How Many are doing 10 years on Aromatase Inhibitors
Comments
-
Have not posted in a long while. Trying to skim through various comments and just want to add my update. I will be completing my 10 years on AI in January 2021. Whoohoo! I saw my ONC a couple months ago and even asked if I should continue on it after that. She said NO. I am anxious to see how I feel after getting off of it. Not sure what side effects are really due to the AI or just normal aging.
Not to scare you all, but I have a client who initially refused to take an AI after completing her chemo/radiation treatments. Her cancer returned a couple years later, and she just went home from the hospital on hospice care yesterday. I know that we cannot ever be sure that her end result was caused in any way from not following the AI protocol. But I am glad that I stuck it the whole 10 years.
0 -
As you evaluate your situation and read the feedback to your questions on these boards, please keep in mind that the attitude towards AIs varies greatly not only because of perceived or anticipated side effects but also based on one's staging. Obviously, stage III women like myself have more recurrence risk and we are likelier to stick to the medical advice than some stage I ladies. Assessing risk and concerns however, should be done during a carefully planned conversation with your medical oncologist (in my opinion that I am not enforcing on anybody.)
Like you I was diagnosed at 54 and stage wise we seem close although I am a step ahead in this weird race. My MO told me she would keep me on AI for as long as my bone density is OK or will switch me to tamox if my bone density starts to deteriorate. She mentioned some of her patients stay on AIs beyond 10 years.
Being on hormonal therapy has not slowed me down at all - professionally or in personal life. On another thread you raised concerns about intimacy. I remarried last year at 61, would not have done that if AI were causing serious issues in this department.
Good luck with your decision!
0 -
How long on AIs or Tamoxifen and or other drug. I was on Tamoxifen for 5 years starting 2009 (lumpectomy and radiation), even though I was menopausal. He felt tamoxifen had proven itselt, and that AIs were too new at the time to really know. At one of the last meeting with the oncologist he mentioned that some studies are suggesting 10 years for tamoxifen, but did not seem to suggest it for me. Scroll forward 2016. BC again, left breast. TC Chemo, bilateral with a different clinic and oncologist. Started generic anastrozole. Joint pain and stiffness immediately. Stopped for a few months, then started tamoxifen. Scroll forward to 2019. BC in R-axilla. PET showed no metastasis. Start Ibrance and brand name Arimidex. Oncologist has suggest Ibrance might be forever, and AI, maybe 10 years. Tumor shrunk from 2.5 cm Sept 2019 to 7 mm April 2020. Oncologist suggested surgery. But since tumor is shrinking, and surgery will do nothing for rogue cells, and presents danger to nerves, tendons, muscles, my sanity, I am waiting to see what the August CT shows.
0 -
Hi Jinx27! I've not experienced chest pains on the AI, just finger and knee stiffness. If you have not already called, please contact your MO or PCP. A heart EKG is a quick and painless test performed in the doctor's office, or s/he may have you wear a heart monitor for a week or two. Please get it checked out, though. Chest pains are not to be ignored.
0 -
Hi. I haven't posted in awhile. I was on Arimidex for almost 9 years until 2017. Fortunately, I had very few side affects that affected my day to day activities - just occasional minor pains and osteopenia bone loss. I did take glucosamine and condroitin to help prevent joint pain as I'd been taking that before BC. My advice is to exercise and keep moving your body as much as you can during treatment. I also had two annual doses of Reclast for the bone loss with horrible flu like side effects, but according to my doctor that's very unusual after the first dose. Arimidex wasn't a huge day to day issue for me so if you're on the fence about an AI, maybe give it a try and see how you do.
0 -
encoremom - thank you for the encouraging post. Almost a year on Arimidex/Ibrance now. Stiffening in left hand seems to be getting worse, was mostly just one finger. Did the hair thinning slow down for you? Probably won't get a bone scan for a year or so, hoping bones are holding up. I stay active and now that gym has opened up, want to get weight lifting back into the routine. Do lots of walks/hikes
0 -
I am in my seventh year of arimidex with no serious side effects from it, will continue for as long as possible. My MO had me on Prolia for four years with no problems either. However, when she gave me an infusion of Reclast two weeks ago it threw me into a tailspin for almost two days: fever up to 102 and flu symptoms. Fortunately, my MO was confident it’s Reclast and not Covid. I will not be having it ever again.
0 -
i had my operation lumpectomy and node clearance september 2010 3 weeks radiotherapy refused fec chemo was put on arimidex after 3 days i was i total agony struggled to get out of bed struggled holding the kettle and joints were terrible was told to try it for 6 months which i did reluctantly. They then put me on exemerstane which wasnt much different i stuck it for 18 months then i said i wanted to stop taking them they persuaded me to try letrozole which i have taken to date which in all is 10 years. Ive had no life since my operation only go out once a week food shopping and am now using a walking stick both my hips are gone and pain in both knees had 13 falls as just gives way. I go for xrays on both hips in a weeks time after pushing like mad. I took my last letrozole yesterday so am hoping some of the side effects will ease up i have also got a trigger finger on my left hand my teeth have needed a lot of treatments not slept since i had the op so hoping some things will change. Nobody seems to know if the side effects go away which is so unfair after all the suffering.
0 -
Ladies who've been taking AI or AI+Lupron for 5-10 years, how do you look comparing to women your age?
0 -
I probably look my age after almost seven years on AI or maybe slightly younger, depends on whom you ask :-) That being said I was probably looking ten years younger than my age when I was diagnosed. A year of harsh treatments took its toll (I don’t blame it on just AI
0 -
I used to look about 12 years younger before Letrozole (same as Arimidex). I was 50 people thought I was late 30s. Now I look my age, maybe a little bit younger. I never had any lines or wrinkles. Now my skin is really really thin and lined. I have wrinkles around my mouth which I never had and I never smoked. Its definitely the lack of estrogen as my sisters and brothers all still look much younger than their ages, and we are all in our 50s. Sorry for the bad news.
0 -
I was diagnosed at 53. Tamoxifen and Lupron for 2 1/2 years. Letrozole for an additional 6 years. I am over a decade away from diagnosis. I look much younger than 63. Recently, I was mistaken for my grandson’s mother. That said, my deceased mother was, and I and my three children are, often mistaken for looking way younger than our ages. When my mom passed at 93, she had few gray hairs and never, ever dyed it. Last year, my daughter, 35 at the time, was taking a book out of the library and the person at the circulation desk asked her if her mother had given her permission to take out the book. It was a romantic novel.
Despite getting cancer and having Ehlers Danlos, some of my family’s genes have been kind0 -
Thank you so much for all your answers!
0 -
Good morning all, I have been on arimidex continuously for almost nine years with manageable side effects. As i approach ten years, I wonder if there have been any recommendations or studies on going beyond ten years Is there any benefit? I seem to get comfort in taking the small white pill but is there any benefit other than perhaps psychological. Thoughts
0 -
Regarding the length of time for taking an AI, my oncologist just asked me if I was planning on taking Letrozole longer than the 10 years he originally prescribed (I'm at the 9 year mark). I asked if there were any new studies showing a benefit for continuing past the 10 year mark and he said there was not, but if I were his wife, and tolerated it, he would want me to continue taking it. I had not been planning on continuing and am uncomfortable with trying to make the decision without any indication that it would do me any good.
0 -
Thank you Ihintz! That is a thought provoking recommendation from your MO. My MO has said stop at ten but I wondered if there was any new data. I have been on Actonal to treat osteopenia but have since slipped slightly into osteoporosis. The recommendation was Prolia. I went to an endocrinologist and she described the various treatments in great detail. She did say that after stopping Prolia you need to take Reclast to stop so called rebound fractures. So that turned me off of Prolia. So I will continue to take Arimidex for the next year and ask again when closer to concluding my ten years to see if there are any new recommendations on continuing. In the meantime I am continuing Actonel for bones. All appointments have been delayed due to covid concerns. Gives me more time to decide what’s next.
0 -
My MO also mentioned some of her patients continue on AI after ten years. I am not facing this decision yet but honestly, I wouldn’t mind continuing after ten years if my bones stay in good shape.
0 -
Bluegirlred - you're welcome. I believe the hair thinning did slow down after awhile. I too looked a lot younger than my age when diagnosed at 52. I would say I probably look my age now at 64. The dry skin and hair - as well as my bone loss- did improve after going off Arimidex. No one ever suggested to me that I'd be on an AI for more than 10 years. I've had different oncologists tell me different time frames as research advanced, but most said keep going close to 10 years I came off after almost 9 years with my oncologist's blessing. I had bone loss and my body didn't like meds like Reclast. I try to exercise and maintain a healthy weight and leave it in God's hands
0 -
It sucks looking your age. I was so jelouse the other night when my partner's niece was carded - those were the days. The first "ma'am" was painful, very painful.
0 -
I started on Tamoxifen then a year + on Arimidex......a horrible year I might add.....then changed to Aromasin . I have been on it over 10 years and was told I will be on it for life. My risk factors are still high and I am tolerating it very well so that is what I will do . I have taken 2- 1 month breaks during this time but I am afraid to omit it longer......
0 -
Texgirl, you are doing something right. Do you have any diet, or anything you recommend for us? I wish you many healthy years to come.
0 -
Wow, texgirl - awesome!
0 -
I am just finishing 5 years of AI drugs. I ended up on Prolia for my bones as I had bone loss also. Now that I am done with my AI drugs I am also off the Prolia as the bone loss resolves once your off the AI drugs. For me it was watching 5 people I know with stage 4 Mets trying to live life in the face of Death and watching 3 of them die. Who wants to be told you have only a few years to live. So I opted to bite the bullet and take the AI drugs because the side effects are not as bad as being told your dying...
0 -
On everything I have read the risk factor of recurrence on ER/PR drops off after 10 years. I would only imagine someone who was a high stage 3 would benefit as they are at great risk for mets, but the lower stages would drop off to low risk for Mets after 10 years of AI and the benifit may be too low.
0 -
Inflammatory BC is nothing to mess with, My Girlfriend died this year from it, She was on AI drugs for 7 years and with in a year of stopping AI treatment it was back.. She did 36 months of Various Chemo and targeted therapies, not one of them stopped progression longer than 6 months, she finally ran out of drugs to try and that was awful, she lived a few months after her options ran out.
0 -
HI, ladies, I have been on hormonal therapy (Lupron and Aromasin) for almost 4 years. I just realized my onc had ordered BCI test for me to determine my late recurrence rate and my benefit of taking hormonal therapy for 5 extra years. I will need to pay at least $1000 out of pocket for the test.
I actually don't want to get the test, I think my young age and one positive node automatically put me on high risk of having late recurrence. I really want to stay on Lupron and Aromasin for at least 10 years or just as long as I can tolerate them fine. I am curious to know the results but I think end up it's all about luck.
Anyone here had declined BCI test and opted for 10 years of hormonal therapy? What's your experience?
Thanks!
0 -
This month makes my 5th year on Lupron and Arimidex. I started at 28 and have had some mood swings, bone pain (osteopenia), and significant weight gain and hot flashes. I was never offered the BCI test because of my positive node and age.
I want to try to stay on it as long as possible as well, if I can get my weight under control, bone health improved and also explore options for fertility I might stay on. I have an older cousin who quit Tamoxifen and refused Lupron and Arimidex.
I had a conversation with my MO about getting off of Lupron and Arimidex and switching to Tamoxifen only, before covid I was getting quarterly injections of Lupron and I think the higher dosage was too much for my body. Due to the shortage I now get it monthly, I've noticed a reduction in my depression and anxiety. Im going to stick with monthly Lupron from now on.
If you dont mind me asking, have you preserved any eggs? Im soo curious to find out the status of my fertility...
0 -
Hey all. I am 7 1/2 years on AIs and I STRONGLY encourage everyone to get the BCI test. 2 1/2 years ago my MO said she was taking me off at 5 years. Thankfully because of BCO I read here about the BCI test and asked my MO if I could be tested. She said the test was useless, waste of time and money and there is no proven benefit to continuing on meds after 5 years in fact causes harm. I pushed and she finally ordered the test. I was high risk/high benefit. (Hate to think what could have happened had I gone off at 5). 😱 Back then the recommendation was 7 years but now the guideline for my situation is 10 years. When I get there, God willing, who knows what the advisory will be. Thankfully I tolerate the Letrozole well, though the accelerated aging process is difficult to accept. I too looked young for my age prior to BC and turned heads but today I look like holy hell 😭 but grateful and blessed to be alive.
0 -
I concur with Just Broken. The BCI test is a great way to find out if you will benefit from continuing after 5 years. According to the website only 3-5% of node negative women will benefit from 10 years. Unfortunately, I am in that category but the test results give me the incentive to keep taking the meds despite how they make me feel.0
-
I just got my BCI results with high risk/high benefit. My risk of recurrence in the next five years is 17% which is high. So, I will be staying on Letrozole for the next five years. My hair is thin, I have a lot of fatigue, and I feel old and stiff at times. Better to put up with the side effects.
0
