Aug 21, 2017 10:46PM - edited Aug 21, 2017 10:47PM by Artista928
The few % benefit is not on it's own, assuming your #s are very low for recurrence. On it's own it's much higher. It's 3-4% additional benefit vs Tamoxifen.
All Topics → Forum: Hormonal Therapy - Before, During and After → Topic: Aromatase Inhibitor and just walking away.
Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.
Posted on: Apr 22, 2016 10:06AM
I was premenopausal at diagnosis. 100% ER/PR+. I took 5 years of tamoxifen and just three months ago switched to femara. I don't want to do this anymore. I want to stop taking the drugs and walk away. Have any of you decided to follow a similar path? If so, can you tell me about your decision making process and how you feel about it now?
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Aug 21, 2017 10:46PM - edited Aug 21, 2017 10:47PM by Artista928
The few % benefit is not on it's own, assuming your #s are very low for recurrence. On it's own it's much higher. It's 3-4% additional benefit vs Tamoxifen.
Aug 21, 2017 11:29PM Jojo0529 wrote:
so interesting. I recall reading something about statins reducing breast cancer risk. It must be due to the cholesterol
Aug 21, 2017 11:37PM Brutersmom wrote:
I was told by the MO that my risk is 20% with nothing 16% with Tamoxifen and 12-14% with the Als. When you have no quality of life on the drug. Loss of vision, loss of hearing, anxiety attacks, inability to sleep, (average was 2-3 hours/night), not able to tolerate anything touching my skin, feeling like my insides were shaking, those odds don't seem so bad. And if I continue to lose weight, exercise several times a week, (strengthening and aerobic) and eat a healthy diet the 20% goes back down and my health in general improves. Might not be for everyone but I prefer to live life then exist like I did for 15 months.
What this really says to me is we need better treatment options. To many women are forced to suffer for a relatively small benefit and so many dangerous or debilitating side effects.
Aug 22, 2017 08:08AM dtad wrote:
Brutersmom...I completely agree with you! Most MOs know very little about female hormones so I'm not surprised he was unaware of the benefits of weight loss and exercise lowering recurrence rates. The are all hard decisions but we have to do what feels right. Good luck and keep us posted.
Aug 22, 2017 12:04PM marijen wrote:
Drugs.com has medications reviews - here's a good one. I know everyone is different. But I often wonder if cancer goes to weak or injured areas in our bodies.
"I would give a lot to have NEVER taken Femara! It aged me 20 years in a few months. I took it for more than six years before I told my oncologist I would not take it any more. It was killing me! I was sleeping an average of two hours a night......a "good" night was five hours every ten to fourteen days. The other side effects were awful! Femara did NOT keep the cancer from coming back! It is KNOWN to weaken the bones, and the cancer is now rampant in my bones!"
Aug 22, 2017 01:27PM Hopeful82014 wrote:
You wrote, above, "AS I was check out I has a fun conversation with the staff at the check out. They were curious why 9 months and I told them that I felt I had to stop Als. They asked me if I was just walking away and I told them about my change in nutrition and exercise. They applauded me. They said they see so many women suffering on the drugs. They said that many women suffer for just a 2-6% benefit when if they took charge of their health they could achieve a similar benefit and be healthier."
While I have NO doubt that exercise and excellent nutrition can make a great difference, I find it extraordinarily inappropriate that the reception staff at any MO's office would be commenting on the putative percentage of benefit of ANY treatment decisions, much less a decision to swap exercise and lifestyle changes for an AI.
Most reception staffs are caring, skilled and compassionate women (usually) but I'd never solicit nor accept their advice on treatment decisions over my MO's advice. I'm just shaking my head over their response.
Aug 22, 2017 01:28PM marijen wrote:
That's right BB, well maybe that's why my pain has started up. It's been over a year since last reclast infusion. And got sloppy with the calcium. I'm not big on something made from limestone (Tums). But then I bought a bone strength supplement and gee whiz - the inactive ingredients are worse than the Letrozole. I hope they figure it out one of these days. Then again, there are only two million survivors still suffering (sarcasm).
Aug 22, 2017 02:02PM azb2005 wrote:
Wow I am so grateful for all I've read here this morning. I am new to the forum. I had my BMX on 7/20, with expanders, thinking I was going to do reconstruction. I've decided against that, and staying flat. Awaiting a surgery date. But this is off this particular topic...
My medical oncologist prescribed Anastrozole and I am really struggling with whether or not to take it. I'll be 63 on Sunday, and other than this damn cancer have been a healthy, active person. I don't see the statistics as being so staggeringly different with or without, so I'm seeing my regular MD on Thursday, who is also an Integrative doc...hoping to make some sense out of all of this.
Thank you all....such GREAT information here!
Aug 22, 2017 02:21PM chef127 wrote:
Is there even just one BC Tx (after surgery) that is not a hazard to our well being? I had a lx which showed one dirty margin, the ca was on my skin which automatically put me in stage IIIB and chemo was a given. I REFUSED! so I did the rads (kicking and screaming) to avoid another surgery. I refused rads to the underarm even tho there was a LN infected with ca. Now you want to possibly take away the use of my arm from LE. another serious hazard. F--K ME! When I researched the next option of depleting all my estrogen I was floored. "You want me to do What"? I lied to my MO and made up se's and started with Arimidex to Femera to tamox. Never happened. I swallowed one pill and tossed the rest. ER+96% PR+85%. Sounds like a death wish, but for me all those tx's sounded like death or poor QOL.
It''s been 6 years now NED, this week in fact. Was I over dx'ed?, is the E+P+ not a factor in my case? IDK, researchers and drs don't know. so to be safe we'll put you through hellish tx and hope for the best.
Until they can find a BC tx that does NOT take away our hormones we will continue to suffer the ravages of tx. I empathize with anyone suffering for the 5-10-lifetime of toxic tx. I have no idea why I'm still NED, my weight is good, I smoke, my diet is so-so.....and I avoided most tx. I'M A VERY stupid, bad girl.
Marijen, sorry about your bones, I had no clue. Is it possible the AI's contributed? very curious ??????
Aug 22, 2017 02:28PM marijen wrote:
Thanks chef, we need to hear from brave ones like you. My endocrinologist has refused to do a bone scan from the first six months on Letrozole, so I have no idea now, even though my results were worse nearly two years ago. Next appt is in Nov. I think he must hate women. I think bone scans can be done more often with reason. Anyways, I'm off to the LE Pt now. It's been since May 2016 I have lymphedema. It's slight but painful and annoying! I'm in the middle now. My eyes have started to act up - vitreous detachment and ERM.
Anyways, chef, please keep posting your story.
Aug 22, 2017 03:13PM chef127 wrote:
NO, not brave! Taking these toxic pills without knowing whats really going on with our endo system, that's brave.
Marijen, can the trouble with your eyes be corrected? I am disabled due to a neuro condition. I was fine for years, mopping floors in my kitchen WITH my mostly male employees then BAM menopause hit and my condition kicked my ass. I believe when my Estrogen was low it hit my nervous system and sent my condition in high gear. The worst part by far is the damage done to my optic nerves. Double vision, corrected with prisim (sp) lenses as long as I have my glasses on, and Nystagmus, where my eyes shake and objects I stare at slowly move and I get vertigo. Its like an LSD trip, NO tx available. It's the biggest culprete for my disability. I hope your able to repair your optic nerves. IMHO it is estrogen deprivation?????? But I'm no dr.
Aug 22, 2017 05:39PM marijen wrote:
Here is a study regarding Breast Cancer Medications and the Eyes - unfortunately it's the only study I can find. A friend sent it to me or I never would have known - my eyes have deteriorated since Jan but the opthamologist says they are healthy. I guess it doesn't matter if I can't see as well as six months ago? If someone can find another study, it would be great. I don't think they will believe until it is common knowledge.Breast cancer medications and vision: effects of treatments for early-stage disease. Author information Abstract
This review concerns the effects on vision and the eye of medications prescribed at three phases of treatment for women with early-stage breast cancer (BC): (1) adjuvant cytotoxic chemotherapy, (2) adjuvant endocrine therapy, and (3) symptomatic relief. The most common side effects of cytotoxic chemotherapy are epiphora and ocular surface irritation, which can be caused by any of several different regimens. Most notably, the taxane docetaxel can lead to epiphora by inducing canalicular stenosis. The selective-estrogen-receptor-modulator (SERM) tamoxifen, long the gold-standard adjuvant-endocrine-therapy for women with hormone-receptor-positive BC, increases the risk of posterior subcapsular cataract. Tamoxifen also affects the optic nerve head more often than previously thought, apparently by causing subclinical swelling within the first 2 years of use for women older than ~50 years. Tamoxifen retinopathy is rare, but it can cause foveal cystoid spaces that are revealed with spectral-domain optical coherence tomography (OCT) and that may increase the risk for macular holes. Tamoxifen often alters the perceived color of flashed lights detected via short-wavelength-sensitive (SWS) cone response isolated psychophysically; these altered perceptions may reflect a neural-response sluggishness that becomes evident at ~2 years of use. The aromatase inhibitor (AI) anastrozole affects perception similarly, but in an age-dependent manner suggesting that the change of estrogen activity towards lower levels is more important than the low estrogen activity itself. Based on analysis of OCT retinal thickness data, it is likely that anastrozole increases the tractional force between the vitreous and retina. Consequently, AI users, myopic AI users particularly, might be at increased risk for traction-related vision loss. Because bisphosphonates are sometimes prescribed to redress AI-induced bone loss, clinicians should be aware of their potential to cause scleritis and uveitis occasionally. We conclude by suggesting some avenues for future research into the visual and ocular effects of AIs, particularly as relates to assessment of cognitive function.
Aug 22, 2017 08:15PM Brutersmom wrote:
Hopeful8201 I am not taking their advice and I don't think she would have said anything it I hadn't said something first. I had made my decision before I even saw the MO. I worked in a hospital as support staff many years ago. I was a social worker on an oncology floor. I saw what chemo did to people before they learned that adding steriods and anti nausea drugs would help people tolerate chemo therapy better. One thing I learned from that experience in the hospital, is that often nurses and other support staff have a more real view then many physician. They see and hear the emotions and feeling of patients and families as they struggle through this journey. My coworkers and I spent may hours convincing surgeons to consider a lumpectomy as a possibility for some patients. The hospital policy was still a radical mastectomy. This was many years ago but like the lumpectomy, change needs to happen in the drug world. So many women suffer because on size fits all approach. There is little known if the drug is too much for some and not enough for others and who really needs it. Then if there are side effects. The choices are quit the drug, suck it up and suffer, or take other drugs to combat side effects. My decision was made after a discussion with my Medical Dr. and the surgeon and a previous discussion with my MO. Both the surgeon (who heads up the oncology program) and the Family Dr felt that if I decided to stop the Al's I could get a significantly benefit from a exercise program and diet. The goal being weight loss. I am overweight. I am working with a nutritionist and a meeting with a physical trainer. My diet is a lifestyle change in my eating habits. My work out right now is focus on muscle strengthening/development. Today's check in showed 4 pounds lost in the last 30 days and a reduction in the circumference of my thighs, waist, calf and arms. Yea a little less fat to make estrogen. This is just my opinion and a decision made with the help of my physicians.
OK I am off my soap wagon and back to my corner. I will end with I do think a women should try the drug first. Some will have no or very minimal side effects and some will have serious side effects. I do not think a woman should stay on a medication that is severly affecting her quality of life for the small benefit that these drugs give but it is a personal decision.
Aug 22, 2017 10:45PM - edited Aug 23, 2017 12:33AM by Hopeful82014
Brutersmom - Congratulations on making such solid progress towards your fitness goals. We all know how much hard work & discipline that represents.
I did understand that you had already made your decision about the AI - and I respect that. My concern was absolutely not with nursing staff responding to your situation but rather that reception/scheduling staff were weighing in. Back in the dark ages when I worked in the field that was utterly out of the question and I, personally, would still see it as inappropriate. That was all I was trying to say and obviously I didn't communicate it very well.
Edited to add: I would not argue with anyone about the need for better options beyond tamoxifen and AIs. Unfortunately, I don't see signs of anything in deveopment and, even if a new drug were to be introduced, its cost would likely be so high that few of us could afford it until it went generic. If anyone knows differently, please speak up! I'm doing o.k. on letrozole and am committed to taking it as long as needed but I won't pretend that I wouldn't love to be able to SAFELY walk away from it.
Aug 23, 2017 12:10AM marijen wrote:
Brutersmom, I didn't realize it was just yesterday you told your MO you are stopping. In one of these topics I started a discussion about tappering to ward off a flood of estrogen and emotions. Have you seen it. I did get some flack for it because it came from a body builders website. They use AIs for some reason, partly to do with man boobs. So please let us know how you are feeling day to day with stopping. My pain was reduced in the first two weeks, but I still have a lot. Heard it can take a year for hormones to right themselves if they ever do.
Hopeful I understand what you were saying to Brutersmom about the reception women but I thought it was wonderful they were willing to tell the truth as they knew it. I think we are smart enough to take opinions and experiences for what they are worth but most medical people are afraid to take the chance. If only they were all truthful with us
Aug 23, 2017 07:20AM dtad wrote:
chef27....I think your story proves what a crap shoot recurrence is. They just don't know who will recur or not regardless of treatment or lack of it. This is why we all have to make our own informed decisions. Until the day we have better treatment options I will continue to refuse anti hormone treatment. Good luck to all navigating this complicated disease
Aug 23, 2017 11:54PM - edited Aug 23, 2017 11:57PM by Brutersmom
Marijen I actually stopped Arimidex back in March for 30 days and the tried Femara for about 14 day. I felt better within 24 hours of stopping Arimidex. I started Femara about 30 days later and immediately started feeling bad and in addition developed incredible back pain and a sensation in my skin that let me not wanting to be touched. I could not stand up straight when getting up from chair or out of bed until I walked around for a while. That stopped within 24 hours of stopping Femera. I did not make the final decision to stop until June after talking to the surgeon and MD. It was a difficult choice. I did not go through any type withdraw. I did have a few days of increased night sweats but I also experienced an increase in night sweats when I started loosing weight after I change my diet and started my workout program. They have since pretty much subsided. Prior to stopping the aromatase inhibitors, I started developing tendinitis in my foot, elbow and wrist. They seem to come and go. I have to be very careful with any kind of repetition. My MD thinks it is from lack of hormone and should get better the longer I am off and the more I strengthen the muscles in my body.
Aug 24, 2017 01:08AM marijen wrote:
Sounds good Brutersmom. I too have sore archilles, ankles, knees, elbows, fingers. Bottoms of my feet. It was hard to straighten up out of a chair, and was getting funny pain in my lower arm on the inside. I'm off it now and probably will stay off. I believe the estrogen level just got too low after a couple of years. Thanks
Aug 25, 2017 01:01PM - edited Aug 25, 2017 01:02PM by marijenToxicity of Aromatase Inhibitors May Impact on Survival
August 23, 2011
August 23, 2011 — Aromatase inhibitors have provided an alternative form of adjuvant endocrine treatment for breast cancer and are associated with reduced recurrence rates and improved disease-free survival. But when they are used as an up-front therapy, an overall survival benefit has not been observed.
The results of a new meta-analysis, however, suggest that the toxicities associated with aromatase inhibitors may explain the lack of overall survival improvement as compared with tamoxifen.
The new findings are reported in the Journal of the National Cancer Institute.
Although aromatase inhibitors have been gaining in popularity at the expense of tamoxifen for this indication and are now often used in its place, the results from this study and a previous meta-analysis suggest that switching strategies — in which both types of drugs are used sequentially — is also rational and effective, breast cancer experts comment in an accompanying editorial. "We should not 'ditch the switch,'" they write.
The meta-analysis showed that a longer duration of aromatase inhibitor use was associated with higher odds of developing cardiovascular disease (odds ratio [OR], 1.26; P < .001), as well as bone fractures (OR, 1.47; P < .001). Use of these agents was also associated with decreased odds of venous thrombosis (OR, 0.55; P < .001) and endometrial carcinoma (OR, 0.34; P < .001).
"Of interest, we found a consistent decrease in the risk of death without breast cancer recurrence for those patients treated with a switch from tamoxifen to aromatase inhibitors, compared with those treated with either aromatase inhibitors or tamoxifen alone," said lead author Eitan Amir, MB, ChB, from the Division of Medical Oncology and Hematology at the Princess Margaret Hospital, Toronto, Ontario, Canada.
Aug 25, 2017 01:21PM marijen wrote:
Aromatase Inhibitors and autoimmune system - Sept 2016Author information
Subacute cutaneous lupus erythematosus (SCLE) is characterized by particular cutaneous manifestations such as non-scaring plaques mainly in sunlight exposed parts of the body along with specific serum autoantibodies (i.e. antinuclear antibodies (ANA), Ro/SSa, La/SSb). It is considered either idiopathic or drug induced. The role of chemotherapeutic agents in causing SCLE has been investigated with the taxanes being the most common anticancer agents. However, recent data emerging point toward antiestrogen therapies as a causative factor not only for SCLE but also for a variety of autoimmune disorders. This is a report of a case of a 42 year old woman who developed clinical manifestations of SCLE after letrozole treatment in whom remission of the cutaneous manifestations was noticed upon discontinuation of the drug. In addition, an extensive review of the English literature has been performed regarding the association of antiestrogen therapy with autoimmune disorders. In conclusion, Oncologists should be aware of the potential development of autoimmune reactions in breast cancer patients treated with aromatase inhibitors.KEYWORDS:
Aromatase inhibitors; Arthralgias; Breast cancer; Rheumatoid arthritis; Subacute cutaneous lupus erythematosus; Systemic lupus erythematosus
Aug 25, 2017 03:27PM - edited Aug 25, 2017 03:29PM by chef127
Thanx Marijen for that article, It confirms my belief that menopause and the low estrogen level caused my devastating relapse of my autoimmune condition which was stable and fairly benign for over 30 years. An excuse I can start to use for NOT playing with my hormones by taking the AI's.
I don't use any of the meds for my condition, which cost over $11,000 a month, for life!, and can cause a variety of s/e's. One of the pharma companies did do a trial, adding estrogen to the drug but it was abandoned. IDK why but my guess is it was effective and all those pharma co's, at least 12 different drugs, would lose lots and lots of $$. Makes me want to try HRT but as you know BC and HRT is not available. The damage is done and a reversal of the disease is not likely, but HRT may keep it from progressing??????
Aug 25, 2017 05:19PM marijen wrote:
Your welcome chef! I have autoimmune too but I wasn't looking for this article. My older sister, 73, was whining last night because she fell into the donut hole and it will cost her a bit before she gets out. She needed me to explain what a donut hole was!I educated her on how much meds cost for cancer patients per month and I cited $11,000 for one alone.
As far as HRT goes, that would just feed the cancer so doesn't sound like a good idea to me but you can always ask. Take the study with you next time you see your MO. I like that it's recent. Not good for the heart too. As I was reading at People's Pharmacy this morning - estrogen is good for the heart....
So bottom line, they need to find something different way for hormone positive. I'm sorry you're so far along - I wouldn't spend that kind of money either. Are you NED right now? Can't remember a darned thing.
Aug 25, 2017 05:40PM marijen wrote:
chef and for anyone taking beta blockers, here is a comment from Peoples Pharmacy on Beta BlockersDiana March 7, 2017 at 6:01 pm
I am a 75 year old female. In my early 40's I began having skipped heartbeats. Numerous drs. dismissed it as just skipped heartbeats. Not until one dr. listened to me and tried to use estrogen, believing my problem was due to early menopause. Sure enough, one good injection of estrogen got rid of year long skipped heartbeat. So I went on HRT. Discontinued that with the big scare about estrogen, but then my skipped heartbeats returned. I do have a dr. (female) who gives me enough tablets of Premarin to ward off any skipped heartbeats. However, my primary dr. does not believe my facts, and put me on Metoprolol, to stop the skipped heartbeats. Needless to say, the Met. did nothing to stop my problem. Using my estrogen does stop the problem. I am presently attempting to ween myself off, and shall check with my primary dr. when he returns to his office (in two weeks). Sad that we are not trusted even with something that has been proven to be true in our lives for 35 years.
Aug 25, 2017 06:38PM chef127 wrote:
Yes Marijen, estrogen keeps women young and healthy. The problem with our hormones is when they become unbalanced BC develops and the estrogen is poison. Then menopause and osteoperosis, weight gain (belly), arthritis, hot flashes, trigger fingers, insomnia, heart issues, etc. all of which I suffer from except the arthritis, WITHOUT the AI. It's a cruel world for women, we NEED estrogen. This is JMHO. There is no dr that would treat a BC patient with hormones and rightly so. They just don't know enough about it and can cause a BC recurrence or worse, get sued. We need a better way or a cure.
Wouldn't it be nice if we can afford medical tx's? I'm on medicare and the co-payments are minimal but I have a real hard time accepting the high profits pharma makes, Maybe to my demise.
Aug 25, 2017 07:30PM - edited Aug 25, 2017 07:31PM by marijen
And they should be paid for hurting us? Told my MO I was overcooked, after I got cellulitis. You should have seen the look on her face! She couldn't deny it. Seriously I think we should all be covered instantly for whatever it takes, like catastrophic insurance. The waste would stop, everything would move faster. No more wait and see. Drugs would be freed up. No more pussyfooting around. Have I gone off the edge then? It's just an idea. Comments?