FUDR in HAI pump
9/08 portal vein empolization
10/08 liver resection - 70% of liver removed
11/08 several small lung nodules
11/08 - 4/08 Xeloda
Small tumor in caudate lobe of liver (not involved in prior surgery)
Irinotecan plus FUDR - after several months, liver tumor no longer visible on CT scans
Increase in number of small lung nodules while on Irinotecan; Xeloda added back in
Lung nodules stable until recently but too numerous for surgery; small liver tumor has reappeared
5 FU plus Avastin effective for about 2 months; growth on most recent CT scan
Many side effects from treatment - small amount of internal bleeding from esophageal varisees due to large amount of liver removed in resection; itching all over body from elevated bilirubin 11/09 - 2/10; steroid induced diabetes from steroids to help calm elevated liver enzymes

Despite everything, other than the itching, I have generally felt great. Once the chemo started working on the liver tumors, I just felt stronger and stronger. After recovering from the surgeries, I would not know I was sick but for the fancy tests. I have the KRAS mutation and right now, I am worried about running out of treatment options. I am just too healthy otherwise, and I have chldren who need me too much, to lose this fight.

two year anniversary
I was dx May, 2008. Stage 4 rectal cancer with mets to liver and lung. Surgery was never an option. Folfox+Avastin and Folfiri+Avastin work in the beginning but fail eventually. I am going to start my third clinical trial.

Peter

just made it to 5 years!
Diagnosed on May 11, 2005, with stage IV colon cancer (mets to the liver and left lung). Had colon removed on May 23, 2005. Started 5FU + Avastin, was NED after a eight cycles, but a few months later had a recurrence in my liver. Had liver resection in 2006, then a lung resection in 2008, and continuous chemotherapy ever since. Currently have multiple mets in both lungs, left pleural lining, liver, chest wall, and then probably a few I don't know about!

Yes, we have spirit! But we need prayers, too!
Husband David dx stage 3C 4-08 in right (ascending) colon. Moved to Stage 4 Jan. 2009 after liver met showed up on scan. Has been on chemo most of the last two years. Liver resection 3-24-10. Had 75% of liver removed.

Currently in hospital at MDA in Houston. Has had several issues with bile ducts clogging and not draining properly. Had surgery today and attempts to unclog the blockage were unsuccessful. Waiting on Plan B. Part of liver thriving, other sections is bloated with bile that has no place to go. So we needs some prayers and positive thoughts. As do all stage fours and their families!

Priscilla

WinneyPooh said:

Beating the odds,
I can see from all that have joined in so far that we are beating the odds, dispite what doctors are saying.



for Priscilla, I sincerly hope everything turns around, many prayers and positive thoughts.

Let have more cheer in

Live, Love, Play
Winnie

update
Just got the results of my scan back and they are all clear again. So here I am closing on 3 years past DX and 1 year past liver resection.

charelaine said:

I'm here too!
Initially diagnosed in 2006 (at age 29) stage IIIC, had surgery, colostomy for a year and a half, chemo with FOLFOX- 11 times, six weeks radiation. Later had a colostomy takedown and a hysterectomy along with a scare, but luckily-- 4 years off.

Mets to abdominal lymph nodes and neck found March 2010. Will have my 5th chemo with Folfiri plus Avastin on Friday. Had a scan on Saturday to check for shrinkage ( let's go shrinkage!!!) and have not heard yet.

Still teaching and chasing my 14, 12, and 10 year olds. Still able to be a taxi driver for teens on most days.

I've got spirit, yes I do! I've got spirit, how about you???

I have friends and family and coworkers in my corner. I love my life. I am not ready to give in, so I won't. I hope that's enough.

Rookie on board
Dx 4/19/10 with stage IV. Mets to several spots in peritoneal lining. Currently in round 3 of 12 rounds of chemo over 6 months. Spirit stronger with a support group like this!

scouty said:

Hey Girl!!!
Good to hear from you and happy birfday!!!!

Hope all the kids and grands are doing great too.

Hi Lisa
The kids and grandkids are all doing great! My youngest daughter graduates high school June 3 and we are getting ready to move from California to Nevada so things are a bit crazy right now, but in a good way.

How are you doing?

Jamie

Diagnosed Dec 2002 Stage III
Diagnosed Dec 2002 Stage III rectal.

Over the past 7+ years, I've had three recurrences in lung -- each time a solitary met, surgically removed, followed by chemo.

I've had long periods of NED (yea) and no treatment (double yea) -- but never longer than 2 years.

Just diagnosed with bone mets -- will be starting Xeliri + Avastin next week.

I've stayed active throughout (working, hiking).

Yes, I've got the spirit! I'm a survivor and plan to keep on beating those odds -

Tara

Hi I'm new, and Yes I got spirit!!!!!
Here's my story. Diagnosed with rectal cancer January 2007, underwent colon resection, complete hysterctomy, they had to peel right ureter off of tumor. Went thru radiation therapy, started on folfox, scan showed 3 spots on right lobe of liver. Finished chemo, had right lobe of liver and gall bladder removed. 8 months later the cancer had grown in my right ureter blocking my right kidney, I had a stent put in started on folfuri. finished chemo in April of 2009, had my right kidney, right ureter and part of my bladder removed in June of 2009, all biopsies came back with no cancer. Last scan in March was clear, I go back end of June for follow up.
Yes I have spirit, I am blessed and thankful to be here!