How Many are doing 10 years on Aromatase Inhibitors
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Trish I would think the higher dose put your bones more at risk.
Kindergarten Tumor size also plays are part in risk recurrence. My MO wanted me to do 10 years until some issues with SE. I stopped at 5 years this past May…but that could change in the future.
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Lisa2012 and LadyinBama, I just got a cortisone shot three days ago for my deQuervain's. The deQuervain's began 6 week after I started the generic arimidex. I went off the pill for 3.5 months while I had chemo, but the deQuervains did not go away. I guess that is common - once it starts, it's there to stay if you don't treat it. I waited throughout the chemo hoping it would go away, but now that I'm done with chemo I finally got the shot. It is 75% better now although still sore where the injection was given. I had the shot in my surgery side with no issues so far. I think the only thing they worry about is infection, so just keep an eye on it.
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Hi, everyone! I hope you are all doing well.
I have some questions about these wonderful/horrible AI's:
---How do we decide to leave one AI for another when side effects get too much to bear?
---How long of a "vacation" from the meds do we get? How much pain is too much - should we take pain killers to get through a drug?
---Do we just keep cycling through each one hoping it will work better this time?
My Med Onc has shown me that my survivability increases almost 40% on these drugs so I'm not gonna stop. But I did Aromisin and waited in pain (hips and knees and hands) too long before talking to MO and going off for 3 weeks. Then Arimidex until new osteoarthritis pain flared up. Another 3 week vacation from meds, now back on Arimidex but pain in ankles, knee and wrists, including good old trigger finger and deQuervains. This is bad. I'm only 1 1/2 months in and I am scared that this is my life.
Going to hobble my old 57 year old body around the block with my faithful Airedale, Beau, then to the Y to swim laps this afternoon. Thanks for any responses. Feels good to unload it. ✌️❤️ Lind
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booklady - hard to say - I switched from Femara after six months, but I had considerable pain and made the switch with the first trigger because it was the thumb on my dominant hand. I took three weeks off when I switched - but I did not discuss this with my MO. I am sure he assumes I started with Arimidex the next day. The trigger dissipated and I successfully took Arimidex for 18 months with relatively minor pain, which did improve the more I moved - the more active I was the less pain I had, but it was never absent. On Arimidex I developed a sore, swollen and hot knee after I bumped it on a trailer hitch, had a cortisone injection which solved that problem - this was at least a year in, and I stopped when I developed triggers on the thumb and finger of the other hand, one toe and the opposite ankle from the knee issue. I switched back to Femara but to a different brand. I did very well - a couple of years before another trigger. This time I switched to a different brand of Femara that has fewer fillers and additives, and that is what I would encourage you to do - talk to your pharmacist and see if they can supply you with another brand of the same drug. The other thing I did was go on an anti-inflammatory diet - made a huge difference. I cut out the foods that are notorious for causing inflammation and saw a reduction in the pain I was experiencing. I did take 6 weeks off between this last drug switch, partly because I was having surgery and partly because I was at the five year point and considered stopping. I was curious how much of any pain was due to the drug and how much was due to being 60 - I did feel better, but the pain did not go away completely, so a portion of it is consistent with age. In fairness, I also went into this with a couple of very degenerated discs in my lumbar, and have some additional ones now along with thoracic degeneration, along with some muscle tears in my left hip with bursitis - all also age-appropriate.
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Booklady, I got deQuervain's about 7 weeks after I started generic anastrozole. A cortisone shot has made it vanish so far. It took a couple of weeks for the shot to take complete effect. Now I have switched to the name brand Arimidex. So far, so good.
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thank you for sharing your experiences and for giving me ideas and hope! I feel like breastcancer.org women are my tribe. ✌️❤️ Linda
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Booklady1, I have completed over 9 years on Arimidex. I would encourage you to use the brand name Arimidex and to try at least 3 months of it before giving up. I had every side effect known to man but they all went away over time.
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BookLady1, I've been almost 8 years on Arimidex. Brand name until it went generic. While I have not had any significant problems on the generic I know many have. Who manufacturers the pills you now take. Many have had success with the generic brand by Teva but many others could only take the brand name by AstraZeneca. If necessary you can go directly to AstraZeneca for a decent price as getting the brand name from a pharmacy can be very expensive. Good luck.
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Pfizer also has a patient assistance program. Depending on your income, you might get it free. You can find the info online at
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I started Anastrozole generic for Arimidex mfg by accord healthca on 10/12/16 I have had side effects ranging from chills,fatigue,joint and bone pain and no sleep! I am hoping things get better!! I meet with my oncologist this week and will discuss the issues I am having. I am wondering if switching to the name brand will help? I also have my exchange surgery on 12/2/16 and wondering if the doctor will have me take a break from the medication before my surgery. Would love some input from people. I am so hoping I start feeling better so that I can get back to work after my final surgery. I have a very physical, demanding job. Life sure does change when you get that dreaded call-"you have cancer"
I am so glad I found this website because I feel so lost and unsure. I have gained a lot of knowledge here.
Thank you
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warrior, I made it 1.5 years on anastrozole. At the end I couldn't get out of bed. I switched to exemestane 2 years and I started having severe dry eye and I am off all meds. I forgot how good I used to feel. But I think it helped prevent recurrence.
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I certainly noticed a great improvement when I changed to brand name Arimidex but I still wouldn't say I felt good or even close to my old self. Insomnia is getting to me and I'm experiencing tendon pain; especially the achilles and my right wrist. The fatigue is terrible too. Not just tired but memory issues, poor concentration, short attention span. Oh yeah and forget sex. My libido is non existent.
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My MO wants to switch me to an aromatase inhibitor. I've been on Tamoxifen almost 2 years. I am a little concerned that he danced around two very crucial questions: 1) how long do I have to be in menopause before I can start on an AI? 2) what is the best way to confirm I am menopausal? and a third question I forgot to ask him... do I need to have a "resting" period after stopping Tamoxifen and before starting the AI?
The only thing I do know is that I will be doing 10 years... or more.
My last period was during my mastectomy, almost 2 years ago. I was regular before that but I have not had a period since starting Tamoxifen (and going off HRT).
Any advice or words of wisdom???
Yes, I have tried to call my doctor for answers, and I am getting nowhere. I find his office really frustrating in terms of follow-up :-(.
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katcar- i had the same questions as you. My MO wanted to switch me based on age alone. I was not comfortable with this because late menopause runs in my family. Neither my MO or GYN thought blood work was needed to confirm menopause. I declined the switch. At one point I figured out which lab draws to ask for, but didn't have confidence that my physicians would help me interpret. When I pushed for the oncotype test, my MO just handed me my results. In his defense 5+ years ago he didn't think it should be used in node positive women. I decided to stay on Tamoxifen for 5 years & not try to switch. But if you do switch there are 4 AIs to cycle through. At the 5year mark, my MO retired. My BS, who I still see, believes an AI will do me more harm than good. "you need your bones" & also I had a BMX, so the data doesn't show a benefit. Although someday I think it will(a small benefit). Mostly I just wanted my life back. I opted out at 5years. You do have options if you want to get to 10 years total. Best of luck.
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hi! I live in Canada and I was wondering if anyone in Canada was doing 10 years of letrozole? Thanks.
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katcar, every doc is different it seems, but this is what mine said. My situation was similar to yours. Chemo stopped my periods and they never came back. I was on tamoxifen for almost 2 years but could not tolerate the SEs. So my MO said that since my period never came back, it had been over 2 years, we could assume I was in menopause, and they do a blood test to make sure. Did that and yes, definitely menopausal. So I switched to the A.I. Was told to take 2-3 weeks off in between. I may have stretched that to more like a month.
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http://www.mdedge.com/acssurgerynews/article/10584...
It was not the news I wanted to read. I am 100% ER+ and 100% PR+
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Lots of questions to answer. My MO switched me to Exemestane from Arimidex when I threatened to stop completely because of unbearable side effects. She said if I couldn't tolerate exemestane then she'd put me back on Tamox. She said she wanted me on something--and I want me on something, too.
I had my estrogen levels tested twice before I was able to stop the tamox and switch to an AI, in order to satisfy my MO that I was indeed in menopause. Since I had multiple fibroids removed in 2009, I hadn't had a period since that surgery, so that didn't help with determining if I was fully in meno or not. Needed a blood test to figure that out.
I could not get brand name through my pharmacies because of some insurance hassle; luckily I didn't need to worry about it since so far Exemestane is doable.
As for the post and link that KaymC1 offered, I fully expect to be on some kind of AI longer than 10 years. My MO and one other has already warned me that I should probably expect that. And for the reasons described in the link, above, to protect against risk of late recurrence. My concern is that these meds will eventually stop working as some of our bodies seem to become immune to them over time. So how would we know that till we got a recurrence? It's maddening if you think too much about it; I try not to do that when I'm able (usually not able).
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KayMc1 and Clairinaz - I remember reading that when it first came out. I hope they have a cure by the time I hit 10-15 years!
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Before I started chemo, my MO said that I would be on hormonal therapy for 10 years. I assumed it would be Tamoxifen since that was mentioned by my BS. I just finished my last infusion yesterday and since all signs point to chemo induced menopause, the MO said it would be AI.
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I have known other BC survivors who have quit seeing their MO, I can't imagine that and this article explains why I need to keep going back. Saturday, I am going to funeral for a colleague who was diagnosed with BC just two years before I got the news. She was much younger than I am and diagnosed with Stage IV from the beginning. Her death has really hit me hard. Instead of feeling grateful that my diagnosis was Stage I, I am scared beyond measure. I need to find ways to find my way through what feels like an emotional set-back. This article confirms why I feel this way.
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I really appreciate hearing your stories and your decision-making process. This is a tough one. Why is every decision along the way so difficult? We really don't get any good choices. I also worry about these drugs losing their effectiveness and not knowing if they are working or not. It's enough to make you crazy, so I also try not to think too much about it anymore either. I was getting obsessed for awhile. Thank you for answering some of the questions that my doctor did not answer. I will get another blood test and see where my hormones stand now. I still had high levels of estradiol a few months ago, and I was told Tamoxifen can cause high readings. That also adds to the confusion. Maybe I'll wait another 6 months to make the jump.
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http://www.curetoday.com/publications/cure/2016/br...
The new issue of Cure magazine has an interesting article on extended hormone therapy.
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kareenie, thanks for the posting the Cure article. I just read it and I believe that those like myself that are very ER positive do benefit from the extended AIs. I am now at 9 years on Arimidex and hope to get another 6 months- 1 year before I quit. My SEs are the usual insomnia and indigestion. I love this thread.
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Good article and some good-sounding news. I liked the quote about "legacy effect" for us.
Claire
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UGH. Don't know who they are talking to that supposedly had "no less quality of life issues". My QOL has been going down the toilet since starting this evil drug and soon I won't be able to function at all and that will be the end of it for me! Just hoping to get to 5 years at this point, honestly. It sucks beyond measure.
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Oh and I quit seeing my MO at just 4 years out. They do nothing, no blood tests, no scans, not even a thorough physical exam, so my PCP was 100% comfortable taking over my care.
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jennie93 - i have said that many many times - i honestly do not get what an MO does after 4-5 years that my GP cant handle. I also get zero bloodwork, scans (unless i have symptoms), or physical exam. If i had symptoms i would make an appointment as they can recommend the best scans but honestly at my 6 month appointments i literally spend more time in the waiting room. The advantage is that they are up on all the studies as it relates to hormone therapy - extended/OS etc, but even then we don't cover that at every single visit. Its good to stay "in the system" for this reason so i guess for me ill keep seeing my MO....
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Now post 5 years I see my oncologist once a year. I do get a good physical exam. They do ask the right questions and answer mine if I have any…but most importantly, if anything changes regarding treatment they will be on the cutting edge of knowing not my PCP. We stopped ESD this past may but if any new results come out that show I really will benefit my oncologist will want me back on it.
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kareenie,
confused!
does that mean that those of us who are er positive (me 100%) are at increased risk of recurrence post the 5 year mark? That's kind of how I am reading it.
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