Aromatase Inhihibitors: 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.

And that is why I did not have a mastectomy – same risk of reoccurence.

Liked by kathyomaha55

REPLY
@kathyomaha55

Let me know what the doctor says. Keep in mind if it does come back – it will probably come back in the brain, bones, lung or as liver cancer, That's what I keep in mind.

On another note – I went to a cancer talk on 9/12. It was really interesting – they had a panel of 6 doctors, to talk about re-occurrence.

The most interesting fact was that even people with a bi-lateral mastectomy, have the same rate of re-occurrence, as those that had other treatments. Because some breast tissue is left behind even < 2%, so this does not change the re-occurrence factor. They said they are trying to talk most women out of this for that reason. I learned a lot of stuff there.

Jump to this post

@kathyomaha55 I was ready to have bilateral mastectomies, but the surgeon said NO and that is for precisely the reason you stated. They did partial mastectomy instead. She advised me that with full mastectomies, they cannot remove all tissue and there is so much damage to nerves with patients having nerve pain following. I am happy she went this route. I went from quite large, pendulous breasts to smaller (A to B sized) and don't have the pain anymore. The scars are really not that bad actually. The radiation on the affected side tanned that area and hid the scar and then this summer I went topless in my backyard pool and tanned the other side!!! I do have to wear a compression bra now with a Joviak serratus swell spot that should help with the hard areas resulting from prior hematomas and radiation side effects.

Liked by kathyomaha55

REPLY
@francine6829

Quality of life is a piece of cake with Tomoxifen . Some oncologists are in the dark ages and will not prescribe Tomoxifen for post menopausal women. They are dumb

Jump to this post

Oh my Francine6829, I very glad you have had such luck with Tomoxifin!! It gave me brain fog and memory loss so bad I couldn’t think straight. I also have been on Anastrozole, that gave me even worse cognitive issues, brain fog; and it seems I had an allergic reaction to Anastrozole as I broke out in hives that Itched so bad I thought I’d go crazy! I started Exemestane last week and so far, so good… Hoping I’ve found the right drug for me, but it’s really expensive, my insurance won’t pay much on the Exemestane. A 3 month prescription of It cost me over $500. If it’s the right drug for me, guess I’ll need to change my insurance to one that does cover it better.

Liked by cancersucks

REPLY
@addieg

lindalm–I am curious if there was a reason you were either not prescribed tamoxifen or did you choose not to take it? I was diagnosed with stage/grade 1 invasive ductal carcinoma and have had surgery and radiation and have now been recommended to start tamoxifen but I am very concerned with the potential side effects. My recurrence rate is around 10% without tamoxifen and 5% with it. My concern is whether or not my quality of life outweighs the potential for recurrence. Thoughts?

Jump to this post

Mine recurrence rate was 12 , I was put on anastrozole which I took for 3 months . It destroyed my bones , joints and much more . Finally I was not able to lift my arms enough to dress or feed myself . I decided there was no quality to my life once I started on the meds . Tamoxifen is mild compared to anastrozole . They wanted me to switch I fired my oncologist instead . I am much better now 10 months off it but still having problems . Exercise helps so I chose yoga

Liked by kathyomaha55

REPLY
@cancersucks

It is a known side effect

Jump to this post

Both radiation and anastrozole cause heart problems . My dr never told me that but my cardiologist did

REPLY
@francine6829

With milk or meat, etc, can you provide a typical’s days Meals? What supplements do you take?

Jump to this post

Make sure if you use dairy or meat you get hormone free / organic grass fed . Up the Whole Foods fruit , veggies , nuts ect

REPLY
@sparklegram

I'll be interested to know the responses to this post.

Jump to this post

It is chemo and chemo kills the immune system

REPLY
@cancersucks

Both radiation and anastrozole cause heart problems . My dr never told me that but my cardiologist did

Jump to this post

Recent studies show a 0 percent risk for your heart with radiation. They have new methods

REPLY
@francine6829

Quality of life is a piece of cake with Tomoxifen . Some oncologists are in the dark ages and will not prescribe Tomoxifen for post menopausal women. They are dumb

Jump to this post

Any tips for time of day to take tamoxifen? Morning or night? With or without food? My goal is to mitigate potential side effects as much as possible without resorting to other medications.

REPLY
@addieg

Any tips for time of day to take tamoxifen? Morning or night? With or without food? My goal is to mitigate potential side effects as much as possible without resorting to other medications.

Jump to this post

Take in morning. There are possible blot clot risks so you don’t want to take it and then not move around. I always take my pills with food

>

REPLY

Nanato6~
I was just wondering what your final decision was with the advise of your oncologist on taking an aromatase inhibitor. I am close to 72 and I have been on Letrozole for 2 years. My Oncologist just took me off of it for 30 days to give me a “break”. My joint pain has increased steadily the past 8 months. I had arthritis when I was diagnosed and I have read that A I side effects are worse when you already suffer. Tylenol & Aleve really do not cut the pain. I used to work out 3-6 days a week, walk daily, & bike. Now I read, do art and try not to move…..ahhhh! My Oncologist suggested I start on Tamoxifen to replace the Letrozole. It has it’s own set of bone pain issues.
Thank you for sharing what your final decision.

Liked by sparklegram

REPLY
@roewes07

Nanato6~
I was just wondering what your final decision was with the advise of your oncologist on taking an aromatase inhibitor. I am close to 72 and I have been on Letrozole for 2 years. My Oncologist just took me off of it for 30 days to give me a “break”. My joint pain has increased steadily the past 8 months. I had arthritis when I was diagnosed and I have read that A I side effects are worse when you already suffer. Tylenol & Aleve really do not cut the pain. I used to work out 3-6 days a week, walk daily, & bike. Now I read, do art and try not to move…..ahhhh! My Oncologist suggested I start on Tamoxifen to replace the Letrozole. It has it’s own set of bone pain issues.
Thank you for sharing what your final decision.

Jump to this post

I'm following this thread. I took Arimidex for a year and a half and had sever side effects I switched to Exemestane and also had side effects. I'm now taking Tamoxifen and these have their own set! I'm seriously thinking of going back to Exemestane. Not sure yet. I'm waiting for some lab test results.

REPLY
@goldieshostak

I was diagnosed with DCIS, stage 1. I had a lumpectomy in August of 2017 plus radiation and have been on Arimidex ever since ( a year and a half now.) There was no cancer in the lobe and my surgeon said I had the smallest cancer she had ever seen. My question is Do I really need to take the Arimidex since my hair is falling out? I am afraid I will have to wear a wig if I take it for the recommended five years.

Jump to this post

I have read that dcis is not yet cancer, but pre-cancer..so why take the drug???!!! Check books by Susazze Somers on her interviews with prominent MD's….it is all about hormone imbalance…I take beta glucan and Wii be three years cancer free…my cancer antigen test is 5, and anything under 38 is normal says my onc. I had stage 2 because I let lump go for three years before mammogram and disgnosis. I am 83…took no Als..and no radiation and my oncologist says she doesn't know what to make of it!!! She is astounded….there were serious reason I did nothing but lumpectomy…….going to dentist is worse for me!!!! Than lumpectomy.

Liked by kathyomaha55

REPLY

I wouldn’t think it worth it , how well do you think you will do with out estrogen? I was on it 3 almost 4 months and I suffered severe joint bone problem with extreme muscle loss among other side effects . In the end they claimed 13 percent chance of it coming back not using it 6 percent if I used it . I am 65 and decided not worth it

Liked by tallyteresa

REPLY
@cindylb

Glad you caught the cancer early. I had a stage 0 LCIS which 2 years later became a Stage One. Because the Lobular is trickier, I opted to have a bi lateral mastectomy so I wouldn't have to go through all the constant testing and worry. All that said……I tried the aromatase drugs (Letrozole and Arimidex) and had ALL the side effects (just lucky I guess) and opted not to use them……at Stage 0 and again at Stage 1. BUT, I think I am the exception. I can't tolerate most drugs. There are lots of people who do tolerate them pretty well. I was 56 when I was first diagnosed and am 61 now. I opted for feeling better most of the time vs. the drugs, but why not try them, see how you feel on them and take it from there. I tried 2 different ones and the Letrozole was better than the Arimidex for me. Everyone is different. I wish I could have tolerated them because perhaps it would have stopped my cancer from advancing to a Stage 1 ultimately. If they make you feel bad you can always quit them. If they are tolerable….perhaps you won't have the cancer again???? There are so many tough decisions to make at a time when you are least emotionally able to make them, so hugs to you.

Jump to this post

You are not the exception 25 to 35 percent of woman have serious enough problems they stop the medication .

REPLY
Please login or register to post a reply.