new to anatrozole

[Drrob81]

trying to understand which are side effects and which might be left over from treatment-radiation, surgery (post mastectomies)...specifically lots of muscle, and soft tissue pain across my chest-worse on R (cancer site) but on left as well -pain can be burning, achy or sometimes itching...that said, can the AI cause that as well as new onset sleep issues, either falling asleep too early and then awakening in the middle of the night and not sleepy so falling back asleep in an issue- too much to sort out as I settle into the 'new normal' for me -thanks for any feedback...#anatrozole, #postradiation #postsurgery

[Nocillo]

I was on Anastrozole for almost 6 years. I had some itching, but otherwise, no real issues. Good luck!

[Gingerann1]

I was on Anastrozole for 7 years with no issues. Do you take in combination with anything else that may be the culprit?

[Drrob81 in reply to Gingerann1]

No, just anastrozole-doing more reading-amazingly LONG list of SE to this medication- yes, arthralgias, myalgias, insomnia, cough -I have it all and they are all listed -ibuprofen 800 mg has become my new BFF but here too, potential liver issues (none currently) -I want to push through this and don't want to add anything - once one knows WHY/WHAT is causing the problems, sometimes it makes it easier to deal with it - have a second opinion with an oncologist scheduled this week-looking for someone who thinks outside the box-will share anything I learn-thanks all..

[Gingerann1 in reply to Drrob81]

Wow! Sorry to hear this. I feel very fortunate that I had none of this, especially being on it so long. It was prescribed after my first BC diagnosis in 2013. I was HR+ in one breast and HER2+ in the other. I became eligible for Herceptin infusions as well and remained in remission for 7 years from surgery. When it returned in 2020 as a pleural effusion on my left lung it was only HR+ and my Onc said that combo had done its thing in knocking out the Her2+ cancer. I was put on Ibrance and Fulvestrant shots as first line treatment and became NED after 15 months and now at the 3 year mark have had no evidence of disease for 2 years. Have 6 mo. scans next month…🤞 I hope yours get sorted out and you are able to take this med and that it works as well for you. I did just think to ask… is this an original BC diagnosis or are you stage 4 metastatic?

[Drrob81 in reply to Gingerann1]

I am 78-first time diagnosis and after chemo, surgery, radiation told it was a cure as I said to remove any possible source of cancer for the future -and she did- chose going 'flat' because I was more interested in a cure than in vanity...now just trying to settle into a regimen that allegedly will prevent any future 'rogue' cells from growing -although didn't know I had any in the first place! So, I am going to keep the faith and believe that everything is 'gonna be okay' (smile)

[Gingerann1 in reply to Drrob81]

Great attitude. I will say this site is for those of us who are stage 4 metastatic so although there is a lot of info here it may be helpful for you to get on a site with others who have the same diagnosis ( not had spread beyond breast, lymph nodes to other organs) who will be getting the same kinds of treatment as you. Metastatic cancer is considered a terminal diagnosis although with all the treatment options available we’d like to think of it as a manageable chronic illness. We support each other in the highs and lows and when our fellow fighters lose their battle. I sincerely hope you win your fight with your diagnosis and you won’t be in a position to join us. All the best to you in your journey.

[Drrob81 in reply to Gingerann1]

I sincerely appreciate your reply- it helps my understanding tremendously... and with that I also wish you and others the very best- there is so much positive happening in this field that offers hope where before there was none...

[Gingerann1 in reply to Drrob81]

Absolutely. We all continue to have a lot of hope, particularly those like yourself who indeed may have options like Verzenio that may keep it from metastasizing.

[love2golfwell]

I was on Anastrozole for 5 years and experienced hot flashes, joint pain and insomnia but no itching. It did cause my cholesterol levels to raise also. It worked though while I was on it and would gladly have stayed on it 5 more years if it would have stopped me from being diagnosed with MBC 2 1/2 years after coming off of it.

[Drrob81 in reply to love2golfwell]

wow, well that is motivating - so sorry to hear that....how did it all come to this? That women are confronted with all of the evils of a disease with sometimes just limited options...we just have to keep the pressure on the research....

[love2golfwell in reply to Drrob81]

Thank you. I asked my oncologist if I could stay on the Anastrozole for 5 more years, but she said the long term side effects were not worth the risk. My genetic testing done when I was first diagnosed with Stage 2 BC showed I was at a low risk of recurrence. That obviously was wrong! Anyway, I am doing good so far on my first line treatment and am hoping they come up with more beneficial meds that don't cause as many side effects. Best wishes.

[RedAzalea]

I am on it for 2 years. There are so many different side effects. But based on my own experience, and of a multitude of women from support groups, I would say the most common one is joint stiffness and memory loss (sleep disruption surely is a thing also. But so many of these drugs cause it. Hard to know which one is doing it) . For example, when I have been sitting a while, and get up, I often have to hold onto something in a limp little. But once I start moving, I go back to baseline. I started it at age 49 along with lupron

As for the memory loss, this is the worst part for me. I remember being at work and standing with people and literally just having blanks while speaking. Not being able to remember a place name. Totally humiliating. This is not brain fog for menopause. I checked in with my oncologist and asked her “How is it possible to get dementia in 6 months”. They said “ooo…no ..no…no that’s the letrozole.”

I know a woman who went to get tested for dementia due to the memory loss. In the end, it was all from this drug.

in all cases, unless you have a job that requires you to be extremely quick mentally, it’s livable. I tolerate the drug. I’ve learned to deal with the side effects. Compared to other drugs, I find the side effects to be tolerable

[Drrob81 in reply to RedAzalea]

What a challenge to 'figure it all out' -I am a physician, still working (and loving it) and fortunately no evidence of any cognitive issues - hoping of course that they don't ever develop -dementia is NOT a normal part of anything, including aging so we need to be aware of that and should it develop, immediately seek out its cause and make a change...good luck in your continued journey..

[TammyCross]

I had a lot of pain. Hard to tell whether it was in joints or ligaments and I think the one across my chest (on right, although my initial bc was on the left) was the fascia. Otherwise, in my shoulders (right especially) and groin. Had limited mobility. I had taken Arimidex for 5 years after my initial breast cancer without any physical symptoms. When I went back on it 15 years later for mbc, I had this pain and some insomnia. No itching, although I had gotten eczema from a previous treatment (Ibrance) and have it now on exemestane. That is very itchy. Ibuprophen in the am helped a lot, but I tried not to take it all the time. Exercise helped some.

[Drrob81 in reply to TammyCross]

thank you for your reply - all suggestions are always welcome - have always been physically active so happy about that -and will continue to find ways to manage whatever side effects arise in the interest of long term prevention....

[TammyCross in reply to Drrob81]

As someone above said -- I hadn't noticed -- you are on the wrong page. There is another one for people who have bc stages 1-3. We are all stage 4 here. You are taking an AI as a preventive, and not taking it with a targeted treatment. I think you will find the group of people with primary breast cancer more helpful.

[Drrob81 in reply to TammyCross]

I apologize for any confusion and I am certainly glad to have had that confusion addressed and clarified for me -I have learned a lot on this page and greatly respect the fortitude of those women who have posted here-again, sincere thanks

[RedwoodLady]

I have been on Anastrazole since July 2020, after Lumpectomy and Radiation. No huge side effects - but a Blood Marker CA 27.29 has been rising and so I’m about to get more imaging. I’ll let you know once I know if my meds needto be changed.

[PJBinMI]

I was on the AI Letrozole as my first treatment for MBC. It gave me intense hot flashes, multiple times a day, bright red face with sweat pouring down. Long acting Effexor solved that! I'm a long timer with MBC (since 3/2004, almost 20 years) and I fot almost 5 years from Letrozole, tthen oc=ver 9 from Fulvestrant, then about 5 from exemestane. Last year. the cancer cells quit being E + and became triple negative. So treatment had to change alot. I was on Xeloda for awhile and now am to have my third IV of Taxol. I've had neuropathy from pre-existing spinal stenosis, made worse by these chemo meds, with balance issues. My shport and long term memory aren't what they used to be. There is some other symptom/side effect that I can't think if right now. But I'm able to enjoy family, friends, pets, nature, some TV shows.

[PJBinMI]

Letrozole is very similar to Anastrozole and when one causes alot of side effects. sometimes switching to the other one can be very helpful! Call your onc and ask about that!

[Granny333]

Hi, I take anastrozole at night before bedtime. The drowsy feeling isn’t as bad

[Dancing]

Hi Drro, I was diagnosed in 2016 with what I was told was a good tumor they caught it early stage 1 had a lumpectomy n some radiation 15 days. Saw an oncologist n she put me on Anastrazole. My side effects were awlful. I started after my radiation. I had painful muscle n joint pain. Which caused a depression crying a lot sleeping in afternoon not at night. No appetite n I had itching but was told it was the radiation on side of my BC . After 4 weeks of cortisone with no relief. They prescribed a cream n it stopped the itching but i didn’t want to live with the daily muscle n joint pain n depression. So I met with my surgeon n told him I wanted to stop the Anastrazale…. I wanted a quality of life. N take my chances. I met with oncology dr n told her how I felt n talked to my surgeon he agreed with me. N that was it. But 5 years later I had my yearly mammogram n it was back n metastasized to my lungs. N I felt I did this to myself by not taking n staying on the Anastrazole.

[Drrob81 in reply to Dancing]

We have to make choices that we feel 'work for us' -and they have consequences, sometimes not the ones we want -but we can't allow 'blame, guilt' to take over -I am sorry to hear of your current situation - and of course there was never a guarantee that anastrozole would have prevented recurrence - my thinking was that if cancer appeared in ANY breast tissue then I wanted ALL breast and adjoining tissue removed -which I did-now the question for me is whether some 'rogue' cells escaped undetected after chemo, radiation, surgery and are 'hiding out' somewhere -then anastrozole or "something" needs to starve them to death - and I am working on that 'something' - I had no evidence of metastasis during all of my treatment but 'you never know'...but I do know that I don't have any breast tissue that can spawn cancer cells so for me that was 'step 1' in making decisions that work for me...best regards in your journey and thank you for sharing...

[Dancing]

thank you for replying. Happy New Year n stay well.