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Preparing for AI

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  • Jewelweed
    Jewelweed Member Posts: 46
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    I live in Boston and get mine at a local gourmet shop called Formaggio. So they must have a US distribution.

    I just googled and found a few places where you can order them. They are a bit fancy, but soooooo tasty!

  • threetree
    threetree Member Posts: 1,422
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    Thanks Jewelweed, I'll google too and look around town for them. Might be nice for an occasional change.

  • Aklynna
    Aklynna Member Posts: 28
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    Hi ladies!

    I think I may be joining in on the AI experience. I had originally declined hormone therapy, but was on the fence. After having 3 follow ups with various members of my care team over the past 2 weeks I’m starting to lean back to the other side. They are all pushing them really hard mostly because of my age (43). When I had my consult with the MO and she showed me the guidelines for treatment I fell in to the “should be considered” for hormone therapy. Very small tumor, no lymph involvement, clear margins after surgery…

    Even though I am only 43, somehow I went thru menopause and didn’t know it according to the blood tests ran. I’ve been reading up more on the different AI’s that are out there. For those that are on one, how was it determined which one you would take? Did you get a choice, was it driven by insurance?


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,935
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    Aklyna,

    I have been on all three AI’s. I honestly don’t remember why I started with anastrozole but I doubt insurance had anything to do with it as all are available as generics .

  • Aklynna
    Aklynna Member Posts: 28
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    exbrnxgrl,

    When I met with the MO, she mentioned having to check with insurance about formulary vs non-formulary so wasn’t sure.

    I know everyone tolerates the meds differently, but since you’ve been on all 3… do you recall any one being particularly better or worse then the others?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,935
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    Aklynna,

    Nope, all of them eventually gave me joint/bone pain. I have managed that fairly well with Aleve (naproxen sodium) and cannabis at night. Again, no hair loss, weight gain, etc. and I had no trouble working until I retired last June. I was on my feet all day and I definitely think that being active really helped alleviate those pains.

    You are right that our reactions to meds can be very different so it’s quite hard to predict how anyone might do. Lately there have been some posts on bco which have made AI’s seem almost as challenging as chemo. While it certainly can be true for a small number of folks, the extreme se’s are not typical. Rather than going into it expecting every bad symptom to happen, why not think you might one who has minimal se’s ? Take care.

  • nancy2581
    nancy2581 Member Posts: 408
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    exbrnxgrl - I know you been on AI's for a long time. Has your cholesterol gone up? Your ac1? Just curious - thanks

    Nancy

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,935
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    Hi Nancy,

    Yes, it’s been 10 years. No cholesterol issues or anything beyond the typical bone/joint pain. It’s still a bit bizarre to think that a tiny pill each night has kept my mets in check. Or maybe it’s something else. Who knows?

  • nancy2581
    nancy2581 Member Posts: 408
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    exbrnxgrl - thank you. You have done so well. I’ve followed you since I joined because your cancer is similar to mine. Your my role model lo

  • Jewelweed
    Jewelweed Member Posts: 46
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    Now I have a really dumb question: I am five days in, and so far not the slightest sign of side effects. Nothing. Nada. I thought I would have grown a tail by now.

    How long does it take for them to kick in? Is there a magical point where I can safely say "Phew, maybe I just won't have much in the way of side effects?"

  • beesie.is.out-of-office
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    Jewelweed, it's different for everyone. Some people feel the effects immediately, but I don't think that's the norm. I think more often it's gradual, as the body slowly reacts to the depletion of estrogen. For many of us, the side effects will vary over time. A side effect that comes on early might ease up or completely go away as the body adjusts, whereas another side effect might not be evident for several years because it takes the body that long to change (in that particular area) as result of the loss the estrogen.

    Personally I didn't have any side effects for months and nothing of significance for more than the first year. Now, being 2 1/2 years in, I have various issues that might be attributable to the lack of estrogen, although some might be normal aging - sometimes it's impossible to know.

    Over the course of the 5-10 years of treatment, some people have few side effects and none that are overly annoying while other people reach the point where they decide to change meds or even stop completely. I think most people probably fall in the middle, with some side effects that are annoying but manageable and not debilitating. That's where I am right now, but who knows what the next 2 1/2 years will bring!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,935
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    jewelweed,

    I’m going to whip you with a wet noodle! Seriously, please try to gain some perspective on AI’s. Yes some people do have bad se’s, but most don’t. Yes, the typical bone/joint aches are more common but for the life of me I can’t figure out why you, or anyone new to AI’s thinks that it’s likely you’ll develop the most extreme se’s and then some. Why not think you’ll have only no or minor se’s?

    Nancy,

    I hate to disappoint but I have been stage IV de novo. Yes, I was considered IIB for a hot minute but then a bone met was found before I even started chemo. That changed everything and I had rads to the bone and have been on an AI for 10 years. It’s still an atypical course of tx for stage IV but it works for me.

  • Jewelweed
    Jewelweed Member Posts: 46
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    There is really no need to patronize, ridicule, or threaten anyone, even with a "wet noodle."

    I am allowed to be afraid and talk about how I feel. Furthermore, my feelings are valid-- post after post, y'all are talking about your scary side effects. They exist. They are real. We all get to have our feelings about this-- no matter what stage we are at.

    Nobody should be shaming or silencing anyone in this forum. This "wet noodle" crap is incredibly inappropriate. This is not how you talk to a fellow human being. Please stop it.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,935
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    jewelweed,

    I'm so sorry that you took that as shaming. It was just a funny expression we used when we were children as wet noodles do no harm! Of course you are entitled to your feelings but I was just suggesting that putting things in perspective might ease your anxiety. I apologize if my attempt at trying to lighten up the whole AI issue fell flat. Really, the wet noodle thing was just a funny childhood expression! Mea culpa and I’ll be self flagellating with said soggy noodle!

  • Jewelweed
    Jewelweed Member Posts: 46
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    Thanks for your response. I appreciate it. :-)

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,935
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    See my edit I feel bad and will be using that noodle on myself. I know you are early on in your bc life but humor is great medicine.

  • Jewelweed
    Jewelweed Member Posts: 46
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    Thanks! Eventually I will get past the terrified stage I hope! All in good time!

    And I really do appreciate your posts! I am sorry for being hypersensitive!

  • typhoon
    typhoon Member Posts: 59
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    Jewelweed, I'm just shy of a year on anastrozole, and no SEs yet. Fingers crossed that the medication treats you as gently as it's treated me thus far.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,935
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    Thank you, typhoon. The reality is that folks who have no or few se's don't tend to post about it because there's not much to talk about. This forum is fabulous but there are far more posts about issues and problems than not. It is simply the nature of most support forums but if you don't view it in those terms it can seem as if almost everyone experiences the very worst all of the time.

  • lillyishere
    lillyishere Member Posts: 773
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    Jewelweed, I started having SE after 6 months on letrozole. In case you do have SE, please don't panic. I got SE and I wasn't sure if they were from anti-estrogen treatment or recurrence and of course, the mind goes to the worst case. Just so you know, if you feel off, if you have weird pains, feeling dizzy, etc. can only be SE and no recurrence. However, MO will be the judge :). Good luck!

  • jennyjo20
    jennyjo20 Member Posts: 28
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    Hi everyone,

    Just popping in to say that I'm one of those people who has very tolerable side effects. The adjustment of going through rapid menopause from Lupron was certainly not a pleasure, but I'm now 17 months in and my body has adjusted pretty well. I've worked really hard to make lifestyle changes that would minimize side effects and help bolster my overall health. I started exercising, eating a plant-based-whole-food diet, prioritizing sleep, taking steps to manage my stress, drinking lots of water, and really limiting alcohol intake. In many ways I feel healthier now than I did before my diagnosis (which of course does NOT make me glad to have had this experience or the thought of recurrence hanging over my head). Stopping my cycle even brought an end to the debilitating migraines I have suffered most of my adult life. It might just be luck that has me tolerating endocrine therapy so well, but I wanted to share my experience so that women who are about to start know that some of us are out here feeling quite well. Happy holidays to everyone. I'm usually pretty quiet on here but appreciate everyone's input and support.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,935
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    Thank you jennyjo,

    Support forums typically see far more posts about things not going well. Thank you for helping us “see” that the worst of the worst se’s are not universal! Again, I am not diminishing the negative effects AI’s can have but bco is not exactly balanced when it comes to many aspects of bc due to the fact that it is a support forum.

  • jen2957
    jen2957 Member Posts: 75
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    Hi! I found this thread bc I was looking for info leading up to starting my first AI this week. I had found myself feeling generally overwhelmed with all the BC “stuff" as it was, so the idea of taking a med that was going to cause further changes in my body- many of which vary significantly from person to person and can be unpredictable- was starting to wear me down. I was looking for tips on how to ensure success and wanted to read some positive stories so those were at the forefront of my mind- not the list of possible side effects. You all have helped me get into the right mental space to do this in a way that will give me the best chance of not “poisoning the well" so to speak by expecting or focusing on just the negative possibilities! I told my husband that think it would work great for me if I could take my med without knowing when I started it- it could just be slipped into my food at some unknown date- that way I wouldn't be able to accidentally sabotage it by overanalyzing any slight change or symptom. Hyper-analysis is one of my superpowers. 😉

    I took my first Exemestane last night! I was initially supposed to start on the 16th, but asked if I could wait until after Christmas in case I had any negative SEs. My MO's staff said they thought I would be fine starting on the 16th, but said it also wouldn't hurt me to wait a little bit. I decided to split the difference, start now, and ease into it a little. I was going to do one pill every other day for a week, then increase, but I think I'll do half doses daily, then increase my dose to the full 25mg on the agreed-upon starting date. This may make little difference in my SEs bc I know they don't typically start immediately, but I felt like it was a good compromise that would go ahead and get me on the meds, but make me less likely to notice any changes while trying to cook and entertain family.

    I didn't know until last night that aromatase inhibitors were used by bodybuilders who take anabolic steroids! Men use them to counter the effects of increased estrogen (enlarged breast tissue) as a byproduct of the super high testosterone production, and women use them to eliminate excess fluid created by their natural estrogen levels. I had no idea!

    For those who are really nervous about starting an AI, I recommend that you go look at the side effect incidence charts that compare the AI you'll be taking to the placebo, not just the laundry list of potential side effects. I'm a research junkie, so this info always puts things into perspective and helps me internalize the fact that not all SEs come directly from the med- as evidenced in this case by the fact that the SE listed is often higher in the placebo group than the med group.

    As we go along, I hope we will all continue to check in with positive feedback, stumbles, adjustments, and suggestions on how we can all make it through this part of our treatment. I may be one who gets every SE in the book and have to try something different, but I'm going to give it every opportunity to work












  • exbrnxgrl
    exbrnxgrl Member Posts: 4,935
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    Jen,

    I have no crystal ball nor any predictive powers but I think your approach is reasonable and you’ve developed great perspective. You’ve acknowledged that side effects are certainly possible yet understand that there is good reason to believe that you may experience no or only minor se’s. Wishing you the best!

  • jen2957
    jen2957 Member Posts: 75
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    exbrnxgrl,

    I have read some of your posts to others on this topic and I always appreciate the fact that you remind us to give these meds a chance- as you have stated before, those who are doing well aren’t nearly as likely to post as those who are seeking help with issues they are having. I hope I can add to the voices of encouragement.

    I have developed an internal mantra to help me keep things in perspective, “It isn't a med to make me feel better, it's a med to make me live longer.”

    Happiest of holidays!

    Jen

  • margun
    margun Member Posts: 385
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    am on letrozole for 2 years and I was diagnosed recently with osteoporosis despite taking calcium and vitamin D. By my doctor advise I am taking bisphosphonate now. But in sève emails here I see that there is a lot of reticence taking this med. I am too tired of taking meds, chimiothérapie already made me feel older, but besides that there is a specific concern related to bisphosphonates. It there any other choice given that all anti hormones have se?

    My hope is that if by my next bone density measurement, in a year, all be better and I can stop it. But it is just a hope and I like to here from you your suggestions. I try exercise everyday (moderate such as walking stretching).