How Many are doing 10 years on Aromatase Inhibitors

[Deleted User]

After nine years on an AI, I attribute my good bone density to the weight bearing exercise I do five days a week at the gym.  My GYN told me that is better for bone density than any supplement that can be taken.  It keeps me going!

Kindergarten

Jillian, that is awesome that you hit the 10 year mark!!!

Nash54

Jillian777....good to hear you are doing well on your AI. I've just begun mine. Do you do machines or free weights? I'm a yoga gal with osteopenia and I know I need to start doing weight bearing exercise but I just feel lost with all those machines when I go to the gym. So I end up doing yoga or walking on the treadmill.

proudtospin

Nash, I sure get the idea of feeling lost at the gym, best idea is to find a trainer to ask advise of or pay for a few private sessions.  Much better than hurting yourself

pip57

Jillian....way to go. I am year 7 with little bone loss so I hope to continue on too.

Re exercise...I use Leslie Sansone's walking exercises. A good workout and many different programs to choose from. It doesn't stress your hips, knees, etc and all you need is a good pair of shoes.

[Deleted User]

Nash, I have pretty bad truncal LE on my right side chest wall so I am limited at what I can do at the gym.  What I have been doing now for years is a vigorous cardio setting on the treadmill.  I have slowly built up to a level five which consists of a 3.75 mile sprint with half of it being on a pretty steep incline.  This is considered weight bearing exercise since I am bearing my own weight. (according to my docs)  I do this five times a week.  I also do some light weight training for my legs, butt and tummy.  This keeps everything firm.  Also, be sure and do stretches before and after.  Like some of the others said, it might be a good idea to get a trainer for a session or two to learn what is best to meet your goals.  The treadmill is a great workout for not only bone health but also cardio, weight loss, decreasing circulating hormones and for me STRESS.

hopeful82014

Nash, walking of any sort (except in water) is weight bearing exercise. It's a good choice when you a) like walking and or b) don't know what else to do.

Nash54

Thanks Hopeful...A and B describe me. The only other exercise I do consistently is yoga.

grammakathy

Thank you for your comment Hopeful. Occasionally I feel like I should be doing more but walking is the only exercizeI enjoy. I suspect that if I push myself into a gym I'll end up stopping everything. My husband gave me a pedometer last Christmas and it has me pushing to reach my 7500 steps a day. I started out trying for 10,000 but it worked better to have a goal I could reach consistently- or at least most of the time!

ruthbru

If you want some exercise buddies, check out the Let's Post Our Daily Exercise thread on the fitness forum

aug242007

Just spoke to my onc and she is saying that a certain segment of the population with BC may stay on the AIs indefinitely and receive benefit.  Just no studies done. 

hrf

My onc has switched me to Tamoxifen after 5 years on A

aussieched

Hello hrf,

I was wondering the reason your Onc gave for changing you to tamoxifen at the 5 year mark. I have just finished 7 years of Femara and my bone loss is now getting pretty bad, and one onc has suggested that I will probably need to switch to tamoxifen. He wants me to see another medical onc early in 2015 to see if he agrees with that. I presume my bone loss has been worse then some, as I also had my ovaries out as I hadn't started menopause, so had a double whammy with the ovary ablation plus femara. Thanks

Aussieched

aug242007

After I get my BCI test, if the score is low, I may stop the Arimidex after 7 plus years.  Has anyone else had the BCI test?

hopeful82014

The BCI is relatively new - I'll be interested to hear how it works out for you.

Momine

Edited, because I found the test. As far as I can see, it is only for node-negative patients. Oh well!

hopeful82014

"As far as I can see, it is only for node-negative patients. Oh well!"

That was my thought, too, when I looked up the test. Still, some MOs will use some of these tools even w/node+ patients.

It's interesting, though, isn't it, that so much applies only to node- patients. Yes, they are the majority but there are an awful lot of us positives out there, too.

lago

Well I know I wasn't eligible for the oncotype test even though I was node negative. Since I was HER2+ with a large tumor I was getting chemo anyway.

proudtospin

I remember asking about oncotype testing, doc said since I was DCIS it would not apply as chemo was not part of the plan

grammakathy

My Onc switched me from Arimidex to Tamoxifen at my appointment yesterday to see if my SEs of sleeplessness, spine and hip aches, and vag. dryness can be eased up.  He said that it is better for my bones and I had a hysterectomy so complications there aren't an issue.  When I asked about the effectiveness comparison, he said that since I'm a stage 1c cancer patient, the risk of cancer return would increase from 2% to 4%, which is in his opinion, a small increase for quality of life.  What do you think? I appreciate hearing what others have been told and how it affected your decisions.

lago

grammakathy my risk staying on the AI in the first 10 years is 14%… and yours with the extra 2%-4% is still much lower than mine. So your odds seem still awesome to me.

grammakathy

Thanks lago. We try our hardest to do what we can to put the odds in our favor but still know it won't matter if we are even the one in a million. How long have you been on AI? I was on Arimidex for 7 months, off for 3 months and back on for 2. I stopped for the 3 months because of a rash caused by capillaritis to see if stopping Arimidex would help get rid of it (no change). I'm determined to stick with whatever is recommended for any advantage I can get. And for post menopausal women, it seems like there is an advantage to taking AI over Tamoxifen. I started Tamoxifen last night and slept a lot better so I'll see if that repeats tonight

lago

I was on Anastrozole (generic Arimidex) for 3 years. My back/neck/shoulder pain got to the point where standing straight was uncomfortable, sleep issues and the biggest issue was depression. Switched to Exemestane (generic Aromasin) in April. No more pain or sleep issues but I ended up with anxiety/depression from it. (only about 4% do). Just started to take a med to treat that 3 weeks ago. First time I've felt like me again in years.

hrf

My onc switched me from AI to Tamoxifen because she said that, at this time, the research has not yet proven that more than 5 years of AI will make a difference. But the research on Tamoxifen proves that 10 years is better than 5. That was the reason for the switch. My bone density didn't go down too badly but I had taken Zometa for the first 3 years. However, over the 5 years I have had a lot of joint degeneration I had to stop taking Wellbutrin because it doesn't react well with Tamoxifen (glad the pharmacist caught that). Too soon to say if sleep is better but mood seems better

marieann1020

Hi Lago, 

can you share what you are taking for anxiety & depression?

I have been on Aastrozole for 2 yrs , I have depression & anxiety

I was triple positive, diagnosed May 2012

thank you

Marieann

Chloesmom

Jumoing in Marieann. I've been taking anastrozole and generic lexapro with out any problems. Only on the AI a month but they don't seem to be negatively impacting each other

marieann1020

Thank you Chloesmom ,

I just started taken gen lexpro, my doctor just increased it to 20mg

I think its working,,,,not sure yet, I sitll have my bouts with wanting to cry:(

Maryann

Chloesmom

Hi MaryAnn. Was taking the gen lexapro before BC. It worked great for me Have to say taking it and then getting BC I didn't crash and burn with the news as I might have in the past. There have definitely been some weepy moments and fatigue like when depressed in the past. On the other hand if we didn't feel some of thei all things considered then I'd really worry! Good luck with this. All these meds can have side effects but this one was fine for me thankfully!

I have PTSD from being molested as a child so am a big advocate for protecting chikdren

new2bc

Hi everyone,

My oncologist wants me to switch to Arimidex after being on Tamoxifen for a year and half. My hormones are at the post menopausal level. I have osteopenia and was advised by my oncologist to take calcium 1200 mg and vitamin D. But my OB/GYN warned me that 1200 mg calcium can cause heart attacks and I should stay below 700 mg. What dose of calcium are you taking?    

lago

My MO had me on 1200 mg but then I saw a Ruematologist for my osteoperosis and she cut it to 600 and said I should get the rest from food like yogurt.