Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@mjay

Thanks for your reply. I can so relate. I'm 64 now. Husband is ok but sometimes loses patience...."Oh, go back. I forgot my list"! I will see how it goes as I don't know how much of my depression/brain fog is cancer fear and/or Covid fear! Life did hand us a curveball this past year! I'm due for the Covid vaccine soon so hopefully that will give me a little mental break. Other than the brain fog, worse at some times than others, and tight finger joints upon waking, I don't have many other side effects, at least not that I know of now, thank God. I'm just worried since I have some genetic links to dementia that AI's may exacerbate it and memory won't come back fully after discontinuing. It would be interesting to know if anyone did the 5-year course of AI with brain fog/memory issues and how they fared after discontinuing, i.e., did the brain fog lift or were they permanently impaired. Thank you all for sharing your insight and experience.

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@mjay
You raise some interesting questions which I don't believe have been addressed in this forum to my knowledge. For those who completed 5-10 years of an AI, did they experience withdrawal symptoms? If so, what were they and for how long? And, did the symptoms of arthralgia experienced while on an AI go away following withdrawal after 5-10 years?

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@elizm

@jeaniebean Pharmaceuticals are tricky. Since going on an AI in January 2018, I lost about 25 lbs. in two years without dieting or increasing exercise... then my weight leveled off during the pandemic SIP business when exercise time plummeted with the close of my gym. I was not unhappy with the weight loss, but it alarmed my oncologist at first. At my age, it likely has more to do with loss of muscle mass than fat loss... but nonetheless, you never know how your body will react to an AI until you go on one.

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How soon afte AI do symptoms appear? Anyone have info? I am at 2.5 months with so muscle aches especially at night

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@cctoo

Saucy, you can take Evista....prevents breast cancer and straightens bones....no side effects at all!!! Dr. can prescribe it. Tamoxifen is generic name...ask oncologist. I had cancer and take it.

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Thanks for clarifying tamoxifen is usually not recommended for post menopause. It has a different used by the body

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@wyngnit

Thanks for clarifying tamoxifen is usually not recommended for post menopause. It has a different used by the body

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Not true. My sister is 71 and has rheumatoid arthritis and has to take tamoxifen. When I had tried all 3 aromatase inhibitors, I was asked to try tamoxifen. My oncologist says it isnt as strong but will work the same. At one time, everyone took it.

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@wyngnit

How soon afte AI do symptoms appear? Anyone have info? I am at 2.5 months with so muscle aches especially at night

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Mine was in the first couple of weeks. For some it starts to subside by the second month. Mine didnt, but many have hardly any after a while.

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@jeaniebean

Not true. My sister is 71 and has rheumatoid arthritis and has to take tamoxifen. When I had tried all 3 aromatase inhibitors, I was asked to try tamoxifen. My oncologist says it isnt as strong but will work the same. At one time, everyone took it.

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@jeaniebean Thank you for posting this response. My experience is similar to yours. Having tried 3 of the other AI's, I was finally given Tamoxifen.

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@elizm

@mjay
You raise some interesting questions which I don't believe have been addressed in this forum to my knowledge. For those who completed 5-10 years of an AI, did they experience withdrawal symptoms? If so, what were they and for how long? And, did the symptoms of arthralgia experienced while on an AI go away following withdrawal after 5-10 years?

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@mjay @elizm, you may be interested in this discussion:
- Completed 5 years of anastrozole. Withdrawal symptoms? Side effects? https://connect.mayoclinic.org/discussion/stopping-anastrozole-after-5-years-withdrawal-symptoms/

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@jeaniebean

Mine was in the first couple of weeks. For some it starts to subside by the second month. Mine didnt, but many have hardly any after a while.

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Thanks gives hope

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@wyngnit

How soon afte AI do symptoms appear? Anyone have info? I am at 2.5 months with so muscle aches especially at night

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I’ve had many MANY different symptoms. A few started right away. Some have subsided enough to deal with but others continue and are getting worse. I have taken each symptom as it has come and tried to take measures to get relief from each. Have you tried epsom salt baths. Try a long soak about an hour or so before bedtime. Make it relaxing and comfortable, soothing music, a towel behind your head, whatever works for you. Maybe some slow deep stretches of the muscles that bother you the most. Best of luck to you! We all have a hard road to travel so take care of yourself. We are here to vent and support one another.

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@wyngnit

How soon afte AI do symptoms appear? Anyone have info? I am at 2.5 months with so muscle aches especially at night

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What time of day do you take your AI? I started seeing symptoms about 6 weeks after taking Letrozole. Muscle aches in my arms and joint pain in my hands and lower back. I first tried taking it at night, but have switched to the AM and the night pains are much better. My worst side effect is the uro-gyno atrophy (drying and thinning of vaginal and urinary tract tissue). I had 3 major urinary tract infections in four months and very painful intercourse. Have tried the Bonafide vaginal inserts, but not very helpful. I have found that staying active (walking 2-3 miles in the neighborhood 3-4 times per week), stretching and yoga, and staying hydrated have helped tremendously with the stiffness and back pain. Still have some mild hot flashes, but not as bad as menopause (I'm 64 now). I have been on letrozole about 15 months and plan to continue if the side effects stay status quo.
Also for those with brain fog, have you had your thyroid, D3, and/or B12 levels checked? A year before my BC diagnosis, I was having terrible brain fog, digestion issues, and neuropathy in my right leg. Finally went to the doctor and found I was very low on both vitamin levels and was hypothyroid. Once I started taking D3 and B12, my brain fog lifted and I was back to my old self. I started on probiotics and changed my diet to gluten-free, dairy-free, and soy-free and my digestion issues and thyroid levels are better, plus I lost 45 lbs! Definitely worth checking into!

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