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birdsndognow · July 2020

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

fatigue

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.

Jinx27 · July 2020

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

IBJUSTFINE67 · July 2020

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.

birdsndognow · August 2020

Hi there, Jinx!

Aww, well, then a biiig hug right back to you! 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.

Wanda

birdsndognow · August 2020

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!

Wanda

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