Aromatase Inhibitor and just walking away.

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  • Brutersmom
    Brutersmom Member Posts: 563
    edited June 2017

    dtad My MO when I first started having issues said that the actual benefit of the drug for reoccurence for me was only about 2 or 3% over the 5 years. Kind of like chemo gave me a 6-8% benefit for the first five years and then decreased to 0% in 10 years. We had a brief discussion about that. In my area obesity is high and one of our biggest medical issues. He said it is rare that people want to even consider changing their lifestyle. They just want a pill to fix everything.

  • bareclaws
    bareclaws Member Posts: 345
    edited June 2017

    Brutersmom, true dat! I think that being an active participant in keeping chances of recurrence low is the most important thing I can do. Weight, exercise, diet, alcohol use, sleep, stress-these are all things that are mostly within my personal control. Not saying those things are easy, because they aren't. Taking pharmaceutical drugswould be much easier.

  • Falconer
    Falconer Member Posts: 1,192
    edited June 2017
    I love exercise, haven't had refined sugar in many years, eat a healthy well balanced diet and have weighed about 120 lbs most of my adult life, except when pregnant. However, I am not surprised to hear Brutersmom and dtad report that so many women quit AIs. My ankles and knees ache and that's only starting from the bottom! And you're right, sleeping well is challenging bc I'm either hot flashing or having joint pain. My doctor's answer too was don't gain weight. The whole thing is crazy. It's a terrible Catch-22.
  • Ade
    Ade Member Posts: 740
    edited June 2017

    No more Letrozol - no more Exemestane - no more Tomoxifen!

    I feel good about my decision and feel a sense of freedom instead of dread from side effects.

    Ready to move on now.

    Ade

  • Brutersmom
    Brutersmom Member Posts: 563
    edited June 2017

    Ade, Glad you were able to make the decision. Did you try Tamoxifen?

  • Brutersmom
    Brutersmom Member Posts: 563
    edited June 2017

    I have an appointment with a nutritionist this Friday. In preparation for this I decided to us an app on my phone to log what I eat. One thing I have found is if I log what I am eating I tend to eat better because I think about what I am putting in my body. I have noticed one thing I have noticed is the return of night sweats. I had them in menopause and I had the for a short while when I started Arimidex. Not sure if they are because of the crazy weather we are having or if it is because my better eating habits are changing how my body releases insulin and hormones. I have been reading a lot about insulin, insulin resistance and fat and the hormone oestrogen found in fat cells. I started reading about this because since starting Arimidex my fasting blood sugars went from 99 to 104, my Triglycerides went from 118 to 140 in 9 months.

    The good news is that in three days of logging my foods I have dropped 3 pounds. I will take it.

  • Ruby3813
    Ruby3813 Member Posts: 96
    edited June 2017

    Good for you, Ade. We are, after all, in charge of our own bodies.

  • deirdra
    deirdra Member Posts: 5
    edited June 2017

    girl i hear you ... i was on tamoxifen for 4 1/2 years then lump showed up in my petscan. i had surgery to remove the lump and radiation treatment. btw, i'm only 39 ... now my docs want to give me a monthly shot to shut down my ovaries + i have to take anastrozole every day. Treatment is keeping cancer on my mine more than anything else and i constantly feel like a sick person. the side effects are getting worst and impacting my quality of life. i been researching foods that i can eat to block estrogen and how to eat to starve cancer cells.

    i feel like i need to take my life and not live in this constant fear of treatment side effects. has anyone else stopped hormonal therapy?

  • deirdra
    deirdra Member Posts: 5
    edited June 2017

    kuddos!!!!! when can we ever move on? the pharma industry really does care about our quality of life. I'm 39 been on these drugs for a long time now they want to shut down my ovaries.

  • Ade
    Ade Member Posts: 740
    edited June 2017

    Brutersmom - yes I have tried all three that I mentioned and just can't do it anymore. It hasn't been a full week yet and already I sleep better and feel better. My form of BC fed on hormones but wasn't as aggressive as some (invasive - yes - but not as aggressive). If I'd had one of the more nasty ones I may have just HAD to stay on the meds. My onc. said to me, "Some go off the meds and cancer never returns - some it does. Some stay ON the meds and cancer never returns - some it does". That kind of settled it for me when he said that quality of life matters. GOOD FOR YOU on the 3 lb. loss!!!! That is encouraging!

    Dierdra you were on Tomoxifen and STILL the cancer came back! I DID stop hormonal therapy - those were the first 2 drugs I was on before Tomoxifen. I'm sorry you're having such a rough time - I do know about that!

    Thank you Ruby!

    Ade

  • Brutersmom
    Brutersmom Member Posts: 563
    edited June 2017

    Ade, You words sound like the words of my surgeon. I am grade 3 but life on the drug had become non existent. Depending on how I do with changing my eating habits and exercise between now and the Visit with my MO in late August will determine whether or not I even try Tamoxifen.

    Deidra it is so much harder when your young. It seems the cancer is more likely to return and you have so much longer on the drugs. Medical Doctors don't think about alternatives like diet and exercise. They are not a guarantee either. Do you have a nutritionist in you program that you can see.

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    Deidra I'd be fighting like crazy if I your age to be cancer free. Your my daughters age.


  • bareclaws
    bareclaws Member Posts: 345
    edited June 2017

    >Medical Doctors don't think about alternatives like diet and exercise. They are not a guarantee either.

    Brutersmom, medical doctors DO think of diet and exercise, but patients are non-compliant. Most patients want a quick fix, a pill--not a lifestyle change.

  • dtad
    dtad Member Posts: 2,323
    edited June 2017

    bareclaws...sorry to disagree but IMO most MOs are much more comfortable writing a prescription for an anti hormone rather than discussing the significance of weight loss and exercise. Hopefully this will change in the future. Good luck to all.

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    I guess I'm lucky my oncologist suggested I join the YMCA. Many of them offer an exercise group for cancer support. He also suggested the meds. He has worked very hard to find one that has been the best for me.

  • bareclaws
    bareclaws Member Posts: 345
    edited June 2017

    dtad, oh I do agree with you thatwrite a prescription is what they DO, because they know that patients are non compliant with diet and exercise.

  • marijen
    marijen Member Posts: 3,731
    edited June 2017

    I am walking away as of last weekend. I want to see how it feels after two plus years and I'm worried about my eyes. Would some decipher this info for me?

    Aromatase Inhibitors Improve Recurrence Rates, Survival in Early Breast Cancer

    Healio | Aug 28, 2015

    "The use of an aromatase inhibitor reduced breast cancer recurrence rates approximately 30% compared with tamoxifen, according to the results of a meta-analysis.

    "Further, use of an aromatase inhibitor for 5 years reduced 10-year breast cancer mortality rates approximately 15% compared with 5 years of tamoxifen, equating to an approximate 40% reduction compared with no treatment.

    " 'Aromatase inhibitors, given either for 5 years or for 2-3 years after 2-3 years of tamoxifen, produce greater reductions in recurrence than 5 years of tamoxifen alone, but the effect on breast cancer mortality, and the optimal way to schedule aromatase inhibitors and tamoxifen in the treatment of early breast cancer, remain uncertain,' Mitch Dowsett, PhD, head of biochemistry and professor of biochemical endocrinology at The Royal Marsden Hospital and Institute for Cancer Research in London, and colleagues of the Early Breast Cancer Trialists' Collaborative Group wrote."

    Tags: aromatase inhibitors, breast cancer, early stage, Healio, mortality, pc, recurrence, risk of recurrence, stage I, stage II, survival, tamoxifen


  • marijen
    marijen Member Posts: 3,731
    edited June 2017

    Aromasin Plus OFS May Reduce Risk of Recurrent Breast Ca (CME/CE)

    MedPage Today | Apr 07, 2016

    Excerpt:

    "Premenopausal women with hormone receptor-positive, HER2-negative breast cancer may benefit from exemestane (Aromasin) plus ovarian function suppression (OFS) versus tamoxifen with or without OFS, analysis of recurrence-risk data from the TEXT and SOFT trials has indicated.

    "Those with a high recurrence risk may experience a 10% to 15% improvement in the 5-year breast cancer-free interval (BCFI) with aromatase inhibitor (AI) exemestane plus OFS, while those at intermediate risk may experience an improvement of at least 5% with the same regimen, according to Meredith M. Regan, ScD, of Dana-Farber Cancer Institute in Boston, MA, and colleagues.

    "Patients at lowest risk of recurrence had minimal benefit with exemestane plus OFS, the study showed, which is online in the Journal of Clinical Oncology."

    Go to full article.

    Do you have questions about this story? Let us know in a comment below. If you're wondering whether this story applies to your own cancer case or a loved one's, we invite you to use our Ask Cancer Commons service.

    Tags: Aromasin, aromatase inhibitors, breast cancer, clinical trial, clinical trial results, exemestane, HER2 negative, MedPage Today, OFS, ovarian function suppression, ovarian suppression, pc, premenopausal, recurrence, recurrence prevention, risk of recurrence, SOFT, tamoxifen, TEXT

  • muska
    muska Member Posts: 1,195
    edited June 2017

    About the significance of weight loss and exercise: nobody argues that weight loss and exercise are good for overall health and that applies to everybody, whether you had BC or not. However, I don't remember seeing serious studies or references to such studies that would indicate that those who have normal weight and exercise but do not take AIs have fewer recurrences than those who don't exercise but take AIs...

    My point is, exercise is good but it is no replacement to AIs.

  • chef127
    chef127 Member Posts: 891
    edited June 2017

    How many studies are actually done on bc women who did not take any of the hormonal txs but maintained a healthy weight and exercised? Or NOT. None that I can reference.

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    How can you do a controlled study of diet/exercise. You can't. Everyone is different and there's no way to set parameters that would work. So best thing to do is everything you can to help prevent recurrence.

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    I agree muska. I recognize the importance of diet and exercise but I'm also taking my arimidex. I'm going to be on it I 5 more years whic will be 12 altogether. Here's something about the importance of exercise.

    https://www.cancer.gov/about-cancer/causes-prevent...


  • marijen
    marijen Member Posts: 3,731
    edited June 2017

    Kira, thanks for the article - going to read it now, but while it's in my head (AI affected cognitive and memory), I can say that exercise keeps the lymph moving and that is where my cancer was found in the lymph node. No disagreement, just one point on the whole big picture. In other words stagnant lymph is full of toxins.

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    I don't think anyone is questioning that exercise and diet are important--for health and to hopefully help prevent diseases. But there are plenty of people here who were doing everything "right" and still got bc. I wish I could have stayed on an AI but the se is way too much for me. Luckily Tamox doesn't bother me so I will stay on it.

  • marijen
    marijen Member Posts: 3,731
    edited June 2017

    Kira, I see that exercise lowers estrogen. So in that way it could be considered a natural AI. But I'm not trying to convince anyone not to take an AI or Tamox. But I have run into road blocks so reconsidering whether I need it.

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    marigjen do you have a rebounder? They are excellent for keeping the lymph moving. Oh another thing if you have a way to use a sauna they are excellent for lymph flow as well.

  • marijen
    marijen Member Posts: 3,731
    edited June 2017

    Yes I have a rebounder. Couldn't use it until my radiation Delayed Breast Celulitis and swelling calmed down. There's a sauna I can use but I thought heat was bad for the breast edema?

  • muska
    muska Member Posts: 1,195
    edited June 2017

    @Chef, I think if you are interested you can find some references to the % of women who are normal weight in the breast cancer cohort.

    Cancer starts at cellular level, estrogen does not cause cancer, it might help it grow in some women but it is not the root cause. As to some other ways to lower estrogen none of them stops estrogen production like AIs do.

  • marijen
    marijen Member Posts: 3,731
    edited June 2017

    muska - what do you think? Estrogen feeds cancer so low estrogen just causes it to grow slower? Or does low estrogen cause any cancer cells to starve to death?

    And I remember reading that cancer that in the beginning that feeds on cancer can transform to not need the estrogen to survive. I'll see if I can find that info.

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    marijen a different cancer can be very different. There are many people here who have several tumors found during masectomy. Each one can be different. You can have IDC and ILC and yes other stats can be different.

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