How Long Do Aromatase Inhibitor Side Effects Last? All You Need to Know
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- Опубліковано 27 вер 2024
- How long do aromatase inhibitor side effects last? Which side effects can be long-term? In this video, Dr. Jennifer Griggs, a renowned oncologist explains everything you need to know about the duration of aromatase inhibitor side effects. Whether you're undergoing treatment or supporting someone who is, this video equips you with the knowledge you need to understand the potential long-term side effects of aromatase inhibitors.
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Dr Griggs , what a beautiful calming voice you have! You mentioned that after we stopped AI - our estrogen levels would go up. But then is it reasonable to think that the risk of reccurence will also go up with the raising estrogen? I always thought since AI decreased our estrogen to a certain level, that decreased level would stay after stopping the AI?
My thoughts exactly. Once you stop taking them the protection is gone I’m assuming.
It's so interesting that a period of low estrogen increasing the cure rate even though the estrogen levels come back up after the medication is stopped. It's most likely because 5 to 10 years is a big chunk of time.
When I finishes a taking anastrozole, my estrogen levels will go back up after I been on it for 5 years iam 68 years old.
Thank you so, so much for these videos, I have found them SO very reassuring. I just wish you were Down Under, it would be wonderful to have an Oncologist that believes the meds cause the problems they do. You brighten my day! 🥰🥰🥰
We're so glad to hear that the videos have been reassuring for you. We'd love to come Down Under! Thank you for watching!
I’ll be starting Anastrole in a couple days and so sad to think I’ll be back to side effects. I had such a bad reaction to my radiation therapy with 2nd degree burns followed by a staph infection and finally feeling well. This is the cancer journey which I must accept. Thank you for your informative videos!
I've been on Anastrozole for almost 5 years. Only side effects have been hot flashes and a bit of bone density decrease. Good luck!
@@suetichy2312 So happy to hear you’ve had a good experience. I just need to start and go from there.
We're sorry to hear about the challenges you've faced on your journey, but it's admirable how you're facing them with courage and acceptance. Starting a new treatment can be daunting, but know that you're not alone. Thank you for watching our videos, and remember, we're here to support you every step of the way.
VERY depressing and disheartening that our medical system hasn't provided a better way to stop re ocurrance. I'm 65 and just beginning my journey. I'm as healthy as a 40 years old, been an athlete and healthy eater my entire life. I have ZERO joint pain and no more hot flashes, no cholesterol and no high blood pressure yet this will make me an old lady in no time. By then I'll be 70 so I'll never know if the medicine will cause me to have bad things happen or were they coming anyway. IS THERE A HOLISTIC approach for this after all, it's 2024! Let's FIND A BETTER WAY!!
We share your frustration! It may be helpful to know that, until tamoxifen and the aromatase inhibitors, people with hormone receptor-positive breast cancer were treated by the removal of the pituitary and adrenal glands, rending them essentially bed bound for the rest of their lives.
@@yerbba Thank you for the response. I understand and I hope we continue to improve while making women's lives safer and easier.
@@yerbbahow sad. What was the point of living if you’re going to be bed bound. 😢
Stopped taking letrozole in October. I’m still having side effects. I’ve had surgery for carpel tunnel syndrome left and right. De Quervains release left hand, middle and ring finger release for trigger finger. Pending surgery for radial tunnel syndrome, and trigger finger release on the right thumb. This is the worst drug I have ever seen.
It appears this is Aromatase Inhibitor-Associated Musculoskeletal Syndrome.
Goodness, you got all the things, didn't you. Hoping life gets better for you off the medication and after your surgery.
Thank you, Dr. Griggs, for your helpful advice.
Thank you for watching!
Dr Griggs, could you please make a video about bisphosphonates side effects? My dentist does not want me to get it. My bone density is normal but I need to take anastrozole for 10 years in conjunction with 150 mg Verzenio twice a day for the first 2 years. I am very tired all the time to exercise every day but I try to walk every day at least 30 minutes. I’m really worried about lose bone density. My dentist told me that bisphosphonates can my condition really bad ( I have a lot of dental work in the past). Please doctor share your thoughts about the bisphosphonates. Thank you 🙏🏻
I would love this too Eccologist wants me on zoledronic acid and my dental health is not good and no dentist
Dental problems from bisphosphonates are uncommon but serious. If your body density is normal, it is unlikely that you will develop osteoporosis. While your bone density may decrease, it is unlikely to drop low enough to cause problems.
@@yerbba So taking Boniva is ok?
I am on zoledronic acid in UK for a year & have had no dental problems. I had a troublesome crown & tooth removed before I started treatment. I understand the risks increase with longer treatment, which is why my treatment will stop at 3 years. The benefits of Bisphosphonates can last for several years. I look forward to a video on this. 😊
How much more effective are Aromatase Inhibitors compared to Tamoxifen in post-menopausal women without uterus or ovaries? Does cancer risk return to what it would have been without the medicine as soon as the medicine is stopped? In other words, is there any long term reduction in breast cancer risk even after the medication is completed?
Great question. Yes, there is long term benefit to 5 to 10 years of endocrine therapy even when the medication is stopped. That is, the benefit persists after discontinuation. The Ais are slightly better than tamoxifen.
Incredibly helpful! Thank you!
We appreciate your support and we are so glad you found this video helpful!
Good morning mam,
Please make a video on stage 4 breast cancer with brain metastatis...
(Hormone positive, her2 negative)
Thanks for the suggestion.
I've had a massive leap in BP rising to 215 after 8 weeks on Anastrozle. Cardiologist said most likely it's Anastrozle causing it. 8 weeks ago I started just taking it every second day and DIM on the alternative days. My BP is slowly going down.I'm not asking anyone for medical advice, would just like to know if I'm wasting my time taking Anastrozle every second day, would it help. I don't want to return to taking it everyday and risking a stroke.
Lisa
I changed to Exemestane, and take three tablets staircasing to 4 next month. I was so depressed on Letrozole, and was like a zombie.
There is research in Europe for older ladies to take a lower dose. Obviously taking something is better than taking nothing at all.
Thank you for replying. I'll continue taking it every second day as I also thought it was better than stopping it company. My BP was uncontrollable despite taking 2 BP meds. Now it's dropping as I've reduced the dose. Also I've read DIM is helpful in regulating oestrogen too.
We don't know if this is a prudent strategy. It is, however, important to consider the whole person. We wish we had better data on the effectiveness of every-other-day aromatase inhibitors.
Thank you for replying, Cardiologist said BP is probably from the Anastrozole, family history of heart problems so always tried to keep healthy. It worked till 66 no BP problem till starting Anastrozole. I'll keep talking it every second day, hopefully better than stopping it completely. I'm taking DIM and flaxseed too, in the hope it all helps. I really don't want to have a stroke or heart attack after working on keeping heart healthy. BP is dropping now that I've reduced it
Thanks
Lisa
Dr Griggs I’m just wondering why we don’t give tamoxifen over AIs to menopausal women. We already have so little estrogen after menopause, that little bit of estrogen supports our bone, cardiovascular and overall health. Taking tamoxifen would block cancer cell estrogen receptors to prevent a recurrence while letting our body have a little bit of estrogen to keep us healthy. Estrogen is very important to a menopausal women’s health. Your insight is always greatly appreciated.
Tamoxifen is a great option for postmenopausal women as well as premenopausal women. The reason that the AIs are often chosen over tamoxifen is that they are slightly better than tamoxifen in terms of reducing the risk of recurrence.
Very clear video, thanks! Is dryness in the mouth a side effect of letrezole? I suffer from most side effects you mention....but feel I need to stick it out for 5 years...m
Thanks for writing. Yes, dry mouth has been reported in people on aromatase inhibitors. Hoping you can manage that and the other side effects.
My wife's libido has pretty much diminished since she started Tamoxifen. Is this a common thing? Is there any way to combat that?
What a great video. I wish you were my doctor. I’m 51 and just finished 2 yrs of tamoxifen. I didn’t feel any side effects but had some thickening of the uterus. Doctor switched me to letrozole for the next 3 yrs. Took it for a week and already having joint pain. I can’t stop crying knowing that I’m aging my body to prevent a recurrence. Am also wondering if these hormone blockers are just postponing the inevitable. Will dormant cancer cells start to proliferate once we stop taking these estrogen blockers? I am at a normal weight and exercise regularly yet letrozole can also cause weight gain which is a factor in the development of cancer. Nothing makes sense to me anymore. So discouraged…
Thank you for your kind words. We're so sorry to hear that you’re feeling this way, and your concerns are completely valid. Switching to letrozole after tamoxifen is a common approach, especially for those who may be at risk for uterine changes, but the side effects can be tough, and it's understandable to feel discouraged. Hormone blockers like tamoxifen and letrozole work by reducing the chance of recurrence while you’re on them and for many years afterwards. The beneficial effects have been shown to last for many years and to improve outcomes as much as 20 years later.
If the joint pain becomes too much, it might be worth discussing with your doctor whether any supportive treatments or lifestyle changes could help alleviate it. It may be helpful to know that, although people feel older because of the stiffness, there does not appear to be permanent accelerated aging.
Remember, you’re doing everything you can to protect your health. It's okay to feel discouraged, but don’t hesitate to reach out to your healthcare team to explore options that might make this journey a little easier on you.
You’re a blessing to all women touched by breast cancer. I truly appreciate your insights. Thank you so much for taking the time to respond to our concerns.
Stage 1 breast cancer I would like to try dim add diet instead of the aromatos inhibitor letrozole because I have no thyroid and I've suffered for 20 years after they took that from me I'm in a very delicate I am now diabetic and have a pacemaker my body swells up with fluid I had no cancer in my lymph nodes I would like to know what do you think of that
We are not enthusiastic about DIM. While in laboratory studies, DIM shows promise in breast cancer prevention and treatment, more research is needed to fully understand its efficacy, optimal dosing, and long-term safety. We recommend that you consult with your medical team before starting any new supplement regimen, especially in the context of cancer treatment.
My hair is thin and filling down since 8 used letrozole
Same here. I “megadose” vitamin D every month (50,000 IU) and it has helped grow it back. Check with doctor to see if it is safe for you.
Hair thinning and loss can indeed be a side effect of medications like letrozole. We're sorry to hear about your experience. Thank you for watching.
Could you talk about DES daughters and breast cancer sometime? Thanks.
Sure. Thanks for the suggestion. We will add it to our list!
I’m 75, Invasive Ductal Carcinoma, lumpectomy, no lymph nodes, Stage 1, Type 1, Grade 1, Oncotype score 5, 16 radiation treatments. After a few weeks on Arimidex I developed a rash. Now, 19 weeks on Letrozole, I’ve developed a rash. Will this rash go away on its own, or will I have to stop the letrozole completely? I have had no other side effects.
A rash is likely to persist. There is a third aromatase inhibitor, exemestane, that has a different chemical structure. It's also possible that the rash is from something else in your environment or on your medication list.
Would you recommend turkey tail mushroom supplements while on letrozole? Some research shows it helps stop estrogen and some say the opposite. Thank you
The best evidence from turkey tail is in helping people with the side effects of chemotherapy. Because it may resemble the aromatase inhibitors, most specialists recommend that people on the aromatase inhibitors avoid it out of concern that it could block the aromatase inhibitors from doing their job.
Please comment on whether the % of positivity of estrogen is a factor for the importance of an AI? I am 90% ER +. I believe that means Anastrazole is especially important part of my treatment. I’m in year 2, so far do good!😊
Thanks for the question. It does appear that the level of ER is predictive of benefit. Higher ER generally predicts for greater benefit of hormonal therapy.
What is the risk of reccurencce with pre-menopausal 50 years at diagnosis; Invasive Lobular Carcionoma
T1cN1a (3/3 LN, 12x11x11 tumor)
ER60% PR80% HER2- ; KI67:25% G2
8 years on Tamoxifen, chemo & radiation and for now NED?
I'm confused because it's 2A stage, but oncologist said that's stage 1, so I'm not sure for what group I need to follow the statistics with survival rates.
Thanks!
The tumor you're describing is a Stage IIA breast cancer. At this point, the risk of recurrence is very low. Wishing you the best.
I just heard about having a Breast Cancer Index test after taking 5 yrs of AI to determine if AI would be beneficial to take an additional 5 yrs(10yrs) to reduce recurrence of breast cancer. Is this new? Would you recommend this test be given to all women who have taken AI for 5 yrs? Thank you..
The Breast Cancer Index is appropriate for women who had hormone receptor-positive (ER+ and/or PR+), HER2-negative, node-negative or node-positive breast cancer as long as there were only 1-3 positive nodes. The test is not considered valid in people with 4 or more lymph nodes, men, or people with hormone receptor-negative or HER2-positive breast cancers. In people who are not willing to take extended endocrine therapy, the test is also not useful.
Can you have vaginal discharge that is light pink on Anastrozole?
Yes, it is possible to have light pink vaginal discharge while taking anastrozole. One of its side effects is vaginal dryness and thinning of the vaginal tissues, which can sometimes lead to light bleeding or spotting, resulting in a light pink discharge. However, make sure to discuss this with your medical team.
Im on Exemestane since August 2023. After about 8 weeks I started to feel achy bones and joints, hot flushes of course. I don’t sleep as good as before it. I feel tired a lot, mind you I still on anti HER injection- Phesgo, 3weekly.
In general is not too bad. I am only 37, hopefully after 3 years on AI my body won’t be devastated by cholesterol and high blood pressure. 🤞🏻🤞🏻
I pray for it everyday ❤
Stay positive, exercise, be patient ❤❤❤
Thanks for coming here to share your story. We share your hope that you'll feel better soon.
Very helpful! Finished 5 years of tamoxifen and I am in year 5 of Anastrozole. I've been fortunate to have only hot flashes and reduced bone density as side effects.
It's great to hear that you've navigated your treatment with manageable side effects. Thanks for sharing your experience with our community.
Thankyou for another informative video. Is there any safe and effective treatment for hair thinning, while on AI.
There are some things that can help. It would be good to check with your medical team who knows your whole history. This is a really distressing side effect. It's also important to make sure there is nothing else, like a thyroid problem, causing the hair thinning. Thank you for watching.
I'm on AI 15 months and have osteopenia and drastic fluctuations in air pressure sometimes makes me weak and dizzy. For osteopenia I have an infusion every 6 months and calcium supplement 3 times per week, calcium in the blood is now normal. For blood pressure i don't take any medication, but religiously care about my nutrition and exercise routine (that helps against osteopenia too btw and against hot flashes).
May I ask how old you are? I'm 51 and about to start tamoxifen next month for 2 years, followed by AI for 3. To say that I'm terrified about developing osteopenia/osteoporosis (in additional to heart issues and an increased risk of stroke and dementia) is putting it mildly. :(
Thanks for sharing your story here with the Yerbba community.
@@airamsipuola5045 I'm turning 49 in a couple of weeks. Well, I think we should take responsibility for our health and not be terrified of our possible future health conditions))) There's plenty of things that are known to prevent osteopenia or its progression to osteoporosis: calcium supplements, weight lifting, running (that I started last year), avoiding dairy, taking vitamin D, eating calcium rich foods, preventative medication (I have Zometa infusion). If we take care and get religious about our health and lifestyle, we would grwatly reduce risks in the future. You can do this✌✌✌
I am wondering what happens with any remaining dormant cancer cells after going off the aromatase inhibitor? Does chance of recurrence go up? Thank you for your informative videos!
Even after the aromatase inhibitors are stopped, people continue to reap the benefits. This is the same for tamoxifen.
I have HER2+ E+ (10%). How beneficial are AI with only 10% E+?. Just started my treatment journey so AI is still a ways away.
Great question. With that level of ER, endocrine therapy does offer benefit.
Ps you are such a calm in the storm. Thank you thank you!
Thank you so much for your kind words. It means a lot to know that our videos provide some calm during difficult times.
Hi.i got breast cancer plz guide according to my report.dr call it harmonal prostate cancer
How could i send u my report
We can see how this is confusing. It would be worthwhile going through the report with someone on your medical team.
Oh boy. I am just about to start on Leterzole and read the side effects. My tests all came back that all systems are functioning fine
incapacitated in any way. Have asked for Arimidex as two friends have no
symptoms. Docs are discussing. Thoughts?
Stage 1, hormone +, tubular C. No radiation was my choice y doc concurred as benefits are 1-5% only.
Starting Letrozole and reading about the side effects can be daunting. It's great that you're discussing options with your doctors. We're working on a video that addresses this topic, so be sure to subscribe to stay updated when it's posted. In brief, they are both excellent options.