What happens when you stop taking anastrozole?

Posted by kamra @kamra, May 7, 2023

I've been taking anastrozole for six months to shrink tumors in preparation for surgery. I stopped taking it about a week and a half ago as the doctor ordered since my surgery is coming up. I've felt weird and not very well since stopping. I've been tired, kind of dizzy, and just not feeling myself. Anyone have experience with side effects when stopping Anastrozole? Thank you. I go back on it after surgery.

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@phlebotalot041

I have not tried either of those suggestions...for any length of time anyway. I did fail to take it one day and I didn't have a single hot flash that day.
I'll take a break from it for the week and see how that goes. Then I'll consult with my oncologist again next month.
Thanks so much for taking the time to answer.

Jump to this post

Look at Exemestane. I couldn't tolerate Letrozole nor Anastzole.
The other option might be Diindolylmethane supplements, DIM for short.
There are natural options too: mushroom capsules, Genuine Essiac Tea or Jason Winters Tea.
Best to eat ALL natural ORGANIC foods, juice with organic fruits n vegetables, big salads, etc.
Read Chris Beat Cancer.
BEST to concentrate on building up a strong force of Immunity.
JUICE! Carrots, apples, spinach, Kale, lemon, ginger, etc.
YOU are in control of your body.
Read, research.

Pharmaceuticals can be helpful, but they can be harmful, too. Chemistry varies. Theres no one size fits all.

As a Christ follower, I will tell you what I told my oncologist:
“Cancer wont be the DEATH of me; my Sin already is the Death of me. Cancer might be the conduit that God uses to bring me Home, but we all die WITH something; cancer, disease, an accident, etc…. But Biblically, we die BECAUSE of our sin. (Romans 6:23) but read the 2 nd part of that verse!
Eternal life is coming. It beats cancer forever!
“God has not given us a spirit of fear BUT of Power and Love and a Sound Mind.”
2 Tim 1:7
🌸🌷🌺❤️

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@colleenyoung

@phlebotalot041, please consult with your oncologist before pausing medication.

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Indeed. You can't see what you can't see. A few days, a week, a month - could be long enough for cancer cells to rejuvenate and spread throughout your lymphatic system, causing tumours big enough to be seen by an MRI or PET scan.

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If you go on the website for oncodx, it will give you what your results mean. Depending on your age, the results vary. Example, only speaking to my diagnosis and how it was explained by oncodx and the Doctor. Please don’t use this a a guide to your diagnosis. My onco dx test was 25, and I was 65 years of age. I am low risk. To be low risk let’s say someone in their 40s, their score could not be over 15 to be low risk. I don’t remember the range for each category, but it was explained on the website. If you google your score and oncodx you may find more info. This is just a guide tool Oncologist seem to rely on. I also did the breast index test during my 4 th year to see if I would benefit to continue Anastrazole for more than 5 years. My results came back, no benefit so I stopped at 5 years. My heart goes out to you. Taking an AI is a bit different for everyone. I read reports from ladies having horrible problems to ladies going through meds without much problems. I too, wanted to stop, but my Oncologist said, “ you don’t want to do that”. So I finished treatment. Some days were worst than others. It is a personal decision. Get as much info as you can and see what your Doctor says. Maybe get a second or third opinion. Ultimately, it’s your decision to make. I did have one friend who said she beat breast cancer so now she just prays the side effects of the meds don’t hurt her. I do have osteopenia and before treatment was told I had the bones of an 18 year old. I want to be proactive on anything I think the meds or radiation could have damaged. Take care and best outcome.

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@phonso

What do you do if your oncologist never will not tell you what your chances are if you go off the meds. I am on my second oncologist who spends 6 minutes with me and tells me how well I am doing. I have been on three of the meds and have had all the different side effects depending on which one they are. I got rid of the joint pain, but gained the weight gain, depression, hair falling out and melt downs. I just sent my current oncologist a message, however there is no way I can make the decision on whether to stay on this med or not because he won't even tell me if he considers me at high risk or not if I go off. I had a lumpectomy 1 year ago, Onco score was 43. Chemo that nearly killed me. Radiation. Last diagnostic mammo was negative. I was originally stage 1A . No node involvement. MRI negative. Blood work says I have low WBC and platelets after 1 year. I guess thanks to the chemo. Tumor markers within normal range. Recent MRI of my lumbar spine doesn't see any tumors or fractures, however I have osteopenia and tons of bone spurs and narrowing causing horrible sciatica. I too have grandchildren I want to stay alive and active for. I exercise through all the pain. I am normally very stable in the head, however, this is beyond the point of exhaustion. Frankly, if I never see another physician again I am good with that. I can't eat a thing without gaining weight.

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I gained weight on anastrazole Stay on it five years went to weight watchers after the five years lost 13 pounds and glasses I stayed on it. Hair is coming back. Don’t give up.

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@krisabs1127

Hi! I also have osteoporosis and am taking Anastrazole, but I am new to it. My doc informed me there is an alternative to Fosamax. Fosamax is not well absorbed. The alternative is a once a year, 15 minute IV drip. I have not yet had it but I understand the side effects are nearly non existent. I hope this helps.

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Keep reading up on whatever they are suggesting for the IV drip.
I'm very skeptical of taking someone's word for it, after my experience(s) with Anastrozole and Tamoxifen.

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@colleenyoung

Hi @phlebotalot041, whether to stay on an aromatase inhibitor or not is an individual calculus weighing the pros and cons, i.e, reducing chance of recurrence vs managing side effects and quality of life. It is a personal choice best made with your oncologist. There may be other options for you that you can talk about such as trying a different aromatase inhibitor. Your oncologist can also share the realities of potential risk of recurrence according to your diagnosis specifically.

Have you talked to your oncologist about trying a different aromatase inhibitor or taking a treatment break to see if the hot flashes go away?

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After I showed up in my oncologist's office and tried to tell him what the side effects of Anastrozole were, for me, he did not discuss any alternative,. He said, "Don't take it then," got up and walked out. What a guy!

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@phonso

What do you do if your oncologist never will not tell you what your chances are if you go off the meds. I am on my second oncologist who spends 6 minutes with me and tells me how well I am doing. I have been on three of the meds and have had all the different side effects depending on which one they are. I got rid of the joint pain, but gained the weight gain, depression, hair falling out and melt downs. I just sent my current oncologist a message, however there is no way I can make the decision on whether to stay on this med or not because he won't even tell me if he considers me at high risk or not if I go off. I had a lumpectomy 1 year ago, Onco score was 43. Chemo that nearly killed me. Radiation. Last diagnostic mammo was negative. I was originally stage 1A . No node involvement. MRI negative. Blood work says I have low WBC and platelets after 1 year. I guess thanks to the chemo. Tumor markers within normal range. Recent MRI of my lumbar spine doesn't see any tumors or fractures, however I have osteopenia and tons of bone spurs and narrowing causing horrible sciatica. I too have grandchildren I want to stay alive and active for. I exercise through all the pain. I am normally very stable in the head, however, this is beyond the point of exhaustion. Frankly, if I never see another physician again I am good with that. I can't eat a thing without gaining weight.

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I'm on my 3rd oncologist, who seems to care whether I live or die (unlike #1 in Illinois, who only saw me 2x in 7 months on Anastrozole). I was always pawned off on "the minions," which were a series of look-alike tall thin blonde P.A's girls with names like "Heather" who constantly told me on the patient portal (my only way of ever reaching my oncologist) that, "This is a question you should take up with the doctor at your next face-to-face meeting." (hahahaha), I was diagnosed 12/7/2021. I immediately began inquiring about an oncotype and he said, "You don't need one." (As it turns out, I DID need one, which I did not get for 17 months until I was in Texas. It was 29. I have been told that I would have had 3 bouts of chemo if I had been in Texas initially). The other drawback of not ordering an oncotype for the patient is that, without it, there is no indication of how aggressive the tumor might be, so the patient has no idea about the odds of its recurring. I go between Texas and the Midwest and now I have to drive 3 hours to be seen when I am in Illinois, to the University of Iowa Hospitals and Clinics, where the oncologist who has seen me 3 times there has never once examined me, physically. (He told me at appointment #2 that he was going to examine my mutilated right breast at visit #3, but he did not.) I am scheduled again, and my appointment on a Friday is literally giving me 15 minutes (4:45 p.m.). Thankfully, my Texas oncologist spent a very long time with me, gathering the names and hospitals of my previous treatment and vowed to get me an oncotype, but that didn't happen until I had asked (and asked and asked) for literally all of 2022 and it was the spring of 2023. He agreed that, after my cessation of taking Anastrozole (my left knee blew out and crippled me for 6 months, which I spent hobbling with a cane and in a wheelchair) for a full 9 months, that ship had sailed. I found out from my radiologist that my Illinois oncologist was well-known to be opposed to ordering any expensive test(s) for his patients, because he "doesn't want to get dinged by Medicare." So, if you are his patient, good luck to you! Three of my former students who grew up to work for me actually said, "He killed our mother" when they learned who my Illinois oncologist was. He refused to run a test (no doubt pricey) to determine if her breast cancer had spread. It had (to her pancreas) and, while they attempted to take her to the Mayo Clinic, he did everything he could to block their ability to transfer her, including saying, "I don't know why you want to go there, I interned there, I know everything they know." He also told her three daughters, "After I talk to you three, I need therapy." She ended up in hospice and died. He is no longer my doctor, needless to say, but his negligence in not taking into account that I had been in a study for osteoarthritis from 1997 to 2020 (the MOST study) and had a family history of bad joint pain, plus an injury to my left knee, semi-crippled me on September 15, 2022 and my left knee will never be the same (I have to brace it to walk any distance, and, when I was taking the pills (Anastrozole and Tamoxifen) I had the worst pain I've ever had in my life , and I've had 3 major surgeries and given birth twice. I attempted to learn how to tolerate the A.I, pills (Anastrozole) for 7 months, went off everything for 9 months after my knee blew out (no injury; just quit working and was excruciatingly painful, like a meniscus tear) I resumed taking Tamoxifen for 5 months on April 23, 2023, and discontinued it on Aug. 30, 2023 after extreme exhaustion and non-stop UTIs and that was "it" for me. I quit taking the pills because it was literally ruining my life. I did voluntarily submit to 33 radiation sessions, despite being told (by Iowa City) 3 days before I was scheduled to start, that they would not have radiated me because "you're a woman in your 70s." (78, to be precise), I am feeling so much better since I quit taking the toxic "adjuvant therapy" pills and I am hoping and praying that the radiation worked and that medicine will come up with a better test to monitor for those of us who cannot tolerate the A.I. pills and/or Tamoxifen. I just had a CT scan with contrast last Tuesday because my liver enzymes are elevated and it did not show anything "bad" but that is why I hope that some test (Signaterra?) can be used to help me stay on top of how I'm doing. My Texas oncologist, when I asked about mammograms every 6 months, said, "I'm not worried about it going to your breast. I'm worried about it going somewhere else." Since my father had colon cancer which traveled to his liver and killed him in 6 months' time, I am grateful that my Texas oncologist is being proactive in helping me monitor my situation, but, since my original presentation was 1A, 11 mm, no spread, good margins, but 95% estrogen positive, I was not "bad" enough to secure the doctor's order(s) to perhaps run the Signaterra test to track things---but perhaps it will change.

REPLY
@ebtexas55

Look at Exemestane. I couldn't tolerate Letrozole nor Anastzole.
The other option might be Diindolylmethane supplements, DIM for short.
There are natural options too: mushroom capsules, Genuine Essiac Tea or Jason Winters Tea.
Best to eat ALL natural ORGANIC foods, juice with organic fruits n vegetables, big salads, etc.
Read Chris Beat Cancer.
BEST to concentrate on building up a strong force of Immunity.
JUICE! Carrots, apples, spinach, Kale, lemon, ginger, etc.
YOU are in control of your body.
Read, research.

Pharmaceuticals can be helpful, but they can be harmful, too. Chemistry varies. Theres no one size fits all.

As a Christ follower, I will tell you what I told my oncologist:
“Cancer wont be the DEATH of me; my Sin already is the Death of me. Cancer might be the conduit that God uses to bring me Home, but we all die WITH something; cancer, disease, an accident, etc…. But Biblically, we die BECAUSE of our sin. (Romans 6:23) but read the 2 nd part of that verse!
Eternal life is coming. It beats cancer forever!
“God has not given us a spirit of fear BUT of Power and Love and a Sound Mind.”
2 Tim 1:7
🌸🌷🌺❤️

Jump to this post

Did you have any problems with the Exemestane? My doctor just switched me to it because I was having some bad side effects from Anastrozole.

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@reginacrick

Did you have any problems with the Exemestane? My doctor just switched me to it because I was having some bad side effects from Anastrozole.

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No problems for about 4 years. I had a heart incident. I cant blame Exemestane because the cardiologist said i either passed a clot or had an arterial spasm. He asked if Exemestane was a pro thrombotic. I had a friend research it and theres a 1% effect with certain people.
I just wanted you to know, not to spread fear.
Personally, I would give it a try. See how you do for 3 months.
If you have any type of side effects, stop it n discuss with your doctor.
Take a look at DIM.
I’ve heard people say its a good alternative.
I actually may consider it myself.

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@einnoc

After I showed up in my oncologist's office and tried to tell him what the side effects of Anastrozole were, for me, he did not discuss any alternative,. He said, "Don't take it then," got up and walked out. What a guy!

Jump to this post

I would think about getting another Oncologist! They are trying different medications for me to see if they can lessen the side effects.

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