HER2/neu positive, estrogen/progesterone negative

Her Too New
Her Too New Member Posts: 3
edited March 2014 in Breast Cancer #1
Hi Everyone--thanks to all for sharing so much.

I was diagnosed with IDC (Invasive ductal carcinoma) on June 17. I'm Her2/neu (+), Estrogen/Progesterone (-). My KI-67 marker is high, indicating that I've got an agressive baddie. I want to fight this with any tool I can, including nutrition power, herbal medicine, exercize and chemo/radiation/surgery and possibly clinical trials. I've been confirmed a candidate for herceptin.

My current recommended treatment is as follows:
a. shrink the tumor with chemo (adriamyacin every other week for 4 weeks; cytoxin every other week for 4 weeks). Hopefully this will shrink the big tumor in my left breast and shrink to nothing the matastecized cancer in my lymph nodes so we don't have to cut them out;
b. rest 4 weeks before surgery;
c. surgery of left breast mass/radiation;
d. herceptin all along to control the aggressiveness.

I have a lot of questions. If anyone has comments to share an any of the following I would greatly appreciate it!

Clinical Trials:
1. Has anyone ever heard of or had experience with Lapatinib (brand name Tykerb)? Are clinical trials generally for last ditch effort scenarios when nothing else works? With my aggressive type cancer should I be on the lookout for clinical trials first?

Impacts of Exercize:
2. Does anyone know of a fitness trainer who specializes in working with cancer patients?

I am currently doing aerobic exercize and rebound exercize (jumping on mini trampoline) before beginning my treatment and would like to continue some form of exercize during treatment. My reasons are to increase oxygen into my bloodstream (aerobic exercize) and to increase detoxification of my lymph system (rebound exercize). Unfortunately my lymph system is already cancerous (at least one node in my axillary). And I don't know if I'm doing damage or increasing the spread of my cancer by doing this...I'm very confused.

Nutrition:
3. Nutrition doesn't appear to be top of the list of concerns with conventional cancer treatment. What should be my nutritional arcinal in my cupboard before I am too wiped out to care? What should my cupboard be stocked with before I begin chemo?

Herbal Medicine in conjunction with chemo/herceptin/other treatment
4. Has anyone worked successfully with a naturopathic doctor/herbal medicine, etc. in conjunction with conventional treatments (chemo/surgery/radiation). I recently saw a naturopathic doctor who works with a lot of cancer patients. His approach is to support the body nutritionally to reduce the toxic impact of chemo and radiation. He perscribed their supplements at a whopping $1000/month regime. They claim that they are "bioavailable", plant based, easily digestable etc.. This is a lot cheaper than pharmaceutical companies charge (herceptin costs $78,000/year! ). However, I want to be sure it's real and works. I feel more comfortable with super foods and herbal teas rather than supplements.

Thanks a bunch.

Liz

Comments

  • CR1954
    CR1954 Member Posts: 1,390 Member
    #2
    Liz.......
    Hello and welcome. I'm glad that you found us, although sorry for your dx.

    I am also HER-2+ amd ER/PR-. IDC.

    I had mastectomy & several cancerous lymph nodes removed.
    Then 4 rounds, two weeks apart of A/C. Then 4 rounds, two weeks apart Abraxane/Herceptin. Then a 90 minute Herceptin infusion every three weeks for a year. I will finish that late this Fall.

    Also had 28 rads.

    I didn't see a nutritionist or a fitness trainer. Perhaps others here have though.

    One thing that I would stress though, is check with your onc before your take any supplements...herbal or otherwise, while having chemo.

    Good luck in your journey.

    CR
  • cats_toy
    cats_toy Member Posts: 1,462 Member
    #3
    Welcome Liz
    I did not have that regimen, but I am sure someone will post soon who did. I also have to agree with CR, anything you do or take, talk to your onc first. And good luck with your treatment.

    Cat
  • 1surfermom
    1surfermom Member Posts: 396 Member
    #4
    cats_toy said:

    Welcome Liz
    I did not have that regimen, but I am sure someone will post soon who did. I also have to agree with CR, anything you do or take, talk to your onc first. And good luck with your treatment.

    Cat

    Hi and welcome Liz
    Liz,
    I am also her2+ and ER/PR -. I also have to do my chemo before surgery, I will be finished on 9-2-09 ,I am currently on a clinical trial using Lapatinib. I know what you mean by trials as a last ditch effort, I felt the same way. However being on a trial is also helping the standard of care evolve. By being part of a trial you are not only helping yourself but helping other victims of this horrible disease. Feel free to PM me anytime. Love Surf.
  • susie09
    susie09 Member Posts: 2,930
    #5
    1surfermom said:

    Hi and welcome Liz
    Liz,
    I am also her2+ and ER/PR -. I also have to do my chemo before surgery, I will be finished on 9-2-09 ,I am currently on a clinical trial using Lapatinib. I know what you mean by trials as a last ditch effort, I felt the same way. However being on a trial is also helping the standard of care evolve. By being part of a trial you are not only helping yourself but helping other victims of this horrible disease. Feel free to PM me anytime. Love Surf.

    Being asked to be in a trial
    Being asked to be in a trial isn't really a last ditch effort for bc patients, is it? I never thought that.
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #6
    Hello
    Liz, welcome, though I am sorry for your diagnosis. There is a magazine called CURE, which is found in clinic offices; I've seen it in waiting rooms pretty much at every cancer clinic I have been to.

    A recent one discusses trainers who specialize in working with cancer patients. I don't recall the name of the organization, but you might google. Also, check the ACS websites and/or call them. Not sure if CURE has a website. You can also call a sports medicine facility in your area and ask.

    Re tykerb, I have heard of it also, actually in that same magazine. I believe it is considered promising. Again, googling and the ACS site can give you more info. As far as clinical trials, some people do think of them as a last-ditch, desperate effort. But there are many different trials for different stages of cancer. For example, I considered a trial for patients with no evidence of disease but at high risk of recurrence. So, if you are offered a trial, it is not because you are beyond standard treatments. You will be told so in that case.

    Good luck. I hope this is of some help to you.

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