Questions About Lung Mets and Xeloda

rrob
rrob Member Posts: 158
edited March 2014 in Colorectal Cancer #1
Haven't posted here in quite some time because life has been very hectic. I do try to read the posts a couple of times a week to keep up. Long story short: Dx'd 10/07 with Stage IV cc with mets to ovaries. Three surgeries & 6 months of FOLFOX which ended in June 2008. I was NED from Feb. 2008 until Sept. 2009, when extremely small nodes showed up in my lungs in a PET. They were so small that they didn't light up and couldn't be biopsied, but we decided to be aggressive and did 2 mos of 5FU/Avastin to see what happened. There was no change and there were side effects, so we decided to wait and see. Scanned in Feb '10 with minimal change and scanned again this month. I have 5 or 6 nodes (no new), with the largest measuring 7mm, having grown 2 mm in the past 4 months. My CEA in Dec. was 3.9 and was 4.0 in Feb, so it hasn't changed significantly. However, my oncologist, who I love, decided I should take Xeloda and Avastin, so I'll start 2000mg twice a day on Monday. I'd really like input on what to expect. I leave my house between 6:00 and 6:30 to drive an hour each morning to work and get home every night around 7:00 or 7:30. I know lots of you have worked during chemo with no problems, so I feel I should be able to manage this. I just would like some advice/tips from those of you who've been there.

Here's my next question/comment and feel free to respond any way you want, whether it's positive or negative. I love my oncologist. He's young and fairly aggressive. However, when I was first diagnosed and "dying," he couldn't make eye contact with me. Yesterday at my appointment, it was the same thing. Because he was giving me less than good news, he couldn't look at me directly. I could deal with that, but instead of giving me positive ideas such as we can look at resecting my lung or doing some type of cyberknife to eradicate these at some point, he basically just said we'll do this and hopefully it will maintain my status and possible shrink or get rid of some of the mets and then we might be able to take breaks. So he is looking at this as long-term, continuous treatment until I can no longer tolerate the treatment. I am looking for a way to win the war, not just some of the battles.

Should I consider looking for another oncologist or do you think he's simply being realistic and this is what my future holds? Please tell me what you think. I'm not whining (maybe a little bit because I hate chemo), but I really am unhappy with this game plan. I can do this if I feel like we're still fighting, but this feels like surrendering slowly. So today I'm headed to work to catch up on what I missed while I was out for my appointment, but my spirit is bruised and battered and I'm having a hard time holding back the tears. And I feel really shallow and selfish, because I know my problems could be so much worse.

Thanks for any thoughts you feel like sharing.

Rebecca

Comments

  • ktlcs
    ktlcs Member Posts: 358
    #2
    Second Opinion
    I think your last paragraph says it all..You are not happy with this game plan..if your instincts are telling you that you are no competely comfortable and there may be an alternative, than go for it and get that second opinion. You may find it to be the same and then you'll have some peace of mind. Or you may find another way to attack this, in any event a second opinion is painless so why not.

    As far as the Xeloda goes, it's my husband, not I, who has cancer. He has been on Xeloda since October, and has tolerated it very well. He takes 3000 a day (1500 morn/eve) one week on one week off. The worst side effects he has are the dry dry skin, especially on his feet and hands. The literature stressed the importance of taking it within 30 minutes of a meal. I assume to prevent nausea, however hard as I try he sometimes ends up taking it on an empty stomach and has had no real ill effects. It has also, so far proven very effective for him.

    Good Luck



    K
    K
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #3
    My onc, said basically the
    My onc, said basically the same thing to me, his words "I can't cure you, I can just help you feel better."
    So it goes. I still have hope none the less.
    As for Xeloda, it does have an effect on your finger tips and toes, painful when cold. Do your best NOT to use them as much as possible. Don't drive using finger tips, don't stay on computer for great length of time. I have had 6 treatments now with Oxy and Xeloda and two of those (the last two)with Avastin added. Many people complain about cracking and hurting of the fingertips and toes. So far, I've really tried not to over use them and they remain, soft and pliant still. So if it is cold out in the morning before you go out and start the car, make sure you were gloves. It gets better on your week off of the Xeloda.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #4
    xeloda avastin and 'battle plan'
    Hi Rebecca,

    I was on Xeloda plus Avastin before. I found it pretty manageable. I continued to work, although I do have a fairly flexible job (can work from home sometimes). My biggest problem was peely feet (due to Xeloda) -- I like to walk/hike for exercise/pleasure, and that had to be reduced....I didn't have any noticeable side effects from the Avastin. At one point, I was looking at staying on Xeloda indefinitely, as 'maintentance' chemo (and I may be looking at that again, in the future) -- and I was very OK with that.

    In terms of whether you should switch oncologists/seek out a second opinion -- I agree with what others have said -- you have to follow your own heart/gut.

    For me, I have accepted the fact that I will probably never be looking at "cure". At best, I will probably be looking at sometimes being NED, having breaks from recurrence/chemo, and then having time periods when I am on chemo, possibly maintenance chemo, with or without breaks. I am OK with this. I try to look at my medical situation as a chronic health issue, but one which can be managed, and with which I can live for a long time, with a reasonable quality of life. Even tho I am not looking at "cure", my oncologist is still talking about "treatment" - not palliative care, reducing pain, etc. (Of course, that may come in the future - but I ain't there yet!). I don't know if any of this is helpful to you in your situation - -I'm in a slightly different situation -- after my original surgery (Stage III rectal), I had solitary lung met three times, each about 2 years apart. All treated surgically with follow-up chemo. 2 years later, I have bone mets -- small, but several....

    Wishing you all the best with your treatment and with the decisions you are facing.

    Tara
  • walkingnutritionman
    walkingnutritionman Member Posts: 15
    #5
    I can't comment on your
    I can't comment on your particular medication regimen, but I can tell that you can stack the deck more in your favor: If you do not yet have a copy, get a copy of the book Anticancer: A New Way of Life by David Servan-Shreiber, MD, PhD. If you do not yet know his story, he is a physician with a malignant brain tumor treated by chemo and surgery who five years later had a recurrence. Now, 10 years later, using a radical change in his diet based on lots of basic and clinical science research and publications, his tumor is still in his brain but it is no longer growing. The basics of his diet consist of 1) using specific fresh vegetables and fruits and seasonings which are known to have anticancer activity, 2) keeping away from foods high in omega-6 fatty acids (such as farm raised fish (like tilapia); beef, chicken, eggs, and dairy products derived from animals that are fed grains (although if you can find 100% grass fed animals or products from them, they may be OK), and 3) getting most of the carbohydrates in your diet from whole grains and keeping away from sugar and foods with added sugar. In other words, keep away from fast foods, and read labeled ingredients on all foods you eat.

    Please do not give up hope! My wife is now 8 months post-chemo and surgery for stage 4 with mets to the lungs, and now NED; and I am very optimistic about her future now that she is following this diet.
  • chicoturner
    chicoturner Member Posts: 282
    #6
    Rebecca, I understand the "spirit being bruised and battered". I go there myself at times. I am currently on trials with many small, apparently slow growing mets to lungs. My 2nd opinion agrees with my local onc that we are not expecting a cure right now, but, wants to keep it from growing and for me to stay healthy until there are drugs to stop it. Of course I would like to hear "cure", but for now will take just "stopping" it. I do work, however, am off for a short summer. I am a head teacher of a preschool and it is a huge part of what keeps me going. I work for a large church and am blessed with people who support me in so many ways. Don't worry about whinning......this is the perfect place to let it out! We all feel that way some days. Tomorrow will be a better day. You are in my thoughts and prayers. Jean
  • rrob
    rrob Member Posts: 158
    #7
    chicoturner said:

    Rebecca, I understand the "spirit being bruised and battered". I go there myself at times. I am currently on trials with many small, apparently slow growing mets to lungs. My 2nd opinion agrees with my local onc that we are not expecting a cure right now, but, wants to keep it from growing and for me to stay healthy until there are drugs to stop it. Of course I would like to hear "cure", but for now will take just "stopping" it. I do work, however, am off for a short summer. I am a head teacher of a preschool and it is a huge part of what keeps me going. I work for a large church and am blessed with people who support me in so many ways. Don't worry about whinning......this is the perfect place to let it out! We all feel that way some days. Tomorrow will be a better day. You are in my thoughts and prayers. Jean

    Thanks for the input!
    Thanks to all of you for your comments. I'm better today and almost prepared to start the fight tomorrow. I've picked up my prescription and will start the magic pills tomorrow morning. I really do appreciate the words of encouragement. I already watch my diet, having given up all red meat, sugar, and trying to eat organic. I've been backsliding on the sugar the last couple of months as well as not exercising as regularly as I should, but I'm back on track now. I figure it can't hurt to give my body and my immune system every fighting chance I can! Thanks to you all--sweet dreams tonight and best wishes for tomorrow.

    Rebecca

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