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McClure77
McClure77 Member Posts: 55
edited June 2016 in Hormonal Therapy - Before, During, and After

I'm not exactly sure where to put this question, but as I at the hormonal therapy stage, I will stick it here.


As many of you know, current Breast Cancer treatment is largely a faith-based for you, evidence it worked for others deal. You engage in treatments because they have worked for others, but there is no real way to assess how they are working for you, personally. I have always known that many drugs do not work well on me, or at all. During treatment it seemed to skyrocket to about 80% of the drugs we tried did nothing. Most of those, of course, were to mitigate side effects of chemo, so instead I just dealt with them as best I could. I started Tamoxifen and within months uterine changes led to a radical hysterectomy.

I started doing more research and learned a lot about the different liver enzymes and how some of us do not produce any or enough of the ones needed for certain drugs. Interestingly, my problem with opiates very likely also means that I would not be processing tamoxifen correctly either. Some studies show that women that have issues with these enzymes on Tamoxifen die at 3 to 4 times the rate of others, which would make sense if the drug is not as effective for us. (During my research I learned that my chemo regimen is an inhibitor for this same enzyme, and so it's possible that those drugs worked even less well than normally because of the chemo)

So long story short, I just cannot accept this faith based, we assume it is working approach anymore. Especially when logically it would appear that the chances are BETTER a drug won't work on me than that it will. I don't want to endure possible side effects and later have a recurrence because the drug wasn't even working. That's lose/lose.

So my question is, are any of you out there going through this? Have you found oncologists that are willing to consider genetics and individual factors in your care? Are there ways to determine, for example, if an AI is ACTUALLY inhibiting, rather than just assuming it is?

For those interested, here's a link to an very interesting resource discussing drug interactions and the metabolizing of different treatments:

http://interactions.evidencewatch.com/


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  • jojo9999
    jojo9999 Member Posts: 202
    edited June 2016

    I understand your frustration not knowing if the drugs are working. I am on tamox now and although all the latest research is favoring AI's I find it interesting to read some of the older aticles about tamox that showed its efficiacy. But all studies are based on large samples and practice guidelines are formed by considering these studies. A drug is successful if it shows statistically significant less disease progression than a placebo, but there is still disease progression for some on the drug. Yet each one of us is a sample of size 1...is it working for me?

    It is interesting to read about women taking tamox or AI neo-adjuvently and they see the cancer shrinking - that is evidence that it works for them.

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  • McClure77
    McClure77 Member Posts: 55
    edited June 2016

    Yes, you are correct. And when you throw into the mix the fact that some drugs don't work for all people where does that leave things? I find it frustrating that it's known that CYP2D6, for example, is responsible for being able to metabolize a huge group of drugs, like opiates, SSRI and tamoxifen. There are estimations that 6-10% of the population are thus affected and yet doctors ONLY seem to prescribe oxycodone, etc for surgeries. My oncologist is aware these don't work for me, and she STILL prescribed Tamoxifen. I feel a little like this purposeful ignorance of drug metabolism could easily cost me my life. I understand it's hard to get into the nitty gritty, but my concern is MY survival, and although it's more difficult, I need to find a doctor where that is their concern as well.

    One sizes fits all does not fit me. Do I choose to completely stop my therapy until I find something that does? My recurrence chance is high, but taking a drug that isn't working doesn't decrease that.

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  • KBeee
    KBeee Member Posts: 5,109
    edited June 2016

    I think Mayo has a program called pharmacogenics (or something olike that...I think I fractured the term). Basically, they study you individually to see why some drugs work better for you than others; not just in cancer.


    That being said, when I failed on Tamoxifen, they would not even do a blood test to see if I was a metabolozer of it. This program has evolved since that time though, so maybe I owuld have been able to be tested had it occured later.

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  • McClure77
    McClure77 Member Posts: 55
    edited June 2016

    KBeee Thanks! Yes, it's frustrating. Even now there doesn't seem to be a lot of acceptance of this issue as of yet. And strangely, if you are an ultra metabolizer, a Dr could actually KILL you with Oxycodone because you could OD on it. You'd think that this issue alone would wake people up to being more careful and aware.


    this site does tamoxifen testing for not a bad out of pocket, and you can do others, one does a whole panel. https://www.kailosgenetics.com/tamoxifen


    None appear to test for anything associated with AI's though, so I don't know what to think about that. Maybe I am just destined to not have hormonal therapy, and I suppose I'm ok with that.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2016

    McClure, here is an extensive thread on your subject:

    https://community.breastcancer.org/forum/73/topics...


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  • McClure77
    McClure77 Member Posts: 55
    edited June 2016

    ooooh thanks!

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