just starting chemo & scared

bearhollow
bearhollow Member Posts: 1
edited March 2014 in Emotional Support #1
I have been through a lot this past month, certainly noting I expected. Had 2 colonscopies and path reports came back negative although my local Dr. sent me to Mayo Clinic becasue of what he feared to be familial polyposis. I had genetic testing and it proved to be negative,but due to the large amount of polyps on the colon I was told I needed surgery. I had my entire colon removed. The plan was to make a J-pouch out of the samll intestine and reverse the ilestomy in about 3-4 months. When the surgeon was in there, he removed the colon but also removed the rectum as there was a large cancerous tumor there. He also removed 49 lymph nodes and fortunately, only 1 was affected. I had the MRI, the CAT scan and a PET scan and they all came back looking great. I was told I need to take 6 months of chemo as a preventative. I am having my port installed on Mon. and begin treatments on May 4th. One of the drugs they are giving me can cause neuropathy. That scared me. Tingling in toes and fingers, must drink all my liquids at room temp. I'm just on overload.

Comments

  • Cindy Bear
    Cindy Bear Member Posts: 569
    #2
    Not sure
    Hi there. I am so sorry you have to be here and I can imagine how overwhelmed you must feel right now. So what kind of cancer do you have?Colon or anal? Are you stage I?? You might be better off visting the colon or anal cancer discussion boards. Maybe they can give you more insight. I have not had cancer, was a caregiver to my mother who had uterine cancer. She was stage IV, not a candidate for surgery at first, and passed away 4 mos. into treatment . She had taxol and carboplatin. I would certainly seek out a second opinion before I got any chemo. I admit I have no medical training but it seems to be from everything I've read, heard and experienced (not just with my mom) that chemo is not a "preventative or safety net or insurance policy" for anything. Please ask them what chemo will give you as far as % of recurrence with chemo and without. Good luck with whatever decision you make.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #3
    Cindy Bear said:

    Not sure
    Hi there. I am so sorry you have to be here and I can imagine how overwhelmed you must feel right now. So what kind of cancer do you have?Colon or anal? Are you stage I?? You might be better off visting the colon or anal cancer discussion boards. Maybe they can give you more insight. I have not had cancer, was a caregiver to my mother who had uterine cancer. She was stage IV, not a candidate for surgery at first, and passed away 4 mos. into treatment . She had taxol and carboplatin. I would certainly seek out a second opinion before I got any chemo. I admit I have no medical training but it seems to be from everything I've read, heard and experienced (not just with my mom) that chemo is not a "preventative or safety net or insurance policy" for anything. Please ask them what chemo will give you as far as % of recurrence with chemo and without. Good luck with whatever decision you make.

    Many times the neuropathy goes away after chemo.
    (((hugs))). I had Neuropathy in 2 toes on each foot during the time I took chemo, but it went away 100% once I got off chemo. (I took carboplatin/pacitaxol every 3 weeks for 6 rounds.) When I had to go back into chemo for a suspected recurrence, I took 10 rounds of weekly pacitaxol (sp??) which is known to cause neuropathy, but I didn't have it at all with the 2nd line chemo.

    PS: I am currently in remission, ...at least until May 17th when I get my next CT/PET scan and see how I'm doing.

    PSS: I'm guessing that 1 involved lymph node is why they are suggesting adjuvant chemo. I had 1 out of the 25 lymph nodes they removed contain microscopic cancer cells. That was enough to suggest that my cancer was trying to spread.

    PSSS: a second opinion from another oncologist before taking chemo is a good idea.

    PSSSS: (((hugs)) again because cancer sucks.
  • Trapbear
    Trapbear Member Posts: 108 Member
    #4
    Please go to the colorectal
    Please go to the colorectal cancer board. There are many who have gone through what you are about to. You will do fine, there are many drugs to combat the worst side effects of chemo. My husband did the chemo you are going to do 18 months ago. Take care and hang in there, you will get through this.
    Bill
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #5
    Scared
    Of course you are scared. You have been through a lot and don't really know what to expect. My husband did get some neuropathy from his chemo but you do learn to adjust to it. Most of it went away after he stopped it. I to would encourage you to check out the colorectal board. They are very active and very supportive. Hang in there. Fay

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