New to this...

Keisler69
Keisler69 Member Posts: 18
in Colorectal Cancer #1

The begining of this year I started having some dull pains that came and went in my left side. Didn't think much of it until after a few months and my testicle swole. My fiancée pushed for me to be seen by her family doctor. That lead to a CT scan which showed inflammation and thickening of the colon. The doc then did a CEA blood test, Normal. A colonoscopy followed. he couldnt go past the tumor that was growing in my transverse. He took a biopsy which came back normal. I was referred to a surgeon due to the size and he did a colon resection, taking out a foot of my colon, all tumor. The biopsy came back, Stage III. I am going to the oncologist in the morning, just wondering if anyone else has been through anything similar... Confused, Nervous, but Determined to beat this "C" word!!!!

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Comments

  • ron50
    ron50 Member Posts: 1,723 Member
    #2
    Hi Keisler 69.

      I was dxed with stage 111 c of the transverse and sescending colon in Jan  1998 . I had a year of chemo after surgery and have been ca free ever since. Sometimes we get lucky , best wishes Ron.

  • blessed39
    blessed39 Member Posts: 90 Member
    #3
    New rto this

    I have been through something very similar to what you described. I have written a short story about my experience

    entitled "How I Beat Stage Four Colon Cancer." If you want to read it, just go to my page and click on blog. blessed39

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #4
    Lymph nodes

    Did they mention if any of the lymph nodes were involved?  That has an impact on your prognosis.  By now you have seen the oncologist who likely recommended chemo.  There are many useful posts on this board on that topic.  I am both new to this and in a similar position to you. 

  • Keisler69
    Keisler69 Member Posts: 18
    #5
    SandiaBuddy said:

    Lymph nodes

    Did they mention if any of the lymph nodes were involved?  That has an impact on your prognosis.  By now you have seen the oncologist who likely recommended chemo.  There are many useful posts on this board on that topic.  I am both new to this and in a similar position to you. 

    When it comes to the tumor it

    When it comes to the tumor it was 6/19 in the tumor itself and nodules on both lungs (no lymphnode count from the biopsy), but it moved it to Stage IV. Started Chemo Monday, took the 46 hr bag off today.... how about you?

  • Keisler69
    Keisler69 Member Posts: 18
    #6
    ron50 said:

    Hi Keisler 69.

      I was dxed with stage 111 c of the transverse and sescending colon in Jan  1998 . I had a year of chemo after surgery and have been ca free ever since. Sometimes we get lucky , best wishes Ron.

    What treatment did you

    What treatment did you receive?

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #7
    There are several stage 4

    There are several stage 4 members on here who are living a long time despite the diagnosis. My CEA was always normal until now that I have mets in one lung and it's still only 6, which is still within normal range. Like you, they couldn't complete my colonoscopy because of the tumour. I was just about toattly blocked off. I'd have probably had problems much sooner and the cancer would have been discovered much sooner if I hadn't always had IBS which gave me constant diarrhea so I didn't realize I was almost blocked off. Plus I always had blood so no indication there, either.

    What chemo are they putting you on? You did the 5FU chemo that you carry around with you? Did they give you a port?

    Jan

  • ron50
    ron50 Member Posts: 1,723 Member
    edited June 2017 #8
    Keisler69 said:

    What treatment did you

    What treatment did you receive?

    An old regime

      Ihad 5 fu every tuesday via a canula for 48 weeks . Every second weeks It was enhanced with 9 tablets of levamisole , three a day for three days after chemo.. Levamisole was banned in the US in 2001 for often fatal side effects and in their words the availability of improved and better alternatives. Ron.

  • EissetB
    EissetB Member Posts: 133
    edited June 2017 #9
    I was diagnosed with stage

    I was diagnosed with stage IIIc and will have my 5th infusion on Friday. The cocktail will stay with me for 46 hours. Long hours of agony. Jaw spasm and cold sensitivity again. Sigh!! How long are you be on chemo? Hopefully not for long.

  • Keisler69
    Keisler69 Member Posts: 18
    #10
    JanJan63 said:

    There are several stage 4

    There are several stage 4 members on here who are living a long time despite the diagnosis. My CEA was always normal until now that I have mets in one lung and it's still only 6, which is still within normal range. Like you, they couldn't complete my colonoscopy because of the tumour. I was just about toattly blocked off. I'd have probably had problems much sooner and the cancer would have been discovered much sooner if I hadn't always had IBS which gave me constant diarrhea so I didn't realize I was almost blocked off. Plus I always had blood so no indication there, either.

    What chemo are they putting you on? You did the 5FU chemo that you carry around with you? Did they give you a port?

    Jan

    FolFox and Avastin every 2

    FolFox and Avastin every 2 weeks for 6+ months depending on how the treatment does. The 5fu is 46 hours after I finish the treatment there. The only symptom I had with the tumor was a pain in my side that would come and go, no big deal... got an appointment with my family doctor and after a couple tests here I am .... what treatments were you on?

  • Keisler69
    Keisler69 Member Posts: 18
    #11
    Keisler69 said:

    FolFox and Avastin every 2

    FolFox and Avastin every 2 weeks for 6+ months depending on how the treatment does. The 5fu is 46 hours after I finish the treatment there. The only symptom I had with the tumor was a pain in my side that would come and go, no big deal... got an appointment with my family doctor and after a couple tests here I am .... what treatments were you on?

    And I have a port...

    And I have a port...

  • Keisler69
    Keisler69 Member Posts: 18
    #12
    EissetB said:

    I was diagnosed with stage

    I was diagnosed with stage IIIc and will have my 5th infusion on Friday. The cocktail will stay with me for 46 hours. Long hours of agony. Jaw spasm and cold sensitivity again. Sigh!! How long are you be on chemo? Hopefully not for long.

    What treatments are you on?

    What treatments are you on?

  • Keisler69
    Keisler69 Member Posts: 18
    #13
    ron50 said:

    An old regime

      Ihad 5 fu every tuesday via a canula for 48 weeks . Every second weeks It was enhanced with 9 tablets of levamisole , three a day for three days after chemo.. Levamisole was banned in the US in 2001 for often fatal side effects and in their words the availability of improved and better alternatives. Ron.

    Wow!!!! Glad you are ok

    Wow!!!! Glad you are ok

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #14
    Keisler69 said:

    And I have a port...

    And I have a port...

    I had 5FU before surgery to

    I had 5FU before surgery to try to shrink the tumour and Folfox after surgery. Then Vectibix earler this year to try to get rid of the mets in my lung. Now I'm on Xeloda because I reacted so badly to the Vectibix. CT scan this coming Monday so we'll see what's happening once I get my results the following Thursday.

    I had a port initially. I had the 5FU in a bottle I carried around attahced to the port. The port was removed over a year ago. I hated it. It was sitting on top of bone and was very tender. Then it started to come through the skin and it had to go. I had a really interesting scar for a while with a dent in it. People would stare at it. It's finally filled in pretty well. 

    Jan

  • ThomasH
    ThomasH Member Posts: 106 Member
    #15
    Sorry to hear about your Dx

    Sorry to say welcome to the club Keisler. I had similar trouble getting my positive diagnosis for a while too. I had a couple CT scans that like you, showed a "Thickening" in the intestine. In my case they initially thought it was Crohn's disease, so that is what they treated me for until I had a full blockage 6 months later. I was lucky that my surgeon was an oncological surgeon and he knew what he was looking at as soon as he opened me up. 6 weeks later my biopsy came back and I was stage 4. I've had 12 rounds of FOLFOX and 2 surgeries.

    I'm waiting to hear the results of my CT scan from Tuesday but so far so good. I think it is possible to beat the C thing. There are lots of inspirational people here who are living proof of that.

  • Keisler69
    Keisler69 Member Posts: 18
    #16
    ThomasH said:

    Sorry to hear about your Dx

    Sorry to say welcome to the club Keisler. I had similar trouble getting my positive diagnosis for a while too. I had a couple CT scans that like you, showed a "Thickening" in the intestine. In my case they initially thought it was Crohn's disease, so that is what they treated me for until I had a full blockage 6 months later. I was lucky that my surgeon was an oncological surgeon and he knew what he was looking at as soon as he opened me up. 6 weeks later my biopsy came back and I was stage 4. I've had 12 rounds of FOLFOX and 2 surgeries.

    I'm waiting to hear the results of my CT scan from Tuesday but so far so good. I think it is possible to beat the C thing. There are lots of inspirational people here who are living proof of that.

    Prayers that you have this

    Prayers that you have this beat! How did you respond to all of your treatments?

  • ThomasH
    ThomasH Member Posts: 106 Member
    edited June 2017 #17
    Keisler69 said:

    Prayers that you have this

    Prayers that you have this beat! How did you respond to all of your treatments?

    Well, I like to think of it as a positive response

    For my origional surgery where they removed the blockage, they also found a bunch of small tumors in the peritonial tissue and some on the lymph nodes. There was also one more tumor in another location on my small instestine that they couldn't remove at the time because I was just too inflated from the blockage. The tissue was too distressed to safely do anything with. I got my ileostomy as part of that process, and started my chemo after that. I did good with my chemo for the most part. It gave me a fever every time and I still have some lingering neuropathy and brain fogginess, but not as bad as what other people are enduring I don't think.

    I had my second surgery in January this year. I'm really pleased to report that aside from the one tumor that was on the small intestine, there was nothing else to see according to the surgeon. The part I remember most about the day was the way the surgeon raised his eyebrows and said "Wow, you really responded well to the chemo". It was the same reaction with my Onc when she read the surgical report, so that leads me to 2 conclusions. First, it was a surprise to see that sort of response, and 2, it must have been a good treatment because they couldn't see any more cancer visually. I've since had a clear PET scan about a month ago and I am waiting to hear back on by CT scan from Monday.

    I'm expecting a clear scan though. So far that is about as positive as I think you can get. I sure don't want to let my guard down though. The thought of a relapse is always in the back of my mind like a persistent anxiety. Not enough to wreck my life, but I can always feel it.

    I pray that everyone on here could have a response like that.

  • EissetB
    EissetB Member Posts: 133
    #18
    Stage IIIc

    Kessler, I am on FOLFOX and will stay on for 7 more sessions. My white blood cells count is low this time (again) so they're going to give me a shot of Neulasta on Sunday after taking off the pump. Jaw spasm is back again. Sigh. Then cramps on my right foot.

  • EissetB
    EissetB Member Posts: 133
    #19
    Sorry

    ° I mean Keisler. My honest mistake, sorry :(

  • Keisler69
    Keisler69 Member Posts: 18
    edited June 2017 #20
    EissetB said:

    Stage IIIc

    Kessler, I am on FOLFOX and will stay on for 7 more sessions. My white blood cells count is low this time (again) so they're going to give me a shot of Neulasta on Sunday after taking off the pump. Jaw spasm is back again. Sigh. Then cramps on my right foot.

    I go back Thursday to see my

    I go back Thursday to see my doc and do blood work to see where my counts are. I haven't had any major side  yet, how many treatments in all are you doing?

  • cindy14
    cindy14 Member Posts: 1
    #21
    I go for my port tomorrow....

    I am so nervous about all this! to much all at once! I was stage 1 in 2014 had surgery nothing in my lymph nodes it was all good. fast forward to april 2017 i go for my routine blood work no go cea was 21! CT scan reveled 2 lymph nodes in my pelvis with tumors. i can't do surgery at this time so a port and chem it is. i am extremly nervous and anxious about all this. I couldn't bring myself to agree to all this with my dr.......Am i being overly ridiculous here?! I am afraid of how i'll react to treatment as far as symptoms go is my worst fear i suppose............HELP!

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