Any long-term success stories from those NOT taking hormone therapy?

@lj22 I am HER2 stage2, have had chemo, lumpectomy, radiation. I tried anastrazole, but oncologist switched me to letrozole. I am 7 months in and have pretty major side effects, but am afraid to stop. I may be switched again, but I wanted to tell you I am also being given Zometa every three months for two years. I am one year in and it is not causing me much grief. The only side effect is a slight fluey feeling the day after. I am afraid of osteoporosis so for me, it’s a good thing. Good luck!

@brightlight66 I was HERpositive , stage 2A, had a 2mm tumor removed , chemo and radiation. I had 3 lymph nodes removed. My menopause was so miserable with all the hormone fluctuations, I knew I couldn't handle no estrogen at all. I had arthritis in my lower back. I'm doing well. I find myself even striding if I am in a hurry. My cognition is fine for age 84.

I have osteoporosis and was improving with Vit D, weight bearing/walking. After 9 months on Anastrozole, there was a notable decline in my density. I then agreed to Fosamax. Now that I am on Tamoxifen, I no longer must take Fosamax. Trying to find the sweet spot. I recently fell missing a step and cracked a kneecap that I broke and had two surgeries on 20 years ago. I was not due to osteoporosis and most likely not due to the short use of Fosamax. Things happen.

I was diagnosed with a contralateral primary breast tumor 4 1/2 years after the first. Both were stage 1, N0, clean margins. I declined AI after the first. I am 79 and primary caregiver for my paraplegic husband and side effects could make this job even harder. He wasn’t yet paralyzed ( after an accident) when my first cancer was treated. I have mild arthritis and osteopenia. I had radiation after surgery both times. I am still debating taking the AI therapy this time. I had an oncotype dx test and it gave a recurrence score of 1 - as low as possible on the scale. I have seen a couple of oncologists. One prescribed letrozole and one suggested tamoxifen because it has fewer side effects. Having two tumors in less than five years pushes me to try the meds this time. The oncotype dx recurrence score makes me lean to again refusing all drugs, especially because of my caregiver responsibilities. .

Questions — For those who have tried these drugs, how quickly did the side effects show up after starting them? For those who took them and stopped, how quickly did the side effects disappear? Thank you.

I’ve had a double mastectomy and still was put on tamoxifen afterwards. I had several reactions that increased in severity until it was determined that I am allergic. After that I was put on toremifene and have been able to tolerate it well with some side effects (disrupted sleep, some dizziness, bone pain). I have since developed osteopenia but they aren’t sure if the drug has caused (or accelerated it) or if I would’ve gotten it anyway due to age. I’m 55.

@louisewalters
May I ask if you are given zometa because of osteoporosis or osteopenia? Do you have side effects from zometa? I’m on exemestane and have osteopenia (-1.7). I’m debating whether i should ask for zometa. Thank you.

I don’t have either, but due to Letrozole my oncologist said it would be a good idea as I am 67 and have to look after my bones. I get the infusion every three months for two years and haven’t had any side effects. You do have to let the dentist know. Good
Luck!!!

@annie64 yes 3months into it and now forever, better ways to treat search ask lots of questions until you get the answer that feels right for you, stay as positive and shy away from stressful environments.

@annie64 I’m now 74 (diagnosed at 70). Went through surgery, chemo (oncotype positive) and radiation and have now been on ai therapy for 2 1/2 years. Each one has different side effects. I’ve been on Anastrazole and exemestane, currently 6 weeks on letrazole. On Anastrazole, Went through a few mild things (nausea, dizziness) that would last about 2 weeks and disappear. The muscle and joint pain started at about 5 months and progressed. at 9 months, switched to exemestane. With it, weight gain started at 3 months, the unrelenting fatigue at 4 months and then insomnia - which of course didn’t help the fatigue. BUT no real pain (yeah, achy and stiff but meds? post chemo? age?). Stuck with it for 18 months but 2-3 hours of sleep caused other problems - increased heart rate and bp, weakness, loss of balance and worsened brain fog. After 6 week med vacation and almost everything back to”normal”, he finally took me off and now here we are. So don’t know if this will affect me because usually I have to be on for several months to see. He does admit some people can’t take any of the ai meds. My next step is Tamoxifen but I’ll definitely push for baby Tam if it goes there. My biggest concern is if any of this will be permanent after I’m off the meds. If it will all go away, then I can (hopefully) handle another 2+ years.

@louisewalters
Thank you for answering! I will need to talk to my onco about taking zometa. I had severe headaches from Letrozole and finger stiffness from anastrozole, but I’m ok with exemestane. It gives me mild petechiea but no other side effects. If you need to switch, try it. Thanks again.