Calling All 4's..

13

Comments

  • mikew42
    mikew42 Member Posts: 114 Member
    Dxd Stage 4 Feb. '04 with 8 of 25 nodes positive and three mets to liver. Surgery to remove original tumor March '04, then six months of FOLFIRI with Avastin. RFA in Oct. '04, NED since. Mike
  • oneagleswings
    oneagleswings Member Posts: 425 Member
    Not sure if this post is still active..but anyway..my husband was dx'd June/04 with stage 3 CRC and after 6 mos adjuvant therapy after bowel re-section "graduated" to stage 4 (liver and lungs)...since then
    folfiri/avastin (mixed results)
    xeloda/oxaliplatin (excellent results for a time)
    after some progression will be starting irinotecan/erbitux
    SURVIVAL...over 32 months overall and 19 mos as stage 4..AND COUNTING!!!!!!
    Bev
  • hopefulone
    hopefulone Member Posts: 1,043 Member

    Not sure if this post is still active..but anyway..my husband was dx'd June/04 with stage 3 CRC and after 6 mos adjuvant therapy after bowel re-section "graduated" to stage 4 (liver and lungs)...since then
    folfiri/avastin (mixed results)
    xeloda/oxaliplatin (excellent results for a time)
    after some progression will be starting irinotecan/erbitux
    SURVIVAL...over 32 months overall and 19 mos as stage 4..AND COUNTING!!!!!!
    Bev

    I keep reading these. Not sure if anyone else does. But they all give me great hope. Thanks to Nanuk for posting this call.
  • cheer3
    cheer3 Member Posts: 105 Member
    Nanuk, sorry I am late. I have been in the valley for a while.
    I am class IV.
    Diagnosed 03/11/02 large tumor in cecum, mets to liver positive lymph nodes.
    Rt. hemocollectomy 03/21/02
    Liver resection 05/21/02 with hepatic pump placement(for direct chemo) 60% of liver removed.
    PortACath placement 07/05/025FU/LV started infused over 5 days 10 treatments
    FuDr Direct HA over 16 days at least two months rest between treatments, six treatments
    NED 8/3/03
    I celebrated with three weeks in Hawaii.NED was wonderful.
    0903 I had pump & port a cath removed.
    I had whole body PET scan, CT scan, lab every 3 months. I was also on Liver friendly diet plus no sugar.
    January 26 07 CANCER reappeared, four tumors, within the interaortocaval region at the level of renal arteries.
    I took three weeks, really thinking about what I wanted to do. I felt led to try chemo once more. If it doesn't help me, I pray I help others.
    I am on FOLFOX6 plus Avastin, research drug
    XALIPRODEN.
    I have had three treatments, two weeks apart.
    I will have fourth treatment on 04/09/07
    one week later I will have scans to see if it is working. I have had difficult side effects. My ONC
    does exam, and lab prior to each treatment. I also have consult with research nurse each treatment, as well as Pump off day.
    Thanks for keeping up with us!
  • AlexZ49
    AlexZ49 Member Posts: 1
    Hey - I was diagnosed in Sep 2002 and had colon and liver resection. Participated in a vaccine clinical trial for about a year and a half. My CEA has been all over the lot in the last 5 years. In Sep/Oct of this year I had spots removed from each lung (recurrences but clean margins and no nodes). I've had 4 folfox4 treatments and have 8 to go. Don't like the treatment but I'll keep on truckin. I'd really like some ideas how to deal with the horrible taste in my mouth from the Oxiliplatin. - AlexZ49
  • NeighborJesse
    NeighborJesse Member Posts: 2
    scouty said:

    Currently NED

    Colon perforated Oct 03', cancer missed but given tempy colostomy bag. Rectal cancer with 3 liver mets and 1 lung met found March 04', 16 treatments of Oxil w/leucovorin, 5FU, and Avastin. Chemo stopped working, stopped it on my own and completely changed my diet and started with some alternatives 11/04'. First heard NED 8/05', kept doing alternatives. Surgery Jan 06' to reverse colostomy along with a foot of colon/rectum, lymph nodes, and to check out liver; lymph nodes all clear, liver clean but a tiny tumor was found where the original rectal tumor had been but surgeon got great margins.

    My oncologist says I am now 2 years and 5 months NED (dating back to when chemo was stopped with not recurrances).

    Lisa P.

    The glass IS half full!!
    Hi Lisa P,

    I was very happy to read your profile - you have an amazing and inspiring story...

    My neighbor was recently diagnosed with S4 colon cancer. He is an amazing person as well and his positivity/ will to survive inspired me to write you. Since it seems you have been thru what my neighbor is going thru, would you mind sending me a note?

    If ANYONE has been thru something similar to what my neighbor is going thru, please feel free to share anything one can do to help, both medically and as a friend to a survivor...

    jesse@fusionstorm.com

    Thank you so much - Have a great day!
    -Jesse
  • NeighborJesse
    NeighborJesse Member Posts: 2
    Calling All 4's..
    My neighbor was recently diagnosed with S4 colon cancer.

    He is an amazing person and his positivity/ will to survive inspired me to write you.

    If ANYONE has been thru something similar to what my neighbor is going thru, please feel free to share anything one can do to help, both medically and as a friend to a survivor...

    jesse@fusionstorm.com

    Thank you so much - Have a great day!
    -Jesse
  • ADKer
    ADKer Member Posts: 147

    Calling All 4's..
    My neighbor was recently diagnosed with S4 colon cancer.

    He is an amazing person and his positivity/ will to survive inspired me to write you.

    If ANYONE has been thru something similar to what my neighbor is going thru, please feel free to share anything one can do to help, both medically and as a friend to a survivor...

    jesse@fusionstorm.com

    Thank you so much - Have a great day!
    -Jesse

    Stage IV
    Hello - I am new to this site. I was diagnosed in 2/08 with Stage IV colon cancer, with mets to my liver. I had colon resection and installation of HAI pump 3 weeks later. I have been receiving chemo since the beginning of April. My CEA has decreased from just under 7,000 to just under 50. I am waiting to learn whether my liver tumors have become resectable (the surgeons who must review my info are on vacation) My diagnosis was advanced metastatic disease, a shock since I had limited symptoms, pretty normal liver function and consistently worked as many 10-12 hour days as I needed to. The local doctors who diagnosed me and referred me to a large cancer center could hardly look at me (I am 51 and the mother of 2 daughters who need me) and I don't believe anyone expected me to have the response to chemo that I have had. I have stayed positive (assisted by blissful ignorance in first couple months), exercised consistently, refused to be a victim, and given my cancer treatment the priority that it deserves. While it is still too early for me to declare a victory for the miracles of modern medicine, I am impressed and grateful for the progress that I have made so far. As I struggle to remain positive while waiting to learn whether or not I am eligible for curative surgery, I am also grateful for online communities such as this.
  • impactzone
    impactzone Member Posts: 551 Member
    dx 9/06 with liver mets.
    dx 9/06 with liver mets. Colon surgery and 6 months of chemo (oxy/ xeloda/erbitux ). CEA at 21. Pulmonary embolism 11/06 so blood thinner shots 2 X daily. Liver resection 2/07 followed by 4 months of oxy/xeloda/avastin. Scans find 2 lung mets in 11/07. Lobectomy in 11/07. They recommend no follow up because CEA is less than 1. Currently NED with scans every 4 months. The next one is in Oct. This was all done at Stanford Medical Center in Ca. Good luck all!
    Impactzone
  • krystiesq
    krystiesq Member Posts: 240 Member
    mom stage 4
    Mom DX Nov '07, colon resection, omentectomy, ovaries removed, gall bladder removed, tumors debulked. Currently receiving folfox + avastin. Last scan shows disease stable.
  • ruggersocks
    ruggersocks Member Posts: 78 Member
    Original rectal cancer stage
    Original rectal cancer stage III diagnosed in May 2006. Metasticized 7/07. Stage IV with 1 met to lung and 1 met to liver. Treatment, surgeries, etc from 9/07 - 6/08...12 folfiri treatments, ablation of met to liver, lung surgery. NED as of 8/08 scan.
  • AveriRN
    AveriRN Member Posts: 61
    another 4 here
    Hi guys, recap: dx at 32 in nov 03. Had colon resection, liver resection, chemo (oxaliplatin, 5fu, leucovorin), rads followed by 13 mos of NED during which time i was taking xeloda. Returned in Jan 06 so second liver resection more chemo (cpt-11, avastin). I have been NED since that surgery in 06 but I also continue to take avastin every two weeks for rest of life i've been told.
  • bonzonie
    bonzonie Member Posts: 5
    Praying for NED
    My husband was dx w/colon cancer via colonoscopy 05/02/08. Then two mets to liver by CT the following week 05/06/08 making him a stage IV at diagnosis. CEA 2.7 at dx. with 2.5 being upper limit of normal range at this lab. He had a simulataneous hemicolectomy and liver resection on 06/05/08. One of the liver mets was removed by wedge resection and the other, due to location, by radio frequency ablation. Postop pathology results were clear margins in the colon and liver and 0/34 nodes with disease. He began chemotherapy 07/07/08 with Oxaliplatin and Xeloda, 3 week cycle including the 1 week of rest. He is at the end of cycle 3 of 12. Side effects during first cycle led to a reduction of Xeloda dose from 2000 mg twice a day to 1500 mg twice a day. His white count is falling but hasn't held up his treatment, at least not yet. He is getting 250 mg Oxaliplatin infusions so has a little wiggle room for a dose reduction based on his body surface calulation should it become necessary. He had several episodes of arm pain that led to a total body bone scan a couple of weeks ago but fortunately the results showed no evidence of metastatic disease. His oncologist said they will CT and or PET scan him after three or four cycles to see where he is at and although I'm not sure when that will happen we are hoping and praying he is NED at that time.

    These posts are wonderful and have given me great hope -- Thank you for sharing your stories.
  • rrob
    rrob Member Posts: 158
    Calling All 4's
    I was dx'd 10-07 Stage IV cc with mets to my ovaries. Had surgery 10-30-07 for what was thought to be ovarian cancer; pathology showed colon cancer. Dec 3, 07, back for surgery again for second primary, adenocarcinoma. Began FOLFOX in Jan 08 and finished in June. I am currently NED!!! I have scans in 2 weeks and am praying for more NED time.

    Thanks to all of you for your posts--it is such a source of hope and strength to hear so many survivor stories. I would love to hear if any of you have nutrition, exercise, adjuvant treatments, etc., that you feel have helped. Keep on fighting!

    Rebecca
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    rrob said:

    Calling All 4's
    I was dx'd 10-07 Stage IV cc with mets to my ovaries. Had surgery 10-30-07 for what was thought to be ovarian cancer; pathology showed colon cancer. Dec 3, 07, back for surgery again for second primary, adenocarcinoma. Began FOLFOX in Jan 08 and finished in June. I am currently NED!!! I have scans in 2 weeks and am praying for more NED time.

    Thanks to all of you for your posts--it is such a source of hope and strength to hear so many survivor stories. I would love to hear if any of you have nutrition, exercise, adjuvant treatments, etc., that you feel have helped. Keep on fighting!

    Rebecca

    calling all 4s
    Husband dxd nov 07 surgery rt side tumor perferated colon wall started chemo end of dec oxyplation 5fu lecorvorin (sorry about the spelling of meds) did that for 6 months chemo was over at the end of may 08 had two spots one on the liver and one on the kidney had biopsys and pet scan in july saw doc he said the cancer has spread to the stomach liver and kidney with a new tumor in the sigmoide area of the colon . at first they said he was a 3c but now the doc says he was a stage 4 from the get go. to much cancer everywhere is on erbitux 5 fu and camptosar every week. he has an agressive cancer now. praying that the chemo will work to shrink the cancer will no more in two month after the pet scan.

    angelsbaby
  • Randallfraser
    Randallfraser Member Posts: 1
    Calling all stage 4's
    I was diagnosed June 30 2011 with stage 4 rectal, colon, and 3 mets to liver that dr/surgeon said I had 12 months or so maybe a bit more with treatment. After a few more sessions and questions and then researching him on the grapevine and Internet I then asked my oncologist for another opinion and another dr, I found out that he was old school. The surgeon I went to then was Damien Petersen whom I hold high respect for. He was tuned up with the latest techniques and was extremely knowledgeable, I then found out that I had familial polyposis which is thousands of polyps, I had about 5 tumours in the bowel to rectum and 2 tumours in the liver, prior to this we settled on a house to renovate in may, I was very fit, (I raced a pushbike) I thought I had a hemmaroid and maybe ibs my gp who I cycle with thought it may be a good idea to have a check as I'm nearly at the age they reccomend it. I was 38. I went on oxalyplatin xeloda for 3 mths then had a break for surgery after much debate between my oncologist, bowel surgeon and recommended nick o'rourke (who's father was a brilliant dr) they did the liver surgery first. I kept riding up to this point and had a week in hospital in late sept then in mid dec I had my whole bowel removed and now have an ileo bag they did all this via lap surgery. Went back on chemo oxalyplatin xeloda and now avastin I got back on my bike in feb finding I had lost some fitness....can't work out why.... must be chemo brain.
    I ride when I feel ok which is 1-5 times a month I'm able to do my favorite ride on sat which is about 50k and includes a coffee shop visit the others are about 30k. My fiancé to which I'm eternally grateful to who has supported me through all of this and cried nearly every day ( if I ever saw it I would say my head hurts from the shovel and I'm suffocating from the dirt... Stop it I'm not going to die this is just like a bad flu) Katie has got me up on water skis at Easter. I got NED in may and am having another scan next month.. I still don't think I will die and am almost fully recovered. Ps we finished our Reno and have sold ( I did what I could between chemo sickness and surgery we had some help and i slept a lot, we did a full makeover kitchen, bathroom, floor, paint and I built a deck, I started on that after surgery) DON'T GIVE UP ON ANYTHING!!! FIND YOUR INSPIRATION AND KEEP YOUR MOJO!!
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    I think I'm a 4...
    although my doc has never given me a specific stage. But my cancer is considered metastatic, with lymph node involvement, and multiple spots on the colon, small intestine, peritoneum, and in the abdominal cavity between the uterus and rectum. I've done FOLFOX, Avastin, and carbo-taxol, none of which were effective, and many surgeries. Dx Sept. 2009, finally got a NED scan March 2012.
    EDIT: Just saw the date on the original post...oops!
  • abackhou
    abackhou Member Posts: 77 Member
    Stage 4
    Dx Stage 4 April 2009 with metasastic disease to colon, liver and lungs. Had primary tumour removed. Completed chemo -oxil,zeloda, avastin and erbiutx. Kept tumours under control but from Nov 2011 increased met disease evident. No further treatment and enjoying quality life, having symptom management. Currently under Silver chain home nursing and NO MORE hospitals. Have decided to die at home under peaceful settings and with loved ones around me...

    Best wishes to all....Andrew
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    abackhou said:

    Stage 4
    Dx Stage 4 April 2009 with metasastic disease to colon, liver and lungs. Had primary tumour removed. Completed chemo -oxil,zeloda, avastin and erbiutx. Kept tumours under control but from Nov 2011 increased met disease evident. No further treatment and enjoying quality life, having symptom management. Currently under Silver chain home nursing and NO MORE hospitals. Have decided to die at home under peaceful settings and with loved ones around me...

    Best wishes to all....Andrew

    Dx stage 3b, Radiation,
    Dx stage 3b, Radiation, xeloda then rectum removed perm ostomy, 7 nodes positive. Oxy f5u 12 rds after surgery...ok for 6months then mets to lungs (7). On cpt11, Avastin and have shrank nodules. Getting 1st lung surgery in July.
  • John23
    John23 Member Posts: 2,122 Member
    There is nothing worse......

    Than answering a post to those that are deceased.

    This is an old, old thread....... Please check dates before responding?

    Best wishes,

    John