stop the madness

Posted by jeaniebean @jeaniebean, Nov 22, 2020

I just stopped taking my AIs. I just cannot take it anymore. In 3 days I can walk again, I have clear brain thinking, my fingers dont ache, my bones dont ache, and I am not afraid anymore......

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@cctoo

Good for you!! I am in remission after only lumpectomy in Oct. 2016. Did nothing else. Tried all three e aromatase inhibitors.... For a few days..side effects too bad!! Also skipped radiation. Hope I my god luck will last.....those treatments seemed worse than the disease!!!

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Update: ultrasound found enlarged lymph node..biopsy said recurring bc....blood tests all normal scans too..Ser oncologist on Aug 11.

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@jeaniebean

I now have onset Parkinsons from the lack of estrogen to the brain. I have stopped everything for a couple of months and will see in the new year. I have my 1 year mammo, and had my incision drained again, and feel better now than a long time. My head still shakes like crazy, especially if I exert myself, but I will play a bit until it comes back...... I want to live a proper life....

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I have been off them for 3 years now after only taking for 6 months, and I still get head tremors. My doctor just shrugs them off. The damage from these drugs is so debilitating for some. I just dont see there worth, if I cant walk, use my hands, tremors, bend fingers, bend toes. etc etc etc. The healthy diet with no meat or dairy is all that has helped me. I walk every day now, but it still hurts. My head is shaking as I type....... My neck gets very sore. Chair yoga has helped me quite a bit.

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@windyshores

None of the women I know personally had significant side effects, and I found that walking more than 40 minutes greatly reduced joint pain. This is not to dismiss the experience of those who do have problems with the meds.

I think we need to keep in mind that risk of cancer recurrence may justify enduring a certain level of side effects. I fear that online forums tend toward the negative and may even contribute to the non-compliance statistics. I am 7 years out and grateful for Femara.

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You are one of the lucky ones. This is the only forum I have found that allows freedom to speak about the debilitating side effects. If you are over 60 it seems to hit harder. I am thankful there are other options, and I value quality of life to quantity at my age. Glad it worked for you. I also walk every day for an hour, but couldnt walk at all on the drugs.

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@cctoo

Update: ultrasound found enlarged lymph node..biopsy said recurring bc....blood tests all normal scans too..Ser oncologist on Aug 11.

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Hard news to take in. Hopeful for some good news on Aug 11 appointment.
Thinking of you and sending prayers

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I have been reading these posts because I have realized that I have anxiety and am wondering if the anastrozole could be causing it. I also take bupropion...which is supposed to be for anxiety I think. Long story short, I have had BC twice...in 2007 and 2018. I was out of control nuts after the second diagnosis. My first oncologist from the second occurrence did prescribe anastrozole, but would not give me anything for anxiety. He told me to take Xanax even though I pleaded for help. He wanted me to go for psychological therapy. After other issues with him, I asked my PCP for help and she immediately prescribed bupropion. Thank God! I finally started feeling in control of myself and much better mentally. I got rid of oncologist #1 and oncologist #2 and now have an excellent doctor that listens and helps me. I then found out that I had a genetic mutation that could cause breast cancer, so in 2020, I had a bilateral mastectomy with diep reconstruction. The fear of getting cancer again has greatly diminished which I thought was part of the reason for my anxiety. I have been lucky with the anastrozole in that I very seldom have physical issues....occasional pains in the wrists and minor lack of movement as well as minor shaking occasionally in the left hand. I get plenty of exercise and that may be why the physical issues are easy for me. The anxiety is a problem and I never gave a thought to the fact that the anastrozole could have something to do with it until last night when I was telling two different friends about a minor continuing problem I have been having with my car and how upset I was over it. The one told me to just calm down and it is very fixable. The other friend (who has also had cancer) suggested that my anxiety could be enhanced because of the drugs I am taking. She did not know that I have had cancer. I have been taking other drugs for long term unrelated issues and have not had increased anxiety because of them. So, I feel that this anxiety could be affected by one or both of these drugs. Has anyone else felt hyper anxious on the anastrozole?

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@windyshores

None of the women I know personally had significant side effects, and I found that walking more than 40 minutes greatly reduced joint pain. This is not to dismiss the experience of those who do have problems with the meds.

I think we need to keep in mind that risk of cancer recurrence may justify enduring a certain level of side effects. I fear that online forums tend toward the negative and may even contribute to the non-compliance statistics. I am 7 years out and grateful for Femara.

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I had breast cancer 30 years ago and had chemo.
I follow this group and I see that many women suffer side effects of some kind from current treatments. I also know that some people have low tolerance to many drugs- we are all genetically different.
I don’t know if the oncologists nowadays know how many patients are non compliant and that these patients may benefit from re- education of their medication’s role in avoiding recurrence of the cancer and see if there are other options if needed.
I agree that many women avoid telling their doctors that they stopped treatment.

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@astaingegerdm

I had breast cancer 30 years ago and had chemo.
I follow this group and I see that many women suffer side effects of some kind from current treatments. I also know that some people have low tolerance to many drugs- we are all genetically different.
I don’t know if the oncologists nowadays know how many patients are non compliant and that these patients may benefit from re- education of their medication’s role in avoiding recurrence of the cancer and see if there are other options if needed.
I agree that many women avoid telling their doctors that they stopped treatment.

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More people with side effects tend to post on forums, which scares us all. I am especially sensitive to medications. I tried anastrazole generic, letrozole generic and then ended up with brand name Femara. My doc also said I could take it alternate days. True compliance is telling doctors about our side effects and working with them to try to reduce them. At least around the edges. I would endure significant side effects to reduce my risk (and am enduring significant side effects on Tymlos for bones) but I have kids who aren't settled yet.

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@sandyjr

I have been reading these posts because I have realized that I have anxiety and am wondering if the anastrozole could be causing it. I also take bupropion...which is supposed to be for anxiety I think. Long story short, I have had BC twice...in 2007 and 2018. I was out of control nuts after the second diagnosis. My first oncologist from the second occurrence did prescribe anastrozole, but would not give me anything for anxiety. He told me to take Xanax even though I pleaded for help. He wanted me to go for psychological therapy. After other issues with him, I asked my PCP for help and she immediately prescribed bupropion. Thank God! I finally started feeling in control of myself and much better mentally. I got rid of oncologist #1 and oncologist #2 and now have an excellent doctor that listens and helps me. I then found out that I had a genetic mutation that could cause breast cancer, so in 2020, I had a bilateral mastectomy with diep reconstruction. The fear of getting cancer again has greatly diminished which I thought was part of the reason for my anxiety. I have been lucky with the anastrozole in that I very seldom have physical issues....occasional pains in the wrists and minor lack of movement as well as minor shaking occasionally in the left hand. I get plenty of exercise and that may be why the physical issues are easy for me. The anxiety is a problem and I never gave a thought to the fact that the anastrozole could have something to do with it until last night when I was telling two different friends about a minor continuing problem I have been having with my car and how upset I was over it. The one told me to just calm down and it is very fixable. The other friend (who has also had cancer) suggested that my anxiety could be enhanced because of the drugs I am taking. She did not know that I have had cancer. I have been taking other drugs for long term unrelated issues and have not had increased anxiety because of them. So, I feel that this anxiety could be affected by one or both of these drugs. Has anyone else felt hyper anxious on the anastrozole?

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I read everything that I could find on anastrozole, including hours spent on Google Scholar, and haven't seen anxiety mentioned as a side effect. Anxiety is sometimes triggered by menopause, e.g., lowering estrogen levels, so maybe a consequence of that effect,, but that tends to decline. General anxiety levels certainly increased from covid, lockdown, political polarity, inflation, etc.

And you're dealing with more than one issue personally so that's a challenge too. I'd review the meds you're taking with your PCP and maybe pharmacist as well to see if there are any contraindications or anxiety side effects. But also realize that you've survived a lot and sometimes the body experiences delayed anxiety as a kind of relief and safety valve. If that sounds possibly explanative, you can put it in perspective and gain distance from it, while doing a lot of self-support stuff like meditating, nature walks, drawing, and other activities to kind of stay grounded in the present that you can control. It sounds simplistic but can be empowering.

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@astaingegerdm

I had breast cancer 30 years ago and had chemo.
I follow this group and I see that many women suffer side effects of some kind from current treatments. I also know that some people have low tolerance to many drugs- we are all genetically different.
I don’t know if the oncologists nowadays know how many patients are non compliant and that these patients may benefit from re- education of their medication’s role in avoiding recurrence of the cancer and see if there are other options if needed.
I agree that many women avoid telling their doctors that they stopped treatment.

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Every time I read the word 'cancer' and the phrase '30 years ago' I regret that the person had cancer at all but am deeply encouraged by the '30 years ago'! Thank you for reminding us that it can happen.

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@lovethedesert

I'm in total agreement. keep a watchful eye and do your mammos, It's taken me 4 months to find a proper oncologist (see him on Friday,) but had long discussions with my surgeon, partial mastectomy and lymph nodes clear. Radiation, meds therapy make me feel this is all worse than the disease. Pray for true cure, but many dr don't want to put "us in charge" It's journey for sure, and thankful for this platform.

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Is partial !are to my same as lumpectomy?

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