Remission

kaitek
kaitek Member Posts: 156 Member
edited March 2014 in Lung Cancer #1
My mother will be off chemo in a couple of weeks. As there is always a chance that cancer can return, I'm curious as to whether the survivors with cancer in remission are on any maintenance program - whether prescribed by doctors or not sanctioned by them.

From Ernie's messages, I've gathered he still adheres to a supplemented healthy diet, along with Tarceva. Please correct me if I read incorrectly Ernie.

I've learned that during the first year, survivors are on a 3-month checkup schedule which gets more infrequent after a year. Is there anything else to keep the cancer away?

Comments

  • ernrol
    ernrol Member Posts: 90
    #2
    Kaitek,
    As you know I was given Tarceva along with Carboplatin and Taxol from the beginning. Even though Tarceva has been around for a few years there is a lot they do not seem to know about it. Most people that ask their doctor after I mention it to them get the reply that they are saving it for a second line defense. I asked my oncologist this week as to why he started me on it when this is not the way it is recommended. He told me that Tarceva works best after the chemo has reduced the cancer to a smaller size, then Tarceva will work best. He said that he thought that if I was taking it from the beginning then it would do its work when ever it was able, without missing some time between chemo and Tarceva. I guess the Tarceva could start to work before you stop the chemo treatment. When you get the first scan that shows no cancer all you know is the cancer went into remission sometime between you last PET scan and today. So in my case the chemo could have reduced the cancer down to the point where Tarceva started to work as long as four months prior. I was given a PET scan in July 2005 and did not have the nest PET scan till November 2005. I only had a CT scan in between that showed shrinkage but did not tell you whether it is cancerous or not.

    Now we get to where I went into remission. I have never been taken off the Tarceva because I was told that since I have no adverse reaction to the Tarceva or any of the other chemo that they wanted to leave me on it and it would now be used as a preventive drug. As to the diet and supplements I have stayed on what I was taking and added some things as I go. I should point out every supplement that I take has been done with the approval of my oncologist, with some not being taken within 24 hours of the chemo. My first two scans were 3 months apart then the next one will be 6 months, due November 1, 2006. I just took an MRI of the brain. This was mainly for the FAA in order to get my pilots medical back. I feel that there was a reason that I got cancer in the first place, so going back to the same way of life will do me no good. I suppose I have become somewhat paranoid. I have a system that removes all chlorine from the water in the entire house and a pool that does not have chorine in it when I go use it. I also drink lots of Mountain Valley Water because it is alkaline not acidic.

    An interesting thing my oncologist told me is that most doctors do not use Tarceva the way it was used with me is because they do not have any proof that it will work. They only know about clinical trials, so cases like mine are never known by the general public. He said the only people that will know are the ones he tells and that I tell. Seems to me we have a communication problem in the medical profession. Interesting point if you go to clinical trials on Sloan Kettering web site you will see that they are now doing a clinical trial with Carboplatin, Taxol, and Tarceva as a first line treatment. Sorry for the length, but I did not want to leave any thing out that may help someone.
    Ernie
  • kaitek
    kaitek Member Posts: 156 Member
    #3
    ernrol said:

    Kaitek,
    As you know I was given Tarceva along with Carboplatin and Taxol from the beginning. Even though Tarceva has been around for a few years there is a lot they do not seem to know about it. Most people that ask their doctor after I mention it to them get the reply that they are saving it for a second line defense. I asked my oncologist this week as to why he started me on it when this is not the way it is recommended. He told me that Tarceva works best after the chemo has reduced the cancer to a smaller size, then Tarceva will work best. He said that he thought that if I was taking it from the beginning then it would do its work when ever it was able, without missing some time between chemo and Tarceva. I guess the Tarceva could start to work before you stop the chemo treatment. When you get the first scan that shows no cancer all you know is the cancer went into remission sometime between you last PET scan and today. So in my case the chemo could have reduced the cancer down to the point where Tarceva started to work as long as four months prior. I was given a PET scan in July 2005 and did not have the nest PET scan till November 2005. I only had a CT scan in between that showed shrinkage but did not tell you whether it is cancerous or not.

    Now we get to where I went into remission. I have never been taken off the Tarceva because I was told that since I have no adverse reaction to the Tarceva or any of the other chemo that they wanted to leave me on it and it would now be used as a preventive drug. As to the diet and supplements I have stayed on what I was taking and added some things as I go. I should point out every supplement that I take has been done with the approval of my oncologist, with some not being taken within 24 hours of the chemo. My first two scans were 3 months apart then the next one will be 6 months, due November 1, 2006. I just took an MRI of the brain. This was mainly for the FAA in order to get my pilots medical back. I feel that there was a reason that I got cancer in the first place, so going back to the same way of life will do me no good. I suppose I have become somewhat paranoid. I have a system that removes all chlorine from the water in the entire house and a pool that does not have chorine in it when I go use it. I also drink lots of Mountain Valley Water because it is alkaline not acidic.

    An interesting thing my oncologist told me is that most doctors do not use Tarceva the way it was used with me is because they do not have any proof that it will work. They only know about clinical trials, so cases like mine are never known by the general public. He said the only people that will know are the ones he tells and that I tell. Seems to me we have a communication problem in the medical profession. Interesting point if you go to clinical trials on Sloan Kettering web site you will see that they are now doing a clinical trial with Carboplatin, Taxol, and Tarceva as a first line treatment. Sorry for the length, but I did not want to leave any thing out that may help someone.
    Ernie

    Ernie,

    Thank you very much for your in-depth reply. I actually can't get enough of details so never apologize for length (or else I would have to attach a signature tag to each of my message of apologizing for its length!!).

    My mother is scheduled for her first CT scan next week since the first one with the PET scan. I know that the CT scan won't be 100% precise. Her oncologist said that it doesn't pick up image of cancer in bone very well. So even when the CT scan shows no tumor, I'll still wonder about the stray cancer cells dividing and replicating and building resistance. I plan on asking him on what kind of maintenance she will be put on to work on the trace cancerous cells. I have Tarceva in mind. It's reported to work very well on Asian women anyway, especially those who have never smoked. Since she had the EGFR mutation test, I will ask about that when chemo is over and we discuss the next phase of managing the cancer.

    You say there was a reason you got cancer, I have suspicions of the causes for my mom's cancer besides second-hand smoke (which we've eliminated). I believe there may be something to the heating of cooking oils to extremely high temperatures where you can smell its fumes. I've never liked my mom deep-frying, which she seemed to love to do. The irony is that I hate deep-fryed foods. I'm not even that crazy about fried chicken. Since I've taken over cooking duties, no more deep-frying. And I'm cooking mostly over medium-high heat, and trying substituting chicken broth to cook some of the foods instead of oils. (Though I think some vegetable oils are actually healthy because of their monounsaturated and polyunsaturated fats, particularly olive oil and canola oil; canola oil also has moderate amounts of omega-3s.)

    I don't like the tap water even though our city has among the cleanest municipal water in the country. So, I've been buying my mom purified water. And I'm planning on buying a new refrigerator which side-by-sides now have filtered water.

    On the clinical trial of Taxol, Carbo and Tarceva, I believe I came across an article on the research that it has an even better effective rate than Taxol and Carbo alone. The details are sketchy as I get information overload with reading all the latest cancer news on the Shand website.

    Thanks again for enlightening me about your experience with Tarceva. Continued success with your entire regiment and health. You are a good role model in being proactive in the battle with cancer. And oh yeah, your oncologist ain't half bad either. ;-)
  • Plymouthean
    Plymouthean Member Posts: 262
    #4
    I had nsclc, 3a. I'm coming up on 5 years out from surgery. I'm still cancer free. Post-op, I had ten radiation treatments and twelve weekly chemo treatments (Carboplatin/Taxol), as insurance against recurrence.
    In the five years since surgery, I have not been particularly careful about my diet. I eat just about anything I like, except for fried foods, which don't agree with me. I take one multivitamin and two iron pills each day. Any other medications that I take are disease specific, - heart, etc.
    None of my doctors have a problem with my diet, except that I should lose a few excess pounds. (Is anyone ever at the "ideal" weight?).
    I just thought that I would throw in another perspective on diet.
  • kaitek
    kaitek Member Posts: 156 Member
    #5
    Plymouthean said:

    I had nsclc, 3a. I'm coming up on 5 years out from surgery. I'm still cancer free. Post-op, I had ten radiation treatments and twelve weekly chemo treatments (Carboplatin/Taxol), as insurance against recurrence.
    In the five years since surgery, I have not been particularly careful about my diet. I eat just about anything I like, except for fried foods, which don't agree with me. I take one multivitamin and two iron pills each day. Any other medications that I take are disease specific, - heart, etc.
    None of my doctors have a problem with my diet, except that I should lose a few excess pounds. (Is anyone ever at the "ideal" weight?).
    I just thought that I would throw in another perspective on diet.

    Thank you Plymouthean for your contribution. People should know that they can survive without much tinkering of their daily routines. I don't want anybody to think they are shortchanging themselves if they aren't as diet-obsessed as I.

    My mom's oncologist would completely endorse your diet, as he advised my mom to eat anything. His main concern is getting any nutrition. So, whether it is in the form of sugar, red meats, refined carbohydrates, he wouldn't be alarmed. It's more important to keep the weight on and get one's nutrients.

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