Anyone NOT taking an AI?

I would be too scared to not take anything if something was recommended. I am taking Femara and having Zoladex shots. Sure there are side effects and some of them are terrible, but nothing is as terrible as dying from this horrible disease!

I am not currently taking anything. I have tried Femara, Arimidex, and Tamoxifen. My side effects were many and crippling. My quality of life was horrible on the drugs. I have decided not to take them any more. This has not been a decision I have made lightly. I have spent hours agonizing over it. I am definitely not a favorite patient of my MO. I am not a favorite of those who advocate taking them no matter what. I do not encourage other women to stop taking them. However, for some of us the drugs are intolerable. I wish I could take them. I wish there was support and understanding for those of us who make this decision, as it is not an easy one.

below is an easy explanation of the benefit of taking endocrine therapy over 10 years. Also keep in mind that you should discuss with your physician what your "absolute" risk of recurrence is with respect to taking or not taking the medication. I had the Oncotype DX test which indicated a score of 15. That translated into an absolute risk of recurrence of 20% if I DID NOT do endocrine therapy. Taking the med reduced my chance of recurrence by 50% which translates into a 10% absolute chance of recurrence for me if I take it for 5 years and even lower if I take it for 10 years.

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Question: The latest research results encourage women to take tamoxifen for 10 years, not 5 years. When will similar study results be available for anastrozole?

Dr. Gadi: I should first clarify that two separate trials recently presented at major breast cancer meetings suggest that women who take tamoxifen for 10 years as opposed to 5 years have a lower risk of breast cancer returning. Collectively, both studies suggest that for approximately every 30 women treated for 10 years as opposed to 5, one additional woman may have her recurrence prevented. Another way to state this same information is that 29 women received treatment who would not benefit. Although the findings were considered statistically significant for survival, there were also certain harms that became more frequent with longer exposure to the drug (clots, endometrial cancer, etc.).

Although there is still interest in understanding whether 10 years' use of drugs such as aromatase inhibitors will be better than just 5, these trials are large and still in active follow-up of participants. I doubt results will be available for many years to come. Moreover, in my personal opinion, they are unlikely to demonstrate much improvement over the studies that have been reported on the 10 years of tamoxifen use.

mcgis - I started taking Arimidex in August 2012. For the first six months, I felt pretty good, but then the SEs started. I read so many posts here, with great suggestions of how to alleviate SEs. I tried, I really did. The next six months were horrible. I had SO many SEs, some of them life threatening. I documented every single symptom but tried to keep on going.

Finally, when my blood pressure and cholesterol were off the charts, I was bleeding from atrophied vaginal tissues, was almost incontinent from atrophied urethral tissues, unable to stand up straight and was using a walker due to joint pain, and not wanting to get out of bed every day due to severe depression, I went to see my MO. I'd been on Arimidex for a year.

She was horrified. She wanted to know why I hadn't been to see her earlier. I told her I didn't want to be a weenie. She said "You're NOT a weenie! We KNOW it's from the drugs!" and immediately gave me a two month drug holiday, during which every single side effect went away.

My happiness was short lived, though, as she prescribed Femara right away. I did fairly well for six months, but the same SEs started coming back. I would have had to take more than half a dozen additional prescription meds to alleviate all the AI-caused problems.

When I had my BMX, my risk of recurrence was less than 1%. I had no chemo, no rads. At that time, the MO told me that if I were one of the women who could not tolerate the AIs, she would feel comfortable letting me go off them.

So I had a decision to make. First, I had an extremely low risk of recurrence in the beginning. Then I lost 60 pounds, further reducing my risk. I had two years on AI drugs. I tried to eat right, exercise, do all the things the ladies in the AI threads suggested. I even got Acupuncture. But it was obvious my quality of life was suffering greatly.

Here was the clincher: my DH has incurable kidney disease. We had purchased an RV to travel across country to see family and friends. If I took the AIs for another three years, I MIGHT be ready to travel, but it might be too late for my DH. I spoke at length with my MO, my Oncology Nurse, and my Nurse Navigator, and ultimately made the decision to quit. All of them made me feel completely validated and supported my decision. They all told me I had given it all I had. (Even though I told them I wouldn't try Tamoxifen - family history of blood clots - or Aromasin.)

SO - I do not take AIs. Unfortunately, I've had a few health setbacks (unrelated to BC) in the past few months, and I'm not where I'd like to be, but my mind is at peace regarding quitting the AIs.

The only other thing my MO has now suggested is a twice-yearly infusion of Zometa, which the research has shown to reduce the risk of bone mets in early-stage women. Still mulling that one over.

I promised my MO that I would still be a cheerleader for the AIs (she is the one who referred me to BCO) and I do believe that there are many interventions that can alleviate aggravating minor SEs. And for many women, AIs are the only safety net they have.

The only thing I would advocate is to NOT quit any drug unless you have had an honest and thorough conversation with your MO.

I've done Tamoxifen, Arimidex and back to Tamoxifen. This year, my doctor wanted me to start Femara. I have chosen not to take any hormonal therapy. Quality of life for me was my decision. It wasn't an easy decision. If my cancer comes back, I'll deal with it when that time comes. When I was on hormonal therapy, I had excessive bleeding for a month and had to have several procedures done. I did excessive research on hormonal therapy and yes, I want to make sure it doesn't come back, but I do alternative therapies. Chemo gave me life, but with give and take, it is difficult to have gastroparesis, neuropathy, mixed connective tissue disease, arthritis in lower back and pelvis, and other little medical issues. Since surgery, I've had only one pain pill, ibuprofen. My headaches and infections every other month, just gets me tired of seeing doctors. Next year, I turn 50 and spending as much time with my five grandchildren is the best medicine for my soul. Everyone has different side effect, my side effects tried bossing me around too much. Of course, my doctors tried to offer me medications for side effects, but I never wanted any. Living each moment with no regrets...that's how I'm rolling these days! And loving every minute!

http://www.forbes.com/sites/elaineschattner/2014/1...

This is one of the reasons I am so comfortable with my decision, and take these studies with a grain of salt. They are quick to release all the positives, but seldom release the negative or questionable findings. I have found numerous articles that shout about this positive news about tamoxifen, but have only run across this one article that talks about the questionable findings in this new study. How much other info is hidden from us?

Was so happy to find this discussion. Have been on Arimidex (generic) since the middle of September. Like many other ladies on this site my side effects are terrible. Have joint pain, sleeplessness at night, fatigue during the day, and horrible mood swings. I either want to scream and break things, or have crying jags. My Oncotype DX score was 16, so chance of recurrence is low. Plan to talk to oncologist this Friday at follow-up appointment. Cannot say for sure that the Al are the sole reason for these issues. I also have M.S., type two diabetes, and widespread arthritis, especially in hands and knees.

I am afraid t not to take anything, since my immune system is already compromised, due to the above impairments. Maybe I can take it every other day, or he will have something I can take for my mood swings. We will see.

mcgis,

Tamoxifen works for both pre and post menopausal women. The aromatase inhibitors work only in post menopausal women. My oncologist told me that the aromatase inhibitors work slightly better in post menopausal women but if they can't handle the side effects, Tamoxifen is a reasonable alternative. He said that in the long run, survival rates are practically the same.

Yup, time to get rid of MO - no sense continuing the journey with a heartless MO. And yes, get in touch with your PCP right away - I was hugely depressed on Arimidex and had cardiac problems on the Letrozole - you could try Aromasin - many people seem to be doing well on it - hope your PCP is a more understanding doctor - if not replace him/her too - sometimes I wonder how these people got out of med school.

I was having an irregular heart beat and that sounds like what you are experiencing - go to you PCP and see if they'll refer you to a cardiologist - that's what happened to me - my oncs didn't refer me but then they are more worried about cancer than anything else I guess - anyway if you've been having these palps for 7 years I'd get on it right away I am on meds also for high BP which was one of the se's of both letrozole and arimidex.

Hello:

This is my first post. I am a 66 year retired nurse. I was diagnosed in June with right IDC cancer, tumor was a little less than 0.5 cm. Had lumpectomy and will complete 16 hypofractionated radiation treatments on Monday. I am so on the fence about the aromasin the oncologist is suggesting - she says as low as my Oncotype DX score was that it might not make but a little bit of difference in my reoccurrence rate, but I don't want to be stupid either. After reading and researching, I just don't know what to do. The side effects sound horrible. I already have osteopenia. I thought menopause was brutal but this sounds worse. Is there anyone who decided not to take aromasin???

DX: 6/16/15, IDC right, Stage 1a, <1 cm, low grade, 0/7 nodes, ER+/PR+/HER2-, Oncotype DX 8