Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Does Arimidex prevent mets at all?

1235

Comments

  • LindaKR
    LindaKR Member Posts: 1,304
    edited May 2011

    Lago - I'm scandalized - Surprised -  Hmmmm I guess I won't feel badly if I do that then Undecided

  • lago
    lago Member Posts: 11,653
    edited May 2011

    I think the site says it limits to MDs because of CYA. Lets face it an medical oncologist would understand the results better than your average bear. I don't think they want anyone getting this info without discussing it with an onc.

  • omaz
    omaz Member Posts: 4,218
    edited May 2011
    Linda - I think the lifemath.net site only calculates mortality - did you figure out a way to get recurrence?  It doesn't include herceptin.  I am not sure if TCH is 2 or 3 generation regimen either.
  • LindaKR
    LindaKR Member Posts: 1,304
    edited May 2011

    Thanks Omaz, it does only calculate death, (chemo brain).  Does the Adjuvant Online have all the regimans and newer drugs? and does it calculate recurrence? 

  • omaz
    omaz Member Posts: 4,218
    edited May 2011

    Linda - I *think* AO does do recurrence but also doesn't have herceptin!  I think taxotere/carboplatin might be third generation from what I am reading tonight.

    Diagnosis: 6/21/2010, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+

  • LindaKR
    LindaKR Member Posts: 1,304
    edited May 2011

    Omaz - I think they are third generation also.  Well, I suppose I shouldn't dwell on that issue anyway, I'll just go with the 10% chance of recurrence that my onc gave me.  And the cancer math shows a significant difference in my prognosis with just chemo and AI, I also had radiation (lowers my chances even more).  So - now any hints on how to move on and not dwell on BC?  I'm still having a number of SE's and still on disability, it's getting kind of old.......  any suggestions on how to move on mentally would be greatly appreciated!!!

  • omaz
    omaz Member Posts: 4,218
    edited May 2011

    Linda - Oddly the thing that is helping me the most right now is exercising.  Makes me feel better.

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
    edited May 2011

    Hi Linda,

    I second the exercise which I did all through treatment.  Made an enormous difference.  That said, it took me about 20 months from diagnosis to get to 100%.  Some other things that helped me:

    • Get outside.  The weather is getting nice here in the NW.  So many wonderful things to see.  Make sure you have to walk to get there.  Take your camera, and perhaps a nice picnic.
    • Do things with friends.  Another version of "get outside", but I am talking activities.  So could be a get-together.
    • Go to where they know something about makeup and get a makeover.  Major important to look fab.  I had trouble with who I saw in the mirror vs who I saw in my mind's eye for quite some time.  I don't know what I would have done w/o having fab makeup.
    • Work towards getting stronger.  This is a subset of exercise, but strength training will help with your confidence in tackling things, your balance, and how you look in clothes.
    • Make sure you wear clothes and colors you look fab in.  No time for the rest.
    • Do something useful.  It could be some volunteer work.  This again helps in getting back to life.
    • As soon as your hair gets shaggy, invest in a haircut.  May not be the look you ultimately want to rock, but you should be doing chic as opposed to shaggy.  Hair color is your friend too.

    Good luck.  Rejoining the world takes a lot of effort, but well worth it.  And it does take a bit of time to get there.  I believe I am now 100% again.  So thrilled.  I am now on to the other areas of my life that need attention.

    And out enjoying the fantabulous NW summer. - Claire

  • LindaKR
    LindaKR Member Posts: 1,304
    edited May 2011
    Claire_in_Seattle  - Thanks for the tips, it's very encouraging to know that it took you almost 2 years from diagnosis to feel 100%.  My daugther says that I'm much better than I was, I think that it's taking too much time. 
  • Fearless_One
    Fearless_One Member Posts: 905
    edited May 2011

    I was able to access CancerMath, however, it did not give me the option to calculate Arimidex alone vs. Arimidex + oopherectomy.   And I do not know what "ovarian ablation" means.   I calculated the following:

    AI alone = 7.8

    Ovarian ablation alone = 7.8

    Ovarian ablation + Tamox.= 7.8 

    I find this very disconcerting.    But again, it didn't give me the option to choose my specific treatment (AI + oopherectomy).   I think it's kind of a crappy website, as it does not list all treatment options.

  • omaz
    omaz Member Posts: 4,218
    edited May 2011
    Fearless - ovarian ablation mean ooph or medication ooph I think.  I don't think that website distinguishes between the different anti-estrogen approaches - it's all or nothing. 
  • Fearless_One
    Fearless_One Member Posts: 905
    edited May 2011

    Omaz, I looked it up, you are right - it means hormone supression from any of three methods (surgical removal, radiation or drugs).    But the site did not give me AI + OA as an option - only Tamox + OA .  

  • omaz
    omaz Member Posts: 4,218
    edited May 2011
    Fearless - Yes.  did you try adjuvant online?
  • Fearless_One
    Fearless_One Member Posts: 905
    edited May 2011

    Yes, but it says my java is not enabled (which it is).   So I don't understand, but I can't access it.

  • omaz
    omaz Member Posts: 4,218
    edited May 2011
    Fearless - Did you check this? in IE: Tools > Internet options > Programs > manage add-ons > enable JAVA
  • revkat
    revkat Member Posts: 122
    edited May 2011

    If you read the reasoning on Adjuvant Online, they are waiting for the results of the SOFT and TEXT trials to figure out if adding tamoxifen or an AI to ovarian ablation (whether by chemo, hormonal shots, oophrectomy, or radiation) reduces risk of recurrence or overall survival. They do recognize that their current approach -- not giving extra weight to the combining of these treatments -- is conservative and that there are good reasons for thinking that there may be some positive effect to using them in combination.

    So, in short, we are still in guinea pig mode as far as what will work best for women who have premenopausal bc and then become menopausal through some type of treatment. If I had a low risk cancer I might figure chemopause was treatment enough. With an intermediate risk, I'm going along with my onc's recommendation for 3 years of tamox followed by 2 years of an AI. But we really don't know what if any benefit I personally am getting.

  • omaz
    omaz Member Posts: 4,218
    edited May 2011
    revkat - it is interesting to be pre-meno and go into chemopause.  I agree with you, I need to take anti-estrogens too.  My onc is doing tamoxifen until I am 1 year out from the end of chemo without a period then plans to switch me to femara I think.  They measured my estrogen at my last blood draw and I have an appt tomorrow so I am curious to see what my levels are now.
  • LindaKR
    LindaKR Member Posts: 1,304
    edited May 2011

    My guess is that ooph/abaltion & AI isn't an option because AI's aren't prescribed unless you're post-menopausal, so they assume you're ovaries aren't working or have been removed/suppressed.

  • Fearless_One
    Fearless_One Member Posts: 905
    edited May 2011

    Omaz - yes, it's enabled and I still get the same message.   Maybe I just have too old a version of IE, I don't know.

    Revkat, that's what I think, too.   I don't like being a gunea pig, but I don't want to gamble with risk, either - not at stage II with having 2 nodes positive.  

    LindaKR, that makes sense, except that since AI's stop adrogens from converting to estrogen in post-menopausal women, I would think recurrence would be lower if you have done both.   But the numbers are the same.   Which makes me question being on AI's.   But I am not jumping ship yet, I will speak to my onc.

  • Fearless_One
    Fearless_One Member Posts: 905
    edited May 2011

    Okay, I just took it again and compared the following:

    AI + chemo (3rd gen) = 7.8 risk of reccurence  = 5.3 years increased survival

    No hormonal therapy + chemo (3rd gen) = 11.4% risk of recurrence = 4.2 years increased survival

    While there is a difference, I am not sure whether this would be deemed statistically significant.    I am not impressed with these numbers.  

  • Beeb75
    Beeb75 Member Posts: 114
    edited June 2011

    Fearless,

    I think the crucial difference isn't the difference in length of survival, but the difference in risk of recurrence. It's 3.6 percent according to your numbers, which means 3.6 women out of 100 (or 36 out of 1000) will have a recurrence if they do not do hormonal therapy after chemo. That sure is significant to those women, because it means they have to battle cancer again, and since the majority of their recurrences would be metastatic, the cancer would eventually win.

    But also, Adjuvant Online shows an even greater benefit for hormonal therapy for someone with your stats -- they would save the lives of 8.4 women out of 100. 

    However, it looks like Adjuvant Online doesn't show the nuance between AI + Ooph or Ooph alone. It seems that there are ongoing trials out there looking at that question. I haven't personally tried to research them. I think it's a great question for your onc. 

  • Fearless_One
    Fearless_One Member Posts: 905
    edited June 2011

    That is my dilema - I'm not seeing numbers for difference between AI + Ooph  vs. only ooph.    I don't consider osteoporosis and heart issues minor side effects, and I just wish there were some numbers on risk of recurrence for AI/Ooph vs. ooph alone. 

    I would certainly rather get osteoporosis than cancer, but I would like to see some data.  

  • lago
    lago Member Posts: 11,653
    edited June 2011

    Fearless bone loss (osteoporosis) happens slowly. If they are monitoring you they can always reduce the SE with bisphosphonates. Granted there are SEs with them too but I do read more associated with the pill form than the injection. I also hear taking a break from them reduces your risk of getting brittle bones.

    I'm also wondering if the heart related issues are more common with folks that have a personal risk already or family history.

    Has anyone asked their onc about Al + Ooph or Ooph only?

  • Fearless_One
    Fearless_One Member Posts: 905
    edited June 2011

    Lago, true, but I question whether a woman who has had an oopherectomy really needs to be on them.   But I can't find data on AI + O or O only.   I could ask my onc, but I don't want to offend her and I don't want her to drop me as her patient if I choose to go off my meds.

  • GabbyCal
    GabbyCal Member Posts: 46
    edited June 2011

    Fearless_One - It doesn't sound like this is really a decision you can make by the numbers. Have your doctors given their opinions on the benefit of AI for your specific set of circumstances?

    I can tell you're struggling trying to make the right decision. I can share with you my decision process. I was concerned about osteoporosis. My MO said that if bone loss occurs, it happens very slowly. Over a period of years. Not knowing whether or not I would have this SE, I decided to go ahead with AI and do everything I can to prevent bone loss. My MO has me on 1600 mg Calcium + 2000 IU VitD daily. I also walk at least 30 minutes every day and have a diet high in calcium-rich foods, particularly non-fat plain yogurt which is great with fruit. I'll have DEXA scans every 2 years. If I show signs of bone loss, then I'll have a decision to make.

  • lago
    lago Member Posts: 11,653
    edited June 2011
    Fearless you have the right to ask your onc that question. Also many women unfortunately decide not to even try Als/Tamox and others stop because of the SE. I find it hard to believe you would be dropped.
  • Fearless_One
    Fearless_One Member Posts: 905
    edited June 2011

    Gabby, onc wants me on it.   But that is not enough for me, when I can't find any data anywhere.   I know AI's prevent recurrence.   But I see nothing on whether they have any impact that is greater than oopherectomy alone. 

    I am actually more concerned about stroke and heart issues than osteo since that runs in my family.  

  • Fearless_One
    Fearless_One Member Posts: 905
    edited June 2011

    Lago, I hope you are right.   I don't think she would drop me, but I have never gone against her medical advice before.

  • Leah_S
    Leah_S Member Posts: 1,929
    edited June 2011

    Fearless_One, if AIs prevent mets at all then the ooph is irrelevant. AIs are ONLY given to post-menopausal women, and whether the menopause is natural or medically induced (ooph, Lupron, or rads to ovaries) does not make a difference. So the question really goes back to your original one - does Arimidex prevent mets at all?

    From what I understand in the literature, the answer is yes. Of course not for everyone, no treatment is 100% successful. What you need to know is your risk of developing mets with AI and withour AI and only then can you make your decision based on the amount of risk for the amount of benefit for you.

    Best of luck.

    Leah

  • Beeb75
    Beeb75 Member Posts: 114
    edited June 2011

    Agree with Leah here. My understanding is that AIs neutralize any stray estrogen produced by the adrenals and by fat cells if the ovaries are shut down.

    Fearless, it may be that the data on AIs is too new to be incorporated into the models of Adjuvant Online or LifeMath, just as Herceptin isn't in there yet. However, there have definitely been studies on AIs -- they would just be more recent and you might have to look on PubMed or elsewhere for them. I haven't looked at them myself, but knowing how medicine works, I can say that oncs would not be prescribing them if there was not evidence that they improved outcomes.

    But really, you shouldn't be afraid to ask your onc these things. That's their job! That's what you (or your insurance company) pay them to do. And if you did go off AIs, your onc would almost certainly continue to see you.