Concerned about the side effects of anastrozole

I hope you are all having better days. I am 65 years old & been on anastrozole for 13 months. I started to experience increased fatigue, insomnia, hot flashes, increased joint pain, depression, thinning hair, & dry skin within the first few months. I had a small lumpectomy in Sep 2016 for pleomorphic LCIS, which is treated as DCIS, but the margins weren't clear enough. My husband passed away Dec 2016 after 3 1/3 years of declining health & becoming an invalid with me as the primary caregiver/health navigator/saddening wife & best friend. I then had a larger lumpectomy with reconstruction in Feb 2017 and concurrently started hormone therapy. Breast reduction of the left breast was done at the same time of the last lumpectomy because the amount of right breast tissue taken was so large, there was gross disparity in size. Due to healing problems with the surgical sites, I couldn't start radiation therapy til Jun 2017. I couldn't discern if the symptoms were grief, hypothyroid, arthritis, fibromyalgia, aging, radiation, &/or anastrozole. I have just developed new onset moderate to severe hand pain within the last month or so. In addition to an active prayer life, I take a medication regimen that keeps me balanced, positive, moving, & functional - antidepressants (Cymbalta, welbutrin), trazodone (sedative to get to sleep), D3, gabapentin, Armour (thyroid), aspirin, Ubiquinol (CoQ10), Aleve, fish oil, joint support formula, & of course, anastrozole. I take other meds for bladder control & GI reflux. I'm counting the months until the 5 years are up to see what all goes away or decreases. In the meantime, I don't want any form of cancer so I will do what the oncologists/surgeons deems most appropriate & tolerate the SE. "May the wind be at your back, the sun in your face, and the love of God in your heart!"

Hello, Colleen ~ Thank you for your kind letter~ I appreciate it!
I had a colonoscopy 10 years ago as a "baseline" and it was completely clear. The gastroenterologist sat down with me (and my husband who is a G.P.) and gave us the all clear and said he would see me in 5 years. My husband mentioned that (at that time) the test was recommended ever 10 years for a person with a clear scope and no family history. The gastro. replied that he thought I had a family history, and that I did not need one for 10 years. Easy mistake. This year, 10 years to the month after my 1st colonoscopy, I received a form letter from the gastro's office stating that I was due for my colonoscopy. After no reply from me, my internist's office then called me and said it was time for my colonoscopy. I said I would rather opt for something less invasive. He suggested ColonGuard and so I concurred. However, having several other medical issues, I did not immediately send in the test. Several weeks later I received a letter from ColonGuard offering me a $30.00 gift card if I would send my specimen back before 3/15/18. I thought, "what the heck?" ~ Yesterday my internist called with my positive results and said that his office would set up my colonoscopy. He reassured me that 8 out of 10 ColonGuards do not reveal cancer but can find polyps. The positive result shook me. That is when my husband mentioned the state of medicine these days and brought up several topics, mentioning that if I had not returned the ColoGuard, my internist would not be paid for the procedure.I must sound like a conspiracy theorist ~ But several of the things my husband said rang true. I have decided to do an at-home FIT. If it is negative, I have a problem. If it is POSITIVE, I'll be off like a shot to get my colonoscopy!By the way, I too treated my first prep like a day at the spa! Lot's of fancy waters, a stack of magazines in a basket in my bathroom, aromatherapy, etc! I truly didn't mind it very much. I did enjoy the anesthesia! Not that I would make a habit of having surgeries for the pleasant floating trip to lala land!  

Hi Mary @mollymiller, Imagine I've just poured you a cup of tea and we're sitting down together. If I were sitting across from you right now, this is what I would tell you. Thank goodness that you did the ColonGuard test. While it has a high false positive rate, you can get a colonoscopy to make sure. The best thing about screening for this type of cancer is that it can be stopped in its tracks. Colon cancer is very slow growing. It often starts with stage 0 polyps which IF you have any, they can remove during the colonoscopy.

The preparation for a colonoscopy is icky! I'm not going to lie, but in hindsight it really isn't that bad. I try the mind over matter thing and pretend I'm at some fancy spa doing a cleanse LOL. I've had 2 colonoscopies because of high familial risk. The second one they found a nasty polyp and removed it. I was so relieved that I hadn't delayed the procedure.

Here's another little thing to make you giggle. Like you, I'm not a great sleeper. The deep rest that I awake from after a colonoscopy is my fringe benefit -- that along with the warm blankets. Spa? Well no, but imagining that it is helps me. We can get through this together.

Would you like another cup of tea?

I have just received  a call from my internist telling me that my ColonGuard test was positive and that I need to have a colonoscopy. Apparently this test has an 80% false positive rate, so I don't even know why I bothered. I am terrified of the colonoscopy, assuming that I have another cancer site. Also, for the last 4 months I have been developing very painful sore throats and mouth sores. I have only been on Arimidex for 9 months. The joint pain, hot flashes,fatigue, etc. were tolerable but I cannot continue feeling like I have the flu every other week. I will see my oncologist in 3 weeks. I am totally anxiety riddled and am being treated for depression (an ongoing problem) although the depression hardly ever goes away.  I appreciate your response. I generally avoid support groups ~ They either scare me or make me more nervous about my breast cancer.

I am happy that you’ve adjusted to Anastrozole and are investing in a proactive mode. The joint pain and dry skin were too much, as well Aromasin.
I’ve been on Letrozole going on 4 months and it has literally been 9 days that I realized my joint pain has dramatically lessened — and I am thrilled!!! I still have joint issues in my hands and wrists, but I’m feeling hopeful and if things continue like this, I can tolerate this for my 5 year commitment.
I am so relieved.

I've been on Anastrozole for almost 2 years. At first I really suffered from joint pains, but that eased with time. It has severely affected my bones and my hair seems to be falling out a bit more than I'd expect, but I don't know if that's age or the Anastrozole. It also has caused hot flashes, skin dryness and fatigue. I'm post menopause, so some of these issues I would expect with age, but I never really experienced hot flashes before and my skin was a bit dry, but nothing like it is now. Still very thankful this option is available though and have no plans of stopping.

Hello @rosiemolano,

Welcome to Connect. I can only imagine what a rough journey you've been on for the past two years. Thank you for sharing and reaching out to the Connect community. While we wait for others to share their insights and thoughts, I thought you might wish to read these two studies I found online, about management of aromatase inhibitor induced musculoskeletal symptoms:

– http://www.croh-online.com/article/S1040-8428(16)30235-9/fulltext
– https://source.wustl.edu/2011/07/vitamin-d-relieves-joint-muscle-pain-for-breast-cancer-patients-2/

@rosiemolano, we'd really like to get to know you better; would you share a few more details? How are you managing the side effects at present?

I would recommend that women with hormone positive breast cancer ask their oncologists to check their hormone levels before using the drugs, during and after. I was unable to take the drugs due to side effects, but was always worried about my Estrogen levels (due to estrogen positive breast cancer). At my two year checkup (I have check ups each 6 months with various tests) I asked if they could check my Estrogen levels for me. They usually don't because they assume most breast cancer patients are taking the pills. Well..........my estrogen levels are no where to be found, they are virtually non-existent. I did lose 25-30 pounds and have been fairly strict with diet, exercise, vitamins and the like. Looks like my body decided for me not to have estrogen on it's own! I'm not saying that it will stay that way or that I'm very confident the cancer won't return that's feeding on that estrogen BUT.......if you're having a really hard time with the aromatase or tamoxifen, perhaps getting a baseline on your hormone levels could be of some help. Also, despite not taking the pills.....I have hair thinning, some achy joints (not nearly as bad as when on the meds) and other symptoms of low estrogen. My bone scans show some slight loss but nothing like what I hear about with the meds. Just a thought that might help some women to move forward if the pills are making your life too difficult.

yes, I have and just need some honest answers and reall attention to my complaints

I started Anastrozole immediately after my mastectomy in 2016, my oncol. did not discussed sideeffects. I did however notice he was overly concerned about my ankles and pain in ankles-I had no complaints. Now in 2018, I have sleepless nights, horrible depression,horrible joint and bone pain and my hair is thinning. I have grown my hair past my butt and it has been increasingly thin on top and throughout. I have a different Oncol. and it seems it takes an act of God to get her to switch me to a different pill. I have to take this pill x 10 years, don't think I will make it that long.