Aromatase Inhibitor and just walking away.

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  • Brutersmom
    Brutersmom Member Posts: 563
    edited July 2017

    Octogirl. You are correct. Many of these drugs can cause cataracts. I had cataract surgery in 2006 due to early onset from using steroids for allergies. My vision was corrected by the surgery to 20/20. I noticed a gradual deterioration of my vision after about 6 months on Arimidex. I see a retina specialist for a previous tear in my retina most likely related to the cataract surgery. He was concerned about my decreased vision. I was at 20/50. He was noticing changes in the interior of my eyes that reminded him issues seen in woman in the 90's. When I saw him this year several weeks after I stopped Arimidex my vision was back to 20/20 and he noticed improvement in the interior condition of my eyes. I told him I stopped Arimidex and he said most women needs some estrogen in there bodies to remain healthy. He had his theories on the drug and said that drug has its value but he is concerned that it can destroy quality of life. The retina specialist and my medical Dr. said someone do well on the drug and others seem to have it reduce their quality of life to 0.

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

    Wow Brutersmom, you have a great doctor. Much needed input, thank you.

    Did you by any chance have vitreous clouding

  • Falconer
    Falconer Member Posts: 1,192
    edited July 2017

    I opened the thread to the first NIH study you posted , marijen, and read the abstract. Gawd. (I'm originally from Jersey). What an SOB the AI is. Seeing the MO on Monday for my three month follow up. Will add that to the list of concerns. Thanks for keeping us informed.

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

    Falconer, I'm bringing the first page to my MO Thursday so she can look it up. It's very long I would run out of printer ink.

    I'm bringing this one too


    https://academic.oup.com/annonc/article/24/6/1443/180703/Aromatase-inhibitor-induced-arthralgia-a-review

    This one mentions trigger finger and carpel tunnel which they are all in denial about

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

    MO took me off letrozole today until she follows up with my opthamologist. Although I don't think she appreciated that I brought her the Breast Cancer and Vision study.

    What do they expect from us? We get short visits every three months, and it's no Ok to find information on our own. The thing is the fellow who wrote the article with many many references is from the same teaching hospital where I get help. And I pointed that out. Would even the female docs respect us more if we did/say nothing? I also brought her the AIA study because she doubted AI could cause trigger fingers and carpel tunnel.

    Sorry if I refuse to roll over and die.

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

    So I asked my MO today what is my percentage of recurrence with and without AI, and she didn't know. I asked her if she woukd figure it out when she had time to which she replied "the calculator they used has been broken down" for a year??

  • arby
    arby Member Posts: 126
    edited July 2017

    I gather hope when what I've experienced on a med is validated by others' experiences. I too did not sleep well the first 10 months on Arimedex. Felt a little foolish complaining. But then, I identified with a worship song :" What if your blessings come through raindrops, what if your healing comes through tears? What if a 1000 sleepless nights is what it takes to know He's near....." I finally embraced the course of treatment and said "could be worse' and then I started to sleep better. I have played around with the time of day I take it. Usually from 11 am -2p.m. works best. If I don't remember til 5 p.m. I for sure skip it. ANd NEVER do I take it in the morning. I think it has a caffeine like affect. And that really triggered my anxiety. Interrupted sleep is hell. Hope that those of you still struggling with this issue have found a remedy. It is disappointing to see that recurrences have still happened even with this treatment. And I was put on it with no breasts left....so I assume its to help prevent cancer cropping up somewhere else. 3 years down, 2 more to go then the arthritus like SE's should disappear!.

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

    “Non-SUICIDAL???” Are you sure you didn’t misread (or the author didn’t mis-type) “non-STEROIDAL?” Exemestane is a steroidal AI, whereas letrozole and anastrozole are non-steroidal. The end result is the same for all three—the action of aromatase in converting androgens to estrogens is inhibited—but at the molecular level the process is slightly different for steroidal vs. non-.

  • marijen
    marijen Member Posts: 3,731
    edited July 2017
  • Brutersmom
    Brutersmom Member Posts: 563
    edited July 2017

    Marijen, He never really said. I have pebbling of the retina which is age related. I also have floaters as a result of the retinal tear. I know that I had trouble seeing well because of the floaters. That issue is minimal now and the pebbling has gotten better witch the eye Dr. found odd. He said that usually gets worse. That was how the conversation got started about the drug and estrogen.

  • Optimist52
    Optimist52 Member Posts: 302
    edited July 2017

    marijen, your MO sounds like too many other doctors, arrogant and unwilling to accept that a layperson can actually do proper research and find out new information. I find I have to be extremely tactful when mentioning medical research articles I've read to my doctors. There's a strange conspiracy I believe amongst many doctors to either downplay or completely ignore their patients' experience of side effects.


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

    Thanks Optimist. Well she was an hour late and in a big hurry and so it was difficult to be tactful. She is the best dr. I have so I am giving the benefit of the doubt. And she didn't miss a beat with all we had to cover, Timing was bad but it was the only chance I had..... Turned out she had just returned from vacation and was behind. I'm hoping she will see I was trying to help.

  • Debutante8
    Debutante8 Member Posts: 45
    edited July 2017

    Hi-- You will see the meds I have been on in my signature. I have walked away.

    I stopped taking Tamoxifen (was going to be on it for 10 years) after my hysterectomy last spring. The other two meds made me feel horrible. My body hurt so bad all of the time--I was having trouble walking, lifting, using my fingers and hands, etc. I couldn't take it anymore. I decided I had to focus on my quality of life now (I'm 47). I feel so much better!! I do worry sometimes though...

  • wabals
    wabals Member Posts: 242
    edited July 2017

    Debutante8

    I have been off arimidex for 2 mos and feel so much better. My liver enzymes were elevated and now are normal. Do not know yet whether I will try another drug. If I do my hepatologist will watch me closely

  • Falconer
    Falconer Member Posts: 1,192
    edited July 2017

    debutante, I completely relate to your experience. I'm 46 and feel physically lousy a lot of the time. I'm considering switching to Tam, but know that is not great either. Such a terrible dilemma!

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

    I've been on Arimidex for 2 months now and my contact dermatitis is breaking out everywhere. Does anyone know if this can be a side effect. I'm using my steroidal cream but it's not even touching it. I've used an entire tube in one week. This can't continue a tube should last a month if not longer

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

    From rxlist.com, this does not sound like a good choice to me.... what about Aromasin?

    ARIMIDEX®
    (anastrozole) Tablets for Oral Administration

    Each tablet contains as inactive ingredients: lactose, magnesium stearate, hydroxypropylmethylcellulose, polyethylene glycol, povidone, sodium starch glycolate, and titanium dioxide.

    For Consumers

    What are the possible side effects of anastrozole (Arimidex)?

    Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

    Call your doctor at once if you have a serious side effect such as:

    • sudden numbness or weakness, especially on one side of the body;
    • sudden severe headache, confusion, problems with vision, speech, or balance;
    • a bone fracture;
    • swollen glands;
    • feeling short of breath;
    • nausea, upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice...
    Read All Potential Side Effects and See Pictures of Arimidex »Indications & Dosage

    INDICATIONS

    Adjuvant Treatment

    ARIMIDEX is indicated for adjuvant treatment of postmenopausal women with hormone receptor-positive early breast cancer.

    First-Line Treatment

    ARIMIDEX is indicated for the first-line treatment of postmenopausal women with hormone receptor-positive or hormone receptor unknown locally advanced or metastatic breast cancer.

    Second-Line Treatment

    ARIMIDEX is indicated for the treatment of advanced breast cancer in postmenopausal women with disease progression following tamoxifen therapy. Patients with ER-negative disease and patients who did not respond to previous tamoxifen therapy rarely responded to ARIMIDEX.

    DOSAGE AND ADMINISTRATION

    Recommended Dose

    The dose of ARIMIDEX is one 1 mg tablet taken once a day. For patients with advanced breast cancer, ARIMIDEX should be continued until tumor progression. ARIMIDEX can be taken with or without food.

    For adjuvant treatment of early breast cancer in postmenopausal women, the optimal duration of therapy is unknown. In the ATAC trial, ARIMIDEX was administered for five years [see Clinical Studies].

    No dosage adjustment is necessary for patients with renal impairment or for elderly patients [see Use In Specific Populations].

    Patients With Hepatic Impairment

    No changes in dose are recommended for patients with mild-to-moderate hepatic impairment. ARIMIDEX has not been studied in patients with severe hepatic impairment [see Use in Specific Populations].

    HOW SUPPLIED

    Dosage Forms And Strengths

    The tablets are white, biconvex, film-coated containing 1 mg of anastrozole. The tablets are impressed on one side with a logo consisting of a letter "A" (upper case) with an arrowhead attached to the foot of the extended right leg of the "A" and on the reverse with the tablet strength marking "Adx 1".

    Storage And Handling

    These tablets are supplied in bottles of 30 tablets (NDC 0310-0201-30).

    Storage

    Store at controlled room temperature, 20-25°C (68-77°F) [see USP].

    Distributed by: AstraZeneca Pharmaceuticals LP Wilmington, DE 19850. Revised: May 2014

    Side Effects & Drug Interactions

    SIDE EFFECTS

    Serious adverse reactions with ARIMIDEX occurring in less than 1 in 10,000 patients, are: 1) skin reactions such as lesions, ulcers, or blisters; 2) allergic reactions with swelling of the face, lips, tongue, and/or throat. This may cause difficulty in swallowing and/or breathing; and 3) changes in blood tests of the liver function, including inflammation of the liver with symptoms that may include a general feeling of not being well, with or without jaundice, liver pain or liver swelling.

    Common adverse reactions (occurring with an incidence of ≥ 10%) in women taking ARIMIDEX included: hot flashes, asthenia, arthritis, pain, arthralgia, hypertension, depression, nausea and vomiting, rash, osteoporosis, fractures, back pain, insomnia, headache, bone pain, peripheral edema, increased cough, dyspnea, pharyngitis and lymphedema.

    In the ATAC trial, the most common reported adverse reaction ( > 0.1%) leading to discontinuation of therapy for both treatment groups was hot flashes, although there were fewer patients who discontinued therapy as a result of hot flashes in the ARIMIDEX group.

    Because clinical trials are conducted under widely varying conditions, adverse reaction rates observed in the clinical trials of a drug cannot be directly compared to rates in the clinical trials of another drug and may not reflect the rates observed in practice.

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

    Marigjen I'm allergic to rubber and nickel. I'm wondering about the fillers. I was on femara and Aromasin before tamoxafin. All together I've been 3 years on the Als and 4 on tamoxafin. My oncologist was very concerned I'd have trouble with this one too.

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

    Kira, can you stop it for a week and see if the rash goes away? The fillers worry me too. Especially the polyethelene glycol. Ethelene glycol is anti- freeze. We need a chemist to translate

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

    I know I saw those 2 things as well. Why are they using anti-freeze in it?

    Yes I'm going to stop. My monthly nurse contact will be calling Tuesday and I'll talk to her. My oncologist actually suggested I take nothing. I wasn't really comfortable with doing that so Arimidex was offered.

    If I can't take this there's really nothing left. Tamoxafin has been the only one I could handle but the reacurrance occurred while on it.

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

    You misunderstood, I don't know what polyethelene glycol is - that's in the filler. Ethelene glycol is what they use in anti-freeze. I guess some of us just can't take these powerful drugs. Letrozole is the most powerful.

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

    I think I'll give my dermatologist a call as well. I'm hoping there's some way to work this out. I realize it's the original tumor back because of how it was treated 7 years ago.

  • SJI
    SJI Member Posts: 69
    edited July 2017

    I finished rads on June 28 and saw the MO in mid July. He wants to put me on Tamoxifen. In order to reduce the chance of worsening hot flashes, I'm supposed to get acupuncture treatments first. I plan to start those this week.

    He told me my risk for recurrence was between 15 to 20 percent. If I continue my exercise regime - which is 3 hours of cardio a week - the risk is reduced 40 percent to 9 to 12 percent. If I take Tamoxifen it reduces the risk another 50 percent to 4.5 to 6 percent.

    I'm really apprehensive about side effects of hormone therapy especially joint pain, eye problems and depression. I don't know that an additional 4.5 to 6 percent risk reduction is worth it. I'm 64, my lobular cancer was slow growing, Stage I Grade I. If I was younger, or if it was a more aggressive cancer I'd take the drugs. I expect to have many more years of being active and healthy and don't want to deal with side effects. It seems going to zero estrogen is just asking for trouble.

    What's silly, is I'm worried the MO will get angry if I decide not to take it.

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

    I have eye problems and my MO took me off letrozole until she talks to the opthamalogist, but even so every pill I take will be in fear from now on. Agree that taking estrogen down to nothing is a bad idea. Is walking 7 days a week considered cardio? Because that's what I've been doing 30 min or an hour depending on the weather

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

    We'll never be at 0 as our bodies continually produce.

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

    SJI....hi there. So are you saying that your MO actually admitted that your exercise routine lowered your recurrence rate by 40 percent?! I've always believed this to be true but never heard a doc confirm it. IMO that's amazing new, especially for those who cannot tolerate anti hormone therapy. Also if being on anti hormone therapy makes it difficult to exercise than isn't that contradictory? Food for thought.

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

    This was shared to me today. I intend to discuss with my oncologist.

    https://integrativeoncology-essentials.com/2016/03...


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

    Excellent link Kira. I saved it too. I wish I could find one with recurrence rate for letrozole vs. no AI - Absolute percentage

  • Brutersmom
    Brutersmom Member Posts: 563
    edited July 2017

    Marijen, Yes walking is cardio. The faster the better. That is good. You also need to do things. To build muscle in you arms and upper torso. I guess my question is are you considered overweight? I was told by the physical trainer that I am about 40 lbs over weight. I thought I was only about 20 lbs. I had started watching what I ate just before I was diagnosed and lost 25 lbs. Then I was diagnosed with breast cancer. On Arimidex I gained back 10 lbs, all in the stomach area.

    The Dr.s didn't give me a number. They basically told me to loose weight. I don't think that they consider this route for prevention because it requires commitment to changing the way you think about food and activity. So far have lost 9 lbs since the end of June. About a week and 1/2 ago I joined the gym so I could work on my whole body.

  • MargoChanning
    MargoChanning Member Posts: 97
    edited July 2017

    Thanks, Kira1234 - great link.

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