Doing Well on Aromatase Inhibitors (AIs)
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Plus yoga will give you long, lean muscles, a strong core & good balance. A win all the way around!
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Hi, guys, I don’t comment often on this thread for some reason, but just wanted to share something with you. I started taking Anastrozole in December of last year and was constantly troubled by side effects like hot flushes (up to 10 times a day), joint pain and vaginal dryness. The pill was manufactured by Accord. Then I spoke to my pharmacist and begged her to order Teva for me because I read that it produces fewer side effects. There were problems getting it, but she persevered and I got my first Teva bottle about a month and a half ago.
Well, I have to say that I didn’t expect that much of a difference! Now I am down to about one hot flash a day, usually in the evening and my joint pain is gone! Not sure about vaginal dryness, because I still use coconut oil moisturizer just in case, but maybe will give it a rest one of these days.
My pharmacist said that if she gets prescription, she can get Teva for anyone who needs it. It’s a private pharmacy, so I am guaranteed personal attention. She also made me great scar creams for my mastectomy scars. Here’s the pharmacy info, if anybody is interested. It’s licensed day in many states.
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InnaB2018 This is good to know; thanks for sharing. I'm so glad this change has made a great difference for you!
I started Anastrozole at the beginning of November. I had all the usual side effects you mention, and they gradually really receded. Now, at 6 months, I barely have joint stiffness, hot flashes are very minimal, and thumb joints are less cranky. I had severe fatigue for 2 weeks, and then that went away. I noticed that all side effects were much better at 4-5 months, but they were definitely all super bothersome the first two months. Vaginal dryness is solved with Estradiol cream, which my MO says is okay to use since it's shown NOT to be absorbed systemically (I hope that's true! He says yes, for sure).
So, my side effects were the usual "reduction of estrogen in the body" ones, and my body became accustomed to most of them, as my MO had predicted. He had said all along: Try to take this for six months, because your body will adjust. And, I guess mine did. Ha ha, it's like he KNOWS STUFF, lol.
I've now had 8 weeks of getting one hour of daily exercise, and am building back strength, lost through about 16 months of reduced activity due to chemo + BMX + foot surgery in 2018. So, better muscles are making my joints happier, and who knows whether my joint discomfort has lessened due to better fitness, or because my body's gotten accustomed to being on the AI.
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exvellent idea. As it stands- i have tucked my
tamoxifen into a drawer because i cant
bare the thought of uterine cancer.
AI’s will worsen my already compromised
bones- so with cancer, itsa crapshoot
in SOME womens cases... NOT ALL.
( weighing a wee benefit of tamoxifen with the very real risk of uterine cancer in post menopausal women is near impossible “ would you rather
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ajbclan--My niece would die with envy if I told her you spent all day at a K-Pop band concert! She is totally obsessed with BTS. It's all I can do to keep her in cheap BTS gifts for her birthday and Christmas....much to my sister's dismay.
But that's what aunts are for!!0 -
ajbclan--My niece would die with envy if I told her you spent all day at a K-Pop band concert! She is totally obsessed with BTS. It's all I can do to keep her in cheap BTS gifts for her birthday and Christmas....much to my sister's dismay.
But that's what aunts are for!!0 -
Thank you very much for sharing this article. It’s from 2006. Standards of research-based practice don’t usually include research that old in medicine these days..,but still, it raises an important question for me. My OBGYN says that recent studies haven’t confirmed this study, and that the cream type of Estradiol isn’t exactly studied, whereas the ring type is. My MO says that his research on this doesn’t confirm this 2006 study, and that his information and guidelines aren’t changing to contraindication. My girlfriend who’s an OBGYN wonders: “does an AI actually impede the uptake and efficacy of topical Estradiol?” So, does it even work, when we’re on an AI, she wondered aloud in a conversation I had with her about this recently. In her practice, she’s seen coconut oil do the trick. I feel completely bewildered by all this. In two weeks I see my MO again and will ask more questions....Estradiol has another Quality of Life addition for me——it has helped with urinary urgency and has generally made mytissue less fragile. I will continue to research this.....
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HikingLady- I had started using Estring prior to BC. My OB/GYN had me remove it after giving me my dx of bc. Then at my MO appt I told her I had removed it, she told me she allows her patients to use it so I could go home and insert a ring. She said it's such a low dose and it's directly where you need it.
I see my OB/GYN on Monday for my yearly. If I'm correct I'll be scheduled for an internal ultrasound. Should be intetesting to say the least.
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I went and had a DEXA Scan. Everything is good, and the bones are the same as 2 years ago.
I was put on an every other day regimen for the AI six months ago to reduce SEs, and it helped.
The oncologist is suggesting to stay on the AI for 7 years. It sounds like a long time, but I will do it.
- Gyno is completely against hormonal creams for me. I do pelvic floor therapy and use coconut oil.
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HikingLady, I am sorry I may have caused some bewilderement with my link.... And I am glad you say you will be researching this. I would greatly appreciate any information you find on this.
I know the article is old, but since they simply measured the amount of estradiol in blood, I don't think this can be outdated? Well, maybe it can, since the products used can be different. They measured the rise of estradiol in the blood of the women after insertion of vaginal cream. And since it rose, the AI did nothing to prevent it from rising.
Maybe somebody else has any information on this.. I would be glad to hear. So far, my MO and my obgyn both say no to hormonal creams.
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cassiecanada, I totally get you. My MO is concerned about me taking Tamoxifen b/c I had uterine CA during my BC treatment. My MO says "what if there are uterine cells running around your body and they get activated from the tamoxifen" Gyno Onco says you cant have any more uterine cancers b/c you have no uterine cells. And all the drs say "you decide what you want to do and let me know" I think that's a crappy attitude.
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JaBoo I just met with my MO this week, and discussed Estradiol cream again. He's very confident that research does not show a problem that makes him think I shouldn't use it. Obviously, he's not in agreement with other MO's treating others of us, as we see in this thread, with some doctors saying No and others saying Yes. My OBGYN friend explains that research has been done more on ring-types (long term insertion, steady release at a certain rate) than cream + applicator, because the dosage is more reliable. When it's cream + applicator, there's the possibility of user error, so that hasn't actually been studied as much. She says, and it's her field to know such stuff.... As for raising estrogen level, I also read that the level can go up a bit with the cream, but immediately is slammed down again because of the AI, which inhibits the uptake of the molecule. And, my MO says No, the estrogen isn't systemic at a worrisome level, it's local with the cream, and he concludes that based on credible research he's reading. So, my MO continues to say that it's safe and he is fine with my using Estradiol cream, as prescribed, which is 1/2 g, 3x per week. In 6 months, I will have my next MO appointment with a new doc, because current one is moving across town to another branch of the practice. I will ask next MO about his opinion, and will continue to use it for now....
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Hi all, new to this topic, just starting anastrozole this week, done with chemo and radiation, still on Herceptin.
Wondering if anyone here has tried Rogaine to keep hair from thinning?
Also Vitamin D? I am taking 5000 IU daily with the anastrozole, hoping that will decrease amount of bone loss.
Appreciating all the advice on this topic! Thanks!
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I've had no hair thinning.
So far. Knock on all sorts of wood.... After he checked my Vitamin D levels, my MO gave me instructions for how much Ca and how much Vitamin D to take (supplements) to help support bone strength. I had a DEXA Scan before starting Anastrozole and I did have osteopenia, so I'm on a bisphosphonate.0 -
I’m knocking all over the place. Starting anastrozole 6/16. Will ask MO in July how much Ca and D to take. Thank you for reminding me. Since I worry about everything , now about estrogen loss and subsequent altzheimers.
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I haven't had any hair issues either--it seems I read about that more with Letrozole. That said, I've been taking Biotin since before my dx. I did start taking D3 (1000 IU/day) last fall, and added in some other "bone strength" things (a complex with calcium and several other things), although I'm not a big believer in supplements. I've not heard about any connection between AIs and Alzheimer's.
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Ingerp, I had not heard of the estrogen/alzheimers correlation either until I saw this posted this morning on another link. It's a lengthy read; I got the impression more research needs to be done. But the article did have other good information, ie, xenoestrogens v phytoestrogens in our diet. Also might be plug for the author's new book coming out in 2020.
https://medium.com/neurotrack/menopause-and-alzheimers-1c455f29fe16
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I have been interested in this topic because of a family history of AD. Estrogen is neuroprotective, promotes synapse formation, and helps promote brain healing after brain injury. Reducing estrogen, as occurs at menopause or taking AIs, has the opposite effect. If one is predisposed to AD (ie, has the ApOE4 mutation), a reduction in estrogen (and especially taking chemotherapy) may contribute to chemo brain and early cognitive impairment.
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Hello, Everyone!
Tonight I finally took my first AI (Anastrozole). Day Zero.
Confession: I procrastinated for 6 days after picking up the prescription. According to my MO, I will need to be on an AI for the rest of my life, so I needed some extra time to bring myself around to acceptance of this fact.
Gratitude: Thank you all for posting here about SE and how you manage them, which gave me the confidence to get going with my treatment program.
***
Dx: 3/2019, de novo stage IV
metastatic breast cancer with metastases to 3 central lymph nodes in neck
following complete thyroidectomy for papillary thyroid cancer WITH NO PRIMARY
BREAST CANCER IDENTIFIED and NO OTHER METS (so far); diagnosed at age 65ER+ (88%), PGR+(2%),
HER2-equivocal (not enough remaining surgical lymph node tissue for FISH), KI67
borderline (15%)Type
of Breast Cancer: Possibly lobular (ILC)Surgery: None
Radiation Therapy:
NoneChemotherapy: None
Targeted
Therapy: NoneHormonal Therapy: 6/04/2019
AnastrozoleOther
Cancer Treatment: Radioiodine Treatment (RAI)
for papillary thyroid cancer scheduled for June 19, 2019
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Hi GlobalGal,
What a difficult and shocking DX you've been recently dealing with! This is a supportive place to share and vent. Your anxiety about starting on an AI is very much shared by many! I'm doing quite well with my AI.
You can set your DX and TX information in My Profile, in the tabs: My Diagnoses and My Treatments etc. That information will create a Profile for you, which will be your signature on posts.
Sending you very warm wishes for comfort and good success with your AI.
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Glad you took the plunge, GlobalGal. May they work with few (if any) SEs for many, many, many years.
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Thank you, Hiking Lady, for tips on how to set up a profile (instead of copy & paste from a Word document).
So far, absolutely nothing to report in the SE department.
Hope it stays that way.
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GlobalGal Keep us updated! Wishing you a smooth ride.
One more part of our profile creation on this site is the decision about which info you want to have be Public and which part Private, and you set each part of that, as well.
Although I managed to write my profile and share my DX and TX, I've never figured out how to add a little personal clarifying note or statement, as I see that some people do.... I never found those on the profile-creating drop-down menus....
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Hi HikingLady!
To add the additional information:
Menu
Settings
Signature
Edit
I hope that helps!
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While we’re at it, somebody recently posted how to hotlink a username (or whatever you’d call it) and I’ve already forgotten. Anyone?
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Dumb question, but I’ve been on Letrozole for about two months with no side effects. Now I am worried, because I am fat, that it isn’t working! I know this is crazy, but how does anyone know if it is working or not? I had almost 16 years with no cancer found between my two diagnoses. I know some people said they had their estrogen levels checked but since I don’t know what it was before, I wouldn’t be able to tell if the Letrozole lowered it.
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Maverick that's a great question. I hope someone with more knowledge will chime in. My husband was just asking recently why we're all on the same dosage. One thing I think pertains to some of us is that we didn't have much estrogen in our bodies when we started the AI. I've noticed some SEs but never had hot flashes or anything—I went through all that ten years ago. I don't think there's any rush but that would be a good thing to ask next time you have a check-in with your MO. In the meantime, consider yourself lucky!!
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No SEs is a good thing! As with anything, some people have an easier time than others. My SIL said she never felt better than when she was pregnant. I felt like crap. In the end, we both had very nice babies. Some people sail through menopause, others had a terrible time....the results are the same.
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Interesting question Maverick. I also wonder why everybody needs the same dosage. There seems to be some evidence that being overweight makes aromatase inhibitors less effective compared to Tamoxifen. Worth checking the literature and discussing with your MO if you are overweight -see below. That being said, the SE are not fun and I wish I didnt have any.
https://link.springer.com/article/10.1007/s11912-019-0787-1
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