Concerned about the side effects of anastrozole

Posted by tinalove @tinalove, Jan 31, 2016

I completed all treatments for breast cancer but now I am supposed to take hormone blocker, named anastrozole. im concerned about the side effects. Has anyone here taken it and did anyone have hair loss?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@trixie1313

I was on anastrozole (Arimidex) for about a month and had headaches 25 days and then none for 5 days. Then....Boom...horrendous headaches, nausea, sweats,, fevers, extreme weakness, etc. but found out that it was from a bacterial infection and diverticulitis. My oncologist has told me to go off of anastrozole for 2 weeks and we'll talk again then. I probably had the infection for about 2 weeks before seeing my doctor while blaming the anastrozole for all the side effects! Now that I'm off of it, I've noticed more bone and joint pain and sweats which I think must be withdrawal from it. The joint pain I had from the AI had been managed by 5,000 U of vitamin D3. So I guess I'll find out what's really what once I get put back on whatever it is I have to go on.

Jump to this post

I've been on anastrozole for about 6 months now. I'm only taking 1,000 U of D3 oil. I will try your dosage. My doctor said EXERCISE, Exercise & Exercise! Of course I do not feel like exercise but have been trying and - it really does make me feel better! The YMCA has a program called Livestrong, a free 12 week program for cancer survivors. It is worth looking into if you have a Y nearby. I have arthritis in my knees, so it was hard to tell if the pain was from that or from the drug. I'm going to try to keep up the exercise & my best wishes for you. Yeah - 5 years seems like a long time (I'm 63) and 10 years seems like forever. I'm at least going to try for the 5 years. 🙂

REPLY
@trixie1313

I was on anastrozole (Arimidex) for about a month and had headaches 25 days and then none for 5 days. Then....Boom...horrendous headaches, nausea, sweats,, fevers, extreme weakness, etc. but found out that it was from a bacterial infection and diverticulitis. My oncologist has told me to go off of anastrozole for 2 weeks and we'll talk again then. I probably had the infection for about 2 weeks before seeing my doctor while blaming the anastrozole for all the side effects! Now that I'm off of it, I've noticed more bone and joint pain and sweats which I think must be withdrawal from it. The joint pain I had from the AI had been managed by 5,000 U of vitamin D3. So I guess I'll find out what's really what once I get put back on whatever it is I have to go on.

Jump to this post

Trixie, I'm sorry to hear about all of these issues you've had to deal with. Please do let us know how you respond to your next bout with an AI. It's all so confusing. I'm 74 and it's difficult to discern what is being caused by age or the AI. All I know is I never felt this fatique and weakness before I began taking Arimidex. Of course, I won't stop taking the meds because I don't want a recurrence of cancer.

REPLY
@kathyomaha55

I've been on anastrozole for about 6 months now. I'm only taking 1,000 U of D3 oil. I will try your dosage. My doctor said EXERCISE, Exercise & Exercise! Of course I do not feel like exercise but have been trying and - it really does make me feel better! The YMCA has a program called Livestrong, a free 12 week program for cancer survivors. It is worth looking into if you have a Y nearby. I have arthritis in my knees, so it was hard to tell if the pain was from that or from the drug. I'm going to try to keep up the exercise & my best wishes for you. Yeah - 5 years seems like a long time (I'm 63) and 10 years seems like forever. I'm at least going to try for the 5 years. 🙂

Jump to this post

@kathyomaha55
Kathy - check with your oncologist first on D3 dosage. I went from 1,000 to 2,000 and then got the okay for the 5,000. Thanks for the info on the "Y"...I'll check into it. I was walking once to twice a week before I got hit with all that extra stuff. Am just now starting to get my bearings again. Have been working in my garden and plan to start walking up and down my street again when the groin pain eases off.

REPLY
@sparklegram

Trixie, I'm sorry to hear about all of these issues you've had to deal with. Please do let us know how you respond to your next bout with an AI. It's all so confusing. I'm 74 and it's difficult to discern what is being caused by age or the AI. All I know is I never felt this fatique and weakness before I began taking Arimidex. Of course, I won't stop taking the meds because I don't want a recurrence of cancer.

Jump to this post

@sparklegram
Sparkle, thanks for your response. Isn't it a tough one?! One would think with all the smart people that they could come up with something a bit easier on the body! I'm 67, just retired when I found the lump last year, but that's been the story of my life, so my motto is just keep one step in front of the other. Hoping for the best for all of us.

REPLY
@trixie1313

@sparklegram
Sparkle, thanks for your response. Isn't it a tough one?! One would think with all the smart people that they could come up with something a bit easier on the body! I'm 67, just retired when I found the lump last year, but that's been the story of my life, so my motto is just keep one step in front of the other. Hoping for the best for all of us.

Jump to this post

@trixie1313- Indeed, Trixie!

REPLY

I exercise 7 days a week and honestly its not that much help. Ask your oncologist to give you the statistics for re-occurrence under the AIs vs re-occurrence taking Tomoxifen.

REPLY
@sparklegram

Trixie, I'm sorry to hear about all of these issues you've had to deal with. Please do let us know how you respond to your next bout with an AI. It's all so confusing. I'm 74 and it's difficult to discern what is being caused by age or the AI. All I know is I never felt this fatique and weakness before I began taking Arimidex. Of course, I won't stop taking the meds because I don't want a recurrence of cancer.

Jump to this post

After a year on Arimidex, My only complaints are unusual fatigue and brain fog. More than anything the brain fog is most disturbing. Remembering common words and familiar names is sometimes a challenge. I am 76 but until I started Arimedex, I had no problem. I don’t want to dismiss it as early dementia but I’m curious to hear if others have experienced this problem.

REPLY

@sandrajo, I definitely have serious fatigue, as for the brain for, i'm also in my 70;s, so it's hard to tell if it is the Arimidex, but I'd safe word retrieval and recall are worse now.

REPLY

Hello to all....... I'm chiming in here and first want to say that what I'm about to say makes me sound like a 'negative nabob' but that's really not my intention.
The AI's were not an option for me. I tried 3 of 4 available over the 5 year course of my Stage 0 to Stage 1 (bi lateral mastectomy) journey. I tired Tamoxifen -raised my blood pressure to extremely high levels, Letrozole - got Shingles and joint pain and severe depression (I'm never depressed, I can't be, I'm far too anxious, ha ha), Arimidex - blood in my stools and a rash for over a year along with severe depression and joint pain.. I'm not taking the meds now at all and my doctors are recommending that I take them only if my cancer comes back and of course, I'm hoping it won't!!!
From my personal experience and what I've read on this site and many other places - AI's have side effects and most people will experience at least some of the side effects. Many people experience, as I did, extreme side effects. Yes, some of what you feel might be simply the reduction of hormones in our bodies and something you might experience with aging (but much more slowly). This is taking all of your hormones from your body in a very, very short period of time, causing the many side effects. But, there is something else here with AI's........they are doing something else, in addition to reducing the hormones and I believe that's what really causes the serious side effects. I don't know what that is but what you are feeling from these drugs is real......it is not 'just you', it is not that all women are simply taking these pills and you are the one who can't tolerate them. It's many, many women out there. So, hopefully, if as they say, misery loves company, we're not alone.
I was lucky and I am grateful that my cancer was only Stage 1, it had not spread and that made my decision not to use AI's a little easier for both me and my doctors. But, what I did ask for was on going blood tests to determine the estrogen levels in my body (I had lots of estrogen, no progesterone) fueling my cancer. For over 3 years now my blood levels are below normal for estrogen. My body still makes it they say but in such small amounts it's not recordable. And due to the low estrogen levels I now have (and no progesterone or testosterone - which can convert to estrogen) I do have changes - hair loss, some joint pain, wrinkles, saggy skin....you ladies all know the aging complaints if you're of a 'certain age'. But, I do not have depression or a rash or severe joint pain, etc.....those all stopped with the run through the AI's.
Am I afraid of cancer recurrence? Yes, everyday. It's the new 'not so normal'.
I did change my diet, lose weight and change my lifestyle to include more supplements, Vitamin D, Omegas - more exercise, etc. My health is better overall than when I was diagnosed with cancer and I'm lucky again - I have no other health conditions......

My message I guess is to know you are not alone - side effects from AI's are very common and what you feel from them is real. It's hard to gauge their overall effect on your physical and emotional health in some ways because after you are diagnosed with cancer, endure treatments and deal with all of that you are tired and emotionaly drained. It's hard to add yet another onslaught of symptoms and feelings to navigate.

Ask your doctor for blood tests to determine your hormone levels 'off' the drugs........what is your baseline? This may take a couple of blood tests spaced over several months, but you should at least know where you are starting. Once I requested that and my doctors saw that I had so little estrogen to feed my cancer, they were less inclined to recommend the AI's. As you continue to use the AI's, request blood tests to determine how much effect they are having on your hormones so you can weigh that against the side effects.

The AI's work, they help you fight cancer and cancer recurrence. It's up to each of us to determine what that cost will be and how much we can endure......and that's the hard part because it's on us as patients and weighing feeling miserable for 5 years against getting cancer? Not much of a choice and a very difficult one to make.

Hugs to all.

REPLY
@sandrajo

After a year on Arimidex, My only complaints are unusual fatigue and brain fog. More than anything the brain fog is most disturbing. Remembering common words and familiar names is sometimes a challenge. I am 76 but until I started Arimedex, I had no problem. I don’t want to dismiss it as early dementia but I’m curious to hear if others have experienced this problem.

Jump to this post

I also have fatigue & brain fog. They told me that just having cancer can be the cause. And Radiation - fatigue may last up to a year from that. So not sure if it's that or the anastrozole. Hang in there.

REPLY
Please sign in or register to post a reply.