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Anyone on AIs when recurrance happened?

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  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    Houston, I would find someone who is thorough. My Mo does lots of testing and scans. One way to get either is to come up with a symptom or just go somewhere else. There is a lab that does personal testing without a Dr. approval. But you have to pay yourself. It's called Any day labs, I think. I'll double check.

    Green tea extract is very bad for your liver although a few cups of green tea are fine. Maybe it's too strong. Go to liverdetox.com and put anything in the search, you will see what's not good for the liver. I know this because I tried the extract and my enzymes went crazy.

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    Stopping treatment can reverse resistance of Letrozole

    http://cancerres.aacrjournals.org/content/68/12/45...


  • kira1234
    kira1234 Member Posts: 754
    edited June 2017
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    Marijen this is looking at taking a short break in treatment. I know my oncologist was quite comfortable with having me stop tamoxafin while testing was done to determine if I had had a TIA. I dreaded going back on it and ended up staying off it during that time so eventually it was about 8 months I was off it.

    Did my reacurrance begin to grow during that break? Who knows all I do know is I'm going to do my best to stay on the Arimidex for the 5 years he wants.

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    Prevalence of estrogen receptor mutations in patients with metastatic breast cancer

    Published: Friday 12 August 2016 email

    A new study published online by JAMA Oncology examines the prevalence and significance of estrogen receptor mutations in patients with metastatic breast cancer.

    The activation of the estrogen receptor (ER) is a feature of most breast cancers in which ER expression is detected. An aromatase inhibitor (AI) for estrogen deprivation therapy is an effective therapy for those tumors and reduces disease illness and death. Outcomes for patients with ER-positive metastatic breast cancer who are treated with AIs vary considerably, with relapse for some patients within months and after many years for others.

    Sarat Chandarlapaty, M.D., Ph.D., of Memorial Sloan Kettering Cancer Center, New York, and coauthors conducted a secondary analysis of cell-free DNA from 541 patients enrolled in a clinical trial to determine the prevalence of mutations and whether they were associated with worse outcomes.

    The authors report 29 percent of patients had a mutation in the estrogen receptor and mutation was associated with shorter overall survival, according to the report.

    "Mutations in the estrogen receptor are common in patients with metastatic breast cancer who were previously treated with an aromatase inhibitor and are associated with worse outcomes," the authors conclude.

    Article: Prevalence of ESR1 Mutations in Cell-Free DNA and Outcomes in Metastatic Breast Cancer, Sarat Chandarlapaty, David Chen, Wei He, Patricia Sung, Aliaksandra Samoila, Daoqi You, Trusha Bhatt, Parul Patel, Maurizio Voi, Michael Gnant, Gabriel Hortobagyi, José Baselga, Mary Ellen Moynahan, JAMA Oncology, doi:10.1001/jamaoncol.2016.1279, published online 11 August 2016.

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    Well Kira - yes 6 weeks off. So I was just wanting to inform with that post - that taking time off can help the efficacy of the treatment. So I'm sorry you got another one in the same place, same size. That sucks. I wish I could gather up these four topics we are bouncing around and shuffle them into chronilogical order. This one is about recurrence, then there's walking away and so on.

  • eastcoastts
    eastcoastts Member Posts: 352
    edited June 2017
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    Marijen:

    This question may not help organize this posting, which is very interesting, btw, but when you say your MO does "lots of scans and testing"...can you detail? Would love to know.

    Thanks!

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    Ok, I've been seeing her since I completed radiation, one year. I have had two Ct and Petscans since then. One 3D mammo on good side, one 3D mammo on cancer side, one 3D bilateral mammo, an ultrasound for 2cm lymph node in good side arm, 3 tumor marker tests, one is out of range so I get one every three months. An IBC test when radiation caused DBC - delayed breast cellulitis - she sent me to LEPT, thyroid nodule Ultrasound after which she sent me to a thyroid specialist. Cholesterol because of AI once a year. CBC And COMP metabolic as needed. And that's just my MO. Also get bone density from endocrinologist. And this and that from PCP who even gave me a MTHFR because I asked about it. ECHO from the heart doc and cbc for electrolytes for diuretic. All tests were necessary, I can't complain. But you should know you are getting short changed

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017
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    Wow marijen so many tests. I've never had a petscan nor a ct scan. I have no idea what stage you are. I'm stage 1a so very little testing

  • eastcoastts
    eastcoastts Member Posts: 352
    edited June 2017
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    Thanks! That sounds very comprehensive indeed. ;)

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    I'm IIA, ocult primary, DCIS removed, ANLD 1/12 nodes. 3mm cancer in one node. I asked how many cancer cells in 3mm BC said thousands

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    KIra you should have had a CT and Pet scan the first time around to make sure you were clear of mets. How do you know now?

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017
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    So idc with it in your lymph node. Have you had it a second diagnosis? Did you do chemo which I'm guessing was recommended?

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017
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    My oncologist goes by symptoms. I have none. I'm still 1a. I'm okay with his plan. I talk to a nurse monthly who's monitoring issues

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    But still it came back once. Yes IDC. No chemo for ER PR POS HER neg plus it was not recommended due to heart. I would not have done it anyways. Didn't want radiation either but because prinary was occult I did

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017
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    Myfirst suggested chemo that was a nightmare. This time around the one I'm seeing said no. I might add he's okay with no als at this point I'm the one pushing for them

  • KathyL624
    KathyL624 Member Posts: 47
    edited June 2017
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    I think no scanning is pretty typical for Stage 1

  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    Did he say why he's ok with no AI? I imagined if I had chemo it would have killed me or been the worst nightmare of my life. I'm a lightweight.


  • kira1234
    kira1234 Member Posts: 754
    edited June 2017
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    I've been on them for 6 almost 7 years already marijen. I only had 1 chemo treatment I ended up in the hospital

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017
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    Kathy you're correct for stage 1

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    If you ever want to know the standard of care for a condition go to NCCN.ORG and sign in, then search. Thnk of all the doctors and their information differs so in the end they just choose standard of care

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017
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    an excellent resource I've used many times. Thanks marijen

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    You're welcome. I finally remember where we talked before it was at the iodine thyroid topic. We both have thyroid, eyes, and AI/recurraence concerns. Have you seen the calculator that figures how AI will increase your life by how much?

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    Here's the life math link -it's at FEMARA, last coupld days discussion.



    http://www.lifemath.net/cancer/breastcancer/therap...


  • kira1234
    kira1234 Member Posts: 754
    edited June 2017
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    Yes I have seen that risk link.

  • dtad
    dtad Member Posts: 771
    edited June 2017
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    Hi all. My BS and MO and a major NYC university hospital say the protocol for stage one is no scans or bloodwork. Just mammos if you still have breasts and physical exam for local recurrence if you had a mastectomy. Apparently its been proven that doing these tests make no difference in survival rates at all and possibly cause more anxiety. So its just symptomatic. Any new complaint lasting 2 weeks or more should be reported and investigated. Not very reassuring I know. Basically they are saying you have to wait to see if you progress to stage 4 before they do something! Good luck to all...

  • Houston2016
    Houston2016 Member Posts: 248
    edited June 2017
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    Kira1234; I think every OC does a CT scan to begin with to set the stage. I guess they can see the biopsy how far the cancer went but you never know. Mirajen, wow, I can't get my OC to do even one test, do you have symptoms to get all that done? It's good to do test if necessary to monitor recurrence. I don't think too many tests are good because it will become excessive and they are toxic with carcinogens anyway.

  • marijen
    marijen Member Posts: 2,181
    edited June 2017
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    Yes there was cause - I had BC : )) with an occult primary to begin with. More causes were in my post above. One thing led to another. I told her I didn't want to be a hypochondriac, but I would be very upset if something was missed which led to spreading (mets). She knows if she orders something for me I'll go and get it and won't put up a fuss or complain. I would say she's dedicated to her work. Some docs lie to you and actually believe you are buying it. Don't let them think that.

  • kira1234
    kira1234 Member Posts: 754
    edited June 2017
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    Houston I've never had a ct scan either time. The first time I did have an mri. I actually asked him when I had my recurrence this year should I have some tests and he said no

  • Emily2008
    Emily2008 Member Posts: 30
    edited July 2017
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    Interesting...when I had my first dx the follow ups that I had were bloodwork and chest x-rays every 6 months. I never had a bone scan or CT.

    After my recurrence was diagnosed, my MO ordered an MRI, bone scan, and CT to make sure I wasn't dealing with mets as well. Now I have a bone scan and CT every 6 months, which will continue for 2-3 years, per my MO. He said if after 3 years everything looks stable, "we can relax a bit with the scans."


  • kira1234
    kira1234 Member Posts: 754
    edited July 2017
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    Very interesting seems there is no consensus on how to deal with reacurrance.