SERMs and AIs - Choosing not to take them

Posted by bpickartz @bpickartz, Thu, Aug 15 7:30am

I had a SMX, Stage I, no lymph node involvement, four weeks ago. I'm HER2 Negative, ER Positive and PR Positive. I've had open heart surgery for Hypertrophic Cardiomyopathy and Afib. Many years ago (50 years) I had blood clots in my lungs attributed to birth control pills, so I've never taken hormones. I've read all the side effects and am inclined not to take these medications. Has anyone else opted not to follow their doctor's advice about this protocol?

Liked by trixie1313

@bpickartz, I think you'll be interested in participating in this discussion
– Aromatase Inhihibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/

Would you like me to move your message there?

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@colleenyoung

@bpickartz, I think you'll be interested in participating in this discussion
– Aromatase Inhihibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/

Would you like me to move your message there?

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I think I'd rather leave it here. I'd like to hear about SERMs and AIs. Thanks anyway.

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YOU are in charge of your healthcare. Your physicians are your advisors, but the final decisions about what medications you take is up to you. That being said… and I can only speak for myself, I was diagnosed following a routine mammogram like many of us here. They found a suspicious growth, then did a biopsy to diagnosis cancer. Following diagnosis, I did my research and sought out the very best oncologist and health care professionals I could find in my area. I asked lots of questions, researched on line, and talked to my trusted gynecologist and physicians that I’d been seeing for years. When I made my decision on a breast cancer specialist, I was certain I am seeing an oncologist who is an expert and knows her stuff!! I am very open and honest with her about how I feel both physically and emotionally. She listens to me and offers her professional views, opinions, and advise about treatment. She leaves the final decisions up to me. I don’t like the side effects, I certainly don’t enjoy taking a bunch of meds that cause me not to feel my best self. But I think I’d be a total FOOL not to listen to and follow her professional advise. Nobody gets out of this life alive…I’ll learn to live with the side effects rather than the risk of cancer returning.

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@lisman1408

YOU are in charge of your healthcare. Your physicians are your advisors, but the final decisions about what medications you take is up to you. That being said… and I can only speak for myself, I was diagnosed following a routine mammogram like many of us here. They found a suspicious growth, then did a biopsy to diagnosis cancer. Following diagnosis, I did my research and sought out the very best oncologist and health care professionals I could find in my area. I asked lots of questions, researched on line, and talked to my trusted gynecologist and physicians that I’d been seeing for years. When I made my decision on a breast cancer specialist, I was certain I am seeing an oncologist who is an expert and knows her stuff!! I am very open and honest with her about how I feel both physically and emotionally. She listens to me and offers her professional views, opinions, and advise about treatment. She leaves the final decisions up to me. I don’t like the side effects, I certainly don’t enjoy taking a bunch of meds that cause me not to feel my best self. But I think I’d be a total FOOL not to listen to and follow her professional advise. Nobody gets out of this life alive…I’ll learn to live with the side effects rather than the risk of cancer returning.

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I followed much the same path. My oncologist came recommended by gynecologists (who happen to be my best friends) and by friends who had worked with him during their surgeries. I am confident that he's got my best interest in mind. If I wasn't dealing with both a history of blood clots and heart issues, He understood that my cardiologist wasn't comfortable with radiation and agreed with him, so a lumpectomy was ruled out.

The side effects I might be able to deal with but those, combined with my history and existing health concerns, have me leaning toward forgoing these drugs. Bone loss, heart issues, and blood clots are just too scary. Tuesday my husband and I sit down with the doctor. If the chances of reccurence aren't high, I'm going to decline. I agree that no one gets out alive, but I want my final years to be as good as they can be.

My mother was diagnosed at the same age I am (68). She had a mastectomy, no radiation or chemotherapy, and no long term therapy. I'm not sure that was even an option 34 years ago. She lived well for 20 more years and didn't have cancer when we lost her.

Unless the doctor can offer a compelling argument and after a second consultation with my gynecologists/friends, I'm leaning toward refusing a SERM or AI.

Can I ask what you take, how long you've been on it, and what the side effects are? Learning more about what to expect from real people will help me make a decision. Thanks much.

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@bpickartz

I followed much the same path. My oncologist came recommended by gynecologists (who happen to be my best friends) and by friends who had worked with him during their surgeries. I am confident that he's got my best interest in mind. If I wasn't dealing with both a history of blood clots and heart issues, He understood that my cardiologist wasn't comfortable with radiation and agreed with him, so a lumpectomy was ruled out.

The side effects I might be able to deal with but those, combined with my history and existing health concerns, have me leaning toward forgoing these drugs. Bone loss, heart issues, and blood clots are just too scary. Tuesday my husband and I sit down with the doctor. If the chances of reccurence aren't high, I'm going to decline. I agree that no one gets out alive, but I want my final years to be as good as they can be.

My mother was diagnosed at the same age I am (68). She had a mastectomy, no radiation or chemotherapy, and no long term therapy. I'm not sure that was even an option 34 years ago. She lived well for 20 more years and didn't have cancer when we lost her.

Unless the doctor can offer a compelling argument and after a second consultation with my gynecologists/friends, I'm leaning toward refusing a SERM or AI.

Can I ask what you take, how long you've been on it, and what the side effects are? Learning more about what to expect from real people will help me make a decision. Thanks much.

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I was on Anastrozole for about 4 months and I broke out in some pretty severe hives. My doctors aren’t sure why I broke out with skin issues, but hives are a rare side effect of Anastrozole. So my oncologist switched me to Tomoxifin, 10 mg., and I’ve been fine. My worst side effect of both Anastrozole and Tomoxifin has been brain fog, and difficulties with memory. By googling those drugs and learning all I can about them, I have found that some memory and cognitive function problems are indeed a side effect. Since my cancer was a very slow growing type, my oncologist gave me a break from these drugs for about 4 months to see if it makes a difference. It’s night and day where my cognitive function is concerned! I absolutely hate not being able to think clearly!! I see Dr. Saundra Buys, my oncologist, again at the end of September and we’ll discuss what to do then. But if she feels that going back on meds. at that time is in my best interest, then I’ll follow her advise. She may advise an alternative medication, or some other solution. But I trust her judgement and know she has my best interest at heart. Cancer sucks!!!

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@lisman1408

I was on Anastrozole for about 4 months and I broke out in some pretty severe hives. My doctors aren’t sure why I broke out with skin issues, but hives are a rare side effect of Anastrozole. So my oncologist switched me to Tomoxifin, 10 mg., and I’ve been fine. My worst side effect of both Anastrozole and Tomoxifin has been brain fog, and difficulties with memory. By googling those drugs and learning all I can about them, I have found that some memory and cognitive function problems are indeed a side effect. Since my cancer was a very slow growing type, my oncologist gave me a break from these drugs for about 4 months to see if it makes a difference. It’s night and day where my cognitive function is concerned! I absolutely hate not being able to think clearly!! I see Dr. Saundra Buys, my oncologist, again at the end of September and we’ll discuss what to do then. But if she feels that going back on meds. at that time is in my best interest, then I’ll follow her advise. She may advise an alternative medication, or some other solution. But I trust her judgement and know she has my best interest at heart. Cancer sucks!!!

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@lisman1408 I also broke out in a rash over most of my body starting in my scalp, underarms, lets, etc. Yikes…what we have to go through! But the bone aches and joint pain are the worst.

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My side effects on anastrozole are joint pain, hands and feet pain, insomnia, hair loss, fatigue, and feeling about 174 years old instead of 74. i am on week 4 of a six week break, just to see how i feel. Then I plan to go back on them. HOWEVER, not everyone has side effects. My sister-in-law was on it for 5 years with no side effects. People without side effects will most likely not be posting here.

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Speaking from experience of 2 SERMS and 2 AIs, I would suggest you try what is recommended by your oncologist. See how you do. If one of the SERMs is unacceptable, try the other. If the first prescribed AI is unacceptable, try the other 2. Once you know how you on the drugs, then you can decide if it is worth taking them. If the side effects are intolerable, at least you'll know why you opted out and that you tried. The side effects go away when you stop the drug, especially if you halt it after a few months before permanent damage is done. All of my horrendous side effects disappeared within 30 days of halting the various drugs. After 3 failures that produced intolerable side effects or sent me to ER with what appeared to be a heart attack, one of the drugs has been fine and I've been on it a year.

A variety of studies show from 25% to 50% of women do not complete the duration of the prescription due to side effects.

Liked by bpickartz

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Please let us know which of the drugs you have been on for a year and that is working for you.

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Yes, I chose not to take them after trying each one, for just a couple days…side effects awful. I am almost three years of just having lumpectomy…no chemo needed, did not do radiation either…as no way to get there for six weeks, and I am 82. So far no recurrence….!!

Liked by bpickartz

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@cctoo

Yes, I chose not to take them after trying each one, for just a couple days…side effects awful. I am almost three years of just having lumpectomy…no chemo needed, did not do radiation either…as no way to get there for six weeks, and I am 82. So far no recurrence….!!

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Everything I've read has led me further from them. I wish you 20 more healthy, cancer-free years.

Liked by farmgirl1556

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@lisman1408

Please let us know which of the drugs you have been on for a year and that is working for you.

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Because side effects differ so greatly for every person and for every drug, I hesitate to state my own particulars, which may not apply to others, and prefer to emphasize trying the different medications in hopes that one works for you.

Evista/Raloxifene, which is the least effective of the 5 ( the other 4 being Tamoxifen, Armidex/Anastrozole, Femara/Letrozole, Aromasin/Examestane) has been ok for me now that I have strategies in place to reduce the frequency and severity of leg cramps when I sleep. I stretch my calves and lower legs often during the day, before bed, and if I have been particularly active or doing new activities, I get up in the middle of the night to stretch. No other side effect for me that I am aware of besides leg cramps. And I was prone to leg cramps before taking the drug, and my mother gets leg cramps too, starting at about the age I am. The oncologist told me that my weight and blood pressure mean the risk of blood clots are not elevated for me by taking Evista/Raloxifene.

Best wishes to you all in your decisions. It would be great if a better alternative without frequent side effects were developed.

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@bpickartz

Everything I've read has led me further from them. I wish you 20 more healthy, cancer-free years.

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Thank you, and wish same to you. The reason for side effects Kettering that they remove every bit of hormones needed by our bodies to keep us well!!!

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And I could not function of I had a heart attack, or broken hip !! It is quality over quantity perhaps we are choosing.

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I have no side effects at all with Evista, but did not know we could take that in place of the others…I was talking my it for osteoporosis.

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