Doing Well on Aromatase Inhibitors (AIs)
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CeliaC, Happy Birth 🎂
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Has anyone else who was prescribed Zometa infusions while on AIs decided not to have the entire course of infusions? I have had three (out of six, I think?), and the co-pays were pretty high. I'm two and a half years out from active treatment and because of COVID and other factors, I've kind of fallen away from medical appointments. My initial dexa scan showed osteopenia and my follow-up scan was "stable." I'm supposed to have more infusions, but am holding off for the moment.
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miranda2060…
Go to zometa website, they have a patient assistance program to help with co pays etc.
https://www.patientassistancenow.com/
Your hospital/clinic etc also has a patient assistance program.
Here is another.
https://www.rxhope.com/PAP/info/PAPList.aspx?drugi...
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Recently I read that prostrate cancer might start producing its own testosterone even though an Rx is used to stop/block production. Has anyone heard if ER+ cancer might produce its own estrogen in response to AIs or Tamoxifen? I did not know this before seeing my oncologist earlier this month, so did not have a chance to ask her. My estrogen has never been monitored before/during Tamoxifen or AI. When I ask, I'm told that monitoring estrogen is not part of the standard of care. So it sounds like I could pay for a test with the usual blood draw for WBC. I will post this on other AI and tamoxifen threads, sometimes it seems like information is scattered.
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Recently I read that prostrate cancer might start producing its own testosterone even though an Rx is used to stop/block production. Has anyone heard if ER+ cancer might produce its own estrogen in response to AIs or Tamoxifen? I did not know this before seeing my oncologist earlier this month, so did not have a chance to ask her. My estrogen has never been monitored before/during Tamoxifen or AI. When I ask, I'm told that monitoring estrogen is not part of the standard of care. So it sounds like I could pay for a test with the usual blood draw for WBC. I will post this on other AI and tamoxifen threads, sometimes it seems like information is scattered.
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Thanks, Kimmh012,
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BlueGirlRedState - Over the last couple of years I have read of some studies that suggest that when deprived of estrogen, some cancer cells might be figuring out a way to create their own estrogen. I don't have links, as they were things I just came by randomly, but I think if you google with appropriate key words you will find something. I mentioned this to my surgeon once and although he had never heard of it, and it wasn't really the purpose of my visit with him, he did say that from what he knew of breast cancer, it seemed possible/plausible.
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Glad to be referred to this space.
I start radiation on Tuesday - 20 treatments - and will begin AI in the new year.
Well, reading about AI on other boards and sites, even within this website, has freaked me out. So much pain. And problems.
Hoping, trusting that my experience will not be catastrophic and will be manageable. I will, of course, speak up - I've gotten very good at this over the past few years and since BC came up - and insist on discussing and trying "alternatives" if/when it might be necessary. So far, the oncologist with whom I'm working seems great for empathy and understanding as well as depth of knowledge.
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MicheleH57, you read us who come here for support because we have SE of AI however, many AI users are doing very well and they don't have SE that's why they don't write in here. You may be one of many without SE. I wish the radiation to go smoothly and AI even easier in your body.
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MicheleH57 - Hopefully you are one of the lucky ones with no or minimal SEs. Not everyone gets them, and it is a spectrum. There are other generics and brand name available, other drugs, and tamoxifen. I have been using brand name Arimidex which I get from Eagle pharmacy in Florida directly, much cheaper than through insurance. It seems like it has less intense SEs than generic. Many people post what seems to help including diet, exercise, hydration, various herbs including CBD/THC (oral and topical). GAIA tumeric "joint" seems to help me. I take glucosamine/chondroitin as well. CBD/THC did not seem to help.
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Thank you! I completed radiation on Dec 31 (!) and the first bottle of Anastrozole arrived yesterday.
I am searching for a "best place to start" with taking it every day.
What have you and others found with taking it in the morning? Or taking it in the evening?
What was your experience? Did you change when you took it?
I think I'll start with morning, although I sure already have a pile of pills to take now, including Citracal (2 large "horse pills!)
and a multi-vitamin as well as 3 Rx from earlier times.
Thanks!
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I don't see any difference morning or afternoon. Brand name drug (Arimidex) many women tolerate better. If you were postmenopausal before your treatment, you will have less changes and side effects.
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I also have difficulties sleeping! So open to all suggestions.
I am switching today from Tamoxifen(2,5 year) tot Femara. Any of you already did that?
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When I first started Arimidex Nov 2017, insomnia was one of side effects. It was also possible insomnia was due to chemo induced menopause. Regardless I switched to morning within the first two weeks. I have not skipped a dosage since then. Knock on wood minimal side effects or it also could be I tricked my brain I am stuck with it for 10 yrs so in my mind I have close to no side effects. had another DEXA scan done a few months ago. To my pleasant surprise it was really good. Counting my blessings.
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Same as Castigame, minimal side effects not worth mentioning here. I have been on Anastrozole for almost seven years and will stay for as long as my bones hold.
best to all
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Hi Castigame,
Could you please give me some advice regarding bone health? How do you keep your bones strong on AI?
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Hi All,
I'm glad to have found this topic.I've had a surgical biopsy for ALH found on core biopsy.
My surgeon recommended seeing a MO for chem-prevention. After reading about the side effects,I was afraid to start.
I've had the pills since Dec 18 and just took the first one today.
I'm on Anastrozole. I'm encouraged by all of your positive posts.Thank you so much. I feel much better.May I ask what the Claritin is for?
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MikaMika - You should have your current bone health evaluated to have baseline for evaluating/monitoring the effects of AI on your bone health. I do not know if there are any guaranteed ways to prevent or minimize bone loss or to separate bone loss de to AI vs aging. It is known SE of AI and your DR should be monitoring for it. I do take supplements, including vit D, and some calcium (maybe 30% of daily recommended). Some foods other than dairy provide some Ca. Weight bearing exercise is highly recommended. This can be walking. I keep meaning to get ankle weights. I was using a weight circuit at the Y, especially for upper body, and will probably go back. Masks are required all areas except showers and pool and while on treadmill or bike. The have a vulnerable hour when mask required there as well. The staff cleans areas continually.
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Hi Outback, and welcome to our BCO Community,
Claritin (chemical name: loratadine) – NOT Claritin-D – has been found to ease bone pain (side effect) caused by certain drugs. We hope that you do well on Anastrozole!
Keep us posted
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I have my baseline DEXA scan done.
Castigame mentioned that her last DEXA was good, this is why I asked about any tips and tricks.
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Mika, are you recommended to have Zometa infusions every 6 months? It supposed to reduce recurrence and also protect the bones. My previous MO suggested to me as optional but my current MO told me to do it since I'm thin + Letrozole is a combination that I may develop osteoporosis over time.
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Been on the aromatase since March 2019. I was post-menopausal since 10 years previously so I call it menopopause 2.0. I previously had minimal hot flashes but now its worse, Also getting more joint twinges and dry skin. But can't say anything is worse than it was before. Besides anostrozole am taking my calcium and Vitamin D (2000 mg not the 900 recommended by the oncologist but my GP concurs) and also fish oil (the less processed which is less Omega3 but ,ore Omega7 which is recomeded for joints) and turmeric which my oncologist also says she takes (didn't ask her why - it is supposed to boost immune and reduce inflamation) Also weight bearing exercise - which means walking or exercise in which you bear your own weight. Before I got my info-packet with the dexascan I thooght it meant lifting weights but it means bearing your own weight - as opposed to swimming).
My original Dexascan wasgood (lowest T-score -0.1) so my onvcologist didnt\' recommend anything but the calcium and Vit D. However I read in this forum about the tumeric and fishoil Omega 7) being good for joints and the next meeting witth her she didnt' disagree..
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Lilly,
My first DEXA was normal. So currently I take vitamins only. I have to do some dental procedures which can interfere with Zometa. As I understand, this drug has other strong SEs.
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Thanks everyone for recommendations and for sharing your experience. 💚💚💚
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Hi - sharing my AI + bone health story. I was 61, and I did have osteopenia (shown on a bone density scan to get a baseline) before starting my AI. Since it's known to usually lead to reduced bone density, I qualified for Zometa. Every 6 months, I have an infusion, which takes an hour or so. Zometa is also quite protective against bone metastasis from breast cancer, so that's another reason why my oncologist wanted me to try it. Every 2 years, I have another bone density scan. After 2 years, my bone density has improved slightly, at the pelvic and hip area where they measure. That is good news!
I've never heard of side effects specifically from this medication. The day after my infusion every 6 months, I'm a bit tired, and sometimes just SLOW, and then I'm fine, the day after that. Before my infusion each 6 months, I have blood draws so that my oncologist can check kidney and liver function, since this medication can be hard on them when metabolized. All levels have been fine so far, and I've been on it for 2+ years.
It does, weirdly, slow bone repair. Seems a bit counterintuitive! It makes a matrix in the outer layer of bone, using calcium that it 'grabs,'and that matrix prevents fractures and adds to density, but also makes healing go slowly. So, patients are encouraged to get any planned dental surgery done ahead of starting it. Same with trauma like broken bone or a joint replacement. Schedule it for before the medication, ha ha. I find this quite hilarious. Who plans trauma! I did have to have a very small surgery 1 month after starting Zometa / Zoladex. It was the removal of a screw in my foot, which had started backing out after a joint fusion surgery a year before. It was quite funny (and painful) to LITERALLY have a screw loose, of course....but, I digress.... In fact, this tiny little surgical procedure did take at least 6 weeks to heal, and it is usually a 2-3 week time to heal such a thing.
I do 1 hour of daily exercise, and also I do take Ca + Vitamin D, and also my oncologist checks my Vitamin D levels about once a year, so that's also all in place to support my bone health.
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I am 33 days in (as of Feb. 5) taking Anastrozole and I am doing OK.
NO side effects. Well, none to speak of.
I've felt a few twinges in a few muscles, but I've been stretching a lot, so not sure about cause-and-effect.
On Thursday afternoon, I felt a very short - 20 second - rise in warmth, but nothing more. I would not call it a hot flash.
Now, I am concerned that my chin is broken out. A lot.
But I'm pretty sure it's probably not due to hormonal change, but it's "maskne" and a lot of everyone is dealing with that!
Dx: Age 63 8/2020 DC, Left, 1cm, Stage IA, Grade 2; Clean sentinel node; HER-, ER+ and PR+.
Surgery: Lumpectomy, 10/6/2020 part 1 [node removed] and 10/22/2020 part 2 [lesion removed] [problem with wire placement in part 1]
Oncotype: 10
Radiation Therapy: 12/1/2020 to 12/31/2020; electron first 15 days; proton last 5.
Hormonal Therapy: Anastrozole beginning 1/4/21
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I am currently doing Taxol, 3 treatments left. Then mastectomy and radiation to follow. My question is when did you all start the AI? Seems most AI meds start after radiation. I asked my MO why wait? Cant I start it sooner? She doesn't see a problem with starting it sooner.My BC is grade 3 and I'm scared that it may try to grow back after chemo....I am post menopausal, so the hot flashes etc I am familiar with. Just wondering what everyone is doing. Thanks,
Julie
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JujuMartin: I started AI before radiation began
I have 1st radiation treatment next week. 3 weeks on AI0 -
Good to hear how others are doing on AI!~ I am meeting with my RO this week and my TOP question is why can't I go ahead and get started on AI while in the middle of radiation. I had mastectomy, I completed chemo in Dec and am 1/3 done with radiation. I'd really like to get going on AI!
I already deal with hot flashes and am hopeful I will have few to no SE on AI - I'll be starting Letrozole.
Also, asking if there is a baseline bone density test before beginning. I assume hormone levels will be checked as well. Did any of your do that?
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Jujumartin...I started AI before radiation. However, my RO had me stop it during radiation and for 2 weeks afterwards. Good luck with the rest of your treatment!!
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