I'd like to say as a breast cancer patient. As well as a subscriber to this channel. I appreciate the honesty and information being given. My biggest beef is the overwhelming practice of being underinformed on not only medication side effects but your experience when undergoing a procedure. As well. My case manager claimed to know nothing about Chemo brain. Denied it was even a thing. When your routinely treated this way. You can lose faith and trust in your medical team. Which leaves you to question everything adviced. It seems they have their protocol to follow and do not consider it worth their while to admit the truth. So let me thank you for the honesty and integrity shown / given to people here.
Thank you so much for writing and sharing your experience. It can be so hard to be told that something you're experiencing is not happening. Wishing you the best.
Oh the lies told to cancer patients! I was a hospice RN for 18 years. All of my breast cancer patients were dumped on our team with bald heads? Why? Because they were given those chemo treatments even though they knew they would not work! Huge money to be made! I am Stage lll breast cancer and I am in charge of my care. My oncologist was irked but now after 4 years, he is kind to me. I refused chemo but did 27 radiation burns. Hurt lungs and heart. On anastrozole 4 years. I hate the side effects. Fatigue is awful. To get 26% chance to live longer may not be worth it??
@@susiepingleton3614 Susie, I stepped back just aghast that you refused Chemo therapy. Especially being that your also a nurse. Can I please ask you why? Do you think it's ineffective. Or do you have that kind of cancer that Chemo doesn't work for? I'm with you on we have some difficult decisions to make on our treatment options. It's like gambling and betting when you look at the pie charts and graphs as nothing is guaranteed to you and we consider all those %. Before finding this lump in my breast. I was in pursuit of a double hip replacement. That condition has worsen so bad I'm in a wheelchair. So after going through everything that was suggested. I get to the end and foolishly think. That's it I'm done with cancer treatment. To learn that it's not over as your told you need to go on a Aromatase inhibitors. With all it's Chemo like side effects. So far I:m holding off on starting that as I'm waiting on my hip surgery. I so desperately need to get my mobility back. A quality of life decision. So I'm with you are those side effects worth it for that % of preventing recurrence? Susie I sure would appreciate your opinion on some of these controversial cancer treatments. As I'm my own advocate ( widow) . Investigate and educate myself. Thank-you! Look forward to learning all I can.
An oncologist that I fired dodged my question about chemo brain. At least the second oncologist admitted it was real. I already had memory damage due to another medical issue. Worse after stopping hormone replacement and chemo therapy. Thank God i am retired because I could never have performed my previous job.
@@lindajones4849 Linda I'm matriarch of a family that has ADHD. I do struggle hard to overcome my deficits. ( My math skills and sense of direction are really poor ) . Now I've noticed words just escape me. It drives me crazy as I've always had above average reading comprehension. & Lexicon of words. Read where this one lady outright refused hormonal / endocrine therapies. She's a college professor and could not afford a loss to her cognitive skills. Who out there can say they can afford to have her brains scrambled? Denying or avoiding this conversation is just not fair. We need to insist on a better therapy that doesn't have so many devastating side effects. As I'm betting the number of women not taking Tomoxifen or Anastrzal be a lot higher then what's reported.
I have been on Metrazol for nearly a year now. It has been a relief to know that the side effects I’m experiencing are normal. It is also good to hear that it’s possible to take a break and try some of the others. I have learned that the more active I am, the less joint pain I have. It is hard to feel so old. I know it’s worth it but the side effects are real. I also was told my cholesterol is a little on the high side and it’s good to know that that again is the lectures all, and can be cataracted with exercise and more fiber. Learned a lot thank you so much.
Thank you for your wonderful informative videos. After 3 years of a combination of first tamoxifen followed by Anastrozole I can say the worst side effect that has caused me the most grief is the sexual dysfunction and severe vaginal dryness. All the rest I can handle but I was 47 at diagnosis with a husband and this effect has been devastating. I have shed more tears over this than the loss of my breasts and the chemo, radiation and fear of metastasis. All other side effects sound much worse than the reality is and I will continue to take AI’s no matter what as I have children who need me.
Thank you for sharing your experience. Loss of sexuality is yet one more thing to grieve. We're going to be making a video on sexual health during and after breast cancer treatment, so keep coming back.
Doctors are very willing to prescribe these drugs with horrible, life ruining side effects, but ask them to prescribe ambien so you can get some sleep or percocet for pain relief and they tell you they are too worried about potential risks. Does that sound like they really care about our quality of life?!? If women are on these drugs and ask for help - give them help, not lip service.
Thanks for writing. We agree that starting another pill or pills to treat the side effects of hormonal therapy is not ideal! Sometimes we don't know how bad someone's side effects are being patients are hesitant to report them. They want to be "good" patients. But we can't work on improving quality of life if we don't know just how bad you feel.
Sadly the DEA has started to practice medicine without a license and has scared med docs into NOT prescribing and taking care of their patients, i.e pain goes ignored ----GOD FORBID we (docs cowering from the dea and not fighting for patients in patin) allow you to have PERCOCET and some PAIN RELIEF, sleepless nights oh well docs say nap during the day, and anxiety god forbid you go on benzodiazepines which would be helpful and yes you have to keep taking it JUST LIKE THE DAMN AROMATASE INHIBITORS to work, so thanks DEA for f' ing up medical and treatment everywhere and making doctors stupid about actually taking care of patients. I see it every day as a healthcare professional -- yet women are expected to just SUCK IT UP and SUFFER because docs won't stand up to the DEA and fold like a wet diaper and THAT is not practicing medicine nor taking care of patients. ____ not to get political but maybe we need to stop with the ED meds now over the counter, yeah if men have a problem with their quality of life the DEA will not interfere because they are in need of that ED med -- the war on women is beyond belief. (the crossed out areas should actually be highlighted so just wanted to be clear on that)
Your videos are so helpful without being confutation. I am starting my breast cancer journey but like to be informed. I have had my first interview. I am one of the lucky ones with small size and early detection with only a large cyst as the problem. I have followed your videos and feel fully informed many thanks
All We’re doing is exchanging one set of problems for another and then to offset these problems with taking these aromatase inhibitors. They want you to take a bunch of other pills one for depression one for osteoporosis one so you can sleep really
It is so hard to feel like a walking pharmacy! Understanding the benefits of a treatment can help you decide if taking a medication is worthwhile. It would make sense to find out what the benefit of the aromatase inhibitor would be in your case. For many people, they want to avoid a recurrence and are willing to deal with the side effects. As long as you are making decisions based on high quality information, the choice is obviously yours.
More older women die of heart attacks and strokes, and alzhiemers than breast cancer. As I have awful effects from.my aromotase drugs Im only doing them every three days. Recent European study shows similar effects but reduced side effects. Im actually thinking of stopping them altogether as I think others factors are more important to control.than estrogyn.
Hi Im from Hungary! Than you very much your video is very helpful! My mom 74 years old she Her2neg and PrPos and Er positiv! She take Femara,Ibrance and mTOR is slowly starting to take! She suffers a lot from letrozol breast effect!! Lot of legs pain… also take XGeva! Thank you very much your video❤
Im tempted to go ahead and have my bilateral mastectomy, and say screw it to these drugs. I say that because i already have osteoporosis, and serious joint problems. Quality vs quanity.
Thanks for writing. It's important to know that surgery, regardless of how extensive it is, does not reduce the risk of the cancer coming back in other parts of the breast. For that, systemic therapy (for example, chemotherapy, targeted therapy, and endocrine therapy) are needed in many people.
Thank you for all the information. I have severe arthralgia on letrozole and zoladex. Not hot flashes nor night sweats. The diziness has been around for a few months, but I no longer notice it most of the time. Sometimes I wonder if it's being effective since I don't ger all the side effects. Nevertheless I wish I could ease the joint pain. Wouldn't comming out of letrozole for a few weeks and going back to it be a risk for the cancer remission? I'll try to talk about this with my doctor and see if she helps me out with this, but I really appreciate your information too, as I never had been shown any alternatives and it's nice to know there's some more to it. Regards from Portugal.
Thanks for writing. A brief period off of the aromatase inhibitor to see if you can stay on it long term or switch to another aromatase inhibitor is an option. The goal is to help you find a medication you can stay on for the long term.
It has made me feel hopeless for the future. I delayed medication after surgery and am not sure I want to skip ahead 35 years to feel like I'm 90 and miss the best part of my life. I may choose living in the moment and let the chips fall where they may.
It's not uncommon to fear the unknown of course. Some people do just fine on endocrine therapy and don't feel like they're 90. In addition, the symptoms resolve once you're off the medication. One strategy that has helped is to try the medication for 3 months to see how you feel before making a decision. We hope this is helpful.
Why are you not advising women to change their diets? There are plenty of anti-estrogen and cancer fighting foods out there! Instead I am hearing Doctors telling us to take something that may help prevent future cancer, but in the process can damage your skin, heart, bones, digestive systems as well as cause depression and brain fog. I am sorry, but in my opinion, the percentage of protection it gives a cancer patient is not enough when you take all of the damage it does in comparison. I will not be taking these things. I already have some of these issues and there is no way I am going to take something that is going to make these things even worse.
Thanks for your feedback. We have videos regarding healthy diets and lifestyles. Also, many of our videos are focused to provide support to people who are currently undergoing breast cancer and its treatment. The benefit of hormone therapy is to cut the risk of recurrence by 44%, which is pretty good. And we understand you!
WOW I feel the same but we aren't working to find what the main triggers are ,,I have tried ,anastrazole and had sooo many sideeffects that I'm now not doing them,,,no one explains that it's like going into ,,,so many side effects I felt like ide aged 10 15 yrs ,,,,and it was awful so check all avenues
Thank you for this very thorough explanation of the side effects. It is very upsetting to have to take so many meds as a response to side effects for another med. I understand the greater risk of the return of the cancer. But at some point quality of life needs to be a consideration. I am not on these meds yet. I am still in the midst of treatment, but I’m not looking forward to this medication given all the side effects. Thank you again. I appreciate your honesty.
We couldn't agree with you more. Quality of life is just as important as length of life. Most people are able to tolerate the anti-estrogen therapy. We have a lot of people who've been sharing here that they feel pretty good on these medications. In general, people who don't feel good are more vocal. In other words, those people doing just fine and having few side effects are not very likely to come to comment if that makes sense. You won't know how you'll do til you try.
I have been on Letrozole for about a year and I’m getting thumb joint pain could this be because of it? I workout daily. Would it be convenient to switch to another one and if so is there another medication that won’t damage the bones?
Fortunately, there's no bone damage, but it sure can feel that way. Yes, the joint points could be from letrozole. Talk with your medical team about alternatives.
Question please?(I love this channel and find it helpful.) In order to increase cognitive function whilst taking aromatase inhibitors, would it be beneficial or contraindicated to eat healthy foods high in estrogen? Thank you.
This is a difficult one because in general one would not want to take enough dietary estrogen to increase circulating levels of estrogen--this would "undo" the mechanism of action of the aromatase inhibitors. It is also difficult to consume enough estrogen to get circulating blood levels. The general dogma is to not try to consume enough estrogen to raise blood levels of estrogen. Thank you for watching!
If Anastrozole has a half-life of 50 hours, why take it everyday? I found a study from a few years back that concluded that taking it every other day might be as effective as taking it every day. Why hasn't this been studied more extensively? Why a "one dose fits all" approach when there are so many variables in BC diagnoses?
Such a good point. The therapeutic index (benefit-to-toxicity ratio) is quite wide with the AIs. On the other hand, the dose ranges have been studied in thousands of patients, and there is not inter-person variation in the way the Ais are metabolized as for many other drugs. We appreciate your asking good questions like this.
I’m pursuing this approach with my UK oncologist but they weren’t receptive to it at all. Their approach is one size fits all! I’m early stage 1/2 & can’t understand why I would need the same dose as someone stages 3/4! No consideration for height, weight, fitness, diet, etc. Doesn’t make any sense to me.
I am about to start letrozole in about four weeks after my radiation and I’m really scared especially now that I hear this post about heart issues blood pressure issues trouble breathing issues. I am absolutely terrified, but I know that I should take this pill verse is not taking it do all women have the side effects. My oncologist said that most women don’t is that true I don’t know what or who to believe anymore
The side effects we covered are not all that common. You'll only know how you feel on the medicine if you try it. If you have side effects that are troubling, switching to a different aromatase inhibitor often helps. We are rooting for you!
I'm 2 weeks into a one-month washout of Arimidex. Can't handle the endless appetite and weight gain. I will try the others, but I don't expect the others to be different.
We're sorry to hear that you're experiencing challenges with anastrazole (brand name: Arimidex). It's essential to communicate openly with your healthcare team about your concerns. You may want to discuss the possibility of changing from one aromatase inhibitor to another with your medical team. Research suggests that switching to a different aromatase inhibitor may significantly improve symptoms. And if it doesn't, make sure you let your medical providers know that. Remember, your health and well-being are the top priorities.
This was a very informative video. I am experiencing ALL of the AI drug side effects and I've tried them all. I've also sought many different types of relief from the AI side effects and I am sorry to say that there is not much to reccomend. I am envious of women who simply decide not to take the AI drugs by weighing the possible side effects of AI drugs versus the risks of not taking the drugs. For some women the benefit is negligible. For myself and others, the benefit exceeds the risk, and we suffer the side effects rather than accept the risk of recurring BC. For me, I had an aggressive ER+ cancer and the benefit of taking AI over the next 10 years is more than a 30% reduction if chance of recurrence. AI drugs have stolen my life/energy/ability to manage inflamation and I WISH I could accept the risk and simply decide not to take the AI drugs, but I'm taking it day to day and trying to stick it out as long as I can. So, please decide for yourself based on your own benefit to risk ratio and listen only to your doctors - don't let anyone make it seem like this should be an easy decision for you.
We appreciate you sharing your experience with AI side effects. It's clear that the decision to take these medications is complex and deeply personal, weighing the potential benefits against the challenging side effects. It would be worth talking with your team to see if tamoxifen may be an alternative. For most people, tamoxifen, if there are no contraindications, is better tolerated. Your perspective highlights the importance of individualized decisions based on the unique benefit-to-risk ratio for each person. Thank you for watching.
Everything that you were saying is happening to me. I had a hysterectomy in 2000. At hot flashes for one year and they never came back. I feel worse on this medication letrozole. I just have to bear with it. I really don't want to take any more medication. Thank you for all of your informative videos they have helped me
So happy to have been helpful. Sometimes taking the medication at a different time of day can help although there isn't a medical explanation why that might be the case.
@@donnadallariva8377I have been on letrozole for almost 10 months. Fatigue, bone pain, my hair has become much thinner. I would like to give a try with anastrozole. Do you think Arimidex is better than the generic drug? Thanks
Breast cancer can have that effect on people. The loss of a breast or both breasts, being propelled into menopause, and other losses, like hair loss, can be so hard for people.
Thanks for coming here to share your thoughts. Check out our video on what to do if you want to stop endocrine therapy here: ua-cam.com/video/2pWxVu3g91U/v-deo.html.
I have been taking Letrozole 2.5mg once per day for 6 months and this morning, I accidentally took double dose of it. Do I need to skip the dosage in the next day? Will it cause harm to my body by taking double dosage? Appreciate your response.
In general it would not be harmful to take a double dose of an aromatase inhibitor. It's okay to skip a day in this situation, but there would be little harm to just staying on it. As always, check with your medical team for advice specific to you.
I am diagnostic with sec stage ca breast In last may .i went through surgery chemo radio now on hormonal ( tomoxifen). Now I became hypertensive and I am having suddenly pain in my throat and between scapular region over vertebra's. After chemo my doctor only did my chest x rày and usG of whole abdomen .the findingi was normal
Depending on the side effects, exercise and stretching can help (aches and pains). There are medications that can help with hot flashes, but many people do not want to be on another medication to manage the side effects of the first one. Let us know which side effects are being experienced.
@yerbba Thank you. I am a nor.ally very active individual yet am having a hard time some days. I have neropothy from about my knees down, and some days are worse than others. The fatigue, joint pain, neuropothy, and body aches are my main concerns right now. I will be going to PT for cording, which I am hoping will help with some improved movement abilities. I expierence bone pain with the lupron shot. I have found some relief with Doterras' deep blue rub for that. Highly recommended for others experiencing bone pain.
The aromatase inhibitors can be associated with an increase in blood pressure. It would be uncommon for fatigue to set in immediately because the medication should not have peaks and valleys once someone has been on it for a while. Some people find that changing the time of day they take the medication can help with their side effects.
I've developed severely painful trigger thumbs in the year since starting Anastrozole 2/22. I've tried acupuncture, BEMER, other strategies to take care of them but as of now, June 2023, none have worked for relief. I have no other issue to look to than Anastrazole, but is that realistic?
Yes, this is an uncommon but documented side effect of the aromatase inhibitors. We wish you were getting more relief. Perhaps it helps to know what it's most likely caused by.
After surgery, doctors found out I’m in fact stage 3, not stage 1. Now they suggested to take out implants, put in expanders 😡 to have radiation, chemo, hormone therapy & reconstruction. I refused two more surgeries, 4 mos chemo, 2 wks radiation, I said, OK, I could try hormone. But after I found out all the side affects, my body yelled:”No!” I have osteopenia, high cholesterol, my joints & muscle pains stopped me from dancing, tennis & golf before, a life without exercise is not enjoyable! My PET/CT scan, all tumor markers come clear!! I always have positive attitudes, excellent diet, regular exercise, but not so good genes 😂! I’d like to omit hormone therapy, please give me your valuable opinions! ❤️🙏❤️
Thanks for sharing your experience. Most people tolerate the Ais without difficulty. Stopping treatment is an option as long as you have heard about alternatives and have high quality information support about the risk of recurrence and other treatments available. Wishing you the best.
@@itscrazylife9453 I am not taking that as it makes me swell up bleed bright red daily and involuntary muscle contractions six times hour after hour wake up in pains miserable can hardly walk and urinate crystals And more joints ache my pubic area abdomen all swollen worse than when years ago I was 7 months pregnant I already have osteoporosis and went blind and had surgery both eyes I paid for surgery Part B paid $38 dollars I paid rest thousands I am out of money for any more doctors tests or specialists which I pay $225 and $156 part b per month So I have not the money for more doctors and only get told keep taking this my body will get use to it No my body did not get use to it and I quit that poison
Unless there's an interaction with medications for ulcerative colitis, having ulcerative colitis alone is not a contraindication (reason not to take) to aromatase inhibitors.
I think you are referring to one of the so-called liver tests we often check (AST, ALT, Alk Phos). It is possible that the tests can be abnormal in people on letrozole or other aromatase inhibitors. It's important to have your medical team check for other explanations for the abnormality.
@@yerbba Thank you! ❤️ They are repeating my labs in a few weeks. After my post, I received a call from the oncology pharmacist with a possible alternative to the Letrozole pending the new labs.
Thanks for the question. There are no published studies of loratidine (Claritin) in the treatment of arthralgias (joint pain) from the aromatase inhibitors. There was a very small study in 2020 showing some interesting results in people with these symptoms from paclitaxel, but the fact that there's been nothing since makes it likely that any additional studies were not positive.
Dear doctor, I just want to understand how can the body of menopausal women survive without estrogen? the solution is maybe eating estrogen rich foods to make up for the loss. This makes Tamaxofen 10 mg or lower better.
Such a good question. Menopausal people can indeed survive without estrogen for a period of time. We have studies of thousands and thousands of women showing this. The impact of low estrogen on the body is not trivial! But in most people, the benefits outweigh the reversible effects of the lowered estrogen.
Thanks for another great video! ❤ I had read that Aromatase Inhibitors can stop working at some point as the body can develop a resistance and potentially lead to a recurrence. Is there any truth to this? I am taking Letrazole which is an Aromatase Inhibitor and I have found that by increasing my vitamin D to 5000 iu has significantly decreased my joint pain.
Thanks for sharing your story and experience. Despite all of our best treatments, some people do have a recurrence of their cancer. In advanced disease, endocrine therapy will eventually stop working although it can work for many years.
@@yerbba Thanks for your reply. I am early stage and chose to take the most aggressive approach by having a double mastectomy and chemo and because I had 2 out of 9 lymph nodes positive, I chose to go ahead and do radiation. My Pet-scan was negative before and after chemo. Hoping for many more years! ❤️💪🤞
Tamoxifen is a highly effective medication. Having a hysterectomy obviously decreases the risk of endometrial cancer, which is very low but important to many people. If someone does not tolerate the aromatase inhibitors, tamoxifen is a very reasonable option.
I have been on Anastrozole for about 2 months. It seems that I sweat so much more now than before taking this medication, especially when I’m involved in physical activity. Could this be an AI side effect? I also have night sweats occasionally.
I haven't started yet but the one side effect that scares me is shortness of breath. Have you experienced that? Happy you are able to manage the other side effects.
I had Her2+ive breast cancer, completed TCH chemo, had surgery, a month of radiation, and 14 rounds (9 months) of TDM1 or Kadcyla. A trace of ER positive 2% was found at the time of surgery and Letrozole was advised which come with awful bone pain, similar to both chemo treatments and making life miserable as.... do you have any helpful advice please!!!!!!! Feel like a decrepit 129y/o and it's no fun 😢
Thank you for sharing your experience. We're sorry to hear about the awful bone pain you're experiencing from letrozole. Many people find that exercise, such as walking or swimming, can help alleviate joint pain. Over-the-counter pain relievers or prescription medications might also provide relief. It is also possible that, because of the very low level of ER, your benefit may be quite low. This is something you can ask your doctor about. The benefit:quality of life ratio may not be favorable in your case.
I’ve been on Letrozole for over a year, the hot flashes and night sweats are overwhelming and I’m loosing sleep. Depression and anxiety has hit me hard. So my primary doctor put me on an antidepressant and my hot flashes have diminished. But what I want to know has the antidepressant lessened the Letrozole effectiveness?
I had to get off of Letrozole because of the side effects. I am now on Exemestane and the menopause symptoms and sleep have improved - still have trigger toes, legs and fingers - but for me - they have gotten milder - more tolerable. Good luck!
why aren't they taking into consideration the thyroid hypothyroidism is so common in women very few men but it's a disease in men as well breast cancer very common in women very few men get it but they get it as well the reason why most women in America have this problem with AI is probably because it got thyroid disease and of course the pharmaceutical industry doesn't consider this comorbidity at all in their trials the mere fact that the only people that look at the results and can take those results to the public are the pharmaceutical Industries which this protocol is the only one that's here in the US anywhere else outside the US you don't see that they don't even allow you to put commercials regarding any drugs on TV they don't allow endocrine disruptors in their Waters or food or personal care products facial
You are bringing up several different points. The first is a possible connection between thyroid disease and breast cancer. While hypothyroidism and breast cancer are more common in women, there is not a clear mechanism that would make this association anything other than random. There are other reasons that thyroid disease is more common in women, including the hormonal environment and autoimmune disease. For our other viewers, it is not true that most women in America have side effects because they have thyroid disease. People who are "euthyroid" (completely normal thyroid function) are at risk for all of these side effects. You also make a point about how trials are conducted. In the earliest testing of any new drug, all possible adverse effects are extensively studied and documented. The standards in the US are substantially more stringent than in other countries. It is a much longer and more burdensome process to get drugs approved and into the marketplace in the US than in other countries. In some ways this is good, and in other ways, it blocks introduction of some new drugs. We hope this is helpful for you. In terms of environmental exposures, the US has a mixed record. Deregulation of industry is a major threat to environmental protections and environmental justice. It's important to know that countries with fewer resources have more environmental toxins released into the air and water. Preserving federal oversight of industry should be a key priority for people who vote.
Thanks for the question. Without knowing more about the person and the tumor, it is hard to say whether chemotherapy would be part of someone's treatment plan.
Hi. Thanks for your response. We had conducted the oncotyoe dx test on both her tumours one was T2 and other was T1. The oncotype test result for T2 came to 15 whereas the oncotype result for T1 has come to 28. So will chemotherapy be required ?
Thanks for sharing your story. It is not unheard of that your cancer would already be in the bones although this is not common. It is likely that the cells in your bones were already there when you were first diagnosed. It is important to have a biopsy of the bone to make sure that this is indeed cancer.
@@yerbba hi thank you so much for noticed my comment also the rply.. my doctor oncologist did not asked me to go on biopsy of the bone i am using letrozole more then 6 months.
@@tadzmahalidjiraie314 I found it’s necessary to be assertive with doctors. “I want a biopsy of my bones!” My doctors diagnosed my node negative first, while I could have been more assertive, “I want a biopsy!” Then, after mastectomy and 18 nodes removed, it proved they were wrong! Now, they suggested two more surgeries to fix their mistake! It’s a lot of pain to go through two more surgeries! Sending you love and healing power! ❤️
Would you say whether weight gain is a known side effect of aromatase inhibitors? I have been on anastrozole for 18 months now (42 months to go) for ER/PR pos Her2 neg papillary breast carcinoma stage IA (at age 64, 8 years postmenopausal, had the lumpectomy 8/2021 and the radiation 10/2021 and started anastrozole 12/2021). I am fortunately having few overt side effects (no joint pain but I am concerned about what it is doing to my bones). What I did notice is that I gained an immediate 10 lbs within 3 months of starting it and I got mad and went on a calorie deficit a year ago, and am now 20 lbs lighter (that 10 lb weight gain is now gone, plus a further 10 of the 20 lbs I gained at menopause, leaving me 10 lbs to go to get back to pre-menopausal weight). I suspect the anastrozole since I changed nothing else, no new meds or new deleterious eating habits. I have a suspicion that anastrozole is behaving on my metabolism the way PCOS might behave on a younger woman's metabolism. I plan to finish my course since the surgical pathology showed my breast is chock-full of DCIS and I suspect my uninvolved other breast is, too. But I did wonder whether the weight gain could have been induced by the anastrozole and I am adhering to portion control and a mild calorie deficit because I don't want to have weight pile on from the medication alone.
The data on weight gain in the studies done on the AIs are mixed. I do think, from my experience, that weight gain is a side effect for some people on the AIs. Thanks for the question and for sharing your experience.
Prayers for you I pray you are healed and you get much better follow up care than I did They do not know when DCSI will spread So they did not want to cut it out of me Biopsy said DCSI and LCSI but I was told no cancer on phone by doctor and technician I did not know I had carcinoma but when they did the biopsy I wanted the huge jagged tumor cut out and they refused So I had DCSI LCSI in me for six years and did not know until It grew and spread And it was growing where they stuck this clip coil thing and I felt it and called and called They said no worry just scar tissue Well it was grade 3 cancer and getting bigger Then the Covid crap was going on and I was locked out to even get to the window where my women’s doctor is And when I called and called the nurse would say I could not have an appointment and my doctor retired did not know new doctor name Can not get into building with out an appointment She asked me if my nipple was dripping blood I said no and she would say I do not have cancer I had no where else to go Finally went To ER they said looked like stage five because my tumor was so large looking and my skin was split open from it But my nipple not dripping any thing and not inverted So crazy nurse did not give me an appointment with my Primary care gyn so I could get an ultrasound a biopsy and a surgeon and surgery I always had to go through this inept nurse and she delayed my surgery and treatments over 8 weeks total with her inept mistakes and after my ultrasound biopsy she called me for once and said I had no cancer But she was wrong and I did have cancer She did not wait for the test results to come all the way back in She tried to kill me more than once I am not trusting these people and not taking their poison pills or anything that I am ending going to ER miles away in wheel chair or bed all time and in tears almost everyday in pains Please make certain you self check your body for suspicious lumps And read and check your own records and what they really mean I am praying for you to be healed 🙏🏽
@@cbprincess5 My heart goes out to you for this terrible experience. I had my breast cancer diagnoses during COVID and was seen and treated and we all were masked. I am aware that DCIS (ductal carcinoma in situ) is a pre-cancerous condition that could morph into cancer and I am getting frequent check ups. So far no recurrence on Anastrozole but Anastrozole is also thinning my bones at a startling rate and I am going to have to make a decision which is the best of two bad choices - going off Anastrozole and raising my breast cancer recurrence risk or staying on Anastrozole and having my established osteoporosis worsen, raising my fracture risk. So far my insurance would not cover bilateral mastectomy as a preventive procedure.
Thank you for watching and sharing your experience. While doctors always enjoy seeing their patients, what they really want is for their patients to thrive.
Great point. Every day that someone lives with side effects is important. This is one of the reasons we do not recommend the aromatase inhibitors for more than five years. Even that is a long time. Balancing the risks and benefits is key. Make sure you understand the benefits in your individual case.
Hi i am using a letzole and ribociclib for my breast cancer but there is a lot of side effect my skin is become darker i feel itchy in my legs also eye dry.. it is normal?
Thanks for sharing your experiences. Your side effects are expected although not universal. Your medical team will be able to recommend some strategies to help with these side effects.
the only difference is is that when you have thyroid disease Hashimoto's thyroiditis hypo or hyper menopause you go through it so smoothly the transition but the bone loss and the estrogen levels all right really tested while you have your thyroid disease but I could tell you one thing the loss of the hair on the head the fat game from not eating the weight you lose from eating the mood changes like bipolarism which has led women back in the day institutions unnecessarily and now they're finding out and it's evidence to so much so this has got to be taken into consideration I see a lot of research on it I wish you deep dive into this because the pharmaceutical industry doesn't take this into consideration which it should take it into consideration extremely because comorbidities have everything to do and I don't allow it into their control or whatever the heck type of clinical trials they do and we need to take the pharmaceutical industry out of the equation when it comes to results reading them and dictating the correct results that patience can interpret that's most important
You're correct that many people with comorbid conditions that are life threatening are generally not participants in clinical trials. People with thyroid disease are not excluded from clinical trials and outcomes such as thyroid disease are included in all clinical trials. For example, immunotherapy is known to cause inflammation of the thyroid in some people, so close monitoring (even closer than in people not on treatment) is always done.
Heart problems from radiation therapy are rare with current radiation therapy techniques. The cardiovascular side effects of the aromatase inhibitors are due to the fact that the aromatase inhibitors lower estrogen to levels even lower than menopause itself. Management of blood pressure and cholesterol will reduce those risks, and after the treatment course of the aromatase inhibitor is done, cholesterol levels will return to the levels they would have been at that age without the aromatse inhibitor.
Thank you for your comment. We included the most common side effects of aromatase inhibitors. If there's a specific side effect that we did not mention, please feel free to drop a comment below.
Hi Robin, I have stage 3, 3 affected lymph nodes Her2 + breast cancer. I have had surgery ,( lumpectomy ) 41/2 weeks radiation and a year's worth of Chemo. In my opinion many professional s in the Oncology field are cautioned not to overly frighten cancer patients. My so called patient advocate would out right lie about things. She claimed she never heard of Chemo brain ( well documented and a fact ) often cancer centers will segregate patients. Keeping advanced cancer patients away from newly diagnosed ones. Recently they tried putting me on Anastrozole. I asked about the drugs side effects. Was told most just have a little stiffness in their hands. Another big lie as it has horrific side effects. I understand we're all different for some the effects are mild and easily tolerated. For others it can be life threatening. I feel lies are told to prevent panic and hysteria. Which some people are prone too. Robin, you are your own best advocate. The research is for you to do. The decision on what treatments to take are yours to measure and consider. It's your body! But be forewarned not all are honest and forthcoming. Best wishes to you as you make this difficult journey.
In our experience, this is a disturbing side effect seen in 5 to 10% of people. This means that 90 to 95% of people do not. When it happens, however, it is really upsetting to people!
I'd like to say as a breast cancer patient. As well as a subscriber to this channel. I appreciate the honesty and information being given. My biggest beef is the overwhelming practice of being underinformed on not only medication side effects but your experience when undergoing a procedure. As well. My case manager claimed to know nothing about Chemo brain. Denied it was even a thing. When your routinely treated this way. You can lose faith and trust in your medical team. Which leaves you to question everything adviced. It seems they have their protocol to follow and do not consider it worth their while to admit the truth.
So let me thank you for the honesty and integrity shown / given to people here.
Thank you so much for writing and sharing your experience. It can be so hard to be told that something you're experiencing is not happening. Wishing you the best.
Oh the lies told to cancer patients! I was a hospice RN for 18 years. All of my breast cancer patients were dumped on our team with bald heads? Why? Because they were given those chemo treatments even though they knew they would not work! Huge money to be made! I am Stage lll breast cancer and I am in charge of my care. My oncologist was irked but now after 4 years, he is kind to me. I refused chemo but did 27 radiation burns. Hurt lungs and heart. On anastrozole 4 years. I hate the side effects. Fatigue is awful. To get 26% chance to live longer may not be worth it??
@@susiepingleton3614 Susie, I stepped back just aghast that you refused Chemo therapy. Especially being that your also a nurse. Can I please ask you why? Do you think it's ineffective. Or do you have that kind of cancer that Chemo doesn't work for?
I'm with you on we have some difficult decisions to make on our treatment options. It's like gambling and betting when you look at the pie charts and graphs as nothing is guaranteed to you and we consider all those %. Before finding this lump in my breast. I was in pursuit of a double hip replacement. That condition has worsen so bad I'm in a wheelchair. So after going through everything that was suggested. I get to the end and foolishly think. That's it I'm done with cancer treatment. To learn that it's not over as your told you need to go on a Aromatase inhibitors. With all it's Chemo like side effects. So far I:m holding off on starting that as I'm waiting on my hip surgery. I so desperately need to get my mobility back. A quality of life decision. So I'm with you are those side effects worth it for that % of preventing recurrence?
Susie I sure would appreciate your opinion on some of these controversial cancer treatments. As I'm my own advocate ( widow) . Investigate and educate myself. Thank-you! Look forward to learning all I can.
An oncologist that I fired dodged my question about chemo brain. At least the second oncologist admitted it was real. I already had memory damage due to another medical issue. Worse after stopping hormone replacement and chemo therapy. Thank God i am retired because I could never have performed my previous job.
@@lindajones4849 Linda I'm matriarch of a family that has ADHD. I do struggle hard to overcome my deficits. ( My math skills and sense of direction are really poor ) . Now I've noticed words just escape me. It drives me crazy as I've always had above average reading comprehension. & Lexicon of words.
Read where this one lady outright refused hormonal / endocrine therapies. She's a college professor and could not afford a loss to her cognitive skills. Who out there can say they can afford to have her brains scrambled? Denying or avoiding this conversation is just not fair. We need to insist on a better therapy that doesn't have so many devastating side effects. As I'm betting the number of women not taking Tomoxifen or Anastrzal be a lot higher then what's reported.
I have been on Metrazol for nearly a year now. It has been a relief to know that the side effects I’m experiencing are normal. It is also good to hear that it’s possible to take a break and try some of the others. I have learned that the more active I am, the less joint pain I have. It is hard to feel so old. I know it’s worth it but the side effects are real. I also was told my cholesterol is a little on the high side and it’s good to know that that again is the lectures all, and can be cataracted with exercise and more fiber. Learned a lot thank you so much.
Thanks for the feedback. Your sharing your experience with others here really helps people out.
Thank you for your wonderful informative videos. After 3 years of a combination of first tamoxifen followed by Anastrozole I can say the worst side effect that has caused me the most grief is the sexual dysfunction and severe vaginal dryness. All the rest I can handle but I was 47 at diagnosis with a husband and this effect has been devastating. I have shed more tears over this than the loss of my breasts and the chemo, radiation and fear of metastasis.
All other side effects sound much worse than the reality is and I will continue to take AI’s no matter what as I have children who need me.
Thank you for sharing your experience. Loss of sexuality is yet one more thing to grieve. We're going to be making a video on sexual health during and after breast cancer treatment, so keep coming back.
Vaginal estrogen!
Doctors are very willing to prescribe these drugs with horrible, life ruining side effects, but ask them to prescribe ambien so you can get some sleep or percocet for pain relief and they tell you they are too worried about potential risks. Does that sound like they really care about our quality of life?!? If women are on these drugs and ask for help - give them help, not lip service.
Thanks for writing. We agree that starting another pill or pills to treat the side effects of hormonal therapy is not ideal! Sometimes we don't know how bad someone's side effects are being patients are hesitant to report them. They want to be "good" patients. But we can't work on improving quality of life if we don't know just how bad you feel.
Sadly the DEA has started to practice medicine without a license and has scared med docs into NOT prescribing and taking care of their patients, i.e pain goes ignored ----GOD FORBID we (docs cowering from the dea and not fighting for patients in patin) allow you to have PERCOCET and some PAIN RELIEF, sleepless nights oh well docs say nap during the day, and anxiety god forbid you go on benzodiazepines which would be helpful and yes you have to keep taking it JUST LIKE THE DAMN AROMATASE INHIBITORS to work, so thanks DEA for f' ing up medical and treatment everywhere and making doctors stupid about actually taking care of patients. I see it every day as a healthcare professional -- yet women are expected to just SUCK IT UP and SUFFER because docs won't stand up to the DEA and fold like a wet diaper and THAT is not practicing medicine nor taking care of patients.
____ not to get political but maybe we need to stop with the ED meds now over the counter, yeah if men have a problem with their quality of life the DEA will not interfere because they are in need of that ED med -- the war on women is beyond belief. (the crossed out areas should actually be highlighted so just wanted to be clear on that)
My oncologist said “ ike what” as side effects, she must know the side effects, otherwise get back to University
Your videos are so helpful without being confutation. I am starting my breast cancer journey but like to be informed. I have had my first interview. I am one of the lucky ones with small size and early detection with only a large cyst as the problem. I have followed your videos and feel fully informed many thanks
Thank you for watching. Yerbba is so happy that you find our videos informative and helpful. We are rooting for you!
You are so relaxing to listen to Jennifer.
Thanks for watching!
Thank you so much. This was very helpful information.
Thank you for watching! We're glad you found this video helpful.
All We’re doing is exchanging one set of problems for another and then to offset these problems with taking these aromatase inhibitors. They want you to take a bunch of other pills one for depression one for osteoporosis one so you can sleep really
It is so hard to feel like a walking pharmacy! Understanding the benefits of a treatment can help you decide if taking a medication is worthwhile. It would make sense to find out what the benefit of the aromatase inhibitor would be in your case. For many people, they want to avoid a recurrence and are willing to deal with the side effects. As long as you are making decisions based on high quality information, the choice is obviously yours.
But there are alternitive methods,,
@@lynlawley8903Please tell what are the alternative methods so others can also benefit
More older women die of heart attacks and strokes, and alzhiemers than breast cancer. As I have awful effects from.my aromotase drugs Im only doing them every three days. Recent European study shows similar effects but reduced side effects. Im actually thinking of stopping them altogether as I think others factors are more important to control.than estrogyn.
Hi Im from Hungary! Than you very much your video is very helpful! My mom 74 years old she Her2neg and PrPos and Er positiv! She take Femara,Ibrance and mTOR is slowly starting to take! She suffers a lot from letrozol breast effect!! Lot of legs pain… also take XGeva! Thank you very much your video❤
Thank you for watching and your comment. We at Yerbba are rooting for your mother. We are happy we could be helpful.
Very well explained. Thank you
Thank you for watching! We're glad you found this video helpful.
Im tempted to go ahead and have my bilateral mastectomy, and say screw it to these drugs. I say that because i already have osteoporosis, and serious joint problems. Quality vs quanity.
Thanks for writing. It's important to know that surgery, regardless of how extensive it is, does not reduce the risk of the cancer coming back in other parts of the breast. For that, systemic therapy (for example, chemotherapy, targeted therapy, and endocrine therapy) are needed in many people.
Thank you for all the information. I have severe arthralgia on letrozole and zoladex. Not hot flashes nor night sweats. The diziness has been around for a few months, but I no longer notice it most of the time. Sometimes I wonder if it's being effective since I don't ger all the side effects. Nevertheless I wish I could ease the joint pain. Wouldn't comming out of letrozole for a few weeks and going back to it be a risk for the cancer remission? I'll try to talk about this with my doctor and see if she helps me out with this, but I really appreciate your information too, as I never had been shown any alternatives and it's nice to know there's some more to it. Regards from Portugal.
Thanks for writing. A brief period off of the aromatase inhibitor to see if you can stay on it long term or switch to another aromatase inhibitor is an option. The goal is to help you find a medication you can stay on for the long term.
Hi. I am on the same medication and have the same side effects. The joint pain has been the worst of the side effects.
It has made me feel hopeless for the future. I delayed medication after surgery and am not sure I want to skip ahead 35 years to feel like I'm 90 and miss the best part of my life. I may choose living in the moment and let the chips fall where they may.
It's not uncommon to fear the unknown of course. Some people do just fine on endocrine therapy and don't feel like they're 90. In addition, the symptoms resolve once you're off the medication. One strategy that has helped is to try the medication for 3 months to see how you feel before making a decision. We hope this is helpful.
Why are you not advising women to change their diets? There are plenty of anti-estrogen and cancer fighting foods out there! Instead I am hearing Doctors telling us to take something that may help prevent future cancer, but in the process can damage your skin, heart, bones, digestive systems as well as cause depression and brain fog. I am sorry, but in my opinion, the percentage of protection it gives a cancer patient is not enough when you take all of the damage it does in comparison. I will not be taking these things. I already have some of these issues and there is no way I am going to take something that is going to make these things even worse.
Thanks for your feedback. We have videos regarding healthy diets and lifestyles. Also, many of our videos are focused to provide support to people who are currently undergoing breast cancer and its treatment. The benefit of hormone therapy is to cut the risk of recurrence by 44%, which is pretty good. And we understand you!
100% agree with you, I weighed up my risk and are going with natural alternatives.
WOW I feel the same but we aren't working to find what the main triggers are ,,I have tried ,anastrazole and had sooo many sideeffects that I'm now not doing them,,,no one explains that it's like going into ,,,so many side effects I felt like ide aged 10 15 yrs ,,,,and it was awful so check all avenues
@@busibarbie if you've tried the
Meds you know,,how bad they are,,,,,it's so sad
I’m with you. I refused them too
Thank you for this very thorough explanation of the side effects. It is very upsetting to have to take so many meds as a response to side effects for another med. I understand the greater risk of the return of the cancer. But at some point quality of life needs to be a consideration. I am not on these meds yet. I am still in the midst of treatment, but I’m not looking forward to this medication given all the side effects. Thank you again. I appreciate your honesty.
We couldn't agree with you more. Quality of life is just as important as length of life. Most people are able to tolerate the anti-estrogen therapy. We have a lot of people who've been sharing here that they feel pretty good on these medications. In general, people who don't feel good are more vocal. In other words, those people doing just fine and having few side effects are not very likely to come to comment if that makes sense. You won't know how you'll do til you try.
Very helpful information.
We are glad you found this video helpful. Thanks for watching!
Terrific Video! Thank you for all you are doing!😀
Thank you, Michelle, for watching and your feedback.
Thank you for your educational advice.
Thank you for watching and your comment.
She cant say ,,its crap now can she
I have been on Letrozole for about a year and I’m getting thumb joint pain could this be because of it? I workout daily. Would it be convenient to switch to another one and if so is there another medication that won’t damage the bones?
Fortunately, there's no bone damage, but it sure can feel that way. Yes, the joint points could be from letrozole. Talk with your medical team about alternatives.
OUTSTANDING information as usual ⭐️⭐️⭐️⭐️⭐️
We appreciate the positive feedback! Thank you for being a part of our Yerbba community.
What are your thoughts on DIM and Calcium D Glucarate?
Both of these come from foods. In general, it's better to get micronutrients from food (broccoli, other green veggies) rather than in processed form.
So how long do you have to be in these meditactions for? What happens if you decide to stop them and do other alternatives?
Some people do have to stop the aromatase inhibitors. Check out our video on how to approach wanting to stop: ua-cam.com/video/2pWxVu3g91U/v-deo.html
Question please?(I love this channel and find it helpful.) In order to increase cognitive function whilst taking aromatase inhibitors, would it be beneficial or contraindicated to eat healthy foods high in estrogen? Thank you.
This is a difficult one because in general one would not want to take enough dietary estrogen to increase circulating levels of estrogen--this would "undo" the mechanism of action of the aromatase inhibitors. It is also difficult to consume enough estrogen to get circulating blood levels. The general dogma is to not try to consume enough estrogen to raise blood levels of estrogen. Thank you for watching!
Go listen to Dr David Lee
If Anastrozole has a half-life of 50 hours, why take it everyday? I found a study from a few years back that concluded that taking it every other day might be as effective as taking it every day. Why hasn't this been studied more extensively? Why a "one dose fits all" approach when there are so many variables in BC diagnoses?
Such a good point. The therapeutic index (benefit-to-toxicity ratio) is quite wide with the AIs. On the other hand, the dose ranges have been studied in thousands of patients, and there is not inter-person variation in the way the Ais are metabolized as for many other drugs. We appreciate your asking good questions like this.
I’m pursuing this approach with my UK oncologist but they weren’t receptive to it at all. Their approach is one size fits all! I’m early stage 1/2 & can’t understand why I would need the same dose as someone stages 3/4! No consideration for height, weight, fitness, diet, etc. Doesn’t make any sense to me.
@@seasonsdigital439 Exactly! Also, no allowance for age, and node negativity. It makes NO sense!
That is such a great idea and needs trialing
Well they listen to patients,,going through the absolutely awful side effects,,,
I am about to start letrozole in about four weeks after my radiation and I’m really scared especially now that I hear this post about heart issues blood pressure issues trouble breathing issues. I am absolutely terrified, but I know that I should take this pill verse is not taking it do all women have the side effects. My oncologist said that most women don’t is that true I don’t know what or who to believe anymore
The side effects we covered are not all that common. You'll only know how you feel on the medicine if you try it. If you have side effects that are troubling, switching to a different aromatase inhibitor often helps. We are rooting for you!
I'm 2 weeks into a one-month washout of Arimidex. Can't handle the endless appetite and weight gain. I will try the others, but I don't expect the others to be different.
We're sorry to hear that you're experiencing challenges with anastrazole (brand name: Arimidex). It's essential to communicate openly with your healthcare team about your concerns. You may want to discuss the possibility of changing from one aromatase inhibitor to another with your medical team. Research suggests that switching to a different aromatase inhibitor may significantly improve symptoms. And if it doesn't, make sure you let your medical providers know that. Remember, your health and well-being are the top priorities.
This was a very informative video. I am experiencing ALL of the AI drug side effects and I've tried them all. I've also sought many different types of relief from the AI side effects and I am sorry to say that there is not much to reccomend. I am envious of women who simply decide not to take the AI drugs by weighing the possible side effects of AI drugs versus the risks of not taking the drugs. For some women the benefit is negligible. For myself and others, the benefit exceeds the risk, and we suffer the side effects rather than accept the risk of recurring BC. For me, I had an aggressive ER+ cancer and the benefit of taking AI over the next 10 years is more than a 30% reduction if chance of recurrence. AI drugs have stolen my life/energy/ability to manage inflamation and I WISH I could accept the risk and simply decide not to take the AI drugs, but I'm taking it day to day and trying to stick it out as long as I can. So, please decide for yourself based on your own benefit to risk ratio and listen only to your doctors - don't let anyone make it seem like this should be an easy decision for you.
We appreciate you sharing your experience with AI side effects. It's clear that the decision to take these medications is complex and deeply personal, weighing the potential benefits against the challenging side effects. It would be worth talking with your team to see if tamoxifen may be an alternative. For most people, tamoxifen, if there are no contraindications, is better tolerated. Your perspective highlights the importance of individualized decisions based on the unique benefit-to-risk ratio for each person. Thank you for watching.
How do you find out what your percentage is for reoccurrence if you take this drug or not?
How did you find out this percentage amount?
Everything that you were saying is happening to me. I had a hysterectomy in 2000. At hot flashes for one year and they never came back. I feel worse on this medication letrozole. I just have to bear with it. I really don't want to take any more medication. Thank you for all of your informative videos they have helped me
So happy to have been helpful. Sometimes taking the medication at a different time of day can help although there isn't a medical explanation why that might be the case.
I couldn't tolerate letrazole severe joint pain. So I went on arimidex . Was much more tolerable. Hope this helps
@@donnadallariva8377I have been on letrozole for almost 10 months. Fatigue, bone pain, my hair has become much thinner. I would like to give a try with anastrozole. Do you think Arimidex is better than the generic drug? Thanks
You don't have to bear it, quit taking it
I feel like a man after menopause already I’m hot flashes and I gained weight. I was on Letrozole and it was a nightmare.
Breast cancer can have that effect on people. The loss of a breast or both breasts, being propelled into menopause, and other losses, like hair loss, can be so hard for people.
I just started Letrozole, if I have bad side affects, ill quit taking it.
Thanks for coming here to share your thoughts. Check out our video on what to do if you want to stop endocrine therapy here: ua-cam.com/video/2pWxVu3g91U/v-deo.html.
I have been taking Letrozole 2.5mg once per day for 6 months and this morning, I accidentally took double dose of it. Do I need to skip the dosage in the next day? Will it cause harm to my body by taking double dosage? Appreciate your response.
In general it would not be harmful to take a double dose of an aromatase inhibitor. It's okay to skip a day in this situation, but there would be little harm to just staying on it. As always, check with your medical team for advice specific to you.
I am diagnostic with sec stage ca breast In last may .i went through surgery chemo radio now on hormonal ( tomoxifen). Now I became hypertensive and I am having suddenly pain in my throat and between scapular region over vertebra's. After chemo my doctor only did my chest x rày and usG of whole abdomen .the findingi was normal
Great to hear that the tests were normal. Thanks for writing.
What can you reccomend for side effects from exemestane and / or lupron?
Depending on the side effects, exercise and stretching can help (aches and pains). There are medications that can help with hot flashes, but many people do not want to be on another medication to manage the side effects of the first one. Let us know which side effects are being experienced.
@yerbba Thank you. I am a nor.ally very active individual yet am having a hard time some days. I have neropothy from about my knees down, and some days are worse than others. The fatigue, joint pain, neuropothy, and body aches are my main concerns right now. I will be going to PT for cording, which I am hoping will help with some improved movement abilities. I expierence bone pain with the lupron shot. I have found some relief with Doterras' deep blue rub for that. Highly recommended for others experiencing bone pain.
After taking letrozole-letroz often bp increases and tiredness no energy like before is this because of the medication??? Please suggest
The aromatase inhibitors can be associated with an increase in blood pressure. It would be uncommon for fatigue to set in immediately because the medication should not have peaks and valleys once someone has been on it for a while. Some people find that changing the time of day they take the medication can help with their side effects.
I've developed severely painful trigger thumbs in the year since starting Anastrozole 2/22. I've tried acupuncture, BEMER, other strategies to take care of them but as of now, June 2023, none have worked for relief. I have no other issue to look to than Anastrazole, but is that realistic?
Yes, this is an uncommon but documented side effect of the aromatase inhibitors. We wish you were getting more relief. Perhaps it helps to know what it's most likely caused by.
After surgery, doctors found out I’m in fact stage 3, not stage 1. Now they suggested to take out implants, put in expanders 😡 to have radiation, chemo, hormone therapy & reconstruction. I refused two more surgeries, 4 mos chemo, 2 wks radiation, I said, OK, I could try hormone. But after I found out all the side affects, my body yelled:”No!” I have osteopenia, high cholesterol, my joints & muscle pains stopped me from dancing, tennis & golf before, a life without exercise is not enjoyable! My PET/CT scan, all tumor markers come clear!! I always have positive attitudes, excellent diet, regular exercise, but not so good genes 😂! I’d like to omit hormone therapy, please give me your valuable opinions! ❤️🙏❤️
Most people do not experience what you're describing.Thank you for sharing your experience.
That's not true the side effects ,,are beyond bad
And what is the %of how they help I was told 2_5% help so do good honest help that make,s a difference
I stopped taking that poison ☠️ I feel better much better and I see better
Thanks for sharing your experience. Most people tolerate the Ais without difficulty. Stopping treatment is an option as long as you have heard about alternatives and have high quality information support about the risk of recurrence and other treatments available. Wishing you the best.
Hi have you stopped taking letrozole?
@@itscrazylife9453 I am not taking that as it makes me swell up bleed bright red daily and involuntary muscle contractions six times hour after hour wake up in pains miserable can hardly walk and urinate crystals And more joints ache my pubic area abdomen all swollen worse than when years ago I was 7 months pregnant I already have osteoporosis and went blind and had surgery both eyes I paid for surgery Part B paid $38 dollars I paid rest thousands I am out of money for any more doctors tests or specialists which I pay $225 and $156 part b per month So I have not the money for more doctors and only get told keep taking this my body will get use to it No my body did not get use to it and I quit that poison
If a woman is of age 67 and is having ulcerative colitis..is she safe from taking letrozole.2.5 mg tablet daily for ER PR positive breast cancer ?
Unless there's an interaction with medications for ulcerative colitis, having ulcerative colitis alone is not a contraindication (reason not to take) to aromatase inhibitors.
Can AI’s raise your ALP in a blood test? My ALP is higher since I’ve been on Letrozole.
I think you are referring to one of the so-called liver tests we often check (AST, ALT, Alk Phos). It is possible that the tests can be abnormal in people on letrozole or other aromatase inhibitors. It's important to have your medical team check for other explanations for the abnormality.
@@yerbba
Thank you! ❤️ They are repeating my labs in a few weeks. After my post, I received a call from the oncology pharmacist with a possible alternative to the Letrozole pending the new labs.
@@amya9597 please could you tell us what you're being offered, as I'm also in that position,,and need to know what else is out their , .
There for an alternative many thanks n hugs sent
Some women taking AIs said Claritin helped with the joint and muscle pains. Is this something you could address?
Thanks for the question. There are no published studies of loratidine (Claritin) in the treatment of arthralgias (joint pain) from the aromatase inhibitors. There was a very small study in 2020 showing some interesting results in people with these symptoms from paclitaxel, but the fact that there's been nothing since makes it likely that any additional studies were not positive.
Dear doctor, I just want to understand how can the body of menopausal women survive without estrogen? the solution is maybe eating estrogen rich foods to make up for the loss. This makes Tamaxofen 10 mg or lower better.
Such a good question. Menopausal people can indeed survive without estrogen for a period of time. We have studies of thousands and thousands of women showing this. The impact of low estrogen on the body is not trivial! But in most people, the benefits outweigh the reversible effects of the lowered estrogen.
So what could be the cancer trigger
Thanks for another great video! ❤ I had read that Aromatase Inhibitors can stop working at some point as the body can develop a resistance and potentially lead to a recurrence. Is there any truth to this? I am taking Letrazole which is an Aromatase Inhibitor and I have found that by increasing my vitamin D to 5000 iu has significantly decreased my joint pain.
Thanks for sharing your story and experience. Despite all of our best treatments, some people do have a recurrence of their cancer. In advanced disease, endocrine therapy will eventually stop working although it can work for many years.
@@yerbba
Thanks for your reply. I am early stage and chose to take the most aggressive approach by having a double mastectomy and chemo and because I had 2 out of 9 lymph nodes positive, I chose to go ahead and do radiation. My Pet-scan was negative before and after chemo. Hoping for many more years! ❤️💪🤞
Wishing you the best, and thanks for the follow up.
@@yerbba
Thank you! I appreciate your sentiments.❤️
Can a person continue with tamoxifen after surgery instead of aromatise inhibitors, after surgical menopause, total hescetomy???
Tamoxifen is a highly effective medication. Having a hysterectomy obviously decreases the risk of endometrial cancer, which is very low but important to many people. If someone does not tolerate the aromatase inhibitors, tamoxifen is a very reasonable option.
I have been on Anastrozole for about 2 months. It seems that I sweat so much more now than before taking this medication, especially when I’m involved in physical activity. Could this be an AI side effect? I also have night sweats occasionally.
It is possible that you're noticing a side effect of the AI, yes.
@debtreat Are you still on it? How is it going?
Yes, I am still on Anastrozole, for about 4.5 more years. The side effects are the same but certainly tolerable. Thanks for asking.
I haven't started yet but the one side effect that scares me is shortness of breath. Have you experienced that? Happy you are able to manage the other side effects.
@@LA-do2zf I have not experienced shortness of breath. Hopefully, you won’t either.
I had Her2+ive breast cancer, completed TCH chemo, had surgery, a month of radiation, and 14 rounds (9 months) of TDM1 or Kadcyla. A trace of ER positive 2% was found at the time of surgery and Letrozole was advised which come with awful bone pain, similar to both chemo treatments and making life miserable as.... do you have any helpful advice please!!!!!!!
Feel like a decrepit 129y/o and it's no fun 😢
Thank you for sharing your experience. We're sorry to hear about the awful bone pain you're experiencing from letrozole. Many people find that exercise, such as walking or swimming, can help alleviate joint pain. Over-the-counter pain relievers or prescription medications might also provide relief. It is also possible that, because of the very low level of ER, your benefit may be quite low. This is something you can ask your doctor about. The benefit:quality of life ratio may not be favorable in your case.
I’ve been on Letrozole for over a year, the hot flashes and night sweats are overwhelming and I’m loosing sleep. Depression and anxiety has hit me hard. So my primary doctor put me on an antidepressant and my hot flashes have diminished. But what I want to know has the antidepressant lessened the Letrozole effectiveness?
Some antidepressants may theoretically decrease the effectiveness of the aromatase inhibitors. This would be worth talking about with your pharmacist.
😔
I had to get off of Letrozole because of the side effects. I am now on Exemestane and the menopause symptoms and sleep have improved - still have trigger toes, legs and fingers - but for me - they have gotten milder - more tolerable. Good luck!
why aren't they taking into consideration the thyroid hypothyroidism is so common in women very few men but it's a disease in men as well breast cancer very common in women very few men get it but they get it as well
the reason why most women in America have this problem with AI is probably because it got thyroid disease and of course the pharmaceutical industry doesn't consider this comorbidity at all in their trials the mere fact that the only people that look at the results and can take those results to the public are the pharmaceutical Industries which this protocol is the only one that's here in the US anywhere else outside the US you don't see that they don't even allow you to put commercials regarding any drugs on TV they don't allow endocrine disruptors in their Waters or food or personal care products
facial
You are bringing up several different points. The first is a possible connection between thyroid disease and breast cancer. While hypothyroidism and breast cancer are more common in women, there is not a clear mechanism that would make this association anything other than random. There are other reasons that thyroid disease is more common in women, including the hormonal environment and autoimmune disease.
For our other viewers, it is not true that most women in America have side effects because they have thyroid disease. People who are "euthyroid" (completely normal thyroid function) are at risk for all of these side effects.
You also make a point about how trials are conducted. In the earliest testing of any new drug, all possible adverse effects are extensively studied and documented. The standards in the US are substantially more stringent than in other countries. It is a much longer and more burdensome process to get drugs approved and into the marketplace in the US than in other countries. In some ways this is good, and in other ways, it blocks introduction of some new drugs. We hope this is helpful for you.
In terms of environmental exposures, the US has a mixed record. Deregulation of industry is a major threat to environmental protections and environmental justice. It's important to know that countries with fewer resources have more environmental toxins released into the air and water. Preserving federal oversight of industry should be a key priority for people who vote.
Anastrozole makes my legs ache. Oncologist says this is a side effect. Having to take T3 to get through it at night. So I can sleep
This sounds quite difficult. Switching to another aromatase inhibitor (they are equally effective) may help with your symptoms.
I've been offered other ones side also effects pain in joints and also ,toilet problems
@@lynlawley8903 what are the toilet problems? Thank you.
Hi. Can a grade 3 ER PR positive. ER 8/8 and PR 4 /8 and HER2 negative with negative lymph nodes, need to be taken chemotherapy post mastectomy ?
Thanks for the question. Without knowing more about the person and the tumor, it is hard to say whether chemotherapy would be part of someone's treatment plan.
Hi. Thanks for your response. We had conducted the oncotyoe dx test on both her tumours one was T2 and other was T1. The oncotype test result for T2 came to 15 whereas the oncotype result for T1 has come to 28. So will chemotherapy be required ?
I am diagnosed last june breast cancer grade 2 tumor but suddenly spread to my bone
Thanks for sharing your story. It is not unheard of that your cancer would already be in the bones although this is not common. It is likely that the cells in your bones were already there when you were first diagnosed. It is important to have a biopsy of the bone to make sure that this is indeed cancer.
@@yerbba hi thank you so much for noticed my comment also the rply.. my doctor oncologist did not asked me to go on biopsy of the bone i am using letrozole more then 6 months.
Do these drugs also cause weight gain as a side effect
@@tadzmahalidjiraie314 I found it’s necessary to be assertive with doctors. “I want a biopsy of my bones!” My doctors diagnosed my node negative first, while I could have been more assertive, “I want a biopsy!” Then, after mastectomy and 18 nodes removed, it proved they were wrong! Now, they suggested two more surgeries to fix their mistake! It’s a lot of pain to go through two more surgeries! Sending you love and healing power! ❤️
Would you say whether weight gain is a known side effect of aromatase inhibitors? I have been on anastrozole for 18 months now (42 months to go) for ER/PR pos Her2 neg papillary breast carcinoma stage IA (at age 64, 8 years postmenopausal, had the lumpectomy 8/2021 and the radiation 10/2021 and started anastrozole 12/2021). I am fortunately having few overt side effects (no joint pain but I am concerned about what it is doing to my bones). What I did notice is that I gained an immediate 10 lbs within 3 months of starting it and I got mad and went on a calorie deficit a year ago, and am now 20 lbs lighter (that 10 lb weight gain is now gone, plus a further 10 of the 20 lbs I gained at menopause, leaving me 10 lbs to go to get back to pre-menopausal weight). I suspect the anastrozole since I changed nothing else, no new meds or new deleterious eating habits. I have a suspicion that anastrozole is behaving on my metabolism the way PCOS might behave on a younger woman's metabolism. I plan to finish my course since the surgical pathology showed my breast is chock-full of DCIS and I suspect my uninvolved other breast is, too. But I did wonder whether the weight gain could have been induced by the anastrozole and I am adhering to portion control and a mild calorie deficit because I don't want to have weight pile on from the medication alone.
The data on weight gain in the studies done on the AIs are mixed. I do think, from my experience, that weight gain is a side effect for some people on the AIs. Thanks for the question and for sharing your experience.
Prayers for you I pray you are healed and you get much better follow up care than I did They do not know when DCSI will spread So they did not want to cut it out of me Biopsy said DCSI and LCSI but I was told no cancer on phone by doctor and technician I did not know I had carcinoma but when they did the biopsy I wanted the huge jagged tumor cut out and they refused So I had DCSI LCSI in me for six years and did not know until It grew and spread And it was growing where they stuck this clip coil thing and I felt it and called and called They said no worry just scar tissue Well it was grade 3 cancer and getting bigger Then the Covid crap was going on and I was locked out to even get to the window where my women’s doctor is And when I called and called the nurse would say I could not have an appointment and my doctor retired did not know new doctor name Can not get into building with out an appointment She asked me if my nipple was dripping blood I said no and she would say I do not have cancer I had no where else to go Finally went To ER they said looked like stage five because my tumor was so large looking and my skin was split open from it But my nipple not dripping any thing and not inverted So crazy nurse did not give me an appointment with my Primary care gyn so I could get an ultrasound a biopsy and a surgeon and surgery I always had to go through this inept nurse and she delayed my surgery and treatments over 8 weeks total with her inept mistakes and after my ultrasound biopsy she called me for once and said I had no cancer But she was wrong and I did have cancer She did not wait for the test results to come all the way back in She tried to kill me more than once I am not trusting these people and not taking their poison pills or anything that I am ending going to ER miles away in wheel chair or bed all time and in tears almost everyday in pains Please make certain you self check your body for suspicious lumps And read and check your own records and what they really mean I am praying for you to be healed 🙏🏽
@@cbprincess5 My heart goes out to you for this terrible experience. I had my breast cancer diagnoses during COVID and was seen and treated and we all were masked. I am aware that DCIS (ductal carcinoma in situ) is a pre-cancerous condition that could morph into cancer and I am getting frequent check ups. So far no recurrence on Anastrozole but Anastrozole is also thinning my bones at a startling rate and I am going to have to make a decision which is the best of two bad choices - going off Anastrozole and raising my breast cancer recurrence risk or staying on Anastrozole and having my established osteoporosis worsen, raising my fracture risk. So far my insurance would not cover bilateral mastectomy as a preventive procedure.
K 12:50
My doctor told me to just eat what I want they want you to come back
Thank you for watching and sharing your experience. While doctors always enjoy seeing their patients, what they really want is for their patients to thrive.
‘Mostly reversible’ isn’t so encouraging when I have been told to take these drugs for ten years?
Great point. Every day that someone lives with side effects is important. This is one of the reasons we do not recommend the aromatase inhibitors for more than five years. Even that is a long time. Balancing the risks and benefits is key. Make sure you understand the benefits in your individual case.
Hi i am using a letzole and ribociclib for my breast cancer but there is a lot of side effect my skin is become darker i feel itchy in my legs also eye dry.. it is normal?
Thanks for sharing your experiences. Your side effects are expected although not universal. Your medical team will be able to recommend some strategies to help with these side effects.
@@yerbba i am using moistoriser cream for my face but still darker sometime i feel itchy.. thank you so much for the rply.. god bless
@@yerbba tomorrow is my PT scan.
Yup I stopped
Thank you for watching and your comment.
What are you doing instead?
Did you take letrozole??
are you feeling better now?
the only difference is is that when you have thyroid disease Hashimoto's thyroiditis hypo or hyper menopause you go through it so smoothly the transition but the bone loss and the estrogen levels all right really tested while you have your thyroid disease but I could tell you one thing the loss of the hair on the head the fat game from not eating the weight you lose from eating the mood changes like bipolarism which has led women back in the day institutions unnecessarily and now they're finding out and it's evidence to so much so this has got to be taken into consideration I see a lot of research on it I wish you deep dive into this because the pharmaceutical industry doesn't take this into consideration which it should take it into consideration extremely because comorbidities have everything to do and I don't allow it into their control or whatever the heck type of clinical trials they do and we need to take the pharmaceutical industry out of the equation when it comes to results reading them and dictating the correct results that patience can interpret that's most important
You're correct that many people with comorbid conditions that are life threatening are generally not participants in clinical trials. People with thyroid disease are not excluded from clinical trials and outcomes such as thyroid disease are included in all clinical trials. For example, immunotherapy is known to cause inflammation of the thyroid in some people, so close monitoring (even closer than in people not on treatment) is always done.
What % of people get heart issues? I finish my radiation and am then starting on Anastrozole. I wish I had been told all of this!
Heart problems from radiation therapy are rare with current radiation therapy techniques. The cardiovascular side effects of the aromatase inhibitors are due to the fact that the aromatase inhibitors lower estrogen to levels even lower than menopause itself. Management of blood pressure and cholesterol will reduce those risks, and after the treatment course of the aromatase inhibitor is done, cholesterol levels will return to the levels they would have been at that age without the aromatse inhibitor.
why didn't you include all the side effects
Thank you for your comment. We included the most common side effects of aromatase inhibitors. If there's a specific side effect that we did not mention, please feel free to drop a comment below.
Hi Robin, I have stage 3, 3 affected lymph nodes Her2 + breast cancer. I have had surgery ,( lumpectomy ) 41/2 weeks radiation and a year's worth of Chemo.
In my opinion many professional s in the Oncology field are cautioned not to overly frighten cancer patients. My so called patient advocate would out right lie about things. She claimed she never heard of Chemo brain ( well documented and a fact ) often cancer centers will segregate patients. Keeping advanced cancer patients away from newly diagnosed ones. Recently they tried putting me on Anastrozole. I asked about the drugs side effects. Was told most just have a little stiffness in their hands. Another big lie as it has horrific side effects. I understand we're all different for some the effects are mild and easily tolerated. For others it can be life threatening. I feel lies are told to prevent panic and hysteria. Which some people are prone too.
Robin, you are your own best advocate. The research is for you to do. The decision on what treatments to take are yours to measure and consider. It's your body! But be forewarned not all are honest and forthcoming. Best wishes to you as you make this difficult journey.
I have a sore throat everyday when I wake up. What causes that?
@@yerbba unfortunately my side effects were not common.... downright scary and very possibly life threatening. Murphy's Law...people need to know.
Why can’t they just prescribe birth control
Birth control pills have either estrogen or progesterone and estrogen, which would sort of "undo" the effects of the aromatase inhibitors.
AI's don't know you're non-binary as that is not biological.1:38
Our notions of gender are not well-founded in terms of someone's hormonal milieu, you are right.
I now have a leaky heart valve
Thanks for sharing your story. Valve leaks (regurgitation) can occur after chemotherapy with anthracyclines although it's quite uncommon.
Wrong. Many women grow facial hair
In our experience, this is a disturbing side effect seen in 5 to 10% of people. This means that 90 to 95% of people do not. When it happens, however, it is really upsetting to people!