Looking for research re: taking AI drugs vs not taking them
I am currently taking Exemestane. I’m 61. Took a while but I’m doing well on it (doing yoga, pranayama and acupuncture). I now have osteopenia after taking it six months. I’m trying to find research on taking AIs vs not taking. What I’m finding there is not much difference between taking and not taking. But more likely to get arthritis and osteoporosis.
Can anyone post links. .
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I was sent this from my doctor. It’s long but has some good information.
Sending good wishes to you! I wouldn’t jump to conclusions, just yet. Everyone’s experience with AI’s is individual…my advice is focus on a good “Radiation experience”…being open to using lotions and protecting your skin all you can. This is so important! (for your comfort) I’m on my 3rd AI…taking it every other day, rather than daily. It’s also something I can skip a few days on…and feel okay (like over the Holidays). Yes, it affects me, and I’m learning to manage the pain with extra rest (time to knit and read!)…I guess I’m saying, Don’t get too far ahead of yourself, and remember: everyone’s journey is unique.
I was diagnosed exactly 10 years ago at 58. Insitu. Nuclear grade 3. I opted for mastectomy to reduce my chance of a recurrence. It was 30% estrogen positive. Not really considered estrogen driven. My onc wanted me to take AI. After reading up, the side effects etc. I opted out. She tried to convince me to just try it and if bad side effects, stop. I refused. 10 years later all is good. I'm vigilant about follow up and try to watch diet and exercise. I wasn't willing to risk getting another type of cancer to prevent recurrence. I wasn't willing to live with those side effects. I'm not telling a younger woman or any woman to do what I did. It's such an individual decision. But here I am 10
Years later cancer free without taking it. Do what works for you.
i opted not to take AI for my stage 1 ER positive bc but did radiation.
2.5 yrs later it came back same place and now i take AI with no noticeable effects…some of us apparently escape dramatic effects which i didnt know at the outset
I dont believe this study is about recurrence. It is about using AI and Tamoxifen to prevent first occurrence cancer in women who don’t have cancer. So the 53% has nothing to do with actual cancer patients. If I’m reading this wrong please help me understand.
Hi All,
New member here and breast cancer patient (post-meno, E+P+, PT2, PN1a, Grade 2, surgery, chemo, radiation, AIs, OncoDX 25).
I'm a researcher for a living, so I'm one of those irritating patients that researches everything to death to make sure I'm well-informed. 😀 This is offered in NO WAY as a replacement for medical advice, just to share what I've learned in my travels. As always, your mileage may vary. 🙂
I too have been struggling with the issue of AIs, and have researched the pros and cons of each (already been through Anastrozole and Letrozole, and supposed to start Exemestane next). A couple things in case they're useful:
1. Whether or not an AI is worth the tradeoff of side-effects/potential damage vs. recurrence risk is a VERY important decision for you. One tool mentioned here is the (very well researched) Predict Breast cancer tool (be SURE you're using the latest version (v3) as they update their models based on new data). It allows you to provide details on your cancer type, then lets you turn treatments on or off to see how they could impact your outcomes. In my case, the difference taking AIs would make to my risk reduction is 1% difference at year 5, 2% at 10, and 3% at year 15. For someone who's not tolerating them well and scared of damage, this'll be critical to know.
2. There are outstanding oncologists everywhere, and hopefully you have one. But be aware that in some systems, that onco has been told that the protocol is "AI or Die" and they have to relentlessly stick to that script regardless of the actual relevant data for you. For them, it protects from liability if they don't offer it, but be aware, that may not always be the final answer. (At the risk of offense, I'm so tired of videos of old, white drs. telling women to stop the complaints and just "suck it up and take the medicine." Let's see you do it.) :-Z
3. Many people (and drs.) will mention that figure of AI "reducing your risk by 53%." If that no.'s accurate, be aware of this. That's 53% of your RISK of recurrence, NOT a 53% chance you'll get cancer again. Often misunderstood (and good to scare you into AIs). So for example, if your survival odds are 97%, the AI's impact is 1.59% (53% of 3%). Of course, if you have a scary-high risk of recurrence, you may well calculate that every bit of additional help is worth the price you may need to pay. But again, just be sure you're an informed patient.
4. Finally, there's a LOT of legit research going on around other natural forms of aromatase inhibition (the function that makes estrogen in your body). Some foods (top are button mushrooms, cruciferous veggies (ex., broccoli), fermented foods, MANY more easily found online) in addition to the impact of a high fiber diet and exercise to inhibit aromatase production. Actual research you can look up to help women who can't (or don't want to) tolerate AIs. Is it the same as an AI med? Likely not, but you can sure have a big impact if you decide not to go the AI path.
I hope this is useful for anyone here. Appreciate everybody in the conversation. Kelly