Xelox versus leucovorin/oxaliplatin/5-fu

orthodocswife
orthodocswife Member Posts: 5
edited March 2014 in Colorectal Cancer #1
Thank you for listening to me. I had a tumor removed from my colon last month. It was large but had not grown through the wall of my colon and all lymph nodes were clear. (And everywhere else they checked!) Except for the tumor area, my colon was substantially healthy and I gained back 8 pounds within the next 3 weeks! After reading on the internet, I believe that I had stage 0-1 which accordingly does not require chemo? BUT, at my husbands insistence, and our friend onc, I began the infusion at the office and pump at home; every other week for 6 months. I guess this is a two fold question. Does anyone know of any numbers confirming the effectiveness or not of this regimen for stage 0-1? And if I am going to go though this as "insurance", which regimen, if either, is better or best? I have read enough to know that the Xelox cuts the visits to the oncs office (thus less fees) and although I hope that is not a factor...? After my first, And only, infusion, I was very tired and not hungry so I was interested in the fact that the Xelox changes in the target cells rather than killing all. Any help will be appreciated.

Comments

  • Joy1216
    Joy1216 Member Posts: 290 Member
    #2
    Stage 1 Here
    Welcome to the semi-colon club. I was diagnosed with stage 1 colon cancer three years ago. We weren't sure of the stage until we got the pathologist's report several weeks after surgery. What did your path report say about the stage of your cancer? When I went back to the surgeon for my follow-up visit a couple of weeks after I got out of the hospital, he referred me to an oncologist. When I met with the oncologist, he told me that the standard of care for stage 1 was no chemo, just follow-up colonoscopies and physicals. I've done all the follow-ups timely and had no sign of recurrence. Three years ago there was no indication, according to the onc, that chemo provided any benefit for stage 1. Maybe things have changed. I would suggest talking with your onc about the benefits of chemo for you.
    Joy
  • orthodocswife
    orthodocswife Member Posts: 5
    #3
    Joy1216 said:

    Stage 1 Here
    Welcome to the semi-colon club. I was diagnosed with stage 1 colon cancer three years ago. We weren't sure of the stage until we got the pathologist's report several weeks after surgery. What did your path report say about the stage of your cancer? When I went back to the surgeon for my follow-up visit a couple of weeks after I got out of the hospital, he referred me to an oncologist. When I met with the oncologist, he told me that the standard of care for stage 1 was no chemo, just follow-up colonoscopies and physicals. I've done all the follow-ups timely and had no sign of recurrence. Three years ago there was no indication, according to the onc, that chemo provided any benefit for stage 1. Maybe things have changed. I would suggest talking with your onc about the benefits of chemo for you.
    Joy

    onc on the hot seat
    Joy, thank you so much, I am going to have a heart to heart with him. I haven't seen the path report but will definitely get it. Also, they have already put a port in, yuck it hurts! I am thinking that because I am a docs wife my doctors are overkilling me! All puns intended! But it is difficult for me to go to someone else since I see these guys socially as well. I have no doubt that they have my best interests at heart making it even more difficult. Anyway, I will try to get some statistics as ammo if anyone can direct me there on the web I would appreciate it. T
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #4
    orthodocswife said:

    onc on the hot seat
    Joy, thank you so much, I am going to have a heart to heart with him. I haven't seen the path report but will definitely get it. Also, they have already put a port in, yuck it hurts! I am thinking that because I am a docs wife my doctors are overkilling me! All puns intended! But it is difficult for me to go to someone else since I see these guys socially as well. I have no doubt that they have my best interests at heart making it even more difficult. Anyway, I will try to get some statistics as ammo if anyone can direct me there on the web I would appreciate it. T

    my thoughts
    Hello "orthodocswife",

    I am stage IV diagnosed a little over two years ago. I do happen to know of a handful of people who live near me who also were diagnosed as either stage I or II. The woman who was stage I had her surgery 5 yrs ago and took no chemo & her recent tests showed all clear. However, I know of another person who was diagnosed as stage I- had surgery w/ no followup chemo- lymph nodes were supposedly all clear at the time of surgery, but she now has a spot in her liver that has shown up 2 yrs later & she's now going to have radiation on it and then followup chemo.
    Also, when I was first diagnosed, I was thought to be stage II (the tumor had grown through the bowel wall), but I was told that nearby lymph nodes showed nothing, so they had me at II. Within the week, I had a CT scan (it was supposedly "routine"). Doctors were amazed to discover that my cancer was also in my liver and both lungs- they did not see that coming as I had no symptoms or signs of it having spread. When I asked how that could be when nothing showed up in my lymph nodes, the response was that sometimes colorectal cancer can spread directly through the bloodstream while bypassing the lymphatic system. There's a large blood vessel that goes directly from the rectum to the liver & they said they imagined that's what happened in me. So, in my case checking the lymph nodes and saying I was all clear was innaccurate. If they had caught it at the point where it already spread through my bloodstream, but had not yet gotten into my liver and lungs, then they might not have done any chemo thinking that it was contained just in the rectum. I could have been in a much worse situation than I currently am in (I'm stage IV, but it's being controlled well).
    This very knowledge makes me want to urge ALL stage I or stage II cancer patients to still go forward with the chemo to kill off any possible cancer cells that might be floating around the body. There has to be a fairly large concentration of cancer cells in one place to show up on a scan- there could be cells there that are just too small to be picked up.
    I'm not saying this to worry you, but let you know of what I have learned and to encourage you in that I think it's a very good idea you're going through with the chemo.

    You take care- I'm sure, especially after completing chemo, that you'll be just fine!!

    Hugs,
    Lisa
  • snommintj
    snommintj Member Posts: 601
    #5
    orthodocswife said:

    onc on the hot seat
    Joy, thank you so much, I am going to have a heart to heart with him. I haven't seen the path report but will definitely get it. Also, they have already put a port in, yuck it hurts! I am thinking that because I am a docs wife my doctors are overkilling me! All puns intended! But it is difficult for me to go to someone else since I see these guys socially as well. I have no doubt that they have my best interests at heart making it even more difficult. Anyway, I will try to get some statistics as ammo if anyone can direct me there on the web I would appreciate it. T

    Wow, what a loaded question...
    The best figures I've ever come across is that post surgical chemo patients have a 15-20% less chance of recurrence. How does that translate to you. Well, if you are stage 0 or 1 and had a complete resection with clear margins then you're already 90% in the clear. So 90 out of 100 patients won't have a recurrence. That leaves 10 that will. If all 10 of those patients took chemo, at most it would prevent 2 out of the 10 from their recurrence. So your overall chances of staying cancer free goes from 90 to 92%. That is a fairly narrow increase considering the nastiness of a 6 month stint on chemo. I read a study some time back that said 2 out of 3 cancer survivors that survived 5 years beyond a full cycle of folfox experienced a chronic illness, while the other third experienced more than one. Of the several hundred patients studied, every single one had some form of chronic illness.
    If I were in the same position. I would bypass the chemo. I would definitely keep the port for a few years, I would get scanned every few months and get colonoscopies every year. If i did decide to do chemo, I would go the folfox 6 w/avastin route but only for 4-6 cycles. Good Luck, I'm truly am glad they found yours early. You will do fine which ever you decide.
  • orthodocswife
    orthodocswife Member Posts: 5
    #6
    snommintj said:

    Wow, what a loaded question...
    The best figures I've ever come across is that post surgical chemo patients have a 15-20% less chance of recurrence. How does that translate to you. Well, if you are stage 0 or 1 and had a complete resection with clear margins then you're already 90% in the clear. So 90 out of 100 patients won't have a recurrence. That leaves 10 that will. If all 10 of those patients took chemo, at most it would prevent 2 out of the 10 from their recurrence. So your overall chances of staying cancer free goes from 90 to 92%. That is a fairly narrow increase considering the nastiness of a 6 month stint on chemo. I read a study some time back that said 2 out of 3 cancer survivors that survived 5 years beyond a full cycle of folfox experienced a chronic illness, while the other third experienced more than one. Of the several hundred patients studied, every single one had some form of chronic illness.
    If I were in the same position. I would bypass the chemo. I would definitely keep the port for a few years, I would get scanned every few months and get colonoscopies every year. If i did decide to do chemo, I would go the folfox 6 w/avastin route but only for 4-6 cycles. Good Luck, I'm truly am glad they found yours early. You will do fine which ever you decide.

    Great Information!
    I was just plain ignorant at my first and second visits to the onc. I do remember that he told me at my bedside that if my lymphs were clear that I wouldn't have to do any chemo. When I questioned him about this at our initial office meeting he gave me these statistics: If I didn't take the chemo there was a 51% chance of recurrence. With the chemo, less than 9%. Well, of course that sounded like the better way to go at the time. He also told me that this is the mildest form of chemo there is. My father had a resection and tumor at age 48 [I'm 51} and our family doctor told him if he lived for 5 more years he could consider himself cured. He is now 83 and playing golf 3 times a week! He would do more but my stepmom wants to have a little quality time with him. He never had chemo. And he has never had a chronic illness. Anyway, thank you again for your responses and I guess the first order of business is to get my pathology report. I'll let you know what happens and what I decide to do. Please, anyone else with an experience, talk to me! T
  • snommintj
    snommintj Member Posts: 601
    #7
    orthodocswife said:

    Great Information!
    I was just plain ignorant at my first and second visits to the onc. I do remember that he told me at my bedside that if my lymphs were clear that I wouldn't have to do any chemo. When I questioned him about this at our initial office meeting he gave me these statistics: If I didn't take the chemo there was a 51% chance of recurrence. With the chemo, less than 9%. Well, of course that sounded like the better way to go at the time. He also told me that this is the mildest form of chemo there is. My father had a resection and tumor at age 48 [I'm 51} and our family doctor told him if he lived for 5 more years he could consider himself cured. He is now 83 and playing golf 3 times a week! He would do more but my stepmom wants to have a little quality time with him. He never had chemo. And he has never had a chronic illness. Anyway, thank you again for your responses and I guess the first order of business is to get my pathology report. I'll let you know what happens and what I decide to do. Please, anyone else with an experience, talk to me! T

    stage 2 or 3
    Based on the numbers you gave and treatment options it sounds as though you are stage 2. There has been many studies over the last few years in regards to post surgical chemo for stage 2 patients. The jury is still out but there are indications that chemo is beneficial for completely resected stage 2 patients. I don't know if you misinterpreted my original reply, but I wouldn't expect your father to have a chronic illness because he never completed a full treatment cycle of 5-fu. The chronic illnesses were in 5 year survivors who underwent 5-fu chemotherapy.
  • orthodocswife
    orthodocswife Member Posts: 5
    #8
    snommintj said:

    stage 2 or 3
    Based on the numbers you gave and treatment options it sounds as though you are stage 2. There has been many studies over the last few years in regards to post surgical chemo for stage 2 patients. The jury is still out but there are indications that chemo is beneficial for completely resected stage 2 patients. I don't know if you misinterpreted my original reply, but I wouldn't expect your father to have a chronic illness because he never completed a full treatment cycle of 5-fu. The chronic illnesses were in 5 year survivors who underwent 5-fu chemotherapy.

    Misunderstood
    No, no, no! I meant that my dad had no problems WITHOUT the chemo and possibly had no chronic illnesses because he didn't take chemo. I will find out the stage but from the info I have and the stage descriptions I have 0-1. Could you direct me to the study you mention? Also, I am trying to find a recurrence rate study with/without chemo. Assuming stage 0-1. Thank you so much! T

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