Aromatase Inhibitor and just walking away.

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

    BB, now they say high cholesterol is good to fight BC. Who knew? I know cholesterol builds cells.


    http://www.medicalnewstoday.com/articles/319199.ph...


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

    No, I had all my hair but right about dx I started losing before the biotin. I started Letrozole right after dx too. You just have to try it and see. If your hair is real short you can rub cod liver oil into your scalp it's supposed to grow hair, eyebrows and lashes. Don't get it in your eyes but not dangerous. Some people take it internally

  • JuniperCat
    JuniperCat Member Posts: 658
    edited September 2017

    marijen, here is a link regarding a (rudimentary) difference between luminal A and luminal B:

    http://www.breastcancer.org/symptoms/types/molecul...


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

    Thak you! I saw luminal A in my pathology report but there was never a Ki67 for me because I had an occult primary, and one lymph node 3mm worth of c cells. Macromets.

    For anyone who wants to quit AI, always remember you can restart. And sometimes that makes the AI more effective. There is a study but I can't post without permission.

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

    Oh great, I'm luminal B according to that link and on Tamoxifen instead of Letro because of debilitating se's. My Ki67 was 75. :O

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

    Science Weighs in On How Fat Raises Cancer Risk


    Science Weighs in On How Fat Raises Cancer Risk
    http://www.medicinenet.com/script/main/art.asp?art...


  • Jennie93
    Jennie93 Member Posts: 1,018
    edited September 2017

    Great, so they put us on a drug that makes us fat!!!

    I was never fat in my life, 50 years, until going on tamoxifen. 40 pounds later, now obese. Couldn't tolerate the other SEs so switched to anastrazole, not gaining anymore, but cannot lose any weight no matter what I do.

    Trying to stick it out for the 5 years but no way I'm going even one day over that.





  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited September 2017

    Because it is the fat cells and not their contents that determines the risk (“crosstalk" and androgen synthesis, converted to estrogen by the catalytic action of aromatase), it stands to reason that surgical removal of the fat cells could lessen the risks of both cancer developing and its recurrence. Surgical removal (lumpectomy, or excision—e.g., tummy tuck or breast reduction) is the only way to remove fat cells in sufficient numbers to significantly lower body fat %. (“Cool Sculpting" kills fewer fat cells, and Kybella is limited to the chin & neck, which generally do not have metabolically active fat cells). Diet and exercise can only burn the contents of the fat cells, not destroy the cells themselves—and women can not only refill them when regaining weight (hypertrophic obesity) but can actually build new fat cells (hyperplastic obesity).

    Again, the only way to remove fat cells is to cut them out, suck them out, or (in smaller, perhaps therapeutically meaningless quantities) freeze them to death.

    So the only way to prevent bc (at least ER+) is to never get obese in the first place. The boat's sailed on that for anyone beyond adolescence who's begun to become overweight. Few of us suspected the fat-bc link (in any sense other than epidemiologically coincidental) before we got fat. Yet thin people get bc too—I have two friends who are slender, active vegans (one's a triathlete) and both had high-grade (3) multifocal DCIS.

  • Momine
    Momine Member Posts: 7,859
    edited September 2017

    Chisandy, although I considered myself horribly heavy prior to BC, I never had a BMI above 23, except when I was pregnant and even then it didn't go above 26 (in spite of a healthy weight gain). What I consider a comfortable weight for myself is a BMI somewhere between 18 and 20. So, I am definitely one of the slender people (even if I didn't always think of myself that way) who got BC anyway.

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

    Model predicts outcome of neoadjuvant endocrine Rx

      Caroline Helwick

      Tuesday, April 1, 2008

      Volume: 17

      SAN ANTONIO—An international team of researchers has developed a predictive model that accurately estimates which breast cancer patients may relapse after neoadjuvant endocrine therapy, Matthew Ellis, MD, PhD, said at the 2007 San Antonio Breast Cancer Symposium (abstract 62). Dr. Ellis is director of the Breast Cancer Program at Washington University, St. Louis.

      He noted that while a "fair amount of data" are available for estimating outcomes after neoadjuvant chemotherapy, there is "relatively little" in the setting of neoadjuvant endocrine therapy.

      The study involved patients from P024, a trial comparing letrozole (Femara) with tamoxifen in 337 women. Letrozole was associated with a greater decline in Ki67, and patients who achieved a cell cycle complete response (< 1% Ki67 staining in the surgical sample) had superior relapse-free and breast-cancer-specific survival. The final multivariate analysis, which led to the predictive model, was based on 146 subjects for whom data on surgical staging, confirmed baseline ER positivity, and post-treatment Ki67 values and ER status were available.

      Recurrence-free survival (RFS) at 5 years was nearly 100% for patients whose tumors were downstaged after treatment to stage I/0, compared with approximately 50% for stage II/III patients. Similarly, other independent post-treatment features favorable for RFS were negative nodes, clinical response, low histological grade, Ki67 staining < 1%, and persistence of ER positivity.

      Of most interest, patients who remained persistently ER positive (cut-off Allred 2) had a substantially better outcome than patients who became ER negative after treatment. At 30 months, RFS was > 75% vs approximately 50%, and overall survival was > 90% vs approximately 60% in the two groups.

      The baseline ER positivity levels were not different between patients with persistent positivity and those who became negative. "This finding suggests that after neoadjuvant endocrine therapy it is worth re-checking ER status," he said.

      Risk score

      These independent predictors were put into a multivariate analysis to produce a risk score based on points that were assigned according to the hazard ratios of each.

      "In the final multivariate model, tumor and nodal stage along with degree of Ki67 staining and loss of ER positivity on-treatment were the most important independent variables for predicting outcome," Dr. Ellis noted. "Bootstrap analysis suggests a very valuable prognostic index."

      RFS was highly significantly associated with risk score (P < .0001). At 5 years, relapses were observed in 7% of patients (1/14) in the lowest risk category (risk score 0-1); in 21% (15/71) in the low-intermediate category (risk score 2-5); in 55% (31/56) in the high-intermediate category (risk score 6-9); and in 100% (5/5) in the highest risk category (risk score 10-13), Dr. Ellis reported.

      A UK-based group will prospectively validate these findings in a 4,000-patient trial that will randomize patient treatment to perioperative endocrine therapy vs initiating endocrine therapy in a standard way after surgery, he said.

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

      Bosomblues....yes I refused aromatase inhibitors and yes I take a lot of supplements. They are costly! I also lost 30 pounds and exercise daily. This has been shown to reduce recurrence rates. So far so good. I would be happy to discuss further.

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

      dtad, I'm interested in what supplements you take? A list would be a good start. Thanks.

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

      Hi everyone. I'm reluctant to post publicly since it has not been received well in the past. I will PM you guys...

    • Kiascia
      Kiascia Member Posts: 20
      edited September 2017

      hello dtad,may I also have a copy of tge supplements? I also taking supplements here in Italy and would like to confront. Thanks!

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

      Anyone looked into progesterone...?


      Hormone-driven breast cancer cells have receptors on the outside of their walls, the Mayo Clinic reported; this is also referred to as hormone receptor-positive(HR) cancer. These receptors catch specific hormones circulating throughout the body. Estrogen receptors (ER) catch estrogen, and progesterone receptors (PR) catch progesterone. And according to the American Cancer Society, "about two out of three of breast cancers are [HR]-positive."

      The present study was interested to see where exactly these receptors attach to the DNA responsible for driving cancer cell growth. With advanced DNA reading technology, they did just that. Then, the team grew breast cancer cells that had been rescued for research purposes with and without progesterone, Medical News Todayreported. MNT added this is a new technique developed at the University of Adelaide in Australia.

      The results showed when the PR is activated it redirects the ER to different DNA regions, in which a different set of genes works to slow cell growth. And given the number of patients with HR-positive cancer (it's possible to have HR receptor-negative cancer) these findings suggest a progesterone-type treatment could go on to benefit around half of breast cancer patients.

      Though it's too early to translate these lab findings to humans, Dr. Jason Carroll, senior study author and principal investigator at the Carroll Lab Cambridge Research Institute in the UK, told MNT it's enough to at least start thinking about it.

      "Crucially, it provides a strong case for a clinical trial to investigate the potential benefit of adding progesterone to drugs that target the [ER], which could improve treatment for the majority of hormone-driven breast cancers," Carroll said. "We've used cutting-edge technology to tease out the crucial role that progesterone receptors play in breast cancer — a mystery that has baffled scientists for many years."

      The Mayo Clinic added patients knowing their breast cancer is sensitive to hormones gives their doctor a better idea of how to treat them, as well as prevent future cases. Currently, Tamoxifen is the drug commonly prescribed to treat ER-positive cancer. The ACS explained it can be given for five to 10 years after patient surgery to lower the chances of the cancer coming back, ultimately helping them live longer.

      Source: Tilley W.D., Carroll J, et al. Progesterone receptor modulates ERα action in breast cancer. Nature. 2015.

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

      Very interesting. IMO if you start playing around with hormones, the levels have got to be checked. Right now most MOs will not do this. Some gynecologists and endocrinologists do. Also naturopathic docs are really good at it. Definitely food for thought!

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

      Right, I imagine Naturopaths are expensive. Alternate treatments can be expensive. The other thing is they can't order scans? There is a do it yourself lab. It's called test any day I think

    • JuniperCat
      JuniperCat Member Posts: 658
      edited September 2017

      marijen, I'm also curious about progesterone (my tumor was ER+ and PR-). I'm not sure why, but it seems as though some MOs are not terribly informed about hormones.


    • BarredOwl
      BarredOwl Member Posts: 2,433
      edited September 2017

      Regarding the feature from MNT posted by Marijen, in my layperson view, this very early stage preclinical work does NOT speak to the safety or efficacy of progesterone either used alone as a single-agent or in combination with tamoxifen in breast cancer patients with ER+PR+ disease. Never use anything containing estrogen and/or progesterone without first consulting with your medical oncologist.

      For a more detailed discussion of the work, the combination of agents used, and caveats and limitations, see this earlier post and citations:

      https://community.breastcancer.org/forum/73/topics/853731?page=1#post_4938019

      Progesterone binds to the Progesterone Receptor on the surface of cells in order to exert its biological effects, after which the receptor is translocated to the nucleus where it acts as a transcription factor. If this work ever pans out (which it may not, given the preliminary nature of the work), it is not clear how it would be useful in those with PR-negative disease (with little to no receptor available to bind progesterone).

      BarredOwl

    • JuniperCat
      JuniperCat Member Posts: 658
      edited September 2017

      Thank you, BarredOwl!!


    • hippiegirl
      hippiegirl Member Posts: 31
      edited September 2017

      Hi Sisters,

      I want to update you on how I am doing.

      Due to authorization problems with my old health insurance (I've since joined a new one and am awaiting my membership card any day now) I had my Lumpectomy on April 27 and still haven't had after treatment such as radiation and AIs.

      I'm going to do both and if the AIs give me bad SEs then I'll go the natural route with supplements.

      HeartHippie Girl

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

      Bossumblues...this is why I chose a BMX. There is only a 2 percent chance of recurrence

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

      Most MOs know very little about female hormones because it was not part of their oncological training. This is why I feel its important have an endocrinologist or gynecologist on the BC team,,,

    • VioletKali
      VioletKali Member Posts: 243
      edited September 2017

      I walked away from all treatment, my decision would not have been any different had my tumor been larger. I was DX at age 31, just 3 weeks prior to my 32nd birthday. BRCA - No other genetic abormality.

      I saw so many young women in my DX age range 30-35, with similar stats to me, do EVERYTHING and still have recurrences. I decided that I could do anything and everything and it can recur, so why not make the decision that makes me happiest and leads to best quality of life for the years I have left. I admit that I will not do chemo again, I will choose palliative care and other options.

    • azb2005
      azb2005 Member Posts: 2
      edited September 2017

      Wow...I just took the test/survey Mari spoke abut. It indicates my life expectancy would decrease by .7 years without AIs. Big HMMMMMMMMMMMMMMMMMMMM.

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

      What it doesn't say is what your Quality of Life will be or your risk for recurrence. We don't get to know these things.

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

      Unfortunately no one really knows how their QOL will be affected. However IMO it definitely impacts my decision to take it or not. W are all different and have to make our own informed decisions about treatment options. Good luck to all....

    • VioletKali
      VioletKali Member Posts: 243
      edited September 2017

      AZB2005-

      HMmmmmmm indeed. For some, unlike myself, that .7 would be worth it. Only you are truly qualified to decide if it is worth it to you.


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

      I don't think they include recurrence and mets eveywhere BB. We can't know if that will happen

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