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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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Feb 21, 2021 11:28PM LillyIsHere wrote:

BCat40, I am sorry but I am not familiar with this medication. Can't you take tamoxifen? You will find many women in tamoxifen who can give you tips and probably you won't have these harsh side effects.

You reminded me when I started letrozole+lupron shots, I felt like I had explosive fireworks inside my body, I also remember the roots of my teeth were hurting, strange sensations. Like living in Matrix but after a month or so I had 2 other surgeries and once all was settled down, I start feeling the "usual" letrozole SE.

I can see you had a small tumor. What is the recurrence risk if you don't take this medication? Can you ask your MO?

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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Feb 21, 2021 11:56PM - edited Feb 22, 2021 12:05AM by BCat40

Lily/whatjusthappened--toremifene is a sister drug to tamoxifen. I can't take tamoxifen because wellbutrin inhibits the metabolism of tamoxifen and i am not going off wellbutrin. I have been on it 20 years after trying many other antidepressants. The drugs also work the same way (i.e. blocking estrogen receptors) and have the same SE profiles.

Thanks for the sympathy. Lily--mad respect for pushing through those SEs.

My recurrence risk with no hormonal blocking/deprivation is 10-12% depending on whether you go by my oncotype or mammaprint results.

I am not sure how many days I could tolerate the med to try to get to some point where I would get used to it, if that even happens.

Dx at 40 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 6/2/2020 Whole-breast: Breast
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Feb 22, 2021 12:08AM LillyIsHere wrote:

Did you get oncotype and mammaprint results? In my case, it wasn't enough material to test for oncotype.

Maybe someone else who is familiar with this medication to respond. Cancer meds are harsh meds. I would ask MO, I'm sure you are not the only one with these SE. I'm sending you gentile hugs.

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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Feb 22, 2021 12:21PM - edited Feb 22, 2021 12:22PM by BCat40

lily, there is another active user in these forums who started out with tamoxifen and had a really hard time and switched to toremifene and for her it has been working out great with few ill effects.

Yes my oncotype result was 20 and my mammaprint was low risk-luminal A. It translates that the reduction in metastatic risk from hormone blocking/deprivation is approx 3-4%. A bit higher of a benefit if you also include reducing local recurrence

I emailed my doctor through the portal and the nurse wrote back and suggested I drink tonic water and restart the medication. Useless. Even if I got the cramps under control how many weeks or months do I need to stumble through my life feeling nauseated with head and dental pain?

My other options are raloxifene, which current MO will not prescribe because it's not approved if you've already had invasive cancer, but my second opinion MO said he would give me if I wanted it, or OS + AI. But at the top of the list of side effects for raloxifene is muscle cramps and spasms, so I'm not sure I want it. I don't think I am willing to sign up for OS for. 3-4% risk reduction. Once they put the lupron in you're stuck with the SEs for a full month right?

I never did well with hormonal birth control either and I think my body just doesn't tolerate having its hormones effed with.

Dx at 40 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 6/2/2020 Whole-breast: Breast
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Feb 22, 2021 12:52PM edj3 wrote:

BCat40, I didn't tolerate tamoxifen well at all and stopped after three weeks. I can't take AIs which are what would normally be prescribed because it turns out my bones are shit.

But you said something interesting and I do wonder now if there's any correlation. You said you weren't able to take hormonal birth control, and neither was I. Talk about turning into a fat 90 y/o lady while being only 18!

Makes me wonder if there's any correlation or if that's coincidental. Regardless, I tried tamoxifen and no thanks. My MO hasn't fired me as a patient so there's that.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 22, 2021 01:53PM LillyIsHere wrote:

I never took birth control pills and the only time I'm playing with my hormones is for cancer treatments, 15 months of AI now. In my case, I really felt the impact of lupron and then lupron+AI, it was brutal! Also, it got worst before getting better, and took 6-7 months for my body to start adjusting to the treatment. Then inch by inch started getting better but I can't imagine I will ever feel the same as BC ( before cancer or historically BC :)).

I also asked the MO why should I take medications after BMX with clear margins? She said because ILC was found in my nodes, otherwise, if my nodes were clear, I could have passed for no AI. What makes me upset is that doctors don't even know if AI works or not. It is wait and see game, it may work if I am in the lucky 40% group.

I had a very bad experience with Lupron but I know others who had no problem at all. BCat40, maybe you can take a break and give it a try.

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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Feb 22, 2021 02:48PM - edited Feb 22, 2021 02:48PM by BCat40

edj I think there is probably a strong correlation with not being able to tolerate hormonal bc. Either our bodies are willing to allow their hormones to be played with or they are not.

Thanks lily, I will think about it but not sure I have the same courage as you to put myself through 6-7 months of feeling horrible and still continue. I was nodenegative but I am still supposed to take something in case any cancer cells passed through undetected. Yes the meds don't promise anything either; 30-40% chance they help.

I looked up quinine (in tonic water) for leg cramps. Apparently the therapeutic dose for cramps is 200-300mg. There are 30 mg of quinine in a 12 oz soda can of tonic water so I would need to drink 7-10 soda cans of tonic water per day to get that dose. Oh yeah, and the FDA ordered quinine supplements for cramps off the market in 2006 because it was considered too dangerous to take without medical supervision.

Dx at 40 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 6/2/2020 Whole-breast: Breast
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Feb 22, 2021 03:00PM marie914 wrote:

Bcat4 - I am considering not taking Femara (Letrozole).

I am just feeling more myself after chemo and surgery (2nd phase of reconstruction) and trying to get in shape and having my hair grow back. My hot flashes are crazy now. I used to be able to manage but I wake up during the night often and I get them during the day for unknown reasons. I don't want to think of my joints hurting more and gaining weight and thinning hair and more hot flashes . I don't think I want to live like that. I did chemo "just to be safe" because they thought some cancer cells might have passed through undetected. I have no lymph node involvement and my PET scan was negative; they got great margins on my left mastectomy.

I heard losing weight and exercise helps a lot and I am overweight. So I think I would rather work on weight and exercise before I start taking some AI. I'm 60 and post menopausal when I was diagnosed. I was on hormones for my hot flashes so I am doing good giving up hormones.

I try to tell myself to at least try the letrozole that maybe I won't be affected that much. To give it a chance. My surgery was February 1 and they said I could start taking it anytime after surgery but I haven't started yet. I know in July she will be not happy if I am not taking it.

Dx 7/31/2020, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- (FISH) Surgery 9/14/2020 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 11/6/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/1/2021 Reconstruction (left): Silicone implant Hormonal Therapy 2/8/2021 Femara (letrozole)
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Feb 22, 2021 08:08PM BCat40 wrote:

Marie, it's certainly understandable that you want to have some time to feel "normal" again after all your body has been through. You should take the time you need. You can start the med like I did just to try it when you're ready. If it makes you feel like crap there's no one there to force you to take the pill. I just threw up my hands after 4 pills.

Dx at 40 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 6/2/2020 Whole-breast: Breast
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Feb 22, 2021 08:17PM JRNJ wrote:

Whatjusthappened, I have never heard that radiation targets rapidly growing cells like chemo. My impression is that it is totally different than chemo in that it kills what it is aimed at. Where did you hear this? Do you have any documentation on this? I think I had/have lymphedema in my arms. I don't feel the radiation caused the problems with my arms, because the swelling and pain started right after chemo and before radiation and was in both arms. Feels better now after DIEP, so I'm hoping it lasts after I restart AIs. But don't want to get my hopes up and get disappointed again.

Lily, I would have been more concerned if it was on my left side too, "luckily" it was on my right. I'm feeling better, sore and extra tired, but getting some things done around the house. I don't feel ready to start AI yet. I need to feel much better before I introduce that kind of pain again. I'll probably try the letrozole. I have osteopenia and my MO has not said a word about taking anything yet except calcium. I guess we'll wait and see if it gets worse.

BCat40 and others, I also have never been on birth control. Stupid me thought it might cause cancer. I also have a hard time with meds. Tried several SSRIs and after one pill said no way. So I totally understand how you feel. But due to the importance of these meds, I think you should give it more of a shot. Some side effects will most likely go away, such as nausea, dizziness, fatigue. Others may get worse, such as joint and muscle pain. I've been suffering horribly since June, because I wanted to give it a fair shot. I'm on my 4th AI. I've heard Tamoxifen, and the drug you are taking are more easily tolerated than AIs. So I'd give it more time because ovarian suppression and AIs are worse.

Marie914, There is no harm in trying, you can always stop and some people are fine.



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
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Feb 22, 2021 11:24PM BCat40 wrote:

JRNJ, while I admire your perseverance, we all have our own tolerances. I decided to try the meds because I "could be one of the ones who has no/minimal SEs." That did not turn out to the case.

Tonight was the first night since discontinuing the pills that I felt well enough to even do 20 min of yoga. I am going to try to be active. It doesn't seem healthy to me to sit like a lump on the couch every day because I feel terrible from meds I am supposed to take.

Dx at 40 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 6/2/2020 Whole-breast: Breast
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Feb 23, 2021 12:02AM Whatjusthappened wrote:

JRNJ, radiation certainly does effect the entire area it is aimed at, as evidenced by the damage it can do to surrounding tissue and skin. However, I have to wonder if very slow and sneaky ILC cells benefit the same as a more aggressive cancer would. This is from the Mayo Clinic website:

"Radiation therapy for breast cancer uses high-energy X-rays, protons or other particles to kill cancer cells. Rapidly growing cells, such as cancer cells, are more susceptible to the effects of radiation therapy than are normal cells."

https://www.mayoclinic.org/tests-procedures/radiat...

My LE presented itself after my radiation treatments with significant cording and fibrosis in my arm. I spent a few months in PT getting all that broken up, which helped quite a bit, but I'm afraid that shoulder will always be stiff (I envision my muscles looking like beef jerky). My arm only swells now if I forget to wear my sleeve and do a lot of heavy lifting or repetitive motions. I hope the improvement you experienced after surgery will last for you as you start the AI's. For me, going from flat and adding in that extra skin did help with the range of motion and comfort level at least.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Feb 23, 2021 12:47AM - edited Feb 23, 2021 12:48AM by JRNJ

bcat40 I hear ya. Just trying to help. Follow your gut. I've been off for over a month. I was in so much pain every day I told myself I can't live like this. It so unfair we have to even make these choices.

Whatjusthappened thanks for giving me more to stress about lol just kidding. I wanted an alnd and my bs refused. Ro convinced me radiation would take care of it and I didn't want to delay other treatments looking for a new surgeon that would do it. I was paralyzed with fear over the node involvement. I had chemo even though some said no for ilc. Msk said yes it does work for ilc and recommended it.

When they say no chemo they assume we will be on hormone therapy. I think they have to stop making earlier decisions based on this assumption and take pill intolerance more seriously.

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
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Feb 23, 2021 10:49AM Whatjusthappened wrote:

JRNJ, your grade 3 cancer would qualify as aggressive, so it's great you threw everything at it! So no worries, at least you'll not have regrets that you didn't do a potentially life-saving treatment. I was curious about the pleomorphic ILC, so I was reading a little about it. It seems it's even less understood than typical ILC. One article said that the majority of pleomorphic cancers are estrogen-receptor negative. Do you know what percent you were?

That's interesting about the alnd. My RO said if I had done an alnd, I would not have needed radiation. I never really had any kind of discussion about it with my BS.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Feb 23, 2021 08:31PM PrincessButtercup wrote:

BCat40: "It doesn't seem healthy to me to sit like a lump on the couch every day because I feel terrible from meds I am supposed to take."

Exactly! I couldn't tolerate tamoxifen, and felt that the drug was preventing me from taking care of myself. I was literally on the couch all day, too. Different situation from yours, but that was exactly how I felt.


Dx 11/15/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 12/4/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/20/2018 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/30/2018 Whole-breast: Breast Hormonal Therapy 6/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Femara (letrozole)

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