stop the madness

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....

What is als?

I’ve been doing a lot of reading /research about ‘low estrogen’ in women since I started taking AI’s. Many of the symptoms of the meds we take to lower our estrogen with an AI, to prevent recurrence of breast cancer, are the very same symptoms, but intensified that we have going through menopause. But being on these estrogen reducing drugs is like going through menopause intensified! It’s no wonder we’re miserable! For those of us who have already experienced menopause, lowering our estrogen even farther with drugs to prevent recurrence of cancer is really challenging. No wonder we’re miserable, it’s like we’re going through an intensified menopause! Ugh!!

I’ve been doing a lot of reading /research about ‘low estrogen’ in women since I started taking AI’s. Many of the symptoms of the meds we take to lower our estrogen with an AI, to prevent recurrence of breast cancer, are the very same symptoms, but intensified that we have going through menopause. But being on these estrogen reducing drugs is like going through menopause intensified! It’s no wonder we’re miserable! For those of us who have already experienced menopause, lowering our estrogen even farther with drugs to prevent recurrence of cancer is really challenging. No wonder we’re miserable, it’s like we’re going through an intensified menopause! Ugh!!

I read a great article about estrogen starvation and what it can do to the brain. I was having hand tremors at first as a side effect, which has now travelled to my head. I have onset Parkinsons now. I stopped the AIs completely 4 weeks ago and the pains are much less, and I have more control over the head shakes. Of course the onco says it is not a side effect, even tho I sent her the article, and my dr just refers me to the cancer clinic....

@jeaniebean
I am so sorry you are experiencing all of those head shakes. It is true, when you ask a doctor about the side effects we experience, the first thing out of their mouths usually is that they don't believe it is related to the AIs. It's like we have to do the research and actually present it to them when you would think it would be the other way around.

@jeaniebean I tried all the AI's and they all did horrible things to me. I think it's much more common than doctors acknowledge. An oncologists job is to take care of your cancer. Unfortunately, for many doctors that's where it stops. But quality of life is so important. I was early stage and had a bi lateral mastectomy - so my doctors weren't as concerned about the AI's. I felt like a big, black shadow covered me while on Letrozole and Tamoxifen. The pain was immediate and severe to my joints, especially my hands but the most worrisome was the mood alteration. I felt so depressed and disconnected. Ask for ongoing blood tests for your hormone levels, tumor markers, etc. You'll know if things are going 'sideways' that way and it might give you some calm knowing where you stand. I'm at five years now without cancer recurrance and holding, ha ha. Other problems are creeping up and it's patch, patch, patch but at least these past five years have been more tolerable without pain and mood problems. Hugs.