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Topic: Has anyone quit or reduced dosage of the hormonal therapy?

Forum: Hormonal Therapy - Before, During, and After —

Hormonal therapy medicines can be used to lower the risk of early-stage hormone-receptor-positive breast cancer from coming back, shrink or slow the growth of advanced-stage or metastatic hormone-receptor-positive breast cancers, and lower the risk of developing breast cancer in certain women who are at high risk. They work by lowering the amount of estrogen in the body or by blocking the effect of estrogen on breast cancer cells.

There are several hormonal therapy medicines, including, tamoxifen (Nolvadex, Soltamox), Arimidex (anastrozole), Aromasin (exemestane), and Femara (letrozole).

Hormonal therapy is usually prescribed for multiple years. Common side effects include hot flashes, joint pain, fatigue, and bone thinning.

Note: This is a safe place to share YOUR experience, not to be influenced or influence others. Please contact your doctor about any questions or concerns you may have if you are currently taking hormonal therapy.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Jul 21, 2019 01:02PM - edited Jul 21, 2019 01:03PM by sumomo

sumomo wrote:

I am considering to quit, after taking Tamoxifen for a year, Letrozole for three months, then Exemestane for a month. Side effects, especially joint pains and fatigue, get worse and worse and have come to the point to make me think if I should quit. Or, would there be any option of reducing dosage, like taking every other day?

If anyone has been through the same situation, I would appreciate any comment. Thank you!

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Posts 421 - 434 (434 total)

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Mar 26, 2021 03:07PM BCat40 wrote:

As an update, I made it about a month on the raloxifene with increasing aches and pains in my hands, feet and joints. The pain on the tops of my hands and feet got to the point that I made the decision to stop. Exercise did not help, in fact I had much worse muscle soreness on the drug than ever before. Spoke to MO today, he said some people just can’t tolerate hormonal therapy and to focus on exercise instead.

Dx at 40. Did not tolerate hormone deprivation treatment. Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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Apr 1, 2021 12:09AM Margun wrote:

anyone here had her vaccine? How it went?

There was the following questions in the form:do you have cancer? Do you take medication decreasing your immune system? The answer should be no for both questions? Given that hopefully the cancer is in the past and The letrozole doesn’t decrease the immune system ?Thanks

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Apr 1, 2021 11:43AM ThreeTree wrote:

I had my first vaccine and my understanding was that if you are just on an AI and done (for now at least) with other treatment, you are good to go.

I reacted to the first shot - got muscle and joint aches, chills, headache, relatively mild nausea, and was real, real tired; no fever. They say those side effects last 2 -3 days, but mine continued. The body aches and chills stopped after a couple of days, but the the headache, fatigue, and nausea continued to show up intermittently for a good 5-6 days. Initially, I thought that maybe the shot had aggravated my letrozole side effects, but then I realized it was side effects of the shot on top of letrozole side effects. Getting the second one tomorrow and hoping for the best, but planning for the worst, as they say the second one is worse.

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Apr 1, 2021 02:21PM edj3 wrote:

I've had both doses, I'm considered high risk for reasons outside cancer. I wasn't asked those questions.

I had a pretty bad bruise from the first dose; I felt like crap for two days after the second dose--mine was Moderna.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 1, 2021 04:30PM - edited Apr 1, 2021 09:17PM by LillyIsHere

I read that women have more severe side effects from the vaccine because the estrogen increases the immune that fights/reacts to the vaccine more than men. My question is for us who are taking AI (I'm taking letrozole) to remove the estrogen, does it mean we won't have SE from the vaccine? I am not in the age group to be scheduled for the covid-19 vaccine yet but I am curious what doctors have learned in the last 3 months when the first vaccines were rolled to general population.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole)
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Apr 1, 2021 05:10PM ThreeTree wrote:

I read the same thing about women doing worse due to hormone things, but then I don't understand why, when I'm on an AI and supposedly pretty estrogen depleted, I had the reaction I did to the first shot. The people I know who reacted to the second shot are postmenopausal women - not on AI's, but even with just menopause they're estrogen levels would be lower than those of younger women. I think there is still a lot that they don't know about this - especially when "mixed" with other drugs, etc. I know 3 sisters, all post-menopausal who all breezed through both shots, and they are wondering if it isn't just family genes. Genetics might have more to do with it than hormones. Who knows - we're all in uncharted territory here.

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Apr 1, 2021 09:47PM tobyholic wrote:

I have been taking the generic brand of Arimidex over 6 years. The doctor did reduce my dosage to a pill every other day because I was loosing the feeling in my hands and my feet were hurting. When I started on the pills, I had such terrible joint pains that I had to go up the steps on all fours. The hot flashes and night sweats were horrid. They have gotten a little better. What I am upset about more than anything is that I’ve gained 50 pounds since being on the pills. I lift weights and do a lot of walking but nothing is working. Does anyone know if this is because of the Arimidex pills???

Deb Dx 11/10/2013, 4cm, Stage II, Grade 2, 0/1 nodes, ER+/PR-, HER2+ Surgery 11/15/2013 Lumpectomy: Right Chemotherapy 1/3/2014 AC + T (Taxol) Radiation Therapy 7/24/2014 Breast, Lymph nodes Hormonal Therapy 9/29/2014 Arimidex (anastrozole) Targeted Therapy Herceptin (trastuzumab)
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Apr 3, 2021 05:56PM BlueGirlRedState wrote:

tobyholic - I did not experience weight gain when I was on Arimidex, but many women post about weight gain with Tamoxifen. I took Arimidex/Ibrance for 1+ year, then. taken off since there was progression. Now taking Exemestane/Afinitor.

Covid vaccine. Had slight bruising at site with first dose Pfeizer. Get 2nd dose next week, hopiing not to get fever/bruising that some report. None of the pharmacies were willing to administer in thigh

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Apr 4, 2021 08:15AM dtad wrote: sorry you are experiencing side effects from Arimidex. Sounds like you have been through a lot. To answer your question, yes, aromatase inhibitors cause weight gain. I have always found that contradictory since extra weight increases estrogen levels. They also make exercise difficult which lowers recurrence rates. Just doesn't make sense to me. Good luck and I hope you do better.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Apr 4, 2021 10:19PM - edited Apr 4, 2021 10:23PM by JRNJ

I had my first shot 3 weeks ago, no side effects except sore arm. I get my second on Tuesday. I answered yes to one of the questions the way it was worded, I think "are you on cancer medication", but they didn't ask me about it. I wrote in the blank aromatase inhibitors to make it clear it wasn't chemo. But my side effects from the letrozole are getting worse since starting almost 4 weeks ago. Pain in feet, legs, arms, hands, insomnia sometimes, but not every day. And going back to work last week made it a lot worse. If I don't get 9 hours sleep my pain intensifies and I get bad headaches and I'm sitting in a chair all day. (DIEP 1/29 so still healing, but I've always needed a lot of sleep). So far I don't think it is as bad as the Arimidex, but still pretty annoying. I've concluded I don't think it matters if I take it every day or every other day. Once the pain set in on the Arimidex it didn't make a difference, but I've been trying to take the letrozole every day, so I'll start skipping some to see if it helps. I wonder if the fluctuations in medication and hormones is actually worse for inflammation. The hot flashes have been worse on the letrozole. So far weight has not been an issue, because I gained 15 pounds on chemo, than lost a few on AIs because they made me so sick, but was trying to gain weight for DIEP. And now I just had DIEP and my belly fat is on my chest, lol.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/23/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/1/2019 CMF Radiation Therapy 3/29/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/3/2020 Aromasin (exemestane) Hormonal Therapy 8/5/2020 Arimidex (anastrozole) Surgery 8/24/2020 Prophylactic ovary removal Surgery 1/28/2021 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/9/2021 Femara (letrozole)
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Apr 5, 2021 04:15PM Elledwriter wrote:


I'm not on here often, but wanted to chime in on the subject of taking A-I, anti hormone. I was nervous to take it, imagining that I would feel terrible bone issues and my hair would thin after its now growing since my last chemo on Jan. 6, 2021. I started Letrozole (Femara) on March 15, and so far not one problem. I'm taking 1,000 mg calcium and also glucosamine Chondroitin with msm as well, just in case my bones are affected. I have spoken with several others locally who had breast cancer and taken an AI, and they tell me they are fine. I would say to try it and give it some time and see how ell you can tolerate it before worrying too much.

I wish you the best! You can do it!!


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Apr 8, 2021 01:33PM Impmuse wrote:

Hi 50artchic, I like your handle, by the way! Have you used flaxseed to help prevent the proliferation of cancer cells? Since you can't take tamoxifen, flaxseed blocks estrogen too. Just so you know my source, I'm posting this naturalpath Doctor's link. She did a lecture to her peers, so it's information dense!

Hope this helps!

DR Tina Kaczor. My link isn't allowed,

But you tube her.

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Apr 11, 2021 01:18PM Dmg77 wrote:

hi, I had my vaccine, Moderna , no side effects at all. I was on letrozole than Tamoxifen. Had SE with both and was taken off them. Started toremifene and hoping for the best. Did not find a lot of info from other women. Anyone can share experience

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Apr 11, 2021 03:49PM Beaverntx wrote:

Dmg77, you might contact Salamandra on here for information on toremifene as she has reported that she is taking it after not tolerating Tamoxifen. Hoping your experience is as positive as here has been.

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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