Anastrozole: Any studies on its side affects?

Posted by pmom3366 @pmom3366, Feb 25 11:23am

I want to know if there is anyone out there studying the side affects of anastrozole. I've been on it now for almost three years and I've read multiple discussions. The first symptom was the pain in the heel. It was so irritating to have people respond it's plantar facetious. No it's not!! Then I had swelling and pretty much unusability of my pointer finger. Next was my thumb on the same hand. Swelling and severe pain. Next came a stabbing relentless pain under my scapula and then out of nowhere my knee started hurting. I am a very active person and if I can't get out and take a walk then is it worth it. Is there anyone looking into the biological results for this pain? Is your blood different are there brain changes that come with these side affects. There has to be some answer as to why all these people have almost identical disabilities. I just don't understand why there is not tests being done instead it's just a , yeah that's one of the side effects. I went off for a week and no pain in my shoulder, swelling in hand almost gone, (my heel pain went away on its own),knee is feeling better. I have tried but the side effect pain is terrible. These side effects don't gradually come on... it's bahmm swelling and severe pain. I want to know why!!!!

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

Profile picture for songfamily2025 @songfamily2025

Hi pmom3366, I had Anastrozole for 20 days only. It gave me terrible back pain I barely can walk. I quit. Now I am on Letrozole for 6 months, I was doing OK. But on 7th months I have feet edema and my Oncologist said that is nothing to do with letrozole. She wants me to see my PCP. I insisted that is her job to treat me and told her to google it. So she called and ordered U/S stat. to R/O DVT. I had it done immediately. The results is Negative luckily. Now she give me 14 days off the drug. I don't know what she will do the next. I might to try the same drug again. My question to you is that you have been suffered for 3 years. Why are you keeping taking it? Why not to try different AI. Pain is terrible to handle I feel so sorry for you. Because I have other medical issue that I need to take painkiller every day.

Jump to this post

@songfamily2025 I have a very high pain tolerance and a finger and thumb hurting can be tolerated. It was the recent back pain and knee pain making it difficult to take my walks is when I decided to go off for a few days. My sister was on Tamoxafin and I truly believe the med killed her. She made it almost five years. She had hair, nail, skin side effects at first then her knees where hit hard around three years. Forth year she had skin cancer and a clot that almost killed her. It then hit her heart. She was hospitalized and they said her abdominal was loaded with clots. Her heart gave out but it was the Tamoxafin. The doctor told her her tamoxafin is tried and true!!!! Bullshit!! I didn't want to come out and complain because it makes people question their meds but for me three years was better then none. Quality of life is better then quantity.

REPLY

I was on Anastrazole, then Exsemestane, and it was unbearable. My hands were so painful and non-functional I couldn't even wring out a facecloth. My feet hurt so bad I could hardly walk. I had 2 trigger finger surgeries and cortisone shots in my hands, as well as cortisone shots in my ankle. I refused to continue with those meds, no quality of life. Started Tamoxifen and luckily no problems going on over 2 years now. I'll be on it 10 years. My oncologist is a nice guy but he's very reluctant to blame the meds for any of these problems and that does anger me. I told him I'd rather go through chemo again than stay on these drugs (chemo was okay for me). It's pretty obvious women need even small amounts of estrogen during their entire lives. My hand surgeon acknowledged that something systemic was going on as both hands and feet were affected, in the absence of any other ailment. Yes, they need to do better in finding acceptable medications, what's the point if your quality of life is zero. I would suggest trying Tamoxifen, it works differently and leaves you with a tiny bit of estrogen to get you through life.

REPLY
Profile picture for pmom3366 @pmom3366

@songfamily2025 I have a very high pain tolerance and a finger and thumb hurting can be tolerated. It was the recent back pain and knee pain making it difficult to take my walks is when I decided to go off for a few days. My sister was on Tamoxafin and I truly believe the med killed her. She made it almost five years. She had hair, nail, skin side effects at first then her knees where hit hard around three years. Forth year she had skin cancer and a clot that almost killed her. It then hit her heart. She was hospitalized and they said her abdominal was loaded with clots. Her heart gave out but it was the Tamoxafin. The doctor told her her tamoxafin is tried and true!!!! Bullshit!! I didn't want to come out and complain because it makes people question their meds but for me three years was better then none. Quality of life is better then quantity.

Jump to this post

@pmom3366
When I read your post, my heart was saddened. The tragedy happened to your sister was so heart broken and should be prevented. You need to post it to remind whoever are on this med need be extremely careful because this drug worst side effect is clots. I was told by a U/S technician she said all the patients were fine but all the AI cause clots. The difference is the percentage. So, When I send my swollen feet and ankles Pics to my Doctor, She immediately ordered the test to R/O DVT. Tamoxafin is on the market for more than 50 years. Of course it saved a lot of patient. But no one will tell you how many death rate in the past. I guess your younger sister was premenopause. Anastrozole was newest drug and I read a lot people complain the side effect more than Letrozole I am taking. Now that you mentioned three years you were on is enough. I agree with you if the side effects bother you too much. I will do the same. I don't know your BC charactor There are 11 type and I hope you did read a lot before you have decided. It is personal decision and I wish you can finally say "bye bye" to your side effect and enjoy your quality life. Please keep me posted how you are doing. Best luck to you! ( Sorry for the late reply. I have been in bad pain since yesterday pm and the night time was worse )

REPLY
Profile picture for songfamily2025 @songfamily2025

@pmom3366
When I read your post, my heart was saddened. The tragedy happened to your sister was so heart broken and should be prevented. You need to post it to remind whoever are on this med need be extremely careful because this drug worst side effect is clots. I was told by a U/S technician she said all the patients were fine but all the AI cause clots. The difference is the percentage. So, When I send my swollen feet and ankles Pics to my Doctor, She immediately ordered the test to R/O DVT. Tamoxafin is on the market for more than 50 years. Of course it saved a lot of patient. But no one will tell you how many death rate in the past. I guess your younger sister was premenopause. Anastrozole was newest drug and I read a lot people complain the side effect more than Letrozole I am taking. Now that you mentioned three years you were on is enough. I agree with you if the side effects bother you too much. I will do the same. I don't know your BC charactor There are 11 type and I hope you did read a lot before you have decided. It is personal decision and I wish you can finally say "bye bye" to your side effect and enjoy your quality life. Please keep me posted how you are doing. Best luck to you! ( Sorry for the late reply. I have been in bad pain since yesterday pm and the night time was worse )

Jump to this post

@songfamily2025 the scary thing is is my sister was 76 years old. She is 10 years older.

REPLY

Hi , Tamoxafin used to give to a pre menopause woman. That was why I was assuming your sister is younger then you. Because you are on AIs. Wish you all well.

REPLY

I would love to know also!! On 18 March it will b 5 years since I found the lump
I’m my right breast. I was started on Anastrozole august 21. I went from a women, I’m 74 next month, who walked miles every day to what I am now- I can just get to the bus stop!!! The side effects to Anastrozole, for me, was pain in my back that I can barely cope with!! and my joints also but by my back is the worst. 3 years ago my Doctor sent email to my oncologist to ask him to change my meds ftom Anastrozole to exemestane and on oncologist refused!! He said I’d still have the same side effects!! Needless to say, he is not my oncologist anymore. My breast care nurse got my prescription changed to exemestane. Hadn’t really made much difference cos the damage has already been done but I only take it 3 times a week instead of every day. I’ve oestrogen positive breast cancer and I know the Anastrozole was helping keep the oestrogen out of my body but no one explained to me about the side effects. I’m juky 2021 I had 2 rounds of chemo-I was meant to have 4 rounds but on my way to my third chemo, I collapsed and ended up in hospital for 5 days so I decided, I was 69, not to continue with the chemo. As I said, I was put on Anastrozole and bisphosphonate in august 21 and then in October I had 5 sessions of radiotherapy. After tgst I had a booster dose of covid vaccine. That woukd have been my third vaccine. I also had a flu vaccine at tge same time. I’d never had a flu vaccine before. In jan 22 we went to Spain for a break to get over covid and breast cancer. Luckily my brother and my sister in law were there cos I had to be taken into Torrevieja hospital cos I couldn’t breathe. I had pulmonary embolism. That frightened me more than the breast cancer. Long story, short, the doctor in Torrevieja hospital said my meds, Anastrozole and bisphosphonate, caused the clots in my lungs. I said this to my, then, oncologist, and he said absolutely no way was this right. In other words he was saying the dicot on the Spanish hospital was wrong!!! But yet oncologist took me off bisphosphonate!!! I did a load of research when I found my limp bit I never knew that cancer can thicken the blood. I mention the covid and flu vaccine for a reason. I can’t say, emphatically, that I got pulmonary embolism from the cancer meds it covid or flu vaccine cos there are too many variables, but all this has been brought to the forefront in my mind cos, from what i know, Catherine OHara, whom I absolutely adored as an actress, died from a pulmonary embolism brought on by rectal cancer. Jesus.., I’m worn out typing!!! I’m hoping this long winded post can help someone. I was lucky. I nearly died but I’ll be in a blood thinner for rest of my life but at least I’m still here x

REPLY
Profile picture for rosa1935 @rosa1935

I would love to know also!! On 18 March it will b 5 years since I found the lump
I’m my right breast. I was started on Anastrozole august 21. I went from a women, I’m 74 next month, who walked miles every day to what I am now- I can just get to the bus stop!!! The side effects to Anastrozole, for me, was pain in my back that I can barely cope with!! and my joints also but by my back is the worst. 3 years ago my Doctor sent email to my oncologist to ask him to change my meds ftom Anastrozole to exemestane and on oncologist refused!! He said I’d still have the same side effects!! Needless to say, he is not my oncologist anymore. My breast care nurse got my prescription changed to exemestane. Hadn’t really made much difference cos the damage has already been done but I only take it 3 times a week instead of every day. I’ve oestrogen positive breast cancer and I know the Anastrozole was helping keep the oestrogen out of my body but no one explained to me about the side effects. I’m juky 2021 I had 2 rounds of chemo-I was meant to have 4 rounds but on my way to my third chemo, I collapsed and ended up in hospital for 5 days so I decided, I was 69, not to continue with the chemo. As I said, I was put on Anastrozole and bisphosphonate in august 21 and then in October I had 5 sessions of radiotherapy. After tgst I had a booster dose of covid vaccine. That woukd have been my third vaccine. I also had a flu vaccine at tge same time. I’d never had a flu vaccine before. In jan 22 we went to Spain for a break to get over covid and breast cancer. Luckily my brother and my sister in law were there cos I had to be taken into Torrevieja hospital cos I couldn’t breathe. I had pulmonary embolism. That frightened me more than the breast cancer. Long story, short, the doctor in Torrevieja hospital said my meds, Anastrozole and bisphosphonate, caused the clots in my lungs. I said this to my, then, oncologist, and he said absolutely no way was this right. In other words he was saying the dicot on the Spanish hospital was wrong!!! But yet oncologist took me off bisphosphonate!!! I did a load of research when I found my limp bit I never knew that cancer can thicken the blood. I mention the covid and flu vaccine for a reason. I can’t say, emphatically, that I got pulmonary embolism from the cancer meds it covid or flu vaccine cos there are too many variables, but all this has been brought to the forefront in my mind cos, from what i know, Catherine OHara, whom I absolutely adored as an actress, died from a pulmonary embolism brought on by rectal cancer. Jesus.., I’m worn out typing!!! I’m hoping this long winded post can help someone. I was lucky. I nearly died but I’ll be in a blood thinner for rest of my life but at least I’m still here x

Jump to this post

@rosa1935 by the way I only take exemestane 3 times a week cos I read an article by a doctor/oncologist , can’t remember his name, that said cos exemestane stays in the system for 50 hours and that he was quite happy for women, like me who suffer side effects, to only take it every second day. Good luck, everyone

REPLY
Profile picture for pmom3366 @pmom3366

You would think by now they could come up with an estrogen blocker without all the side effects. I'm sorry you're going through what you're going through.

Jump to this post

@pmom3366 They are currently in phase 3 trials of a couple of new estrogen blocking drugs. They are called SERD's, selective estrogen receptor degraders, a whole new approach it seems, compared to the AI's. They end in the name estrant, Giredestrant and Elacestrant are a few that I have heard of. From what I have heard and read about them so far, they seem to be claiming they have less side effects or so called better patient tolerance compared to AI's. It's kind of hard to imagine they would create anything new that is worse than AI's, after being on them for 3 years now, they have ruined my life. Of course anything new, you can't possibly know long term side effects until years from now. We all know that WE are the real guinea pigs who do the testing of these drugs. Hopefully, God willing, they will be better and help women like us to have a better option.

REPLY
Profile picture for coco46 @coco46

@pmom3366 They are currently in phase 3 trials of a couple of new estrogen blocking drugs. They are called SERD's, selective estrogen receptor degraders, a whole new approach it seems, compared to the AI's. They end in the name estrant, Giredestrant and Elacestrant are a few that I have heard of. From what I have heard and read about them so far, they seem to be claiming they have less side effects or so called better patient tolerance compared to AI's. It's kind of hard to imagine they would create anything new that is worse than AI's, after being on them for 3 years now, they have ruined my life. Of course anything new, you can't possibly know long term side effects until years from now. We all know that WE are the real guinea pigs who do the testing of these drugs. Hopefully, God willing, they will be better and help women like us to have a better option.

Jump to this post

@coco46 Interesting. I wonder if these are related to the SERD Fulvestrant (similar name)? Are they shots? The Fulvestrant shots gave me great leg pain & finally a rash; I ended up with some slight vein insufficiency in one leg and swelling ankles. Maybe these are pills and improved versions? I hope.....

REPLY

I’ve been on it for nearly 6 years. My last visit with the oncologist he asked me if I wanted to go off it as I’ve passed the 5 year mark. I told him no…let’s wait for the results of my next mammogram in May of 2026. Well, then my breast surgeon asked me the same question. I felt since they both asked me about going off of it I’d only take it 3x a week (Monday -Wednesday - Friday). This lessens the intermittent bone aching side effect I’ve endured. If my mammogram is good in May I’ll make a decision. 🙏
One thing I’ve noticed over the years is if I take it before bedtime I have achy legs in the night. If I take it early in the day I do not notice the aches as much.

REPLY
Please sign in or register to post a reply.