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Aromatase Hormone inhibitor “5 year pill” side effects?

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Has anyone used these?

what were your experiences as far as side effects?

cardio-muscular-bone damage?

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  • mandy23
    mandy23 Member Posts: 104
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    Hi @mabellean -

    Welcome to the forum. Sorry you have to be here, but glad you have found us.

    There are several different aromatase inhibitors. The most common lately I think is Letrozole (the generic form of Femara). It is commonly taken for about 5 years. I assume that is what you are referring to? There are also others.

    This forum is a good place to start your reading:

    https://community.breastcancer.org/en/categories/hormonal-therapy---before-during-and-after

    You can find other experiences there. Some people have many problems with them and others have just minimal side effects. If it is recommended by your MO, sometimes the best thing is to try it and see how it goes for you, since each of us is different.

    Best of luck with your decisions.

  • moderators
    moderators Posts: 7,966
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    @mabellean, welcome to Breastcancer.org. We're sorry for the reason you had to find us, but you're in the right place! There are many members here who have experience with this type of treatment, and we're sure they'll be happy to share their insights. Have you started taking aromatase inhibitors, or are you considering them as part of your treatment plan?

    If you have a moment, fill out your Profile, and create your post signature so others can see your diagnostic and treatment information. The more details you share, the better we can offer support tailored to your specific situation. Let us know if you need help with that. We're here for you!

    Sincerely,

    The Mods

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,780
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    mabellean,

    Has anyone used aromatase inhibitors? Yes, this is a very common treatment for ER+ breast cancer. As mandy 23 noted reactions/side effects vary greatly from person to person. It certainly can have a negative effect on bone density but this is monitored during treatment. Take care

  • gailmary
    gailmary Member Posts: 428
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    Mabellean, I understand your question different. As in there is no "5 year pill" but pills you take daily for 5 years.

    We all react differently just as our cancers are all unique. I took letrezole (Femara) for 4 years with mild joint pain and insomnia. Then nothing for 4 years and then again 4 years later for 2 more years. The second time the joint pain wasn't a problem at all.

    My feeling is it's necessary to beat the alternative. Side effects can be dealt with IF you have them.

  • maggiehopley
    maggiehopley Member Posts: 106
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    I have been on an aromatase inhibitor- anastrozole- for 15 months. I have had various side effects, but I want to stress that they have not all been at the same time and they have not been continuous. For the last two or three months I have had no side effects at all. Previously, I have had hot flashes, joint pain, headache, low libido, vaginal dryness, irritability, and metallic taste in my mouth, but I have never had all of these at the same time, and they have come and gone, usually lasting a couple of months at a time. Don't make any assumptions about side effects since every one is different.

  • ninaca
    ninaca Member Posts: 228
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    Maybellen- I took femara (letrozole) for 13 years which kept my liver metastasis in remission until 2015. I don't remember much of the side effects except vaginal dryness and a little joint pain in my thumbs. My bone scans showed osteopenia the whole time and still does, no major changes. It was a great pill for me- hopefully for you. We don't know until we try and see what it affects us individually.

  • mabellean
    mabellean Member Posts: 21
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    Thank you everyone for your kind responses.

    Still very much in shock of what I thought was a non-invasive growth area confined to a right milk duct and removed has become a waiting period to find out the Pathology Report on February 1 findings to see if the second operation to remove the invasive ductal and lobe carcinoma passed to clean borders.

    Quite sensitive to drugs and am seeking as many alternatives as possible and hoping that the oncologist I will be referred to is able to find a hormone blocker I can tolerate.

    Here is a resource amongst many technical references that may help others:

    https://www.lifeextension.com/protocols/cancer/breast-cancer

    May GOD grant all here complete healing and comforts.

    Serving I AM with you,

    ~ Mabellean

  • mabellean
    mabellean Member Posts: 21
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    (Cross - Posted on Femara Topic Area)

    Gulp.

    About to start taking Femara tomorrow.

    Is it really going to be worth it?

    I had a 5 way heart operation but now 2 have re-blocked arteries plus my left (widow maker) is 50% blocked.

    [I had an angina attack yesterday after coming home from my office visit with oncologist.

    Quite painful and after alia-seltzer and 2 aspirins was able to take a nap. Then woke up out of pain.]

    What will Femara do to those arteries?

    The side effects may be daunting.

    Will taking calcium supplements as GP and oncologist suggest further block these arteries?

    Already taking Vitamins D3 and Vit K2.

    Yet to be determined with an upcoming appointment with a radiologist if I need courses of radiation for 3-4 weeks - 5 days a week.

  • mabellean
    mabellean Member Posts: 21
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    UPDATE:

    I was turned down after having a stress test run to get the stent I believe I need in my left coronary artery which is 50% blocked. 2 other of my coronary arteries are now occluded also.

    So disappointed that a heart functioning only 50-55% heart is not worthy of a heart catherization. My angina is being minimized as it could be indigestion. WRONG!

    It was determined I would not need radiation treatments at this time but wait until the end of July to see if my cancer has returned determined by mammogram, sonogram, and MRI.

    The radiologist did clue me in that a mammogram and sonogram are NOT enough to catch small mm cancer and I should have a MRI as well. I will be sure to press his office to make sure the breast center does another MRI like the first time.

    NOW on Day 19 of Letrozole and exhaustion and imbalance is setting in.

    I take a supplement of Glucosamine, MSM, and Chondroitin capsule and instead of calcium supplement I believe would further block my arteries opted for a scoup of collagen peptides,

    I began physical therapy today to be 3 days a week for at least 1 month to strengthen my legs and improve coordination.

    My POTS condition that produces low blood pressure readings always a concern when I have been exercising or get too hot easily.

    Does anyone else have coronary heart disease and blocked arteries?

    High blood pressure mixed with too low of blood pressure?

    Been turned down for stent implantation?

    Have trouble falling asleep?

    Suggestions?!

  • mabellean
    mabellean Member Posts: 21
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    Dear Community and wonderful moderators,

    Thank you so much for this meeting and the notes!I will explore the links.I signed up for the Thursday meeting also. There isn’t much here in Knoxville as far as local groups to attend, GOD bless you ladies for all you do. I do a devotional group of people from many regions of our land.

    The main message is “balance” and “keep standing.” From this meeting.

    My contacts are followers of I AM and some have had breast cancer or other very serious physical and mental challenges or have dear friends and family struggling. There are 3 ordained ministers.

    Two group members of this special distribution list are nurses working in oncology units.

    ~ Mabel Lean

    ========================================

    On Mar 13, 2024, at 11:17 AM, anita  wrote:

    Thank you for sharing this with us.

    The staff and the barber were so kind and are shining examples to learn from and follow.

    Love Anita

    =======================================

    TO Miss Anita, A Devotional Bible Gateway Distribution Member:

    Miss Anita you are quite welcome.I do want to share this journey with y’all my dear friends and family members.

    We may be born alone and pass away alone but the journey is shared between the dashes of time of coming and going with those GOD places in our paths.I went to my first physical therapy session at Benchmark to keep balance and build stamina.

    It is difficult given my debilitated state of inadequate blood flow from blocked arteries, breast cancer operations, and daily now angina attacks to “keep on standing” as one of the ladies so eloquently stated in the Zoom conference.She does as I do now that warm weather is back tries to go outside and garden 🪴 and listen to the birds 🦅 sing and watch her dog 🐶 play chasing squirrels 🐿️ . 

    As I told Jannie of Staten Island in text today after sending her my travelog of pictures weeding yesterday, first Benchmark Physical Therapy session, then going to Wallyworld for my first refill of Letrozole, returning home and doing a garden 🪴 tour with Miss Mabel our Border Collie, now finishing filling med boxes, taking BP to document, then eat a banana, hunt more food etc.

    To J:

    Tomorrow 11:00 is Benchmark then resumes Monday at 10 AM Have exercises to do.

    I was on an exercise recumbent bike for 10 minutes. Started getting banding around wrist 4 1/2 minutes into but kept going.

    Was fussed at by <physical therapist> for keeping going. Now cardio-rehab <I previously completed program> would have wanted me to go thru the angina.

    Did balance exercises standing then on exercise table.They are supposed to send report to Dr. ==== of appointment recordation. And My day so far now have time to finish devotional.

    My theme to pursue is "balance" and "still standing" per The Holy Spirit Exegesis given time in the last 2 days.

    Much love ❤️ to y’all!

    ~ Mabellean

    ===========

  • moderators
    moderators Posts: 7,966
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    Dear @mabellean, we're thrilled to have you with us and to see your active participation in exploring the resources and signing up for the Thursday meeting as well. "Balance" and "keep standing" are powerful messages. 💙 We wish you to continue visiting and participating in our meetings. Your presence adds so much to our community!

    Sincerely,

    The Mods

  • blums8
    blums8 Member Posts: 18
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    I am taking anaztrozole and dealing with some side effects. I have some joint pain, tiredness and low libido. I am deciding whether I should try a different Aromatase inhibitor. Does anyone have mild depression as a side effect?


    thanks

  • pinkrules
    pinkrules Member Posts: 97
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    Plums8, it honestly sounds like you are doing well on anaztrozole! Your side effects are mild compared to what I went through! I would stick with it before changing to another. My opinion of course. As for mild depression, I went through that only after I had allergic reactions to both anaztrozole and its brand name arimidex but I didn't experience depression when on them. I think the whole experience of dealing with breast cancer can cause depression but its important to let your doctor know. My oncologist wasn't concerned with my mild depression though. She's now putting me on exemestane three days a week. New studies show three days a week are just as effective as taking them daily. Crossing my fingers for both of us!

  • mabellean
    mabellean Member Posts: 21
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    Ladies,

    As time goes along since my cardiologist ruled out with a stress test reading of 50-55 heart functioning I am increasingly getting more concerned of the real possibilities of the side effects of Letrozole on my failing heart.

    https://search.brave.com/search?q=letrozole+side+effects&source=web

    Specifically higher blood glucose levels triggering once again Diabetes II out of control, higher LDL levels, exhaustion from insomnia, weight gain, muscle wasting, joint damage, and bone loss … all to contribute to Clinical Depression with a capital D.

    I can't seem to impress upon Doctors at this time artificial number of the cut off below 50 heart functioning the only reason to not stent my left coronary artery.

    I have completed Day 2 of Benchmark Physical Therapy … however today I am again having angina with pressure on my sternum radiating to between my shoulder blades and banding pressure on just below my left elbow.

    I do have an appointment to see my General Practitioner next Wednesday before a Benchmark session to discuss indeed what can be done to find cooperative cardiologist who is willing to stent my artery. Find solutions to the side effects I will and am beginning to counter. I will ask for a blood draw to see if my controlled blood sugar go out of control again. I was able to lose 70 lbs using GOLO and Timed Released Eating (TRE) with a very strict diet that brought down the numbers,

    So ladies, what aromatase inhibitor has the very fewest side effects ?

    Has anyone come up with a likely alternative carrying fewer problems to our overall fitness?

    It seems the intrusive ductal and lobular cancer HER+ has over-ruled all other aspects of my health including my cardio fitness. All my hours of cardio-rehab from Nov 1 to Jan 10 pre my first breast cancer operation strengthening of my cardio system building have evaporated.

  • mabellean
    mabellean Member Posts: 21
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    Thank you @pinkrules for this:

    exemestane

    https://search.brave.com/search?q=exemestane&source=desktop

  • mabellean
    mabellean Member Posts: 21
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    Must stop Letrozole.

    I can’t exercise without becoming so dizzy 1 breath away from passing out with BP of 87/47.

    Letrozole Aromatase Inhibitor 2.4 mg By Prescriber - Dr. —, — Oncology — , TN (began 2/20/2024 to ended 4/5/2024)

    1. Hot flushes and sweating
    2. Feeling very tired / exhaustion
    3. Loss of sleep / night sweating / awakening to urinate
      4, Losing appetite
    4. Hair loss
    5. Low mood
    6. Muscle weakness, pain or swelling in the joints or tendons in legs, shoulders, and chest
    7. Chills / Sweats alternating
    8. Unstable angina, pain, wildly fluctuating blood pressure over 200/100 to below 87/47 each day M, W, F.
    9. Sunday even without exercise BP spiked to 198/102 at 9:38 AM with cardio meds including Clonidine add on went to 88/62 standing BP at 10:42 AM.
      As a result, unfortunately too ill to attend Church Service.
      Hoping to be able to complete Physical Therapy for a full session of 1 hour next Monday 8, Wednesday 10, Friday 12.
      April Monday 1, Wednesday 3, and Friday 5 only got in 45 min. of exercise until BP diastolic dipped below 50 and was too dizzy to continue.

    UPDATE:

    Was able to complete Physical Therapy Monday.
    Took mononitrate after exercise.
    Took regular heart medication approximately 2 hours beforehand.
    Relieved this is over.
    I will not look back.
    Looking forward in prayer that cancer remains gone.
    I will know the last week in July when I get another 3D mammogram, sonogram, and MRI if the cancer remains gone.
    Hoping the neuropathy in legs goes away caused by Letrozole and the lipids start going down.
    Upshot:
    Slept somewhat better last night.
    Should get my dopamine booster pills soon.
    Letrozole killed my dopamine levels.
    Hope the natural level does come back.
    Without dopamine I was head for Parkinson’s and dementia.

    For me I see no other course that makes sense.

    We each are different in physical designed make-up.

    Pray for me ladies as I will pray for you also for complete healing.

    ~ MabelLean

    Surgery 1/26/2024DX 1/2024, Right, Intrusive Carcinoma, Stage IA, Grade 2, ER+, PR+, HER2+, ISHTreatment - Letrozole Aromatase Inhibitor 2.4 mg  - Oncology, (began 2/20/2024 to ended 4/5/2024)