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lv2scrap
lv2scrap Member Posts: 44
edited March 2014 in Colorectal Cancer #1
Hi I have been eyeing the boards for about a year and finally decided to jump in. My father is 66, stage iv colon cancer. He has it in his bones and lung. Dx 12/05. I have so many questions and am so confused. He has responded to all chemos until the last. He has had Folfox 4 + Avastin 4 months with very good response. It was dc'd after 11 cycles because of neuropathy.Then Xeloda & Avastin 4 months~CEA began going up. 11/06 Folfuri/Vectabix he developed a very bad rash. The doctor said it was the worst he'd seen but he was responding. 4/07 Erbitux, Camptosar, Leucovorin, 5 Fu it worked after 2nd cycle but then stopped working. The doctor says we're out of treatment options.

My questions are:
1. My dad's CEAs are very high. They started at 1500 went as low as 78 and now have jumped to 800. Any one else experience this? It seems so high.

2. The doctor says we will try starting back with Folfox 4. Has anyone started back on a chemo they have already been on?

3. Has anyone had more than 12 cycles on Folfox 4 and Avastin?

4. Pet scan showed little activity and healing in areas where there had been activity but CEA at 800~ does anyone know what that means?

5. Has anyone been told they are out of treatment options?

I know I have tons of question. I am hope that all of you can give me some insight.

Thank you in advance....

~lv2scrap

Comments

  • Corymcsafe
    Corymcsafe Member Posts: 4
    #2
    Hello Iv; I can only offer a little help here. I've never heard of a CEA going above 100 and that's not to say it can't. I expect what you are seeing is 8.00 as in 8%. My CEA at dx was 34
    .8 Following a colectomy and leukovirun chemo my CEA eventually dropped to 0.0 It took about two years. CEA or CarcinoEmbryonic Antigen measures the level of Cancer antibodies in your blood. It's not a tell all but it is a good bench mark for determing what actions to take. I was fortuante as my CA was found at stage II on a screening Colonoscopy. There are others out here who know a lot more than I do so I hope they will respond as well. Rest assured on one thing, you are not alone in this.

    I know of a lady who was told in July of '06 she was out of treatment options. She sought and found another doctor. He tried an experimental chemotherapy. Today she is cancer free.

    My father was in the first live test of Chemo at NIH in 1972. He was told he had six months to live. He lived another 26 years.

    My point is it ain't over till it's over. Hang in there and don't give up.

    God bless your dad, you and your family

    Cory
  • lv2scrap
    lv2scrap Member Posts: 44
    #3
    Corymcsafe said:

    Hello Iv; I can only offer a little help here. I've never heard of a CEA going above 100 and that's not to say it can't. I expect what you are seeing is 8.00 as in 8%. My CEA at dx was 34
    .8 Following a colectomy and leukovirun chemo my CEA eventually dropped to 0.0 It took about two years. CEA or CarcinoEmbryonic Antigen measures the level of Cancer antibodies in your blood. It's not a tell all but it is a good bench mark for determing what actions to take. I was fortuante as my CA was found at stage II on a screening Colonoscopy. There are others out here who know a lot more than I do so I hope they will respond as well. Rest assured on one thing, you are not alone in this.

    I know of a lady who was told in July of '06 she was out of treatment options. She sought and found another doctor. He tried an experimental chemotherapy. Today she is cancer free.

    My father was in the first live test of Chemo at NIH in 1972. He was told he had six months to live. He lived another 26 years.

    My point is it ain't over till it's over. Hang in there and don't give up.

    God bless your dad, you and your family

    Cory

    Thank you for the info. I just know the doctor said the CEA was eight hundred and before that reading it was 298. Strange numbers, I know.

    I am strong in faith and refuse to freak out.

    Thanks again

    ~lv2scrap
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #4
    lv2scrap said:

    Thank you for the info. I just know the doctor said the CEA was eight hundred and before that reading it was 298. Strange numbers, I know.

    I am strong in faith and refuse to freak out.

    Thanks again

    ~lv2scrap

    Hi There,
    I just wanted to chime in. My onc nurse told me that it is not uncommon for people with advanced cancer to have CEA in the thousands...
    Having said that, I am sorry I really don't have experience with your other questions. Hopefully someone more knowlegable will chime in soon.
    Best wishes for your father and like Cory said, it ain't over till it's over!
    -Susan H.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    Don't have any experience to add, only stage III rectal here...then stage II breast (hummmm, III plus II....did I have stage 5??????).

    Welcome to the site, sorry it has to be this way....there are many stage IV's that will be adding very soon...

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    KathiM said:

    Don't have any experience to add, only stage III rectal here...then stage II breast (hummmm, III plus II....did I have stage 5??????).

    Welcome to the site, sorry it has to be this way....there are many stage IV's that will be adding very soon...

    Hugs, Kathi

    BTW, if this doc is out of options, find another one....I had 5 second opinions on my breast cancer...lol

    Hugs, Kathi
  • lv2scrap
    lv2scrap Member Posts: 44
    #7
    KathiM said:

    BTW, if this doc is out of options, find another one....I had 5 second opinions on my breast cancer...lol

    Hugs, Kathi

    I am thinking about getting a second opinion with City of Hope. The doctor called said his CEA is now up to 976 and that he will put him back on FOLFOX.

    Thanks again,

    ~lv2scrap
  • jerseysue
    jerseysue Member Posts: 624 Member
    #8
    When they found my cancer my cea was 398 after surgery and chemo it went way down. I can use my CEA as a marker. My first treatment was the "norm" 5FU and Avastin. My cancer came back in my stomach and I used the same chemo minus Oxiplantin and used Camptosar. If this onc says that he is out of options contact another and see if they have anything else for him. Lots of luck to you and your family.
  • lv2scrap
    lv2scrap Member Posts: 44
    #9
    jerseysue said:

    When they found my cancer my cea was 398 after surgery and chemo it went way down. I can use my CEA as a marker. My first treatment was the "norm" 5FU and Avastin. My cancer came back in my stomach and I used the same chemo minus Oxiplantin and used Camptosar. If this onc says that he is out of options contact another and see if they have anything else for him. Lots of luck to you and your family.

    Thank you for your thoughts. How are you doing now? Are you getting the rash with Camptosar?

    ~lv2scrap
  • KathiM
    KathiM Member Posts: 8,028 Member
    #10
    lv2scrap said:

    I am thinking about getting a second opinion with City of Hope. The doctor called said his CEA is now up to 976 and that he will put him back on FOLFOX.

    Thanks again,

    ~lv2scrap

    I called City of Hope right after my first diagnosis. Turns out, my insurance wouldn't cover....BUT

    I talked to the nurse/coordinator and she said:

    "Most first rounds of treatment are the same within any given cancer. You can stay with your insurance for this, there is a recommended protocol. When WE shine, is when the first round, the normal treatment protocol, doesn't work completely. THEN, you fight to get here. We are VERY good at being more creative!".

    Hugs, Kathi
  • jerseysue
    jerseysue Member Posts: 624 Member
    #11
    lv2scrap said:

    Thank you for your thoughts. How are you doing now? Are you getting the rash with Camptosar?

    ~lv2scrap

    I've been done with chemo since March and I did not get any rash that normally comes from another chemo that begins with a "E" I can't remember the name of it. I'm in remission for the second time and I get my scan results Tuesday and hopefully still NED.

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