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Topic: off one, onto another

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 9, 2020 03:59PM

birdsndognow wrote:

Hi to all.

Today I was taken off of letrozole. In one month I'll start its cousin drug exemestane.

Listed here is what is happening to me. --------------

vertigo for months -- have fallen twice from it, and stumbled numerous times

severe tinnitus


shoulder, elbow, knee aches

carpal tunnel-like pain in both wrists

cotton mouthed

dry, itchy eyes

chest tightness and breathlessness on paced dog walking, or when carrying and walking with heavy objects

jitters, nervousness

some emotional outbursts

small red dots starting appearance under the skin, scattered on arms and legs

excessive hair loss ----------------

I started taking it in February. Took myself off in May until I could see my oncologist when COVID interference let up some in June.

She put me back on it, but unfortunately all problems came back along with added new ones.

Don't go by me, however, I'm sensitive to alot of different things, so I'm not surprised it started so soon. My old nextdoor neighbor took letrozole for 5 years and didn't have one side effect from it, according to her.

And an old coworker took tamoxifen for 5 yrs or more without side effects as I remember.

Logically, but without too much science background, I'm trying to understand why I need hormone-stripping drugs when I'm 67 years old. The dx, surgery, radiation, "dust has settled". I'm not having chemo. If the next drug does the same to me, I guess I'll need to make hard decisions, because I can't see myself going through one side effect after another for the next 5 years or more. QOL, you know?

Take good care everyone.

Dx DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 2/2 nodes, ER+/PR+, HER2- (IHC)
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Jul 13, 2020 05:49PM Jinx27 wrote:

I just came in here to give you a hug, Hug Im going through this too but with another AI.

Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 1/1/2016 AC + T (Taxol) Hormonal Therapy 8/29/2016 Arimidex (anastrozole)
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Jul 14, 2020 08:11PM - edited Jul 14, 2020 08:13PM by IBJUSTFINE67

So glad to see this thread. You are not alone. I was fine on Tamoxifen for a year, fine with all my surgeries....then 9 weeks ago was put on Letrozole. I was only severely depressed once in my life, it was severe postpartum depression. After 6 weeks on Letrozole, I was so weak, fatigued, flu-like feeling and PARANOID, that I was approaching the same kind of depression. There are others out there like us too. On other sites. I just finished my 2 week break and started Exemestane today!! Let's keep in touch. I too was considering just getting off of everything and I have been through so much worse, I thought, in my life. I have heard from others like us that the switch specifically to this one was all they needed. I am laughing because I am pretty sensitive to meds but, I used to be a drug rep and know that we always have options and everybody experiences drugs differently.

Colleen Shaw Dx 7/9/2019, IDC, Right, Stage IB, Grade 1, 0/2 nodes, ER+/PR+, HER2- (IHC) Dx 7/19/2019, IDC, Left, <1cm, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/12/2019 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 6, 2020 11:36AM birdsndognow wrote:

Hi there, Jinx!

Aww, well, then a biiig hug right back to you! Hug Thanks so much! How are you doing? What do you do to combat the medication side effects?

Hope you are doing ok, and would love to hear from you again! I wasn't ignoring your post, just wasn't on the group for a few weeks, didn't know until last night that it was here, so please forgive me.


Dx DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 2/2 nodes, ER+/PR+, HER2- (IHC)
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Aug 6, 2020 11:38AM birdsndognow wrote:

Hello Colleen!

Just last night I saw Jinx's and your post to me about the hormone medication. So sorry to reply almost a month later! I wasn't on here at all over the past few weeks, so please forgive me.

Wow, you really went through it too with letrozole! How are you doing on the exemestane?!

The PA I spoke with on 7/9/2020 said to wait one month, so it's almost that time. Maybe it'll be ok,

as you said. Can you name those other sites you mentioned? I've seen YTs where docs put

an argument against hormones, even chemo, now.

Yes, please, let's stay in touch!


Dx DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 2/2 nodes, ER+/PR+, HER2- (IHC)

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