Say NO to hormonal therapy!!!

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  • Yogatyme
    Yogatyme Member Posts: 2,349
    edited September 2019

    Just as everyone’s cancer is different, every decision about treatment is completely individual. It is hard for others to be accepting of our decisions, but we all have to do what we believe is best for us. Trying to move from judgement to acceptance is a journey of its own. I try to remember that while I might not make the same decision as someone else, it doesn’t make mine right and theirs wrong or vice versa. This BC has me practicing Loving Kindness meditation often and honestly it helps.

  • VioletKali
    VioletKali Member Posts: 243
    edited September 2019

    Artista- (and anyone who may benefit)

    I spoke with my psychiatrist regarding the possibility of switching, my concerns, etc..I am ALSO a Nurse currently obtaining my Master's Degree, so I am exceedingly familiar with drugs. This is for some background.

    The truth is that I am mentally stable, and have been for 20 years. I do not want to risk it. My mental health was not cared for as a child/teen, and I suffered for it. I began to use meds at age 17 when I was able to pay for my own health care.

    I am all about QUALITY of life over QUANTITY. Give me ONE good year over 10 years of poor quality. Life is not worth living to *me* if I am not happy or unable to participate in my activities.

    I realize that many want quantity and are willing to live with side effects. As a future NP I respect and honor that 1000%. I do not want that, I refuse to live with side effects. We all die, I want to live as well as possible. For myself this is without side effects.

    Certainly a unique perspective, but I have to follow my gut.

  • VioletKali
    VioletKali Member Posts: 243
    edited September 2019

    Sarah536,

    And also with you!

    I do believe I might do antihormonals if I had a recurrence, because I would not do chemo again.

    My logic says this.. IF I recur on antihormonals, I have no options since I refuse to do chemo again. I have , unfortunately, seen several women in my support group recur on antihormonals. They do not have that option anymore, since it did not work. I will have that option. I don't know if this makes sense, but I believe it does.

  • oldladyblue
    oldladyblue Member Posts: 272
    edited June 2022

    I am recently off of anastrozole due to bad side effects including mental health issues. I got so argumentative at my husband's doctor's office with the receptionist (who said we still owed $176 from 2 years ago) that he called the Sheriff's office and tried to get me Baker Acted. The day before I lost it with a store manager, screaming at him in the store. That was on top of daily grumping to my husband. Plus constant daily all over bone aches making me feel 20 years older than I am, and horrible insomnia almost nightly (2-5 hrs of sleep if I was lucky) despite anything I took to make me sleep.

    My MO has suggested another AI, or nothing at all, she is not pushing me although she thinks I should take another AI or Tamoxifen before I quit hormone therapy.

    But I can echo what VioletKali says, that quality of life for me is key. I feel almost pre-cancer normal right now, it feels good, very good.

    This is MY choice, I would never try to tell another what choice she should make. But it helped me to read this thread, I am glad that MusicGal started it, and also that VioletKali feels so strongly about her decision. I feel stronger about my choice now.

  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited June 2022

    Not sure what made me come back here as it has been a very long time since I posted (or visited) this site.

    OldLadyBlue, I tried Letrozole for 6 months after my treatment for ILC in 2019 and it raised my cholesterol so I quit taking it and never regretted it. I never wanted to go on it in the first place so it was kind of expected I guess. I too would never tell anyone else what to do..

    As for your mental health, do you see a difference since you stopped the AI? I work in a middle school and this past year 2021-2022 I have dealt with more students with mental issues than in the entire time I worked for the district! (32 years!) There are many reasons, but there is so much anger out there! Some has to do with the pandemic, some with politics, especially on the far right, and some due to other issues. Increased anger is one reason we are seeing the increase in violence. Happy people don't kill unless it is self defense!

    It wouldn't surprise me if your issue was largely due to the AI, but the general anger level in the USA is crazy high! It makes me feel like shouting from the roof tops "chill people!" Today's Supreme Court reversal of Roe V Wade will likely heat things up even more!

    Life shouldn't be this crazy! I wish things would go back to an earlier time, when there was general respect for each other, people used manners, and being kind was a natural attitude!

  • oldladyblue
    oldladyblue Member Posts: 272
    edited July 2022

    Hi Mavericksmom, Thanks for your post. I am glad that you returned to this site, perhaps it was just to answer my post! think you are right about the overall increase in anger in society. I've witnessed it in the way people drive especially. It used to be so rare to witness what people are doing now: intentionally driving through red lights, not moving over for bicyclists or ambulances or fire trucks, beeping rudely, cutting across many lanes of traffic to turn, etc. I can understand that you have witnessed more anger in school.

    Yes, I am much recovered emotionally after being off of the Anastrazole for the last several weeks. The difference in how I feel was/is amazing actually. I've rarely even been grumpy, let alone the angry woman I was turning into while taking that innocent small pill. My doc asked me to try another AI, but I don't think that I will. Oh, and also the body aches and pains that were constant are gone. The insomnia is soooo much better. No doubt they were side effects too. I feel healthy and happy for the first time since my treatment began last year.

    Your last line in the above post is echoing with me, you are spot on.

  • happyhiker1
    happyhiker1 Member Posts: 24
    edited July 2022

    Interesting thread...I really didn't want to take the AI with my BC diagnosis 2.5 yrs ago...my oncologist said would add 3% protection after the rad I did accept. But here 2.5 yrs later I have had a local recurrence and will have to undergo mastectomy. So I wonder whether the past 2.5 yrs without the AI and its side effects allowed the BC to return or would it have come back anyway. I will never know, but can't take another chance on any more recurrences.

    I am just hoping somehow my side effects will not be as bad as many have reported.

  • oldladyblue
    oldladyblue Member Posts: 272
    edited July 2022

    happyhiker1 , so sorry to hear about your local recurrence and your upcoming surgery. I do understand how you might be puzzling whether it would have come back or not if you had taken the AI for the last 2.5 years. It does go through my mind too. If I take the AI, it reduces risk 5%, but I have chosen not to (I think) as I haven't started taking the Femara I received to replace the Anastrozole I stopped taking. I am so afraid of the awful side effects I had.

    However, re light side effects, or almost none, it IS possible. A woman I met on this site (we did chemo and rads at almost the same time for the same type of cancer) has been successful with Anastrozole, having very few side effects now. She took it for a few months, had side effects, stopped for 3 weeks and restarted, and has had almost no side effects, so is happily taking her Anastrozole. So it is possible you could be fine on it.

  • typhoon
    typhoon Member Posts: 80
    edited July 2022

    happyhiker1 - I'm so sorry about your recurrence, and hope that managing it goes as smoothly as possible.

    FWIW, I've been on Anastrozole for 18 months now, with no side effects at all that I am aware of. There are quite a few of us who have minimal or no side effects, but we tend to have very little to post about when it comes to hormonal treatments (seriously, how often can you say, "Doing fine, thanks!"). The people who do have side effects have a lot more to say, naturally, so it's easy to get the impression that everyone suffers from them to some extent. I was given some great advice here when I was starting the Anastrozole: try it, and if you start to have side effects that are too much to deal with, stop and try something else (or nothing at all). The meds are a treatment, not a contractual obligation, and you are in charge.

    Wishing you all the best!

  • oldladyblue
    oldladyblue Member Posts: 272
    edited July 2022

    Typhoon, thanks for your post about doing fine on Anastrozole and personally I think it's just fine for anyone doing well on AIs or tamox to come on this site and say "doing fine" every so often. I do wonder how many people have no side effects, or light ones. Your post can balance out those who post about their side effects, like me, yeah, I was pretty complainy. I wish I hadn't had that awful experience on my AI, I didn't expect it really, surely didn't hope for it... but I got what I got. I definitely don't want anyone NOT to at least try them because of my own feelings.

  • happyhiker1
    happyhiker1 Member Posts: 24
    edited July 2022

    Many thanks Typhoon for your encouraging feedback. I wonder if there is any info about factors that cause some women to have bad side effects and others not?? In your case, is there anything you have identified, maybe exercise related or other?? Maybe the differences are purely genetic but if there is something modifiable that could help reduce effects that would be great....

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited July 2022

    I had severe SE from letrozole and after 2 years of misery, my MO recommended I switch to Aromasin. It is been over 4 months and it is a difference like a day and night. I am even worried if exemestane is working since I feel so normal. If you have SE from any AI, I highly suggest talking to your MO to ask for another type of AI.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2022

    Many people feel normal or close to normal on AI’s. Lack of side effects is unrelated to efficacy.

    As far as I know there is no study/research regarding factors that contribute to experiencing se’s. It seems to be unpredictable though for myself, moving definitely helps the stiffness.

    In general, whether on bco or any health related forum, those who are having difficulties and side effects are over represented in member’s posts. I don’t think anyone is hesitant to post that they’re doing well but rather most don’t see any reason to come back to a support forum to say everything is going well (some do however) .

    I have been on AI’s for almost 11 years. I have experienced bone and joint pain to varying extents with all three. It has not been debilitating and I manage it with otc meds. I am stage IV so I have some very compelling motivation for continuing AI’s. I do realize that se’s are debilitating for some but it’s not a given and there seems to be no way to predict how it will effect a given individual.

    I usually encourage folks to give it a try as one can always stop but I know that some won’t consider it. That’s ok as we all have a choice.

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