Not sure what to do

traci43
traci43 Member Posts: 773 Member
edited March 2014 in Colorectal Cancer #1
I'm on my second recurrance for stage IV colon cancer. Original diagnosis in 2007 had a bit of colon removed and an ovary where it has metastized, then FOLFOX for 12 rounds. had first reccurance 18 months later (12/08) with mets to omentum, and had HIPEC surgery followed by 6 rounds of FOLFOX. Less than 12 months later (10/08), I've got new tumor in abdominal cavity (not attached to anything important) and 3 iliac lymph nodes involved. Two surgeons say no surgery, just chemo. I really trust one surgeon, the other not so much. So now I'm on XELIRI with Avastin (1 week on, 1 week off) and taking supplements prescribed by UCLA doc specializing in nutrition and cancer. First 4 rounds little to no side effects, just some loose stool on day 6-7 and no peeling. Went to New York 12/18--3 days post round 4, and had an awful time---massive blisters on my feet and 10 days of diarrhea. We came home early as I couldn't walk. Saw my medical onc after Christmas and we decided to skip a treatment as I was still having diarrhea and needed to recover from that. My CEA was 4.6 in mid-December and back up to 5.0 in mid-January because of skipping a treatment.

I've started round 5 but at half strength for the Xeloda and Irinotecan. I'm scared that won't do the trick but so worried about another round like round 4. I'm supposed to get a PET Scan next month, but am so worried. Not sure if the drugs are working. In a perfect world, I'd like to get the damn tumor out and the lymph nodes too. Both my HMO surgeon and an outside surgeon say no, so that will be a tough battle.

I still want to fight this but really unsure what to do. Any thoughts? Traci

Comments

  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #2
    Traci
    I can feel that you are worried about the recurrence and whether the treatment will work. While I have not had Xeliri or a recurrence (stll fighting my first round with FOLFOX) I can say that I had a hell of a round #5 that actually made me say to myself that I was going to quit chemo because I couldn't take it if I had another round like that one. Lucily, round #6 was not as bad as round #5 and I am glad that I didn't give up because on the one super tough round. Hang in there. I wish I had more experience to share with you to help. I just want to say that I will be thinking of you and hoping for a nice rebound from your last round and that the treatment works for you.
  • traci43
    traci43 Member Posts: 773 Member
    #3
    Lori-S said:

    Traci
    I can feel that you are worried about the recurrence and whether the treatment will work. While I have not had Xeliri or a recurrence (stll fighting my first round with FOLFOX) I can say that I had a hell of a round #5 that actually made me say to myself that I was going to quit chemo because I couldn't take it if I had another round like that one. Lucily, round #6 was not as bad as round #5 and I am glad that I didn't give up because on the one super tough round. Hang in there. I wish I had more experience to share with you to help. I just want to say that I will be thinking of you and hoping for a nice rebound from your last round and that the treatment works for you.

    thanks!
    I had a really rough round4 as I described above and thought about stopping. Now, I'm glad I just took a two-week break. Hope things go better for you as well. One thing I've learned is that no two rounds are alike. Traci
  • Nana b
    Nana b Member Posts: 3,030 Member
    #4
    traci43 said:

    thanks!
    I had a really rough round4 as I described above and thought about stopping. Now, I'm glad I just took a two-week break. Hope things go better for you as well. One thing I've learned is that no two rounds are alike. Traci

    One foot in front of the
    One foot in front of the other, one chemo in front of the other. You can do it! Rest and drink water. Get up and get dressed each day. I don't know if it helped or not, by I washed my hair as much as I could to get the chemo out of it. I used lash grower to ensure they kept growing out. I just did all I could to keep me up and running..
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #5
    Nana b said:

    One foot in front of the
    One foot in front of the other, one chemo in front of the other. You can do it! Rest and drink water. Get up and get dressed each day. I don't know if it helped or not, by I washed my hair as much as I could to get the chemo out of it. I used lash grower to ensure they kept growing out. I just did all I could to keep me up and running..

    I have a question or two......
    The Iliac...are you referring to the pelvis bone ? and if so you are saying that there are 3 nodes in the pelvis area that light up ? as well as a growth near the abdominal wall ...what is the reasoning to not remove the affected nodes ? or for that matter the growth in the abdomen......Hugs, Buzz
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #6
    Praying
    Just want to say that I'm praying for you.

    *hugs*
    Gail
  • hopeforcure49
    hopeforcure49 Member Posts: 111
    #7
    traci43 said:

    thanks!
    I had a really rough round4 as I described above and thought about stopping. Now, I'm glad I just took a two-week break. Hope things go better for you as well. One thing I've learned is that no two rounds are alike. Traci

    Hang in there Traci!
    You have to take it one day at a time and one treatment at a time. Just keep moving forward. Don't look back, just say to yourself "its going to get better" try everything you can to keep your spirits high. Enjoy a movie or a walk in the Mall. Time with your spouse. I know its hard not to think of whats going on inside you. I have this problem, but I try to psych my self by doing things and keeping myself busy. I hope your treatments are more tolerable. Blessing and prayers your way....Lourdes
  • traci43
    traci43 Member Posts: 773 Member
    #8
    Buzzard said:

    I have a question or two......
    The Iliac...are you referring to the pelvis bone ? and if so you are saying that there are 3 nodes in the pelvis area that light up ? as well as a growth near the abdominal wall ...what is the reasoning to not remove the affected nodes ? or for that matter the growth in the abdomen......Hugs, Buzz

    well...
    Yes the iliac lymph nodes are in the pelvic area, in the back by the tail bone. The reason for not doing surgery is that the lymph noes are outside the peritoneal cavity and the tumor is inside which means that the cancer is systemic and surgery won't get rid of it. In fact, the surgeon that I trust says that as you recover from major surgery the body produces all sorts of stuff (my terminology, not his) to heal which also promotes cancer growth. It's obvious that the only thing that kept the cancer at bay after the HIPEC surgery was chemo. Once I stopped that, it started growing.

    I made the decision to not fight for surgery right now to see what the new chemo drugs would do and to start supplements to boost my immune system to fight off the cancer cells circulating in my system. I'm hoping that the chemo will at least kill the tumors in the lymph nodes and shrink the tumor in the abdominal cavity so that I can hopefully have surgery in the future.
  • Happy Mom of 3 kiddos
    Happy Mom of 3 kiddos Member Posts: 1
    #9
    I am lost too.. my mom was
    I am lost too.. my mom was diagnosed with colon cancer and now it's stage 4 colon cancer and spread to her liver and lungs. She also has emphesemia? She had a bad blood transfusion in the early 90's and contracted Hepititis C and she apparently can't do any more chemo or radiation and we are left feeling very helpless. My mother is 54 years old and I just feel like she's not getting a say.. she doesn't want to go.. So frusterated..
    she was on 4 different types of chemo pills.. it didn't help.. it just spread.. then she took something else.. and it wasn't spreading anymore but it didn't help it go away.. and now were at a stand still because the docs say she can't do chemo or radiation anymore.. what else is there? She says she is looking outside of the U.S for treatment now..
  • traci43
    traci43 Member Posts: 773 Member
    #10
    hopeforcure49 said:

    Hang in there Traci!
    You have to take it one day at a time and one treatment at a time. Just keep moving forward. Don't look back, just say to yourself "its going to get better" try everything you can to keep your spirits high. Enjoy a movie or a walk in the Mall. Time with your spouse. I know its hard not to think of whats going on inside you. I have this problem, but I try to psych my self by doing things and keeping myself busy. I hope your treatments are more tolerable. Blessing and prayers your way....Lourdes

    I'm working on it
    I'm really busy with work right now, so that keeps me busy during the day. We're still working on our money pit of a house, so that keeps me busy on weekends. It's just when I get disappointing news, like a rising CEA that gets me down. I'm hopeful that in 2 weeks, it will be back down, I'll feel great and keep on with the treatments. Thanks for the kind words. Traci
  • traci43
    traci43 Member Posts: 773 Member
    #11
    tootsie1 said:

    Praying
    Just want to say that I'm praying for you.

    *hugs*
    Gail

    Thanks!
    Thanks!
  • traci43
    traci43 Member Posts: 773 Member
    #12
    Happy Mom of 3 kiddos said:

    I am lost too.. my mom was
    I am lost too.. my mom was diagnosed with colon cancer and now it's stage 4 colon cancer and spread to her liver and lungs. She also has emphesemia? She had a bad blood transfusion in the early 90's and contracted Hepititis C and she apparently can't do any more chemo or radiation and we are left feeling very helpless. My mother is 54 years old and I just feel like she's not getting a say.. she doesn't want to go.. So frusterated..
    she was on 4 different types of chemo pills.. it didn't help.. it just spread.. then she took something else.. and it wasn't spreading anymore but it didn't help it go away.. and now were at a stand still because the docs say she can't do chemo or radiation anymore.. what else is there? She says she is looking outside of the U.S for treatment now..

    Sorry to hear about your Mom
    It's very frustrating to hear bad news like that. I hope your Mom finds a treatment that works. My thoughts and parayers are with you. Traci
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #13
    Traci
    Traci,
    I understand your feelings of uncertainty right now. It sounds like you have two good doctors who are plotting a good course for you. I wish I could give you some advice about what to do.
    I am praying for you Traci. I hope some of the worry can go away and you can get some peace.

    Aloha,
    Kathleen

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