stage IV roll call

2

Comments

  • snommintj
    snommintj Member Posts: 601

    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.
  • Bear23
    Bear23 Member Posts: 84
    I'm Here Too
    Age at dx 42
    dx April 08 stage 3C Rectal Cancer
    radiation w/5FU thru July 4 08
    LAR Aug 08 lymph nodes involved
    c diff
    Folfox x 12
    ? Sarcoid
    Spleen issues
    Dec 09 mets to lungs Stage 4
    Currently Avastin and 5FU
    Still working and feeling good.

    Love, Hope and Faith
    Bear
  • ADKer
    ADKer Member Posts: 147
    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.
  • peterhw
    peterhw Member Posts: 69
    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 now on my third clinical trial.

    Peter
  • peterhw
    peterhw Member Posts: 69
    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
  • peterhw
    peterhw Member Posts: 69
    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 in two weeks.

    Peter
  • rthornton
    rthornton Member Posts: 346 Member
    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!
  • PamPam2
    PamPam2 Member Posts: 370 Member
    Live and Kickin
    Emergency surgery Aug 04. Large tumor, perforated colon, total obstruction. Tumor engulfing overy, lymph node involvement. Emergency colostomy to keep intestines from bursting, then after healed a bit resection to remove tumors and lymph nodes, then after some more healing chemo, did 7 out of 12 treatments, colostomy prolapsed, quit chemo early to have surgery, intestines reattached. Onc said no proof doing 5 more treatments of any benefit after such a long break. Went back to school, graduating in June at age 51 with assoc. degree in computer app's, hope I find a job! Been feeling good. Have "spots" on liver, scans every 6 months to check for growth-change, that's coming up June 8th, and hoping for no growth and no more "spots". I suppose I am starting to get nervous already about the upcoming scans, but I am moving right along and hoping for the best. This Aug will be my 6 year mark!
    Pam
  • pf78248
    pf78248 Member Posts: 209
    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
    WinneyPooh Member Posts: 318
    pf78248 said:

    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

    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
  • zenmonk
    zenmonk Member Posts: 198

    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
    charelaine Member Posts: 36
    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.
  • hoya1973
    hoya1973 Member Posts: 37

    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!
  • taipei
    taipei Member Posts: 33 Member
    stage IV roll call
    Dx 06-2003, met to liver and lungs, colon, liver, lungs resection, and twice hernia repairs, Ned since 08-2007, my last visited to onc was March, he told me I am healthy.
    living in Houston since 1969.

    Winnie
  • crazylady
    crazylady Member Posts: 543 Member
    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
  • Paula G.
    Paula G. Member Posts: 596
    Husband DX October 2008.
    Husband DX October 2008. decending colon, many mets in liver, both lungs and right adrenal gland. Had colon surgery in Nov.08 started Chemo FOLFOX + avastin in March 09 on the 8th treatment had reaction to oxy, treatment 9 thru 14 without oxy. Now on XELODA + avastin last scan showed many mets in his right lung to small to measure some shinkage in liver but adrenal glad had minamal growth. Stable in March. His next scan is on June 10th. His CEA has been going up a little every three weeks. Still hopful and doing good most days. Paula
  • taraHK
    taraHK Member Posts: 1,952 Member
    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
  • dorookie
    dorookie Member Posts: 1,731 Member
    Stage 4 survivor
    DX in May 07, age 38, stage 3, came back in my lung Oct 08, 2nd round of chemo, finished in June 09, have been clear so far, have my next scan June 1, 2010, keep me in your prayers.

    God Bless
    Beth

    I got spirit yes I do I got spirit how about You?
  • Beth P
    Beth P Member Posts: 1
    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!
  • lisa42
    lisa42 Member Posts: 3,625 Member
    still fighting and living "normally"
    Dx stage August 2007 at age 41 with IV rectal cancer w/ multiple mets to the liver and both lungs (who knows how many years it had been in me and at what age it actually started growing).
    Had numerous chemo treatments, and rectal radiation along w/ chemo, targeting the rectal tumor.
    Had liver resection May 2008. Never had colorectal surgery, as the rectal tumor completely disappeared and biopsy showed no sign of cancer in the rectum following the chemo/radiation. Just recently had a recurrence in rectum (along with lungs and liver) in Feb. 2010. Have never had any procedures or radiation on lungs- tumors in lungs are too small and too numerous.
    Most recent scan on May 9, 2010 showed all is stable. Started on Gemzar, Xeloda, and Avastin on 3/17/10. Gemzar is considered investigational for colorectal cancer, but a 2006 phase II study at USC/Norris under Dr. Lenz in L.A. showed some good results with this in stage IV patients. I expect good things to come with the next scan!

    No symptoms from cancer- just some from the chemo. I feel pretty good and "normal" most of the time!

    Lisa