Doing Well on Aromatase Inhibitors (AIs)
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magari,
I am loving no hair growth on my legs and arm pits. my hair on my head came back about 80% of what it was before.
I did no hair preservation during chemo. no hair shampoo post chemo.
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Update
Hello All.
Thanks for your support when I went of Arimidex in late September while on vacation. Frankly, it was wonderful. I ran without pain. I was happier. I did start it back within a week.
My Oncologist and I had a long talk afterward. His bottom line was that I will never be cured if I don't complete treatment.
He recommended a change to Aromasin. I did a generic for 30 days of pure hell. I had a headache every day, stayed nauseated, and my mouth broke out. However, the hot flashes stopped and I could sleep. I stood with it and the "Prior Authorization" person at my center went after my insurance like a pit bull. She secured the brand name.
BTW, if you want to check the inactive ingredients in your Rx brand, go to this site and search:
https://dailymed.nlm.nih.gov/dailymed/index.cfm
Here is the good news: No headaches. I can sleep thru the night and if I get up I can go back to sleep. No hot flashes. No night sweats. My mouth did break out again but that was over in 3 - 4 days.
I have gained 3 - 4 pounds. I know that does not sound like much. However, I have lost 53 pounds and any weight gain is just not good. I met with my Primary Care yesterday. He has recommended time restricted eating. Here is an article:
http://ockyrlandodietitian.com/2018/04/benefits-of-ti...
My husband and I will give this a good try. I continue to limit my carbs to no more that 50 and to exercise 5 - 6 days a week.
My Primary Care is NOT in favor of giving anything chemically (an Rx) to deal with weight gain. I could tell he was struggling to give me an answer and probably very happy I did not pursue an Rx. If I don't get this weight off, I can change to my husband's MD who has a wider approach to weight loss. I share this to let you know how important this is to me.
My Primary Care appointment was my annual physical. My total cholesterol was 249. However, my HDL (good stuff) was 114. He said 60 was a good number for a female. My A1c was 5.0 and continues to show a decrease since diagnosis in June 2016. All my other labs were good with just a few outside the norm but not a statistical significance.
I am back and doing well. I never dreamed I would be in this wonderful spot when I first heard that I had breast cancer. It takes time.
Coach Vicky
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So glad to hear you are in a better place now, coachvicky. You are a champion!
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good news Vicky! I too have been taken off Anaztrozole due to severe sudden osteoarthritis and am most likely being put on Aromasin. So I feel encouraged by your comments, other than the weight gain, lol!
Strange thing for me the first two weeks off Anastozole I had the worst hot flashes and night sweats that I have had. Thankfully after a couple of weeks they have settled out.
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CoachVicky- I'm happy for you.
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Great update, CoachVicky. Just re: the intermittent fasting, I started it about 2-1/2 years ago when I was talking to my RO about general health stuff. She does it, and told me all of the non-weight-loss-related reasons it's good for you. Different schedules work for different people. For me, skipping breakfast has been pretty easy. I still treat myself to a carby breakfast when I'm on vacation, but normally don't eat until midday.
I've just dipped my toes into the AI pool. Began taking anastrozole several weeks ago but only every other day (with my MO's okay). Can't say I've really noticed much in the way of SEs. This weekend I'll start taking it every day and I'm sort of peeking through my fingers when I look ahead. Hoping I tolerate it well, or at least pretty well.
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Thank your all for your support.
Coach Vicky
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Vicky that’s AWESOME news! Breast cancer survival is definitely a testament to our patience. I also made the switch to Aromasin from Arimidex/Anastrozole I’m only 3 weeks in but I already notice a big difference I feel like I can live. I’m going to look into the restricted eating thing...also I’m not sure if you have one available to you but I started doing Orange Theory & I love it. It is pricey but it’s soo worth it. I’m stronger than I’ve ever been & I figure if my splurge is getting myself fit then so be it. Thank you for sharing & so thankful for all of you wonderful ladies who share this journey with me.
Hugs, Michelle
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Michelle ... That is a BIG commitment to do Orange Therapy. I may consider something like that after the first of the year.
Right now my free time is purging the home and its contents. I got two large grocery sacks out of my laundry room Tuesday and that was the smallest amount so far. I did not realize how things had got out of control after diagnosis and during treatments.
Vicky
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Vicky,
I’m glad I’m not the only one who feels that way. I have some purging to do myself. But at least now I’m well enough to move without aches and pains haha!
Hugs 🤗
M
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Don't forget when you are purging that your local thrift store might like some of it. Our local food bank pays for all of its overhead with the thrift store. One never knows who needs our repurposed items.
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those keychains are beautiful and love the message behind it. Thank you for sharing.
Here’s a question for you guys....I found out my oncologist is leaving her current clinic (I’m devastated but understand her reason) and moving to be closer to her kids. The current office is 5 minutes from my house and I see her every 3 months we talked that I will always see her every 90 days (Clean mammo and 6 months later had 3.5 lump). Her new practice will prob be about 40 minutes away. Would you follow her or go to the new doc being assigned to you?
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for me I would stick with a doctor I am comfortable with.
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If your insurance will cover her at the new place, I think I'd follow her too. Unless your comfortable with another doctor in the practice. When I'm in upstate NY for any part of the winter - I'd probably stay local. As you read, you can see I'm no help. It's what you're most comfortable with. ❤
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Hi to all-wanted to check in as will be a year next month on letrozole-am doing well on it--initial few months of migrating joint/muscle pain eased after first 3/4 months==only joint still bothersome is base of first toe probably exacerbating a preexisting arthritis..take advil and tylenol each am am wearing Hoka support sneakers recommended by podiatrist--like nite and day-highly effective-do try if you have foot pain.
My hair started mildly shedding about 5 months in-happens to about 30 percent of patients--not happy as worked hard to save hair with Penguin cold caps during 4rounds of TC last year kept-75-80 %..yea!! shedding is thruout-not noticable and is mild-mostly after shampooing-am spacing shampoos out to every 4/5 days..hope it will level off over time.
still have some sleep disturbances-but then again sleep with 4 dogs which doesnt help..
am slender=130 lbs-have gained 5/6 pounds--coming off now -only technique that works for me is to count calories--and have rejoined the gym in a program for BC survivors
am in the letrozole only arm of the Pallas trial==wont have study results for 2 more years-is about adding ibrance for prevention in early stage to see if will help prevent a recurrence-currently only approved for metastatic dz
Wishing you all a happy holiday-I am 17 months out from my lumpectomy-all good so far--fingers crossed it continues-hugs to everyone,Kaylie
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Imkopy2–my BS (who treated me in 2016 and last spring) retired so I *had* to move to another doctor. If you’re really just in maintenance mode with your MO I would absolutely at least try another doctor at the closer location. I am all about keeping life easy and an 80-minute round trip for a 10-minute appointment would be a little much for me. I get the loyalty thing, but as long as your current MO understands your reason for switching docs, surely she wouldn’t be surprised.
While I’ve read this thread often I’m not sure I’ve posted before. I started anastrozole every other day in early November and only switched to daily a week ago. I must say it hasn’t been too bad. I am a little stiffer when I’ve been sitting for a while but that’s really it. I was really concerned about potential sleep issues but haven’t had any. Also no hot flashes—I must not have had much estrogen going into this. :-(
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Stay with the MO you trust. If the drive becomes too much then you can make a change
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I drive an hour each way to visit all my doctors and totally worth it! I trust them and the hospital they are all with completely. I actually enjoy going to my doctor visits because when I was first diagnosed I would take myself to lunch or buy myself a small treat after each appointment. Now I don't mind the drive at all!! I think having doctors you love is one of the most important parts of treatment.
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I agree with others here. Sticking with an MO you like and trust is well worth the drive. My MO is an hour drive away and we have no problem with that. Of course, now I only see him once a year, but even when it was every 3 months we would drive to meet him. We would often make an outing of the visit, going out to restaurants and events in the big city of Kansas City, lol.
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Imkopy2 RE: following the MO to a new location.
I choose short drives if it's ever possible, to save my time and energy for other things. Cancer has taken over my life in a lot of ways, and now I'm trying reclaim my time and energy to be used for things that aren't related to my medical issues.
When I was going through chemo, I had to drive myself to infusions and to all appointments. I'm retired, but my husband is not, and I didn't have a ton of people whose schedules allowed them to be my driver to appointments. So, having my MO be a 10-minute drive from my house was essential. I didn't have the extra stamina to manage a longer drive. It was important for me to manage everything myself if possible, and that was possible because the chemo clinic and all of my MD's are just 10-15 minutes from my house.
If I'm feeling just great, and have time, then managing a 40-minute drive to a doctor isn't a big deal. I like the other suggestions: make it into an outing that's enjoyable, add on a luncheon out with someone or a shopping excursion if you have time to do that.
To make this decision, the thing I'd have to balance is driving time (do I have the energy and time to do it) against the challenge of starting over with a new MO. I do have experience with that part. My original MO from my first DX in 2003 stopped seeing patients and moved to an executive position after she'd been my doctor for a few years, and I loved her and didn't welcome a change. However, the MO she recommended that I go to next has turned out to be just great, so I haven't had a traumatic or disappointing experience with changing doctors.
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Kaylie, I'm about to start the Verzenio Phase III trial (monarchE/Abemaciclib)...sounds like the same trial you're in but with a diff. pharma. Any tips or insights?
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hi back.looked up the monarch E trial and is similar to Pallas except different drug in same class .i have been in my trial since 2/18..am ok being in control arm as if study shows benefit in reccurrence prevention..my doc has option to start me on it..highest risk of recurrence in first 3years so will still be in that time frame.
I have more frequent labwork..every 1-3 months. Cost not covered by trial.goes thru my own insurance.so maybe check to see if that covered?
Diarrhea common effect of ibrance which i prone to occasionally .so ok not to face that..had read that going on preventative lomotil may help reduce that.so would have tried that..
Lots of good research coming out this week after the San Antonia Breast Cancer Symposium..check it out..new discoveries and treatments moving thru the pipeline..thanks for reaching out! Kaylie(Candace)
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I've been on Anastrozole (manufacturer is Accord Healthcare) for 5 weeks now, and I would say I'm doing fine. First two weeks I had extreme fatigue that was quite bothersome, so I switched to taking the med at night. After a week, I switched back to taking it in the morning, and I don't seem to have that weird fatigue any more. I do have stiffer joints, but it is solvable with an NSAID. I do have thinning hair, so I don't love that, but it's too soon to see if this will be a huge problem or a small one. No sleep problems, very minimal hot flashes, which haven't been disruptive. I do realize that some side effects are cumulative and things might show up in a few weeks or months, but so far, no huge problems at all for me on this generic version of Arimidex.
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anyone notice mild leg swelling or lack of leg hair growth after taking AI for a year and a half?
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2FUN, I've been 7 months. Not having those symptoms as of yet. Definitely much more stiffness than in the first few months. Lack of leg hair would be ok but not the swelling. Keep us posted
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I have been on 8 months. Doing some laser hair removal and it is working wayyyyy better than they usually see. Other than that, all seems pretty normal hair wise.
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My experience so far (9 months on arimidex) has been fine. I haven't experienced any side effects. I get a one year dexascan in April so will then be able to see any effect it might be having on my bones. Originally I was taking TEVA brand. My pharmacy switched to Zydus, and I immediately noticed a difference. They weren't able to switch brands or order a different one, so I went to a smaller, local pharmacy and talked with the pharmacist. She researched all available brands and their inactive ingredients to try and find one most similar to TEVA (which she said is no longer manufacturing this drug). Accord was the closest, and so after switching to that, everything was fine again.
Good to hear that others have not experienced bad side effects. I feel so bad for the women who are having trouble tolerating the medication.
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thanks MDRR, I will give it a month and look into that. Stiffness is my only complaint. If I keep moving, no problem at all. Once I stop and go to move it's tough at times. Again, within 15 minutes I'm fine. Thanks for the suggestion
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Joint stiffness, for sure, and that's my main side effect. I feel frozen in place after sitting for awhile, but then once I'm moving, my joints behave again. I do look ANCIENT when I stand up and start walking. Anastrozole (manufactured by Accord Healthcare) 2 months now.
I often take an NSAID to help with this, like Rx Meloxicam (long-acting, helps w/arthritis) or the usuals, like Aleve or Ibuprofen. Just now have had 2 weeks off all NSAIDS including before and a few days after my implant surgery on 1/2/2019. Okay to re-start NSAIDS in one more day, says surgeon.
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