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rustiroo
rustiroo Member Posts: 4
edited March 2014 in Breast Cancer #1
new to the site... Im in Stage IV Breast cancer, trying to find some answers. diagnosed in 95 with reoccuerences in 99, 03 & 05 currently in radiation... The Doc doesnt know how to procede.. I have allergies to several chemos (CARBO, Xeloda) as well as Taxane products (taxol, taxitere & Abraxane) not showing significant help
my tumor marker has been climbing and is at 192 at my last appointment. Not sure what to do.. where to go.. Do I change docs?? I am a bit lost. The cancer has been found in my hip, 2 places in my spine, my adrenal gland and in the lining of my lung (although my lungs were clear on my last PET scan) I am not willing to accept that nothing can be done. Can anyone give me some advice or just a sholder??
thank you!

Comments

  • drenna
    drenna Member Posts: 8
    #2
    Rustiroo,
    If I were in your situation I would go to Doc after Doc. Second third fourth opinions. Find the Doc. that gives you the solution YOU want. Keep a positive attitude. Keep fighting the fight. Walk in faith and know I am praying for you. drenna
  • ktinkey
    ktinkey Member Posts: 170
    #3
    Hi,

    I just want to give you hope. I too am a Stage IV Breast cancer SURVIVOR. I was diagnosed as Stage IV in 1999, had a relapse in 2001, but am doing great now. No active cancer at this time and I believe I am cured. Of course, the oncologist just says I am stable at this time, but I know how I feel. I don't recommend this to anyone else, but I never took chemo. My cancer was hormone positive, so I took radiation and tamoxifen until that failed, then switched to Femara after having my ovaries removed. I joined a trial in which I took shots to boost my immune system, so my body could fight the cancer on its own. The trial was discontinued for poor results, but I had fantastic ones. I take a lot of natural vitamins and have great faith. It has not been an easy walk, but one that has worked for me. I am not suggesting that you do what I did, but just check out other options. Ask your oncologist for a listing of trials or go online and research them. If you don't feel comfortable with your oncologists assesment, by all means ask for a second opinion. There is so much research going on out there right now and another doctor may know of something that yours does not. We somehow feel that all doctors get the same training and info, etc., but that is far from the truth. Take charge of your health and find a doctor that cares very deeply about you too. I am very blessed, because my oncologist and I have been right in step with each other. She takes the time to answer all my questions and explains why something I propose is right or not right for me. Do you get a copy of CURE magazine? That is very helpful because it is written in easy to understand language and contains useful articles.

    I am sorry to be so long, but just know I will be praying for you and you can email me here at the site, just click on the envelope under my message and I will be glad to talk with you more. Stage IV is scary, but it is not an automatic death sentence. We are all here for you. Keep the faith and keep fighting. My oncologist told me once that her plan was to keep me alive long enough that they would find a cure because of all the research and new techniques. Keep that upper in your mind and remember me - I am still here and doing VERY well after 7 years!!

    God Bless,
    Kathy
  • epgnyc
    epgnyc Member Posts: 137
    #4
    I'm so sorry you're having such a tough time. I would definitely seek help elsewhere since your current doctor seems stymied. I suggest contacting one of the major cancer centers like M.D. Anderson in Texas or Memorial Sloan-Kettering in NY for example. These center have so much experience and the most up-to-date information on treatments. Someone I know was in a similar situation for another type of cancer and had their doctor send all their information to M.D. Anderson. You might have to make a trip there to consult with their doctors, but once a treatment protocol has been set you can be treated in your local area. Good luck and don't give up hope!
  • Susan956
    Susan956 Member Posts: 510
    #5
    I agree with getting a second opinion and with trying to get the assistance of a major cancer center. Where I live one of the hospitals and a group of the Doctors are M.D. Anderson associated. In other words they are lined up to treat based on M.D. Anderson protocols when warrented and it is set up where when you need to go to M.D. Anderson you do, but when you can be treated locally that is what is done. I was only Stage II and didn't need the M.D. Anderson assistance but I met many in treatment who did you the combination and they were very pleased with the results.

    Take Care... God Bless...
    Susan
  • drenna
    drenna Member Posts: 8
    #6
    epgnyc said:

    I'm so sorry you're having such a tough time. I would definitely seek help elsewhere since your current doctor seems stymied. I suggest contacting one of the major cancer centers like M.D. Anderson in Texas or Memorial Sloan-Kettering in NY for example. These center have so much experience and the most up-to-date information on treatments. Someone I know was in a similar situation for another type of cancer and had their doctor send all their information to M.D. Anderson. You might have to make a trip there to consult with their doctors, but once a treatment protocol has been set you can be treated in your local area. Good luck and don't give up hope!

    I'm not understanding this MD Anderson. I am cancer free (and plan to stay that way) but would like all the info I can get, retain and use. Could you please explain :) drenna
  • inkblot
    inkblot Member Posts: 698 Member
    #7
    Hi rustiroo,

    You may want to also check out Cancer Treatment Centers of America. They're awesome in their approach to cancer treatment and offer so much not typically found in the more traditional large hospitals specializing in cancer. They offer nutritionist services, individual counseling as well as family counseling, Naturopathic Physician services, personalized physical fitness plans, supplements which compliment your treatment plan...the list is long. Worth looking into. Their phone number is: 1-800-615-3055

    Love, light and laughter,
    Ink
  • Susan956
    Susan956 Member Posts: 510
    #8
    drenna said:

    I'm not understanding this MD Anderson. I am cancer free (and plan to stay that way) but would like all the info I can get, retain and use. Could you please explain :) drenna

    M D. Anderson is a well know cancer center in Texas. They have some of the most up to date treatment plans and research... So with more advanced cancers they sometimes have a much better treatment plan than you local Onc.

    God Bless....

    Susan
  • rustiroo
    rustiroo Member Posts: 4
    #9
    inkblot said:

    Hi rustiroo,

    You may want to also check out Cancer Treatment Centers of America. They're awesome in their approach to cancer treatment and offer so much not typically found in the more traditional large hospitals specializing in cancer. They offer nutritionist services, individual counseling as well as family counseling, Naturopathic Physician services, personalized physical fitness plans, supplements which compliment your treatment plan...the list is long. Worth looking into. Their phone number is: 1-800-615-3055

    Love, light and laughter,
    Ink

    I so much appreciate all of you! I am from Tulsa and there is a Cancer Treatment Center right here... but I found out that my insurance won't pay for the Tulsa Facility, which is 15 minutes from my house...BUT... will pay for the Chicago/Zion Facility. Now how jacked up is that!! I ended up going to the Chicago CTC for the last round of my chemo treatments..After being treated for 7 months (once every 21 days, and staying for a week) I could not continue to go due to my purse strings. I tried to go to MD Anderson after my 2nd re-occurence and at that time they could not offer me anything that my own Oncologist here could not do here... I will try them again... It can't hurt!!!

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