Doing Well on Aromatase Inhibitors (AIs)
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Annie - congratualtions. You've reached another milestone in your recovery. I certainly won't tell you that AI's are a walk in the park but work with your MO to find the one which gives you the fewest SE's. Or the ones that bother you the least. I hate my thinning hair but my attitude/mental health has certainly improved by switching at about 6 months. Stay hydrated and try to exercise. Both help the joints and make you feel you have a little more control over your weight. I take my letrozole first thing in the morning and have had no nausea. Sleep pattern has been a little irregular for years but I'm retired so certainly manageable.
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Just when I thought I had my recurrence with cancer all figured out, I found I didn't!
I had, after weeks of research and a great deal of anguish, decided not to take the Letrozole my MO recommended for me. She had reached out to me, I called her back and left a message with the receptionist, and never heard from her. I didn't think I ever would.
Yesterday, after many weeks, she called again, “just to talk." She persuaded me to at least give it a try. I posted this in another thread and was comforted to hear some have taken it for years with no bad results! Only time will tell for me.
Ironically later in the day, my oldest remaining sisters called to tell me her biopsy came back positive for IDC. Our older sister passed away after years of battling both breast cancer and lymphoma at the same time!
We can only move forward. My biggest concern is how to get enough exercise. I've been walking a half hour, but my MO said I need at least an hour of walking. I had DIEP reconstruction and still having issues so I don't know what else I can do now.
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Mavericksmom, I understand your concern as I had my UMX in January after chemo. Before chemo, August, I had been walking 80 minutes for 5 days a week and 20 minutes the other 2 days primarily to help my arthritis. It took me a long time to get to that level.
That all stopped during chemo as I just didn't have any strength. When I finished in December I started back slowly, 15 min, then added time slowly. Then came the surgery and I was down again for several weeks but restarted again and have continually built up my time. I'm now walk 5 miles 5 days a week, about 1.5 hrs, and 2 miles for the other 2 days a week, 40 minutes. I have recently added some strength and stretching into my routine. It's a lot of time, thank goodness I'm retired, but i truly believe it helps. I have my implant surgery and a lift and reduction on my remaining breast tomorrow and will be down again for a period of time but I feel confident I can just rebuild back up.
The exercise is daunting, but I feel so much better when I do it. There are days it is hard, but I just keep reminding myself i have to take the AI to reduce my risks of getting BC again and it is helping with my osteoporosis. I'm doing this for me.
I wish you the best, I believe your surgery has a longer recovery time so just do what you can and try to increase slowly. Also sorry to hear that your sister has also been diagnosed. Take care.
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If you want some exercise buddies, come over to the Lets Post Our Daily Exercise Thread on the Fitness Forum. A great group of ladies; all stages, ages, having done just about every kind of treatments, surgeries etc. (you name it, someone has dealt with it), some still in treatment & some many years out, all fitness levels too. A good resource for information, guidance, support, and fun too (which you don't get to say about many threads outside of the Fun & Games ones!).
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Mavericksmom, if you can't do an hour of walking, maybe you can do your half-hour and add something else that you enjoy. I do walking and very occasional cycling too (not much lately), but really fell in love with yoga, which I started at the hospital where I had my treatment. I'm now going to classes most days of the week. It doesn't seem like it would be great exercise, but it is --- weight-bearing, and really changed my body composition, flexibility, peace of mind. There are some great DVDs and online videos at all levels. So good for those joints, too.
I've been doing OK on letrozole -- some hives recently and occasional mild insomnia, but nothing severe.
I lost one of my sisters to BC too, and am sorry for all you've been through.
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Happy Friday all, I had my 6th month appt. with my BS, MO, and PS a week ago. I also squeezed in a dental check up on the same day as I was experiencing dry mouth which I've never had. My dentist said the bone structure of the mouth can be affected by anastrozole/osteoporosis as all bones are (so maybe rwns and worry the pooh there is something to you discomfort). Tooth decay can be caused by dry mouth which is a side effect of the anastrozole as she noted, she was well adverse about AIs. Not sure how many are experiencing dry mouth, but she gave me samples of biotene gel, XyliMelts tablets, and PreviDent toothpaste all have definitely helped, of course she also reminded me to stay hydrated (I get my 64 oz. of water daily). All products are OTC.
I have also been reading about the adrenal glands as they also produce a variety of hormones and even after menopause they still produce androstenedione, which is converted peripherally into estrone by the aromatase enzyme found mainly in adipose tissue. Estrone is then converted into estradiol, the most potent estrogen. So the AIs are forcing our bodies to reduce/eliminate the estrogen in a hurried process. So our bodies are trying to adjust to it with all the side effects that we are experiencing. Then some have a double whammy with a higher BMI which also produces estrogen. This is Stella's theory nothing stated from my care team. I will be talking to them at my next appt.
Taco1946 I hear and am going to heed your words and put them in my notes for upcoming appts. I've read articles about PTSD and feel that I'm not that far off the grid as I'm dealing with cancer/surgery grief, the grief of the death of my sister, and then the added stress and responsibility of the hubby's health. At this point I'm making time for "ME" and doing things that I enjoy, writing in my daily Bible devotions, and finding light hearted humor in anyway I can. As we all know we can't care for others if we don't take care of ourselves first and I'm making ME a priority. Thanks for all the info. that each of you share, God Bless each of you and have a relaxing and enjoyable weekend!
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On my dentist's recommendation, I used Biotene toothpaste, gel, and mouthwash during chemo. I liked the mouthwash so much that I've used it ever since.
Stella, absolutely make time for yourself. Make some fun plans, get together with friends, try something new.
I always like some 'retail therapy'
and have come to love yoga.....it's good for me physically & mentally both. You can check out some of the Fun & Game Threads here on BCO too if you want some Internet fun.0 -
All good tips. I do take 5000 mcg biotin for thin hair. In my case it's hereditary and my hairdresser hasn't noticed any extra thinning with Arimidex. I tried Toppik which is great but it irritates my scalp so I can't use it every day. I also use their thickening lotion which helps to plump up hair.
Ruth and others are correct regarding the importance of exercise. Keep moving. No matter how much or how little. Your body will tell you when you’re over doing it.
On dealing with BC. I have better days than others. My best friend started chemo and I've been reading the boards to help provide tips to help her with some SEs. She's doing pretty well. However, It's resurrected some of my own fears.
My newly discovered ATM mutation has also increased my anxiety.
If there's one thing I have learned about BC is that everyone's situation is different. It's the “context" in which our Dx lies that determines treatment options. That's why SEs vary with each individual, life time risk varies with age etc. etc.
There's boards and posts are incredibly important because we share advice and a camaraderie difficult to find somewhere else. It's a back and forth of sharing, asking, and receiving advice.
I too, lost my sister to BC 26 years ago. We have no idea if she carried this mutation. But, my new DX has dredged up that grief again. It will eventually recede back to a place where the loss becomes more bearable once again.
The only thing we can do or we'll go crazy is to not stay in that dark place of worry and anxiety. Keep positive people around us and cut loose negativity. This advice is really more for me just as much as it is for others. Try not to dwell on SEs unless they're affecting your QOL. They may not be from the Arimidex. Both my BS and Genetic Oncologist have reminded me of how important AI's are in fighting both local and distant recurrence. So take some comfort from that.
Whew, this was long-winded. Peace, love, and strength.
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MACTAZ, do you do this in addition to working, or are you retired? I ask because you inspired me, but I will be returning to my job in a middle school where I will be standing and walking all day, although not walking at a steady rate, so I don't count it as exercise. (Wow, that was a long run-on sentence! Sorry!) Anyway, I KNOW I absolutely must exercise but after a long day, I am exhausted and thought I would be doing good if I could walk a half hour.
I was an overweight kid, young adult, adult. As a child, I was picked on for being fat, although I wasn't huge. In college I was the last one chosen for the volleyball team in gym. It doesn't make me sad, so don't feel sorry for me, I am WAY over that. My point is that due to this, I pretty much loathed any and all sports, exercise. I am the only one in my family who was overweight. With two sisters and a mother and some cousins with breast cancer, I am sure being overweight wasn't the reason for my cancer, but it sure didn't help.
Exercise for me is both a physical and mental challenge. I would like to do yoga but with two totally replaced shoulders, I don't know how much I could do. Any thoughts on that Miranda2060? I see it as fun stretching?
I am thinking of joining the gym again, I did that years ago and felt great. I need to ask my PS what my exercise limits are. I am trying to get myself in a positive mind frame as far as exercise goes. My daughter puts me to shame. She has a high stress corporate job, two pre-school children, yet uses her lunch time to run on the treadmill 3.4 miles! Her job has a gym.....more should. Also, she gets an hour lunch, I get a half hour like most jobs.
Anyway, thanks for the inspiration. Any and All suggestions are welcome! Just tell me, do you love exercising, or do you push yourself to do it and love how you feel afterwards?
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Hi Mavericksmom, I am retired so luckily I have the time for my current exercise program. Before retirement I did about 45 minutes of aerobics after work and some days it was tough. I also was a chunk through high-school and was teased. I eventually lost some weight, but throughout my life my weight constantly fluctuated but still about 20# lighter than high school. Finally about 10 years ago I just became comfortable with my weight and decided it is what it is. I lost 15 pounds on chemo and am striving to maintain that now as it seems to help my joints since I have arthritis, for goodness sa I'm only 62 and it seems like everything hit me all at once.
Once I lost the weight I did start to exercise regularly, certainly not as long as I do now. What helped me was finding an exercise buddy and we kept each other in check. I also bought some gym equipment for my house so if I was bored I could use it, those bored times didn't come very often.
You might wantto get a pedometer as I bet you are walking more than you think. I walk close to 15,000 steps a day, they recommend 10,000 so a pedometer will give you an understanding of where you are at.
Take care, any little bit you can do will help.
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Maverick, when I was first diagnosed I was teaching full time (also in a middle school setting), had a teenager still at home, an elderly parent I was looking after.......so, yikes, it was hard to figure out how to fit exercise into that mix. What I did was to try to figure out how much exercise was enough. I found an article by Richard Simmons who said you should get 4 hours of aerobic exercise (walking, running, dancing, biking, swimming etc.) & 4 hours of toning/stretching a week. I got a notebook, opened the first page, wrote 'Week 1" at the top, wrote 'Aerobics' in one column & 'Toning' in the other & then divided the 4 hours into 15 minute increments. I figured anyone could stand to do some sort of exercise for 15 minutes. So, if I walked 15 minutes, I checked off 15 minutes. If I did a 30 minute yoga DVD, I'd check two toning segments off etc. etc. until I got to the required amount for the week. I did a lot of walking, bought a lot of exercise DVDs (Denise Austin has some good ones), bought some light weights and toning bands, did exercise routines I found online etc. Since then, I've bought a Fitbit, which is great motivation for me, and joined a fitness center with a pool, great walking track, and lots of classes (held at all hours of the day & evening). I find I really like group exercise. If you do too, you can modify just about any exercise to fit your needs (if you aren't sure how, ask the instructor). Water aerobic exercises are great & not hard on your joints, I also love music based classes, and yoga (You just have to start slow & modify moves as needed, some places have beginners classes). As you get stronger you will be able to do more things. When I first started back at exercise, I had to MAKE myself get to my weekly goals. Now, I love it and will skip other things to get it in. Give it a commitment of 6 weeks and I think you will be hooked!
*I still use the notebook to track my exercise. I think I am on Week 655!
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ruthbru What a good, helpful description of a reasonable way to get going on exercise, and ways to break it down and stay motivated. I've done a lot of what you describe, and it worked well for me, too. Thanks for sharing all that.
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Mavericksmom---When I was diagnosed back in 2012 I had never set foot in a gym. I went through my UMX (no chemo or rads) and exchange surgery and started Tamoxifen still having never exercised. I hated it. I hated sports as a kid and still hate any "team" sports. But about 3 months after all my surgeries and 4 months of Tamoxifen I was really feeling the SEs. One day, on a whim, I went down to the gym and asked about a membership. Somewhere in the conversation I mentioned I was trying to deal with the after affects of BC and they told me they had a "cancer class". I could sign up for 10 weeks for $70, use all the facilities including any of the 3 pools (one was warm water which I loved the idea of), attend any of the 60+ classes they held just about anytime of the day or night and as a bonus, once a week there was a one hour "session" with a trainer for anyone currently enrolled in the cancer class. This was particularly good for me because I didn't know how to use ANY of the equipment! So this girl showed me and the other 2 or 3 people who were enrolled at any given time, how to use everything in the gym. She also happened to be yoga fanatic on the side and one day I asked her to show me some yoga moves. That way I figured, if I got the courage to go to a class, I'd know at least something. I attended a beginner yoga class about halfway through my cancer class, learned how to use the lap pool for exercise and the warm water pool for mastectomy tightness therapy and even discovered they also had a massage spa where you could get massages ( for a fee) and one of the girls was trained on how to deal with mastectomies!! And that was the beginning of it all for me. I go to the gym pretty much every day now. I do yoga 3 days a week, strength training 2-3 days a week and cardio of some sort usually 5 days a week if I can swing it. I WANT to exercise! Me! Who still hates to sweat, loves to go to the gym! The manager at the gym even let me come back a few months later and do the cancer class again. She told me that studies show that it takes about 8 weeks of working out before you become "hooked". She said if you'll just commit for the 8 weeks....to go 5 days a week and do SOMETHING....that by the time you get to 8 weeks you'll want to do it. Guess she was right. I've since moved and now go to a different gym but still love it. And my yoga classes are actually stretch yoga which means that in all honesty we don't really do "yoga" moves. Most of the people in my class are older retired folks who have no problems doing the moves. And I was told that as long as I started slowly and gradually worked up to it, I could do just about anything. I do still take care not to stretch too far in yoga as far as my mastectomy side and I don't try to do too many push ups just because I've found both will cause that side of my chest to ache a lot. But all in all I feel the best I've every felt and it certainly helped me get through the aches and pains of Tamoxifen (along with a good turmeric supplement of course!!).
Sorry this is so long but to sum it up....maybe just pick a starting point and commit to 8 weeks. Go 5 days a week without fail and see where you're at when you finish the 8 weeks. Bet you'll be feeling so much better!!
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I too am a sports klutz and on the overweight side. I came to grips with my weight when, after 6 months of no weight loss while going to Weight Watchers, my leader said "maybe you were meant to be this weight." On the other hand, by that time I had lost over 30 pounds and have kept is off for 6 years.
My fitbit is a motivator and I have several "friends" on fitbit. I also do better when I have committed to someone else to be there. So if you are taking a class, be sure to chat with the folks around you. Exchange some phone numbers so they will check on you when you don't show up. My golf group was a life-line during treatment. I think a lot of YWCA's give cancer ladies 6 free weeks of membership.
Our dog is also high energy and he has kept us both moving. Mutz also makes me laugh and loves to cuddle when I'm feeling down.
When I was working a long day and high stress job, I used the tread mill during the evening news. My reward was a jacuzzi and a trashy book.
I know that activity and exercise is good for me but I also try to set realistic goals. 10,000 steps a day is still too much of stretch for me.
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You ladies are doing so well!! I’ve been thinking lately I need to change up my routine. It just feels like drudgery to me—I really get no enjoyment out of it except when I leave the gym and know that day’s workout is behind me. We’re taking an end-of-treatment family vacation at the end of May and I’m going to stick with what I’ve been doing until then but but after that I may look into some variety.
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ariety is the spice of life. I’ve been thinking of substituting some of my time with yoga. They have classes here but I want to start with personal trainer first then move to classes, I’m not very limber. I will have to wait after I’m healed up from reconstruction surgery on Friday but hoping by early June i can start.
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Mavericksmom RE: Exercise
This thread about exercising is one I like to read. It's inspiring to see people's exercise routines, and I pick up ideas:
https://community.breastcancer.org/forum/58/topics/741082?page=1265#idx_37939
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Mactaz just a heads up that yoga was literally the last thing I was allowed to add back in. So much of it is opening up the underarm/shoulder joint. You have to be *really* healed after surgery. (That said it's also really good for getting your flexibility back.
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lala - you've inspired me to go check out the local orangetheory fitness.
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Hi Ladies - my experience with yoga ... I signed up for a gentle yoga class. At 60, I was the youngest one there. At the time I had a frozen shoulder and couldn't lift my BC side arm above nose level. I let the instructor know my limitations and she helped me and others with alternative moves. We all had something. It was a lovely class and I got much good out of it. Look for a class that suits your physical and mental comfort level. Just getting up, out and moving has great benefits.
Lanne
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If you have a friend, or friends, who want to try a class, it's sometimes easier to go together (it also makes you more accountable). Another fun thing to do is make a standing date to walk with a friend or friends. I have a group of friends who meet every week for an hour long walk. A nice way to stay in touch & get some exercise at the same time. If you have a dog, or can borrow a dog (or volunteer to walk dogs at the Humane Society), that is a FUN way to get in a walk. Nobody is a happier companion and enjoys the sights, sounds, and smells of nature more than a dog!!!
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thanks Ingerp I will definitely talk with my PS and PCP before I start.
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I'm echoing others' recommendations of gentle or chair yoga, letting the instructor know about your physical limitations. There are poses you can avoid or modify, with an instructor's guidance, for your specific needs.
I started yoga at the Cleveland Clinic (where I was treated) during my radiation, and just about a month after my surgery. I've stayed with it and added other classes available in my community, at various levels, from gentle and slow to faster vinyasa "flow." I think it's helped me in my recovery and general physical (and mental) well-being more than anything. It also really trimmed down my body, which surprised me, because it's not difficult and sweaty, generally.
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I saw my PCP today for my gynecologic exam. She was the lady who sent me to see a breast surgeon and I respect her very much. I asked her if she had any patients taking anastrazole and she said yes, many. She asked me, do you not want to take it? I told her I was taking it, and how overwhelming it could make you, reading all the side effects. She told me how much I've been through and now that I am almost through, we (the doctors) hand you another poison to take. I cannot explain it as well as she did, but she said it is our perspective that it is another drug with side effects and we have just gotten done doing that and it can be overwhelming thinking about it all again. She asked me how long I'd be on it and I told her I thought 5 years. She said they are doing research now that perhaps 10 years is a better thing. I felt better after talking with her and just wanted to share in the hopes it might make someone else feel better. She said she had many ladies taking it with no side effects, and also ladies taking it with side effects. Just try and look at things in the most positive light you can muster. Hugs, Lisa
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Missouricatlady, if your side effects are impacting your quality of life talk to your oncologist about trying one of the other AIs.
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Another interesting benefit of yoga.....my whole life my mom has told me to "stand up straight!" and "hold your dime!" (it's a southern saying
) because I had such poor posture. A couple of years into doing yoga and I had quite a few people tell me I had such beautiful posture!! I couldn't believe it. Hard to believe that such a benign exercise can have so much benefit. And I love it because I really hate to sweat. 0 -
lala I like to think I'll never be one of those little old ladies who are hunched over thanks to yoga. It really is good for posture!!
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lala - your note made me laugh because I have recently started a regular yoga practice but in the heat. I am sweating within 5 minutes and end the session dripping wet
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Lala1- your comment resonated as I just spent all day yesterday at a K-Pop bands concert and the standing and sitting in the car bothered my back! I've never had great posture, so you give me motivation to give yoga another shot!! Happy Monday Ladies!
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