1. < Breast Cancer

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.

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junec | @junec | Jan 27, 2021

I've been on Letrozole for 2months, doctor told me it would cause stiffness and joint pain if I didn't stay active. Which turned out to be true once I started walking and stretching more the joint pain went away, I have no other problems from it I'm 68 so already have some fogginess.

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1 reply
jeannie53 | @jeannie53 | Jan 27, 2021
In reply to @wyngnit "How soon afte AI do symptoms appear? Anyone have info? I am at 2.5 months with..." + (show)
@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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@wyngnit My aches started about a month on Anastrozole. I stayed on it for six months I could barely walk some days. When I told my doctor how I felt she told me I should have never gone that long. Thought I was toughing it out apparently I was wrong. She switched me to Tamoxifen tried it didn't like that either and now I don't take anything. Not saying I've made the correct decision but quality of life is important to me.

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2 replies
jeaniebean | @jeaniebean | Jan 27, 2021

I am with you Jeanie 53! I just got my results and I am cancerfree today! Not going on them anymore.

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wyngnit | @wyngnit | Jan 27, 2021
In reply to @jeannie53 "@wyngnit My aches started about a month on Anastrozole. I stayed on it for six months..." + (show)
@jeannie53

@wyngnit My aches started about a month on Anastrozole. I stayed on it for six months I could barely walk some days. When I told my doctor how I felt she told me I should have never gone that long. Thought I was toughing it out apparently I was wrong. She switched me to Tamoxifen tried it didn't like that either and now I don't take anything. Not saying I've made the correct decision but quality of life is important to me.

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Thanks
I have tendon pain that goes away w movement almost at 3 months w AI
and having first post blood tests and visits after radiation.

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1 reply
wyngnit | @wyngnit | Jan 27, 2021
In reply to @junec "I've been on Letrozole for 2months, doctor told me it would cause stiffness and joint pain..." + (show)
@junec

I've been on Letrozole for 2months, doctor told me it would cause stiffness and joint pain if I didn't stay active. Which turned out to be true once I started walking and stretching more the joint pain went away, I have no other problems from it I'm 68 so already have some fogginess.

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I’m 69 fogginess is just part of trying to remember why I went to this room to get something! I am a retired speech pathologist and I can assure you that now and see the first to go in any memory loss

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elizm | @elizm | Jan 27, 2021
In reply to @jeannie53 "@wyngnit My aches started about a month on Anastrozole. I stayed on it for six months..." + (show)
@jeannie53

@wyngnit My aches started about a month on Anastrozole. I stayed on it for six months I could barely walk some days. When I told my doctor how I felt she told me I should have never gone that long. Thought I was toughing it out apparently I was wrong. She switched me to Tamoxifen tried it didn't like that either and now I don't take anything. Not saying I've made the correct decision but quality of life is important to me.

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@jeannie53
I would love to go off of them... really would as I've had so many troublesome side effects... but as you know, none of us are cancer-free (we're only in remission) and that's like a Sword of Damocles which always is hanging over my head.

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1 reply
jeaniebean | @jeaniebean | Jan 27, 2021

I am off of them. No longer running in fear.
I might get it back, but more importantly, I might not.

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jeannie53 | @jeannie53 | Jan 28, 2021
In reply to @elizm "@jeannie53 I would love to go off of them... really would as I've had so many..." + (show)
@elizm

@jeannie53
I would love to go off of them... really would as I've had so many troublesome side effects... but as you know, none of us are cancer-free (we're only in remission) and that's like a Sword of Damocles which always is hanging over my head.

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@elizm My oncotype score was low so I felt more at ease making my decision. Everyone has to weigh all their options and pray for the best.

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wyngnit | @wyngnit | Jan 28, 2021
In reply to @maryw28 "What time of day do you take your AI? I started seeing symptoms about 6 weeks..." + (show)
@maryw28

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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I take Ai at night. Leg knee tendon soreness
I try to stay active and eat plant based most days sleep is difficult unless I work out during day
I use KEY-E suppositories for vaginal dryness
Yes B12 vit d calcium important.
Great weight lose! That helps everything

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jeannie53 | @jeannie53 | Jan 28, 2021
In reply to @wyngnit "Thanks I have tendon pain that goes away w movement almost at 3 months w AI..." + (show)
@wyngnit

Thanks
I have tendon pain that goes away w movement almost at 3 months w AI
and having first post blood tests and visits after radiation.

Jump to this post

@wyngnit Severe calf pain and the bottom of my feet. The pain was so bad I would waddle when I walked. I don't know if it has anything to do with the meds making it worse but I generally have random aches and pains anyway. I wonder if there is a connection.

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