Aromatase Inhibitor and just walking away.

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  • Brutersmom
    Brutersmom Member Posts: 563
    edited July 2017

    dtad my surgeon said the same thing. The difference is it is easier to pop a pill then to exercise, eat better and loose weight.

  • Falconer
    Falconer Member Posts: 1,192
    edited July 2017
    Brutersmom, congratulations! Great news on the weight loss! Consider joining the Let's Post Our Daily Exercise thread if you haven't already. Great support for sticking to exercise!
  • Brutersmom
    Brutersmom Member Posts: 563
    edited July 2017

    Kira1234, That is a great article. That is why I choose no chemo. My absolute benefit was 4% in 5 years and 0% after 10.. The MO who is no longer my MO said it was 50% benifit. When I went for my second opinion they explained it the way the article did and he laid out the side effects vs the benefit.

  • LindaKR
    LindaKR Member Posts: 1,577
    edited July 2017

    what is the magnesium supplements you are taking?

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

    Marijen and everyone else here's another link.

    http://www.predict.nhs.uk


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

    Thanks Kira, my problem is I had occult tumor and one positive node. The node was 2.1 cm after six month LEtrozole and 3mm after surgery and pathology. So I'm not quite sure how to fill out the form? I put 3mm in the tumor section because it wants an amount, even though there was none found and 1 positive node and I get 1% and 3% for 5 and 10 years- what do you think? Good guess? ErPr POS.

    Just got back from lept and I'm supposed to add swimming. I like swimming, I don't like public pools....

    Bruthersmom, again you have a great doc.

    Thx all

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

    Marijen I really don't feel these calculators would work for you. What is your oncologist recommending? Are they able to run the oncotype test?

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

    Kira, no primary tumor so no oncotype. My Mo said last week their calculator has been down for a year! She said sonething about a British one, but I was asking her to give me the percentage of recurrence if I stay off the Letrozole. I doubt I'm going to get that

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

    The British one is the one I gave you

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

    Well maybe I'll print out the British one and and ask her to help me to fill it in but that won't be until late Oct. and it still won't reference recurrence...

    I wasn't sure if there was more than one British calculator.

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

    Marijen are you going to be getting chemo?

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

    Musclechemistry.com???Marijen, I would hardly take a bodybuilders' forum—especially one with ads for supplements--as authoritative when it comes to describing the pharmaco-chemistry of various AIs. I still say it's more properly “non-steroidal," not “non-suicidal." Especially when oncology and pharmacology—both for doctors & patients—sites say “non-STEROIDAL.” (Drugs are chemicals, incapable of committing suicide or even self-destructing—they need another substance or process to “destroy,” much less alter them). Sites like that are notorious for misspellings. Heck, even among lay posters on our forums, look at all the misspellings of “mastectomy,” “tamoxifen,” etc.

    Arimidex, Aromasin, and Femara (aka anastrozole, exemestane, and letrozole) will all have similar profiles & descriptions in their package inserts—same contraindications, symptoms, warnings, etc. Some people can tolerate one kind better than the other. And even among various generic formulations of the same drug, inactive ingredients affect different people differently.

    And anything that gets your heart rate into the “target" range for your weight & age for >10 minutes is “cardio." (Some people do timed circuit training on weight machines to kill two birds with one stone). There are plenty of sites to help you calculate it—and there's a poster for just that on the wall at my gym. Of course, 30 minutes is better. Take your pulse and walk faster or uphill (or climb stairs) if it's too normal. Needn't be 7 days/wk either—and mixing it up (walking one day, biking—regular or stationary, elliptical, rowing, jogging if your joints are okay, swimming, etc.) helps your body adapt and works different muscle groups along with your heart. (Do as I say, not as I do—or fail to do).

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

    Well it's not a misspelling. Bodybuilders all over the place are using Aromatase inhibitors. It's all over you tube too. Look it up. Maybe the boys know something we don't. They are using it for testerone increase and the rebound effect seems to be well known, whether they call it non-suicidal or not. I don't care, it's something to think about when stopping. We don't want an estrogen surge either. We need a chemist and body builder here!

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

    Yes, “non-suicidal" IS a misspelling, or at least an ignorant misnomer coined by semi-informed laymen who are essentially abusing a drug whose only valid purpose is either for adjuvant breast cancer therapy or as part of the prep for in vitro fertilization. There is no such thing as a “non-suicidal" drug. I never said that bodybuilders don't use aromatase inhibitors, nor that they don't know why they would work for that off-label purpose. Letrozole*, a non-steroidal AI, would be less harmful for them because the steroidal one, exemestane, would have more intense and dangerous side effects in men. AIs of any kind (and withdrawal from them) do not cause “estrogen surge" in postmenopausal women, at least not in the relatively low doses we are prescribed.

    "The boys" are idiots and are cruisin' for a bruisin' down the line. I still can't believe you are seeking medical information from a bodybuilders' website. I know we can get frustrated sometimes when there are limits to what legitimate medical science can do to ameliorate side effects, and that we want to get answers any way and anywhere we can, but it is really dangerous to do that. It's only one step removed from consulting quacks that prey on cancer patients.

    *Edited per Jennie’s correction—I was so hung up on the stupidity of the term “non-suicidal” that I accidentally referred to Exemestane, rather than Letrozole, as “non-steroidal.”

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

    Actually, exemestane is the "steroidal" one, and anastrazole & letrozole are not.

    I've never seen the term "suicidal" applied to drugs on any medical site, though...




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

    Getting back to the subject of this discussion. I spoke with my nurse coordinator she agreed I need to stop Arimidex immediately. With breaking out everywhere with dermatitis since I started it.

    A call is in to discuss an alternative so tomorrow I'll be speaking with my oncologist and her again to make some decisions

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

    There's a post over at Christian ladies re: an endocrinologist who is disgusted by AI's. He told her messing with the bodies hormones is a bad idea and it can take up to a year for your body to right itself. But good for you - you are getting off!

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

    Marijen well I guess I'll not be using any of the anti hormonals. My oncologist has decided my SEs are to extreme

  • Brutersmom
    Brutersmom Member Posts: 563
    edited August 2017

    Marijen, My medical Dr. agrees the endocrinologist. I have been having some tendon issues and he has asked me to try and ride them out because they are the type of injuries that he sees with people on the aromatase inhibitors. He said it can take about a year to get a new baseline for my health. He did rule out some other causes but does not want to get to aggressive with test and stuff unless the injuries get worse. Fortunately they are getting better with time and exercise.

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

    Hi KB 870 - just got in - I'll post it in a few minutes. My archilles are starting to hurt and my feet hurt bad. Dr. said stop but I've been tapering, a friend says I should do what I think is right for my body, don't want that estrogen surge! I stopped before and it felt better pretty quickly.


    Here it is pg 477 thread for middle-age Christian ladies July 23.

    Just the paragraph that applies.

    I was admitted from the ER and EKG, bloodwork & CT scan were done so pulmonary embolism was ruled out. Once in my room boodwork & EKG were ordered all through the night & into the next day and a heart monitor was on for the duration. The doctor who had rounds was an endocrinologist. He said that a heart attack was ruled out but that being on the Exemestane played havoc with my body. He spoke of it with disgust. He said that when you mess up the hormones so badly it can mimic a heart attack or pulmonary embolism and more and that it may take me MANY more months to get straightened up and feel good. (I went off of the cancer meds after 1 year of them just withing this 2 weeks). So people are asking me if I am feeling better now and I have to admit I don't... as nothing was done - or can be done - for me. Just time. :o(

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

    Hi everyone...very interesting perspective of aromatase inhibitors by endocrinologists. I have been saying for a long time that they should be a part of our medical team. Most MOs just don't know enough about female hormones. Here is hoping! Good luck to all...

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

    We need them to be more assertive in thyroid testing too. Just a tsh test is bs IMHO.

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

    I think if you have breast cancer you need to have the entire panel to check for immune antibodies. Plus there is a test on the panel that Sas mentioned in her Gaining weight before cancer topic that may indicate thyroid cancer. Thyroid and AI issues are on my radar recently, ever since I found out I have nodules and PVD - posterior detached vitreous. I'm feeling better since I'm off the letrozole nearly. But I do believe that the hormones don't go back to normal in two weeks, like that endocrinologist said.

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

    I was off tamoxifen for 6 months and my hormones were definitely not back to normal. When I went on Arimidex I had no hotflashes which is why I believe this.

  • wabals
    wabals Member Posts: 242
    edited August 2017

    marijen I have posted about my positive ANA and anti smooth muscle ab and elevated liver enzymes while on arimidex. Also my TSH went up quite a bit from 6 mos previous.. I had a thyroidectomy years ago. Also my fasting blood sugar went from 80 to 101. Weird

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

    There are drugs that raise glucose, furosemide/lasix is one. My ANA was negative a few years ago, then it went to 40 which I think is borderline? No mention was made of it ever. I can't help thinking that it's all in the immune system which I don't know much about. I had one dr. Give me synthroid 88 six days a week, then my tsh was up on one test. Iwonder if that could be caused by missing a pill now and then. So the next dr. changed my dose to 75 7 days a week. And I had to point out that is practically the same amount but then tsh was down to .14 - and second test it was up to .41. I like it low. Too bad there isn't a home test

  • SJI
    SJI Member Posts: 69
    edited August 2017

    dtad: Yes my MO told me 180 minutes of exercise week reduces risk of recurrence by 40 percent. He mentioned it both times I've seen him. The topic of working out came up and he told me about the effect. It's a great motivation.

    Interesting about info from the endocrinologist. Wish mine hadn't retired.


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

    This is a great book. Starts with history of cancer research, ends with metabolic theory of cancer. I have two hours of listening to go


    Hi,

    I'm listening to Tripping Over the Truth: The Return of the Metabolic Theory of Cancer Illuminates a New and Hopeful Path to a Cure by Travis Christofferson, narrated by Clay Lomakayu on my Audible app. Try Audible and get it here:

    https://www.audible.com/pd?asin=B01C3BJ0KE&source_...



    image

  • scaredashell07
    scaredashell07 Member Posts: 272
    edited August 2017

    I don't know if this is the right place to post this question. I am on arimidex for the last two months. I am doing well with side effects except for some pain I'm having in my hip area. I'm a little bit concerned that it might be bone Mets it feels like almost like a shooting pain down my leg and in my joint area bear hip joint and some pain in certain spots on my sidehip bones. I called the oncologist and she said she is certain it's from our Arimidex but that's not enough for me so I'm going to ask for asking For a scan. Can the pain from arimidex localized to one area or it is more all over? Seems a bit better when I walk but then starts up again even as I sit. Also taking a lupron shot.

    Also am getting out my ovaries since I'm 45 premenopausal and won't have to take the Lupron anymore which causes more hot flashes and discomfort in legs

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

    Scared this is the link for the Ariimidex forum.
    https://community.breastcancer.org/forum/78/topics...

    I was on letrozole and the pains were equal on both sides. You could be having pain from bone loss or some kind of pressure on your vertebrae, or a dysfunctional hip. Or sciatica. It doesn't seem right to me that she blames it on an aromatse inhibor.

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