Doing Well on Aromatase Inhibitors (AIs)
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Walgreens has a round 7 Day pill dispenser with a button in the middle that advances the next days' pills each time you press it. It has a little door on the sidethat gives you access to fill it or dispense meds. They come in 2 or 3 different colors too which is great for separating AM and PM meds. I've traveled with it multiple times now with no issues. And even if the door did open, only 1 days' worth of pills would spill out. If you look for it in the store, it's usually on the shelf right above the vertical display of long pill boxes and cutters.
https://www.walgreens.com/store/c/walgreens-push-button-pill-case/ID=prod6208224-product
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Lula73, that little dispenser you posted got me thinking, so I went searching.
Because there are days when I sometimes space out in the morning - imagine that - I really need to be sure I take the letrozole. So I have an alarm set on my phone for 6:30 a.m. to and I set the little letrozole container on my breakfast napkin the night before. But I'm thinking I"ll order one of these little dudes either for just my Letrozole or for the Letrozole + my other 3 prescriptions. https://smile.amazon.com/gp/product/B074V4XTL6/ref=ox_sc_act_title_1?smid=A97GWDVHHLU4G&th=1
The bigger, 7 day organizer with AM and PM compartments can be for just supplements.
When I travel, I take the 7 day organizer but, to keep it from popping open in flight, I stick it in a large ziplock or other plastic bag and secure the bag with a rubber band or two. That does the trick. Generally it goes in my carry-on because I don't want to lose it.
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Oh, as for the topic of this discussion, I've only been on my AI since Tuesday and today's Saturday so...I am optimistically hoping that I WILL do well on it.
Keeping an eagle-eye out for side effects. So far so good.
Onward!
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I started a new topic but had no takers so I'll ask here: has anyone gotten HA injections in their knees or hips since being on Anestrozole (any AI)?
It's not cortisone, it's derived from rooster comb and lubricates the joints. I've had it several years ago, and now my knee & hip are acting up, I'm just wondering if it's worth it to do it again.
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If it worked well before, it would definitely be worth trying it again.
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nonomimi5 - First the OncotypeDX assumes tamoxifen. I was a 24 on the OncotypeDX (and I am single-receptor). I am on an AI which is the standard of care for post-menopausal women.(I don't know your status - if you're premenopausal, then Tamoxifen may be what your MO recommends.) This is something to discuss with your MO.
The choice of which AI was my MO's; as he said, all 3 are roughly the same but people respond differently in terms of side effects, so he started me with letrozole and we'll go from there.
I have a DXA scan (bone density test) every 2 years without fail and am mildly ostopoenic which I hold steady (and have even improved a bit) with weight bearing exercise, resistance work, Biosil, calcium, and my diet. My MO has ordered a DXA scan so that we have a baseline report. I'll be scheduling that next week or so.
I have no idea how long I'll be on tetrazole - the standard is 5 years and then we see where things stand. That's enough for me. I don't need to plan 10 years in advance. I know I may be on it for 5, 7 or 10. One day at a time. And I know that there are no guarantees. Some people do the minimum treatment and never have a recurrence; some people do everything and do have a recurrence. It's a crapshoot and I have living to do, so I'm not going to worry about what I can't control. Right?
Good luck!
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Hi, all. It's been about 2 weeks since I started taking Arimidex/Anastrozole. Perhaps a few more hot flashes than before, and achiness in my hips and ankles that may or may not be a bit increased.
I've been faithfully doing my PT exercises at home and I think they help quite a bit. No other side effects to speak of so far, and hoping that remains the case!
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Magari,
That's great to know. So happy for you. Keep it up!
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HI ladies.
I am not quite as far along as you all are. I will be finishing up my DD Taxel June 28th and will be starting radiation next month. I believe my ON wants me to start the pill while on radiation. I am wondering what to do with my exercise and weights after chem. I am sooo confused on what you can and can't do to avoid causing issues with lymphedema after my right arm after 23 nodes where removed. Any suggestion on helping with rads and when to start exercising would greatly be appreciated! I am not a full blown weight trainer but was thinking that if this may help with bone destiny and weight gain I should considered it. Also I am stage 2B. Not sure why that is showing 0.
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Life1963- there are a few great lymphedema threads. I have lymphedema and I wish I had found the threads before I was diagnosed. There is also a great Web page.. speak up speak out.. (I think) you will find so much information in the lymphedema section...just being aware before I problem occurs will be very helpful.
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Thank you Vargadoll. I will check it out.
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LIFE, here is an old post of mine about LE, maybe it will be helpful:
"I had 11 lymph nodes removed, so this (LE) has always been an area of real concern and mindfulness for me. When I had my surgery, there was no one around here to go to for advice, so I did a lot of studying on my own. Here are some thoughts & tips I came up with.
First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad 'luck'.
That being said, there are many 'little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):
- No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway). There are some really pretty ones out there that look like jewelry (I have a good website if you want it)
- Wear gloves when doing yard work, gardening etc.
- Wear sunscreen when out in the sun, bug spray when out with the bugs
- If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
- Be sure to switch arms when carrying your purse, hauling around anything heavy, dragging luggage etc.
- Be careful about saunas, I avoid them, and also manicures and massages (on that quadrant of my body anyway).....not everyone does, but that's just me
- Keep a healthy weight
- Keep hydrated, limit alcohol
- Don't wear tight rings, watches, bracelets on that arm (when flying, I put my rings on my other hand & leave them on that side fro a couple hours after I land)
- Also, be sure to keep well hydrated when flying, move your arm around a lot, make fists etc. get up & walk around the cabin (which won't be a problem if you are well-hydrated because you will have to go to the bathroom!), if someone wants to help you hoist your carry on & off the overhead, let them.....maybe think of checking a heavy bag....
- When exercising that arm; start very slowly, take your time...build up weights very slowly...don't skip levels...don't do too many reps in one session. Mix up your exercises, don't work the same muscle groups every day. You may want to work with an experienced trainer (or PT) to help you construct a balanced program.
- One thing I do want to add; after my surgery I was scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little 'normal' soreness...because anytime you exercise a part of your body that you haven't been using for awhile, of course, it will feel sore. That made sense to me, and gave me 'permission' to get moving.
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Ruth- excellent advice! My LE is my dominant hand which makes it a challenge sometimes. It's been a new experience reaching for everything with my left hand and trying to carry all groceries my bag and things would that arm. Thank goodness my girl has always walked on my left. She only walks with assistance she needs just a little support to balance.
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Ruthbru. Very helpful indeed! I am finishing up chem and would like to start hitting the gym. Getting ready to go to radiation so I am not sure they will want me working out. I know I need to do something thuogh. Mt 20 lb. Dog got scared with thunder the other night and took a flying leap into me. She landed on my port so I had to lift her up and the right arm being my dominant one of course that is the one I used. Now I have a burning sore feeling under my arm pit. I think I may have aggravated it pulled something. Ugg. A fur baby mom has to do what a mom has to do. Lol
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I've been on all of the boards and have never really posted on this one. Here's my take about arimidex...
Originally my onc had me start arimidex in January 23, 2017. I took my pill and thought okay I have 9 years and 364 days left. I go to work Tuesday and get my flipping period...I hadn't had it in 7 1/2 months. (Talk about pissed) I called my onc and they had me stop & had my appt in Feb and she started me on tamoxifen and gave me Lupron shots....I did this until I had my hysterectomy in Sept. No real side effects from tamoxifen.
Started Arimidex December 1st & so far so good...I guess.
Here's what my body has gong on...
I had trigger finger in my thumb, my onc sent me to a joint doc who shot up my thumb in the joint and I haven't had an issue with that since.
I also feel like I have plantar faciatis...when I first get out of bed I walk like I'm 90 and once I get moving I'm ok. But if I'm seated for too long forget it. My onc suggested these compression sleeves for my feet which seem to help. With it being I try to wear them when I'm at home since they don't look cute with sandals.
I had radiation and both of these side effects started about halfway thru my treatment. I was very convinced it was because of rads but my radiation oncologist said it was more likely a SE of chemo. (I finished October 2016) Fast forward to the present...My MO said that arimidex has a tendency to amplify underlying issues a person may be having. I exercise 5 days a week (cardio/ weights) to try and combat the bone loss factor and keep my weight regulated. I see my onc in July and wonder if I should try one of the other options but then think maybe I should just leave well enough alone.
Sorry this was so long but I figured I'd share it all. Hope all of you are doing well, hugs!
Michelle
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Michelle - thanks for your input. I too feel like I'm 90 when I get up in the morning. I sit on the side of my bed and stretch plus I have this hard, nubby ball from REI that I roll under both feet to stretch them and "wake" them up. That is very helpful. I too work out at least 5 times a week and I've noticed when I take a down day I am stiffer all day. I think exercise is totally key for me. I do a 5am work out before work. My family thinks Im crazy.
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Taco the locking pillbox I described above is the answer to problems. You have to push a button while pulling the compartment open. Hard for a child to do as well.
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Imkopy2/Michelle- I work out 5x a week as well, I'm retired so noon is my class. I do think exercise is key. My arthritis is acerbated by Anestrozole. Where I mildly ached before, I now have pain. My left knee, right hip, both hands, even my toes hurt, but its doable. If you can get by without a quality of life loss, I'd leave well enough alone. Only you can make that decision. Best wishes!
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I often believe that I would be sitting on the couch if not for Arimidex. That little pill forces me to get up and exercise.
Life is strange sometimes. I am truly healthier after my BC diagnosis than before.
Vicky
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CindyNY-I’m thinking the same thing. My onc always tells me how fantastic I’m doing, but then I get in my head and start to think differently. Thanks for reassuring me 😘
Vicky-I agree I’m more determined to keep my butt on track...mentally and physically I’m certainly stronger after DX.
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coachvicky, it's the same for me! Before taking the pills, I could put off exercise or just not do it. Now I'm doing yoga, bicycling and walking, whatever I can do to keep moving! I'm no athlete, but I'm doing as much as I can. The physical therapist (for my post-radiation contracture) was impressed by my full range of motion.
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I’m doing less exercise 😩
My legs feel like lead.
I run 3x week but slower and far fewer miles than prior to diagnosis. I swim 2x week and strength train 2x. Trying pilates.
I am super tired this week. With my oncologist’s permission Im taking two weeks off aromasin to see if the hot flashes and joint pain lessen.
Oh well. It could be worse.
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runnercrb, I had the same thing happen on femara and exemestane, I'm 2 weeks into arimidex and I'm doing ok. Not great but better. Hand in there and keep exercising even if you are going slower.
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Imkopy2- I just had the samething happen! I went to my oncologist on March 20th. Blood work results post menopausal. I was told to immediately stop Tamoxifen and go on Anastrozole. March 2st start Anastrozole. I had not had a period in 14 months. I was doing great with no side effects. April and May were 2 of the best months I had in over a year. May 31 I start spotting call doctor. Go in for blood work results premenopausal. WTH?! Stop Anastrozole go back on Tamoxifen. PCP ordered transvaginal ultrasound, pap smear, pelvic exam and endometrial lining biopsy. The biopsy was this past Tuesday and I should have the results next week. The Tamoxifen gives me major dry mouth and I have cold chills instead of hot flashes.
I had to go to my RO today (not planned) I got stung by a sweat bee and I have a terrible rash and 2 red welts. I have LE and of course the stings are in the LE side...grrrrr!
JuliaJazz- Siesta Key is my favorite Beach!
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runrcrb, I agree with 2FUN, keep moving. Even if its slower. I definitely have had to work my way back and I still don't run anymore. I find that power walking is my limit but you can burn some serious calories with inclines and hills. I was a bit surprised by that.
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Glad to see so many doing well. I have been taking anastrozole since January and am so achy, especially in the morning. My feet and knees are the worse. If I've been sitting for awhile it takes a moment to get up.Seems like all the little aches I had before are doubled. I can't walk as much as I could before (I was walking 3-5 miles) which bums me out. I take zumba a few times per week and don't jump and am able to do it. Has anyone switched AI and found something that is easier in the joints?
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I’m on femara/letrozole. Very few SEs and the ones i have are manageable. Left hand is stiff in the morning but loosened up quickly and some issues staying focused on a topic and finding words. Far better than what i experienced on tamoxifen.I also take curcumin daily to help with any inflammation.
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Lula73 - is curcumin better for inflammation than turmeric? or are they about equal? I've been on turmeric for a few years (and I feel it's really helped) and it's been recommended by my MO's dietician with whom I consulted. But I'm always looking to do everything I can!
I know that reducing inflammation is important not just for AI SE's but for reducing cancer recurrence as well.
OCDAmy - hope the joint pain improves. Maybe it's worth discussing Letrozole with your MO? It's the AI mine prescribed as our "step one" AI because, in his experience, it seemed to cause fewer SEs in his patients. Of course, everyone's different! (And I know NOTHING at this point because I've only been on it for 11 days...)
Thank you al for sharing SEs and solutions and comfort!
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Forgot this - specific to bone loss...
I began Letrozole on June 12 and of course one of the side effects can be bone los. So my MO ordered a baseline DXA scan to determine where my bone density is at the beginning of the long-AI-haul was disheartening, as I've lost bone density in the hip since my last DXA and am now officially in the osteopenia range (-3 T-score) which sucks big time. (for the previous year or two, I'd given up supplemental calcium with the agreement of my pcp because I get so much from my diet and because of the possibility of problems with excess calcium...well, THAT didn't go well, did it?)
Thankfully, my MO put me on 1200mg calcium and 5000IU D3 as soon as we met (weeks ago). His medical assistant called yesterday to say that my MO recommends injections of Prolia every 6 months. This is the first-line defense he prefers because it carries fewer side effects, is effective in halting bone loss and can even reverse it, and in addition, Prolia protects against METS in the bone. So I'll be getting my first injection next week if we can get this through my insurance without delay. (Some insurance companies require you to "fail" with the bisphosphonates like Fosamax first; I was osteopenic and because of an over-prescribing doc at the time I was on Fosamax back in 2004-2006; my orthodontist told me to get off of it; so I figure that's like failing, right?)
(Side note: I have a good friend who shares health stuff with me and I do the same with her - she really was my inspiration for knocking back my cholesterol and A1C via diet and exercise. She has been on Prolia for years and her bone density actually has improved. So that gives me hope.)
The dietician in my MO's office called me as well (I'd asked for some nutritional counseling to bump up my already 95% plant-based and healthy diet in order to reduce recurrence risk) so she helped me add to my wisdom.
And I'm going to make an appointment with the manager/trainer at our gym to have her design some weight-bearing/resistance routines as well as some high-intensity cardio routines so that I can improve my workouts.
Any other suggestions for forestalling/reversing bone loss?
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