Aromatase Inhihibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

@geronimo1

The Oncologist has tried me on all 3 hormone suppressant therapies – Tamoxofen, femera and Arimidex. Each one for me has had severe side effects, which include depression( suicidal thoughts) madness (crazy thoughts), severe bone and joint pain in legs, no sleep or nightmares. My next appointment is in a couple of weeks so I don’t know what he’s gonna try next. I just know I can’t take those tablets. Any herbal stuff out there that works?

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Google herbal automated inhibitors…..I could not take any either but take beta glucan, selenium dsily….and with no chemo or radiation, my cancer antigen is down to 5….below 38 is normal….3 yrs. since lumpectomy….stage 2b.

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@johnvivian

Hi everyone – new to this forum – in fact, first time posting in a medical forum of any kind. I normally would not do so but I feel a bit trapped. I am a caretaker for my wife (51) who had Stage 2b breast cancer – after going thru surgery, chemo and radio, she went thru estrogen blockers (Aromasen, Arimidex, Letrozole, Tamoxifen. And Lupron). All had devastating anxiety and depression.

The devastating side effects: Every other day (yes this is very weird), we get deep and crippling anxiety and depression. Despite ramping up the anti-depressants to 30 MG per day, it doesn’t help – we still get the same results.

What are our options? People keep saying medicine is quite advanced these days but when I look at these estrogen blockers – they're decades old. Where is all this oncology research going? who has answers?

Are there estrogen blockers that do not have anxiety / depression as a side effect?

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I love the idea of crowd-sourcing ideas to find answers! Guessing you've already looked into how diet can affect hormone levels. There is a ton of info out there and so I decided to focus my research on websites such as PubMed & the NIH that are not profit driven. I watched the movie Forks over Knives and started on a path to whole foods, plant based eating. To learn more about how to make this change, I get weekly updates & watch the short videos on this website from the Center for Science in the Public Interest: https://cspinet.org/nutrition-action-healthletter. They have a compilation of some of the best scientific based info out there on how what we eat affects our health. Here's one of their videos on the effects of hormones in dairy products on cancer. \https://nutritionfacts.org/video/the-effects-of-hormones-in-dairy-milk-on-cancer/

Since learning of this, I've eliminated almost all dairy, meat and "factory-made" foods from my diet. This may seem extreme but it was not so hard at all. In fact, I absolutely love my "new" food choices & find my old cravings for the fatty, sugary foods has almost disappeared. I have a much different shopping list and my food costs are way down too. At 65, my breast cancer is in remission and my health, energy level and outlook seem so much better. Of course this is an idea that worked for me but everyone is different. I wish you and your wife all the best!

Liked by addieg

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With milk or meat, etc, can you provide a typical’s days Meals? What supplements do you take?

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@lindalm

Good morning! I appreciate this forum!
I'm starting Femara (letrozole) after dozens of hours of researching AI's. I was trying to understand if taking an AI is worth the side effects for someone with stage/grade 1 invasive ductal carcinoma. I mostly read scholarly articles on the US National Institutes of Health website to better understand each drug's safety and efficacy. But I could not find research showing their effectiveness vs not taking them (placebo). This is because AI's are not typically compared to a placebo, but are compared to Tamoxifen. I'm continuing to look and appreciate if anyone finds a scientific study comparing the effectiveness of taking an AI vs. placebo.

The most useful info I found regarding side effects was from a pharmacist who provided the FDA website with the manufacturers product information. Here are the links to the pdf's. I printed each of these (28-38 pages) and compared each of the drugs and categories side by side.
Arimidex (anastrozole), non-steroid: https://www.accessdata.fda.gov/drugsatfda_docs/label/2011/020541s026lbl.pdf
Aromasin (exemestane), steroid: https://www.accessdata.fda.gov/drugsatfda_docs/label/2011/020753s009s011s012lbl.pdf
Femara (letrozole), non-steroid: https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/020726s027lbl.pdf
Hope this helps.

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lindalm–I am curious if there was a reason you were either not prescribed tamoxifen or did you choose not to take it? I was diagnosed with stage/grade 1 invasive ductal carcinoma and have had surgery and radiation and have now been recommended to start tamoxifen but I am very concerned with the potential side effects. My recurrence rate is around 10% without tamoxifen and 5% with it. My concern is whether or not my quality of life outweighs the potential for recurrence. Thoughts?

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Quality of life is a piece of cake with Tomoxifen . Some oncologists are in the dark ages and will not prescribe Tomoxifen for post menopausal women. They are dumb

Liked by addieg

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@francine6829

Quality of life is a piece of cake with Tomoxifen . Some oncologists are in the dark ages and will not prescribe Tomoxifen for post menopausal women. They are dumb

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I am premenopausal….I am meeting with nutrition soon and have determined that I am willing to at least try the tamoxifen to see how it goes but the potential side effects are extremely concerning for me. I don't take any other medications currently and would prefer not to if another route is possible (hence the meeting with nutrition).

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The risks are very very low according to all my docs.

Liked by lindalm

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@francine6829

With milk or meat, etc, can you provide a typical’s days Meals? What supplements do you take?

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After a lifetime of western diet, I struggled with knowing what to eat and at first was hungry all the time. But over the past months, I’ve really hit my stride and find it's now easy and surprisingly cost effective to cut out meat & dairy. It helps to find friends and share recipes too. For supplements, I take glucosamine and a broad multivitamin mostly for the vitamin B12, D & calcium. I was taking fish oil, but now I’m not sure it’s a good idea for me. To make sure I get enough of the right foods, I use the app “Daily Dozen” for to track my day. Here is the website: https://nutritionfacts.org/daily-dozen-challenge/. It’s also good website for recipes. There are lots of websites with non-meat/dairy options for your favorite recipes. Click on Recipes: https://nutritionstudies.org/
Breakfast:
~Each week, I cook 1 cup of steel-cut oats & 1cup of barley (separate pots). That makes about 8 cups and I mix them together in large bowl with cinnamon & vanilla. I have that for breakfast every other day, adding blueberries, raspberries, mango, etc. No sweetener needed; it’s delicious! I often add an apple with tablespoon of peanut butter & large mug of green or oolong or chamomile tea.
Other breakfast options:
~whole wheat toast topped with mashed avocado and toppings like sliced cherry tomatoes, spinach, lemon juice, red pepper flakes, vegan parmesan.
~Whole grain bread topped with any kind of pure nut butter & a banana
~Whole grain bran flakes (with no additives at all) with ~¾ unsweetened non-dairy milk
Lunch or dinner:
~Every 3-4 days, I make a big bowl of chopped salad with diced veggies – whatever is in season like cucumber, red & green sweet peppers, green onions, carrots, radishes, cherry tomatoes and maybe cauliflower. Each day I eat 1-1/2 cup of this, adding balsamic vinegar & pepper for flavor and sometimes avocado slices.
~Cauliflower crust pizza –top it with sauteéd veggies… mushrooms, onions, tomato, etc. If you don’t want to make your own, Costco has a good cauliflower crust pizza (although not vegan).
~I usually have 2-3 favorite frozen crock pot soups in 2-serving packets. Here is my favorite vegan chili recipe. https://www.acouplecooks.com/vegetarian-chili/amp/
~For my easiest meal, I put frozen broccoli (or other veggies) in bowl, pour any kind of soup over top & microwave. The veggies double the soup volume and adding a slice of whole grain toast makes an amazing, easy meal.
~I sometimes buy packaged salad mixes and add extra veggies and/or avocado; whatever I have in fridge. Aldi’s has 3 good and inexpensive salad mix choices – just toss the cheese.i think their veggies are organic.
~Here's a yummy vegan sloppy Joe’s recipe: https://minimalistbaker.com/vegan-sloppy-joes/
~I keep home-made, frozen cooked lentils & black beans available and pop some into my soup or salad to bump up protein as needed.
~Mexican food is a great way to add beans and legumes to your day (although the cheese has to go or buy vegan cheese). I buy fresh salsa at Aldi’s and make my own batch of easy refried black beans with cumin & chili powder & freeze portions in muffin tins.
~Daily 2-3 tablespoons of mixed seeds/nuts and 1-2 teaspoons of flax seeds.
~I still eat some fish and eggs but am tapering off.
~4 servings of fruit – blueberries, raspberries, apples, cherries, grapes, bananas, oranges, lemon/limes, etc.
~Spices – cumin, turmeric, ginger, chili spices, cayenne, bay leaves, oregano, cinnamon, nutmeg, vanilla, peppermint…
~Treats – 2 oz dark chocolate with ½ C raspberries, 1 corn muffin… still looking for healthy treat ideas.
~Beverages: simply water with or without lemon and tea with non-dairy milk
I also try out vegetarian restaurants, particularly Indian food, to get new ideas.
Hope all this provides some insight; I’m obviously over enthusiastic about it! 😀 Wish my Mom (who died of breast cancer) could see how I’m eating the way she used to encourage me to do <3.

Liked by elizm

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Would you consider yourself thin? Do you exercise ?

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@addieg

lindalm–I am curious if there was a reason you were either not prescribed tamoxifen or did you choose not to take it? I was diagnosed with stage/grade 1 invasive ductal carcinoma and have had surgery and radiation and have now been recommended to start tamoxifen but I am very concerned with the potential side effects. My recurrence rate is around 10% without tamoxifen and 5% with it. My concern is whether or not my quality of life outweighs the potential for recurrence. Thoughts?

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I am post-menopausal and the standard of care is to prescribe one of the 3 aromatase inhibitors. Tamoxifen is generally given to pre-menopausal women. I have done exhaustive research on the 3 AI's and, with misgivings, decided to go ahead with letrozole (Femara). I've been on it for a month or so and, even though I have no visible side effects, I would discontinue it if I was sure it is not or is only minimally effective.
I found no definitive answer to our question >> Do women with stage/grade 1 IDC get enough (or any?) benefit from taking estrogen suppressing drugs to balance out the side effects? One not-for-profit breast cancer source said that, once a drug dosage is established, there is no incentive for the manufacturer to do further dosage studies. But, just as the Oncotype DX test confirmed that chemo was not necessary for women with lower grade cancer, shouldn't there be studies that determine if AI's & tamoxifen are really effective for those (us) women? I'm continuing my search until when i get a second opinion from an oncologist later this month. Hopefully she will know if such studies are available.
This is truly a hard decision for each of us. Do we actually risk cancer reoccurrence by not taking the drugs and if so, by how much? Or do we take the drugs "just in case" and face potential serious drug side effects? I just met a woman through the Pink Ribbon group at Mayo who took AI's for 10 years and is now cancer free for 15+ years. She has a friend who quit after 5 years and had reoccurrence 6 months after quitting. That reoccurrence may or may not have been connected to the estrogen suppression. And there are women posting on the internet who never took the drugs and are cancer free. So at this point, I am not ready quit taking it but will do so if/when I find out it's not worthwhile. I wish you all the best of luck in making your decision.

Liked by elizm, cfacarol, addieg

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@francine6829

Would you consider yourself thin? Do you exercise ?

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Yes, my BMI is 22 which is normal but is now considered thin. I am not sedentary; I walk 10,000+ steps a day, sometimes do yoga & take classes like zumba. When I was diagnosed with BC, I started attending a local (Rochester) meditation group and what I learned really helped me through this illness time and in developing an overall healthy happy outlook.

Liked by elizm, addieg

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@lindalm

I am post-menopausal and the standard of care is to prescribe one of the 3 aromatase inhibitors. Tamoxifen is generally given to pre-menopausal women. I have done exhaustive research on the 3 AI's and, with misgivings, decided to go ahead with letrozole (Femara). I've been on it for a month or so and, even though I have no visible side effects, I would discontinue it if I was sure it is not or is only minimally effective.
I found no definitive answer to our question >> Do women with stage/grade 1 IDC get enough (or any?) benefit from taking estrogen suppressing drugs to balance out the side effects? One not-for-profit breast cancer source said that, once a drug dosage is established, there is no incentive for the manufacturer to do further dosage studies. But, just as the Oncotype DX test confirmed that chemo was not necessary for women with lower grade cancer, shouldn't there be studies that determine if AI's & tamoxifen are really effective for those (us) women? I'm continuing my search until when i get a second opinion from an oncologist later this month. Hopefully she will know if such studies are available.
This is truly a hard decision for each of us. Do we actually risk cancer reoccurrence by not taking the drugs and if so, by how much? Or do we take the drugs "just in case" and face potential serious drug side effects? I just met a woman through the Pink Ribbon group at Mayo who took AI's for 10 years and is now cancer free for 15+ years. She has a friend who quit after 5 years and had reoccurrence 6 months after quitting. That reoccurrence may or may not have been connected to the estrogen suppression. And there are women posting on the internet who never took the drugs and are cancer free. So at this point, I am not ready quit taking it but will do so if/when I find out it's not worthwhile. I wish you all the best of luck in making your decision.

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I agree it's really a tough decision. I also have Stage 1 IDC with the same treatment: surgery & radiation only. . When I asked my oncologist point blank about the re-occurrence rate. She seemed evasive but said this drug lowers re-occurrence by 50% (of whatever percentage I have). She was evasive on the % I have of re-occurrence. Anastrozole (I've only been on it for 10 months) is aggravating my arthritis – not fun. She also said because my tumor was ER+ my re-occurrence rate will NEVER be 0. That bothered me for some weeks, but now I have accepted that fact. I refuse to live in fear – but still wonder if the drugs help that much. I found this calculator to be of great interest. Someone posted this a while back. https://www.breastcancer.org/research-news/online-tool-predicts-hr-pos-recurrence-risk https://www.cts5-calculator.com/

Liked by addieg

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@kathyomaha55

I agree it's really a tough decision. I also have Stage 1 IDC with the same treatment: surgery & radiation only. . When I asked my oncologist point blank about the re-occurrence rate. She seemed evasive but said this drug lowers re-occurrence by 50% (of whatever percentage I have). She was evasive on the % I have of re-occurrence. Anastrozole (I've only been on it for 10 months) is aggravating my arthritis – not fun. She also said because my tumor was ER+ my re-occurrence rate will NEVER be 0. That bothered me for some weeks, but now I have accepted that fact. I refuse to live in fear – but still wonder if the drugs help that much. I found this calculator to be of great interest. Someone posted this a while back. https://www.breastcancer.org/research-news/online-tool-predicts-hr-pos-recurrence-risk https://www.cts5-calculator.com/

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Thank-you so much for sharing that link Kathy! It shows I have a reoccurrence risk of 4%! If that calculator is accurate, then taking an AI for 5 years with a 50% risk reduction would be only a 2% difference. Not worth the risk in my view. I will include this in discussion with my new oncologist.

Liked by kathyomaha55

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@lindalm

Thank-you so much for sharing that link Kathy! It shows I have a reoccurrence risk of 4%! If that calculator is accurate, then taking an AI for 5 years with a 50% risk reduction would be only a 2% difference. Not worth the risk in my view. I will include this in discussion with my new oncologist.

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Ah, I just read the fine print and this tool is for use after a woman has taken an AI or Tamoxifen for 5 years. This calculator then helps the doctor decide if the woman should continue the drug or not. I'm disappointed that the studies supporting this tool did not include a control group of women who did not take the drugs.

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Let me know what the doctor says. Keep in mind if it does come back – it will probably come back in the brain, bones, lung or as liver cancer, That's what I keep in mind.

On another note – I went to a cancer talk on 9/12. It was really interesting – they had a panel of 6 doctors, to talk about re-occurrence.

The most interesting fact was that even people with a bi-lateral mastectomy, have the same rate of re-occurrence, as those that had other treatments. Because some breast tissue is left behind even < 2%, so this does not change the re-occurrence factor. They said they are trying to talk most women out of this for that reason. I learned a lot of stuff there.

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