Safety Net Gone: A Breast Cancer Survivor Stops Anastrazole

Started by BarbaraTako, January 19, 2016
13 replies for this topic
BarbaraTako

Member
558 Posts
Posted on
January 19, 2016
Recently, I put the bottle of anastrazole down by the household batteries and other things that need to go to the recycling center. I am disposing of a safety net in a situation that doesn’t offer a guarantee that it will be OK. My chemotherapy was also a safety net that didn’t offer a guarantee. Cancer creates a lifetime of uncertainty.

A couple days ago, I got rid of the small just-in-case-I-forget bottle I kept in my purse, for when I might be out and suddenly realize I forgot to take my estrogen suppressant. I remember now that there is another small bottle up at the cabin to safely dispose of too. The decision is made. No sense hanging on to old medicine, but yet ...

My doctor and I made the choice to stop my anastrazole after five years on it. I pray we made the right decision, knowing we are in a situation where there is no certainty. We discussed the pros and cons of continuing it in my specific case — the side effects anastrazole can cause weighed against the likelihood of my cancer returning. In truth, the research isn’t in yet for my particular situation (and I am a melanoma survivor too). In reality, everyone has a unique situation.

There were pros and cons with my chemotherapy, too. I was willing to undergo chemotherapy to improve my odds and now I cope with chemo brain and other side effects. No guarantees. Often there are trade-offs for medical decisions.

Am I totally comfortable with my choice to stop anastrozole? No. Can I sleep at night? Yes (well, mostly). Two diagnoses of cancer have guaranteed that there are no guarantees in life. I have spent years (and will spend, if I am lucky) trying to get more comfortable with that uncertainty. I try to remind myself that control is kind of an illusion anyway. I am not in charge, but I sure like to think that I am.I ponder the other words I associate with the uncertainty: fear, stress and worry. I will look those emotions in the face. Yes, I am afraid of the cancer returning. Yes, I am stressed that I might not be vigilant enough in monitoring my body or that my chemo brain mind might forget an important doctor's appointment. Yes, there is worry so that whenever I see or hear something about cancer, or step on the bathroom scale, or experience something that might be a symptom, worry is triggered. That is the life of a cancer survivor and life goes on.

I was diligent about taking my anastrazole for five years — I even took a pill one day after my five-year prescription began. To be safe? We all know there is no certainty and it's unlikely that one day matters either way. I catch myself with my irrational thinking, and yet one extra day was required for my emotions. So be it. I did that for me.

It hasn’t been long. How long does it take? Weeks? Months? I try to be optimistic. I was hoping for some relief from the hot flashes, fatigue, joint pain and maybe even some of the stuff I attribute to my chemo brain. So far, if there have been improvements, they have been subtle. I will observe, wait and remain vigilant. I will wait for medical research to catch up. What else? What will/did you decide when the time comes? How did/will you cope with your decision?
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Barbara2

Member
0 Replies
Posted on
January 19, 2016
December 16, 2016 will be my 5 years-keep reading the research to see if any new advancements in length of taking arimidex. So far, research still supports 5 years. I like the idea of taking one more day because I considered that also-thoughts went to "well, even though it ends on 16 December, the pill needed 24 hours in my system, so I need to take it one more day,". Thank you for perspective. I also have your book-helps me cope.
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BarbTako

Member
0 Replies
Posted on
January 20, 2016
Hi. Yep, that is what I have read about arimidex too. Thank you for posting and for reading my book!
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Dana

Member
0 Replies
Posted on
January 21, 2016
This couldn't have come at a better time. I too was told I could stop taking my Anastrazole. I tried everything possible to stay on it including begging and bargaining with my oncologist. He couldn't have been more clear that it was time to move on. AHHHHH!! It was like I couldn't wait for this day to come and then it did and then the panic began. Glad to see I am not the only one!! Thanks for sharing. Dana
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BarbTako

Member
0 Replies
Posted on
January 22, 2016
Exactly, Dana! Thank you for posting too!
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Evie

Member
0 Replies
Posted on
January 23, 2016
I will be a 5 year survivor come July 2016. Two months ago I had to have a biopsy on surgery site bit it was okay. Between that and knowing I will be stopping anastroble (sp) and dealing with chemo brain I feel like people don't understand what I am going through.

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Evie

Member
0 Replies
Posted on
January 23, 2016
I will be a 5 year survivor come July 2016. Two months ago I had to have a biopsy on surgery site bit it was okay. Between that and knowing I will be stopping anastroble (sp) and dealing with chemo brain I feel like people don't understand what I am going through.

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LadyB

Member
0 Replies
Posted on
January 24, 2016
I can completely relate to your feelings. I too felt very committed to my Femara. When the time came to stop, after 5 years, I learned that there were mixed thoughts about the need to continue it for an additional 5 years. I was in a quandary. My current oncologist said that it was my choice. That wasn't what I wanted to hear. I wanted medical expertise to help me in this decision. After stressing about this for a while, I decided to consult with my original oncologist (I moved out of the area after my initial treatment). That was the best decision for me. We discussed the statistics for my triple positive breast cancer following lymph node dissection, chemo, and radiation, followed by 5 years of Femara. We also talked about the issues that I deal with every day, such as decreased bone density and several stress fractures. In the end, the risk of fractures causing me serious problems was higher than the risk of my cancer returning. Because I am vigilant and the initial treatment was successful, I decided to stop the Femara and not look back. So far, it was a good decision. I cannot say that it was easy. I still fret over this at times, but I believe it was an informed choice. Thank you for your articles. They always hit home with me.
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craftyc

Member
0 Replies
Posted on
January 24, 2016
my oncologist wanted me to switch to Tamoxafin after my 5 years on "Arimidex". However it does not work with the Avastin I am injected with for my eyes monthly. Last fall I asked a second opinion from another oncologist and they ran a test on my breast tissue and found " that 5 more years of hormone treatment would increase my chances of survival and that I was at high risk for return of the cancer". so I have restarted "arimidex" and I am not looking forward at all to the side effects coming back or bone loss. so it is either no more therapy or Arimidex. and then they want me to take bone med to strengthen them. It is a tough decision to be responsible not only to me for my health, my emotional feelings but to the rest of my family. I hope it was an informed choice. I hope I had all the information available and that I made the right decision. still. I hate taking pills for this and that. (I am glad I took the 2 years off and did not take the Tamoxafin without research or I would have had problems with drug interaction.) The eye injections are for the rest of my life as needed, so far monthly. Thanks. for the other stories.
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Mrs.

Member
0 Replies
Posted on
January 25, 2016
Here is my "take" on this. I am stage 4, so however many years I have left, I will be on an AI, anastrole or letrozole. Hopefully for more than 5 years!!! Diagnosed first in 1994 stage zero, metastasized in 2012. Anastrole gave me the achy joint side effect, so one year into it I switched to letrozole. I have few if any side effects with this one. If and when I do develop side effects, or become drug resistant to it there is a third AI I can take. So right off the bat, there are 3 different AIs, could you ask your doctor about switching to a different one? Also have you investigated Evista? It seems to be the forgotten breast cancer drug. I took Evista for 20 years before I became drug resistant to it. In the STAR trial Evista was tested against Tamoxafin, and the results were so good and so similar, that they ended the trial earlier than expected. Evista worked as well or better than Tamoxafin in supressing estrogen for recurrance. So here is a fourth drug in your suitcase to try!!! It is a SERM, a selective estrogen receptor modulator (blocks estrogen). And it prevents bone loss by fixing the cycle of natural bone building with the clasts and blasts from the inside of the bone unlike the biophosphates which work on the outside of the bone. I'm an advocate for it as it worked on me for 20 years!!! And it repaired my osteopenia! Hopefully there is some language in her for you to discuss with your oncologist! Keep smiling...today is a gift that's why they call it the present! Carol
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Mrs.

Member
0 Replies
Posted on
January 25, 2016
Here is my "take" on this. I am stage 4, so however many years I have left, I will be on an AI, anastrole or letrozole. Hopefully for more than 5 years!!! Diagnosed first in 1994 stage zero, metastasized in 2012. Anastrole gave me the achy joint side effect, so one year into it I switched to letrozole. I have few if any side effects with this one. If and when I do develop side effects, or become drug resistant to it there is a third AI I can take. So right off the bat, there are 3 different AIs, could you ask your doctor about switching to a different one? Also have you investigated Evista? It seems to be the forgotten breast cancer drug. I took Evista for 20 years before I became drug resistant to it. In the STAR trial Evista was tested against Tamoxafin, and the results were so good and so similar, that they ended the trial earlier than expected. Evista worked as well or better than Tamoxafin in supressing estrogen for recurrance. So here is a fourth drug in your suitcase to try!!! It is a SERM, a selective estrogen receptor modulator (blocks estrogen). And it prevents bone loss by fixing the cycle of natural bone building with the clasts and blasts from the inside of the bone unlike the biophosphates which work on the outside of the bone. I'm an advocate for it as it worked on me for 20 years!!! And it repaired my osteopenia! Hopefully there is some language in her for you to discuss with your oncologist! Keep smiling...today is a gift that's why they call it the present! Carol
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