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Continuing AI for more than 10 years

mary625 Member Posts: 154
edited April 2022 in Stage III Breast Cancer

I think this topic is being discussed here in another thread, but please excuse me for starting a new thread because I can't find the one I'm thinking of. I've also posted in the forum for hormonal treatments.

I've been absent from the boards for a while, living my life. I am now living in Europe. I am at the 10-year mark for Letrozole, and my MO is giving me the choice of staying on or discontinuing. He feels that cardiac risks at this point are greater than benefits from continuing. My bone density is ok so that is not a reason to stop.

As you can see, I had a high number of lymph nodes and was staged at IIIC. Since then, I haven't had any symptoms to get me in the scanner. My MOs have never run any scans. I got myself into the scanners in 2013 or 2014 by seeing a more aggressive doctor out of state, and everything was clear. That was the last time. I don't know what I'm dealing with.

I am hoping to learn more about whether other women in my stage are continuing AIs past 10 years. Thanks!


  • nancyd
    nancyd Member Posts: 556

    I've had this discussion with my Onc every time I see him (we're on a yearly basis). As long as my bone density holds up, I plan on staying on anastrozole. He doesn't see any reason not to. It's my mental safety net.

    I made some slight changes to my lifestyle—eliminated a lot of sugar and starchy foods but that was mainly to lose weight. I don't miss my sugar in my coffee or my frequent ice cream treats. I do have an occasional piece of dark chocolate. I have to say, I can't eliminate wine or my Manhattans. But there are some things like that which make life enjoyable. And I plan on enjoying whatever time I have. I don't want to live to 90 and miss out on those things. My knees will probably go before the rest of me, lol.

  • BevJen
    BevJen Member Posts: 2,341

    I was originally diagnosed in 2003 at Stage IIIC and put on tamoxifen (premenopausal). In 2006, I had a single site metastasis to my cervix. I was put on letrozole. I am also ILC. I stayed on letrozole until May of 2019, so that was 13 years. During that time I took one break for a couple of months because I had so many aches and pains that I just felt like I had to, and my MO agreed. In May of 2018, my tumor markers began to rise, and in May of 2019 I was diagnosed Stage IV, with lesions on my bones and in my liver.

    Letrozole obviously didn't keep me disease free, but it did keep me disease free for many, many years. As I'm sure you are aware, ILC is very sneaky. I did not have scans during all of those years, but from 2006 on, my MO did do tumor markers on me because she considered me Stage IV, although nothing else happened. We never discussed cardiac risks, and my bones remained strong throughout my whole usage of letrozole.

    I would talk some more with your MO about cardiac risks versus late stage Stage IV to decide what to do here. Had I not been diagnosed with Stage IV at year 13 of letrozole use, I would have stayed on it longer. It was a small price to pay to remain disease free.

  • sugarplum
    sugarplum Member Posts: 70

    Hi Mary - I'll chime in here as I'm approaching 16 years from diagnosis and have had to fight with several oncs to stay on my anastrozole. Granted, I was diagnosed with chemo-induced cardiomyopathy in 2018, but medication and a defibrillator implant have kept that in check so far and my osteopenic bones have finally stabilized their decline. My current onc says as long as I get annual echocardiograms and DEXA scans, he is fine with leaving me on anastrozole indefinitely, which suits me just fine. I'm keeping my weight in check with Lean Cuisines and exercise, but refuse to give up my evening Ben and Jerry's!

    All the best - Julie

  • kotchaj
    kotchaj Member Posts: 205

    My oncologist has told me that I will be on Arimidex for the rest of my life. I'm 3C, regardless of what my profile says now, lol

  • lillyishere
    lillyishere Member Posts: 769

    I read somewhere that the median time of recurrence in ILC is 8 years. My MO told me the recurrence rate goes up until year #10 and then slowly comes down. I guess for us, ILC members, anti-hormone will be as long as we can handle it. My question for you ladies who have been in AI for such a long time is, what tips can you share with the rest of us? I was in letrozole for a bit over 2 years and I was getting sicker by the day.

  • sbelizabeth
    sbelizabeth Member Posts: 955

    I have a couple of tips, having been on letrozole almost ten years. First--KEEP MOVING. Exercise every day, in one form or another. Walk, ride a bike, hike, swim, run, whatever. It will really help with joint soreness. Next, and this is a mysterious, but try to not blame every ache or unpleasant sensation on the drug and get into a spiral of negative thinking. Yes, aromatase inhibitors have a list of side effects, but it's like a lot of situations in life. If I tell myself I'm going to do ok, it ups that chances that I will.

  • lillyishere
    lillyishere Member Posts: 769

    Thank you sbelizabeth. Very wise words. I do yoga, walks, light weight lifting daily, I'm on a thinner side as weight goes and I kept taking letrozole for this long thinking that would get better. My joints got way better but right after the vaccines, I started having foot pain like walking on shattered glass that never went away. This made it very difficult for me but still continued to be active. Also, I started to look sick even though the blood test were normal. This made my MO suggest that I should take 5 weeks off for the body to recover and start exemestane. I want the letrozole because it is the best one. During the month I was off, took a while for me to feel normal, a great feeling that I have forgotten. Now I'm in exemestane and I am very optimistic that it will be much easier even though my feet are still killing me. I will remember your advise of thinking positive :)

    Have you used any supplements, acupuncture, etc.?

  • RollWithIt
    RollWithIt Member Posts: 4

    I am finishing up my first year on Anastrozole, so I have a ways to go, but your foot issue prompted me to reply. I've been having pain (not as bad as yours, rather like walking on bunched up fabric then shattered glass), but it does not have anything to do with my bc medication or diagnosis, rather than is something up with my nerves (I got a referral to a teaching hospital today) and a smaller part of it was due to pronation of my foot (for that I got some orthotics). So it might be worth checking your foot problem out with a podiatrist or or health professional.

    I'm in my early 60s (diagnosed at 60) and between 50 and now I have had all sorts of weird pains, many of which came and went. I totally agree with sbelizabeth about "keep moving". That seems to always help me, both physically and mentally.

    Regardless of the reason, I hope your situation improves quickly and I'll be interested to hear anything you learn about your foot condition.

  • lillyishere
    lillyishere Member Posts: 769

    rollwithit, thank you for your note. I am younger than you and I am a yogi and very active. I can't afford to sit down, mentally, and also, I have young kids. I had my feet checked in November. I got tested and I was told that the main nerves are fine but the doctor who is specialized in neurodegenerative disease told me that secondary, peripherical nerves can't be tested. Once the peripherical nerves get damaged, it will take some time to impact the main nerves and that's when the test will show the damage.

    I don't want to highjack this topic but I want to congratulate all Ladies that made it to 10 years of AI. I'm open to any tips :)

  • homemom
    homemom Member Posts: 787

    I just agreed with my MO to continue the Arimidex for another 3 years, for a total of 10. I'm not sure what her stance is on going beyond that though. She does require that if you're on AI that you see her every 6 months and since it has had such a negative affect on my bones, I'm getting the Prolia shot every time I see her. I walk 3-4 times a week two miles, and go to the gym another two days getting on the treadmill and doing some leg machines. I also take 5000IU of D3 and 1200 of calcium that has D3 in it every day.

    I have minimal SE's except for thinning hair, so it doesn't bother me to continue, but the bone issue is a concern in relation to continuing indefinitely.

    OFF TOPIC: I just noticed that my diagnosis below is old and says I am IIB when I was IIIA.

  • sbelizabeth
    sbelizabeth Member Posts: 955

    I take a handful of supplements but they're not specifically to help with side effects from AI...but who knows? I take a multivitamin, an AREDS-2 formula to hopefully help prevent macular degeneration (my mom and her siblings were very nearly blind in their old age), magnesium (in an effort to prevent nocturnal leg cramps, which can be brutal), vitamin D, fish oil, and melatonin.

    When I started letrozole, my cholesterol shot up, so now I'm on a statin. The statin made my blood sugar shoot up, so now I'm on metformin to help prevent diabetes. (I was on metformin before--some research indicated it might help prevent breast cancer recurrence, but again, who knows? My doctor increased the dose when my A1C looked suspiciously high.)

    Breast cancer. The gift that keeps on giving. No returns.

  • homemom
    homemom Member Posts: 787

    I'm at 7 years come December and I just signed up for 3 more years of Arimidex. I've had issues with my bones losing density. In the beginning,I went on Fosamax and it helped minimally so my MO put me on Prolia shots. I did that for a year and at my next scan I barely had any bone loss - borderline Osteopenia. After a couple years I'm checked again to see if I should stay on Arimidex (5 year mark) my MO decides to keep me on Arimidex for 2 more years. Two years later, my bone loss returned. We discussed continuing the Arimidex and add back in Prolia for three more years. At no time was it considered Osteoporosis. So I think that most of us, if we stay on AI over 10 years, will need some kind of bone loss medication.

    During the above time frame, I also walked 4 mi a day, 5 -7 days a week, took a calcium and D3 supplements. I'm at a loss as how I can naturally keep my bone mass.