I have chosen to refuse Tamox/AIs

Leidy222588

Due to serious mental health issues, I have chosen to refuse Tamox/AIs. We lost our 21 year old son to suicide 10 months before I was diagnosed with BC. I managed through chemo, mastectomy, and radiation. Oopherectomy was strongly encouraged, so I did that also. After the oopherectomy, my mental health declined precipitously. Then, when I tried Exemestane as recommended, I began to think about harming myself; it was so bad that my family begged me to stop taking the AI. I just was not me anymore. I am currently taking Effexor for depression and levothyroxine for a wacky thyroid. My mental health is not great, but it is better now. I have chosen to not risk messing around with my mental health anymore. I have had to make a difficult decision under extraordinary circumstances that I do not wish upon anyone, obviously. My purpose in starting this thread is to give/get solidarity to/from others who may have made a similar decision. You can feel quite alone when you decide not to do more.

Cpeachymom

Leidy, there are forums on this site that are for people who opted not to take the pills. Many of them have good suggestions for foods and supplements that can help lower estrogen and fight cancer cells, often with links to the studies. Not saying you have to go this route, just if you were interested. It might help to hear from others who have chosen a similar path. Best of luck to you

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Jackster51

Leidy, so very sorry for the loss of your son. I know the decision to not take an AI is not dealt with lightly, but often we have to do what is best for us for our own self preservation. I also could not take Tam due to it causing dibilitating depression in me, , so have not been on anything since diagnosis - 5 years - and so far I'm OK. You have been through unspeakable trauma this past year. Whatever you choose to do is OK. Big huggs to you.

Peetie1

Leidy,

I am so sorry for your loss! I am also so sorry that you had to go through the grieving process while dealing with breast cancer!! Being healthy mentally is NOT something to take lightly!

I have also chosen not to take AIs or Tamox for different reasons. I am a teacher that works with young students. I did not feel that I could do what I love on these medications. There is no room for a teacher that is grumpy, depressed, or who cannot move around quickly in my profession. What I do is a big part of who I am. I was not willing to give that up (I know that now somebody will tell me that I should have at least tried it-but with my genetic testing, there was only a possible 2% benefit for me anyway). Like everybody, I of course worry about a recurrence or worse yet mets, but I would have the same worry on the medication with only a 2% possible improvement and probably SE as an added bonus (I have read studies that state that 80%of patients experience SE on AIs or Tamox.).

Here is what I have done. I now eat a vegetarian diet that was recommended by my cancer hospital nutritionist specifically for me. I have a naturopath that has provided a list of supplements that I take daily to help me to be as healthy as I can be. My naturopath and nutritionist are also a part of my treatment team from a top cancer treatment center. I walk at a brisk pace (3.5mph) daily for three miles. I have lost 15lbs, and I take a daily baby aspirin. I am told with diet and exercise I am reducing my risk by 40%. I have read recent studies that say that the baby aspirin reduces my risk of a BC recurrence by 20%. It also reduces my risk of developing colon cancer by 60%. Does this guarantee that I won't have a recurrence or mets? It doesn't, but neither does an AI or Tamox.

Thank you for starting this thread!! I know that I would like to connect with others without the judgement!

PS. I just had my six month scans, and I am currently cancer free!!

Brutersmom

Leidy, So sorry for you loss. I like you chose to stop taking Als. My list of side effects can best be summed up as loss of quality of life. There was no reason to keep on living while on the drug. My family PCP and surgeon supported my decision and encouraged me to lose weight and start exercising. My MO says I need to try the meds again. He suggested starting in the spring. If I don't he can't see me again unless I have a recurrence. I been doing weight training 3x's per week and I have improved my eating habits. This fall I had to buy new pants because they are all to big. Must be doing something right in the weight loss/exercise department.

dtad

Hi everyone...thanks for starting this thread. Hopefully it will be a safe place to discuss our decision not to take anti hormones. Here is my story. I was diagnosed at 62. I was already dealing with several autoimmune diseases. Some of which are very debilitating. I just wasn't willing to compromise my QOL any further. I also believe that at my age we really need the little bit of estrogen we have. After doing extensive research I decided to treat my BC a bit differently than most. To start I had the most aggressive type of surgery knowing I would not be taken an aromatase inhibitor. I also lost 30 pounds and try to exercise daily. This has been shown to lower recurrence rates by 40 percent. Given that fact, IMO it seems condradictory to take a drug that makes both weight loss and exercise difficult. In addition I take several supplements including Breast Defend, baby aspirin, turmeric, super immune, melatonin and berberine to regulate my blood sugar. So far so good. I've been NED for 2 1/2 years. I'm not advocating this for anyone else. We all have to make our own informed decisions depending on individual circumstances. I support and respect all individual decisions made. Good luck to all navigating this complicated disease.

Brutersmom

Dtad, I just looked up Breast Defend. That has 100mg of DIM in it. My body can't even handle 10mg of DIM. I can't handle the ALS either. Same side effects. It is amazing how our bodies are so different. I wish they would do more test on hormones levels and be able to determine what we really need to prevent recurrence.

Peetie1

dtad,

I am really interested to know what each of these supplements do ( Breast Defend, turmeric, super immune ). Would you be willing to tell me how these supplements work? My naturopath has me on supplements that improve my overall health, but I am not sure that they directly affect breast cancer (except the baby aspirin). Here is what I am taking: Calcium 600mg, Fish Oil 1200 MG, D3 5,000 IU, B12 5,000MCG, One A Day 50+, Ferrous Gluc 32 MG (for anemia after radiation), Vit. C 500MG. My naturopath also suggested Magnesium but I couldn't take it-unfortunate stomach issues. I would love to hear about the benefits of what you are taking!

One other thing to add, the naturopath recommended these supplements after looking at extensive blood work. Both the naturopath and the nutritionist felt that my diet was lacking. I had been trying to lose weight for years with no luck. My new diet, exercise, and supplements have really helped me to start losing the weight.

dtad

Peetie...I'll try to explain. Tumeric is an anti inflammatory that helps with joint issues associated with menopause and general inflammation which is not good for BC. Berberine regulates blood sugar and also helps you lose weight. Both are important in reducing recurrence rates. Breast Defend contains DIM which mimics an aromatase inhibitor but with less side effects. Super Immune is a blend of mushroom extracts that helps your immune system. Having a healthy immune system is important in the BC battle. I also take a multi vitamin and vitamin D. I think that's it. Please let me know if you have any other questions.

marijen

Is your vitamin trying to kill you?

http://www.greenmedinfo.com/blog/your-multivitamin-trying-kill-you

marijen

dtad be careful which multi you take (above). On the berberine, did you have a blood sugar problem or are you taking it for prevention?

Peetie1

dtad, Thank you for explaining!! I am going to ask my naturopath about adding these supplements at my appointment on Friday. Do you experience any side effects from taking Breast Defend?

Marijen, Thank you for the heads up about multi-vitamins. I take One a Day 50+. I am going to read that label as soon as I get home. I love to read the studies that you post!

Brutersmom

Peetie1, I tried Dim which is found in Breast Defend. I had the same symptoms with a low dose of Dim as I did with Anastrozole and Femara. Might not happen to you we are all different.

Peetie1

Thank you for the information Britersmom!

dtad

marijen...I'm taking it prophylactically. Just as some take metformin.

LokiArrow

Just wanted to mention Curcumin (Turmeric) is a highly potent cancer killer with lots of research behind it. There are a couple more supplements that anyone fighting cancer should look into : The diabetes drug, Metformin (I do not have diabetes) and Modified Citrus Pectin, Melatonin.

I also take Indole-3 Carbinol to lower Estrogen, and eliminated foods with estrogen and those that raise my IGF-1 (high levels cause cancer), namely soy, dairy and most meat. Now concentrating on a plant-based diet (no sugar or gluten).

I strongly believe my breast cancer was triggered by Soy Protein Isolate (I got addicted to Clif Mojo bars over the winter and started eating 6+ per day) and fueled by estrogen (I was using natural estrogen without the prescribed progesterone, which my doctor advised me against)........I made the connection when I could actually feel the tumor growing based on how many of the bars I ate, then found a study online called "Soy Supplements with isolate reprogram breast cancer cells"......

Like most people who post here I took a hard look at my diet and environment. I can't change the strong history of BC in my family but can change what may have contributed to it and hopefully prevent a future occurance.

I am hoping to learn more natural strategies on this forum and plan to check out the alternative threads.......