Doing Well on Aromatase Inhibitors (AIs)

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  • Taco1946
    Taco1946 Member Posts: 645
    edited June 2018

    Yes to generic claritin. Started when I started taxol and have continued it with MO's approval. Also continued the glocosomin/condrotian and calcium with Vitamin D I was taking before BC. I feel good - play 18-27 holes of golf a week (badly, but I am out there) and do my 7500 steps a day. Did arimidex for 7 months before going to femora in early Dec.

    Go for it Deb!

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  • 2FUN
    2FUN Member Posts: 956
    edited June 2018

    I remembered my arimidex last night. Gotta go take it now!

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  • PatsyKB
    PatsyKB Member Posts: 272
    edited June 2018

    So glad I found this group - Letrozole is the AI my MO prescribed for me last week. My OncotypeDX number is 24 which is causing me to pause and consider chemo but 99.9% certain I won't do chemo. Some of you may have "met" me in other discussions, so I won't bore with details.

    Right now I'm staring at the Letrozole bottle, re-reading the Oncotype report with its graphs and numbers and statistics, considering risks:benefits, and working towards making a decision.

    I feel like I need to get a move on it...

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  • PatsyKB
    PatsyKB Member Posts: 272
    edited June 2018

    ingerp, re: hair, I have very thin hair (haven't yet started Letrozole...this is just me and my "legacy" from my mom) and I've been using men's Rogaine topical (the Kirkland generic minoxidil drops) since 2002 and it's helped me keep what I have. (I have a technique I use that keeps my hair from looking yucky because of the drops. Happy to share.) In addition, my dermatologist suggested I take zinc gluconate (50mg) daily as well as Biotin (5000mcg) and Biosil (capsules - 1 in the morning, 1 in the evening). All have done a lot to keep my hair healthy and on my head. Yes, I have thin fine hair and i'm sure I'll lose some when I start the AI but maybe not as much as I might have without these remedies.

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  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Hi Patsy,

    Did you get a bone density test before deciding on which AI? I will finish rads next week and have a bone density test scheduled after. My Oncotype DX was 17. It saids I have 11% chance of recurrence in 10 years after taking Tam for 5 years. I wonder how that translates to if I don't take Tam and take AI? Are you going to take it 5 years or 10 years? I suppose taking it 10 year would lower the recurrence. My MO said we can revisit again in 5 years.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2018

    Thanks for the tips, Patsy. I’m still in the losing phase, and I guess about two months from the growing-back phase. I am really curious what the new growth will be like

    Nono—my MO said only five years on the AI (which I will start in the fall) but there is new research that 10 years provides slightly better benefit than five. I guess the medical community has five years to figure it out. ;-)

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  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    5 vs 10 years on AI...1st studies set 5 years as the magic number because 5 years with no recurrence or mets means cure. AIs and hormone blockers did show significant reductions in recurrence, mets, survival vs placebo. Today, we know 5 years isn’t enough to declare cure when it comes to BC as it’s a sneaky cancer. Plus Thanks to these meds we are living longer. Add in that more and more younger women are being diagnosed and the need for 20 year studies is there. And 10 years of therapy did provide significant benefit on those parameters vs 5 years. And that’s why they originally said 5 years and now they say 10.


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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited June 2018
    And I believe there have been some studies that have said 7 years are as beneficial as 10, so that is what I am aiming for. Psychologically, I can handle that better. Only 4 more years to go!
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  • DebAL
    DebAL Member Posts: 877
    edited June 2018

    Coach Vicky, Taco, and everyone, tomorrow is the day I will start arimidex. Well its the 13th..maybe that's an unlucky number and i should wait till the 14th lol I can't believe it but I even bought a weekly pill dispenser!! Now I'm officially my mom! I'm continuing the Ca, Vit D i have been on for years. Just stayed on the claritin since I was taking it to help with neulasta shots anyway so no reason to stop. Will just add glucosamine/ chrond to the mix. On average I walk 3 miles a day at work..very long hallways ..and get in 3 mile jog after work so we will see if that helps. Lift weights 4 days a week. That's all the energy I have to hopefully ward off side effects. Fingers crossed! 🤞

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  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Debal,

    Good luck tmrw. I'll be joining you with the pill dispenser next month. I can't even remember if I took my vitamins!

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  • smwusaf
    smwusaf Member Posts: 129
    edited June 2018

    bwahahaha - I bought two weekly dispensers one for the morning and one for the evening. I swear I would forget for sure if I didn't. :) I've decided to view it as I'm super organized. :)

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  • DebAL
    DebAL Member Posts: 877
    edited June 2018

    nonom, can't wait for you to join me! We can remind each other! Smw, argghhh i almost bought a day and an evening dispenser but it was HUGE!!! Darn you I may have to return the one I got lol. This is funny but not really funny!!

    image

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited June 2018

    DebAL,

    So on 14 June you will only have 4 years, 11 months, and 28 days to go.

    I count down everyday. Makes it do-able for me.

    Vicky


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  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Is that BPA free ?

    Coachvicky - the eyebrow pencil came and I don't know what to do with it? Return it to China?

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  • coachvicky
    coachvicky Member Posts: 1,057
    edited June 2018

    I wrote in large red letters on the unopened package RETURN TO SENDER. Put it in my mailbox and my letter carrier picked it up. I did take a picture to send to my credit card company.

    Vicky

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  • smwusaf
    smwusaf Member Posts: 129
    edited June 2018

    DebAL - I actually got two like yours in different colors and keep the evening one in the kitchen on the window sill so I remember to take them after dinner....

    coach - I love the count down idea. I have 4yrs, 9mos and 7 days. That's doable. :)

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  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    smwusaf- just a word of caution especially as we’re coming into summer...heat and direct sunlight through the window can degrade your meds and cause loss of efficacy. Learned that the hard way a long time ago. Like you I have a hard time remembering, so my box got moved to my spot at the dinner table. Since some of my meds cause nausea now, I take everything at bedtime with a snack so now it’s just routine to grab my pillbox no matter where I put it.

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  • Mommato3
    Mommato3 Member Posts: 633
    edited June 2018

    I'm jealous of all of you counting down to your last day! What date am I supposed to count down from?? 10 yrs, 7, 5?? I'm confused!

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  • CindyNY
    CindyNY Member Posts: 1,022
    edited June 2018

    Mommato3- I'm not counting down to an unknown stop date. Maybe 2023, 2025, or god forbid 2028. I'll just pop that pill till I'm told otherwise. Unless QOL is diminished...I'll cross that bridge when I get there. It is what it is. 🌸

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  • smwusaf
    smwusaf Member Posts: 129
    edited June 2018

    Good point Lula, thx

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited June 2018

    Yeah my MO told me it'd be five years but there seem to be various studies out there showing a total of 5, 7, and 10 years as being best. I'm assuming they'll figure it out during my initial five-year period. I'll probably treat myself to a five-year stop date once I start and see where the medical community is when I get there.

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  • willowreed84
    willowreed84 Member Posts: 47
    edited June 2018

    I switched from tamoxifen to arimidex in March. My experience may not be normal but I really am doing much better on the AI.

    My hot flashes are much less intense, joint achiness is less, brain fog is nearly gone, and I'm losing weight (gained 20 lbs during the last 3 years). I also have less mood swings, less depressed.

    I was on tamox for 3 years. I thought I just had to live like that. I switched onco's and new Dr suggested trying the AI. So glad I tried the AI.


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  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    same experience here, Willowreed!

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  • PatsyKB
    PatsyKB Member Posts: 272
    edited June 2018

    DebAL I have you beat on the meds box front - Mine is Morning/Evening, 7 days of course and each compartment is crammed full. 3 daily prescriptions plus mostly supplements (approved/suggested by my pap and my dermatologist and ok'd by my MO).

    Now that I have quit dithering and questioning myself and going over and over and over my 24 on the OncotypeDX and reexamining stats/risks:benefits and so forth, I decided to start the Letrozole and get on with my life.

    So, pill #1 yesterday (Tues 6/12/18). And I figure, since it's a minimum of 5 years, I'll just go with that in my tiny head... Today was pill #2; 1825 days to go.

    Not sure how long it takes before side effects begin to emerge but I am embracing today as a day when I am feeling wonderful. I hope to continue this, although my idea of "wonderful" may have to be adjusted, depending upon SE.

    I was so wrought-up in my mind over this decision - chemo or no chemo; is the 3% benefit in comparison to the downsides of chemo, etc - and now I feel so placid and calm and at ease with my decision. Whew. As my husband says, now we move forward with no "creeping doubt."

    Onward!

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  • smwusaf
    smwusaf Member Posts: 129
    edited June 2018

    PatsyKB - Onward! I love that. We make the choices and live our lives as best as we can. Here's to no side effects for you. :)

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  • PatsyKB
    PatsyKB Member Posts: 272
    edited June 2018

    Thank you, smwusaf! It does feel good to be moving forward.

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  • DebAL
    DebAL Member Posts: 877
    edited June 2018

    patsy , lol i still need to go get my evening box in a different color as smf suggested! I still can't believe I will be the proud owner of 2 color coded pill boxes!! Lucky Me! I just swallowed my first pill so I can always rely on you if I lose track over the years! I'll deal with side effects when and if they happen. Like you, 2 prescriptions and the rest supplements. Let's keep our fingers crossed for minimal side effects! Movin' on!!

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  • JuliaJazz
    JuliaJazz Member Posts: 246
    edited June 2018

    Here is my favorite pillbox. Locks so pills don't spill and has both morning and evening.

    https://www.amazon.com/Dose-Weekly-Locking-Pill-Planner/dp/B001CDXLI2/ref=sr_1_7_a_it?ie=UTF8&qid=1529071418&sr=8-7&keywords=locking%2Bpill%2Bboxes&th=1

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  • bella2013
    bella2013 Member Posts: 489
    edited June 2018

    Yep, I have this one too! I officially am my mother now😱

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  • Taco1946
    Taco1946 Member Posts: 645
    edited June 2018

    Not my Mom - she never needed any pills - another warning to those of you who are using pill despencers - they don't travel well. I had mine in carry-on luggage and somehow it opened when I was going through security. My guessing which pill was which was a disaster!

    I'm not counting days yet but at my age I'm hoping I can stop at 5 years. But thankfully, the treatment of BC is moving forward. When my husband was a general surgeon 25 years ago, mastectomy was the "standard of practice." And as we know more about the nature of our tumors, our treatment can be more targeted.

    Those of you who are just starting the AI journey, Just do it! Keep talking to your MO until you find the right one. I started with arimedex and now take letrozole with minimal SE. I have continued the claritin from chemo and the Vitamin D and chronic/gloc from my preBC days. I haven't done much about diet (MO actually said her goal was for her patients was to keep their weight stable) but I have upped my exercise and think that has helped with the joint pain.

    Happy Weekend, everyone.


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