I'm a Confused Mess with these Estrogen Blockers

Anonymous
Anonymous Member Posts: 1,376
edited April 2019 in Hormonal Therapy - Before, During, and After

I made it past the chemo, surgery, radiation and immunatherapy.  Now I have all kinds of things going on like the queen of side effects.  I experienced so many side affects during my treatment it was ridiculous.  Now I have the lovely advantage of getting nerve damage, neuropathy from the radiation and osteopenia from the chemo. 

  I get the pleasure of zoleodronic acid infusions every six months for three years and estrogen blockers.   The first one, anastrozole caused an immediate allergic reaction.   I got these hives on my neck and my face swelled up.   So, they put me on arimidex.  I suffered through a couple months of on and off taking them and dealt with the hot flashes and mood swings .  There is nothing like going through menopause twice in your life - Shocked.  Anyway, the joint pain got so intense in the middle of the night that I almost went to the hospital.  I've had pancreatitis - so I thought I could deal with any pain but this was off the charts.  

Anyway, doc took me off the Arimidex and told me to give it a few weeks to see if I begin to feel normal again.  When I do, then I am supposed to start up Tamoxifen.   It's been a couple of weeks and I am back to my normal (what's left of) myself. 

 I know I should take it but wanted a less side-effect way out.    I've read many old board topics here and researched the internet.  What could I possibly do to avoid taking them?  Are the odds really that much in my favor?   Will I still be able to stay married as I bite my husbands head off with mood swings?.  Does he mind the bedroom being 32 degrees year round?   

Can I handle the extra hairs sprouting off my chin? Will I look and feel better wearing a moo moo? (because these drugs seem to be causing weight gain while I am dieting).  Or do I make the attempt at becoming some sort of guru chemist who can find the cure to stop recurring breast cancer by dousing up on supplements and herbs I buy off Amazon? 

Of  course I should continue to listen to my oncologist.  He is amazing.  He also knows I have an extremely difficult time with side effects. 

I am just not sure I want to take the Tamoxifen because my family has a big history of blood clots and that isn't cool for that specific drug.  I don't know what risk is more worth it.  Is there actually anyone around who decided not to take the estrogen blockers and how did they do?  What a very hard decision and I wish there was someone to talk to about it that feels the same way I do. 

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Comments

  • gb2115
    gb2115 Member Posts: 1,894
    edited March 2019

    Hi angelonthemoon---

    Welcome to BCO! Dealing with side effects from these meds is definitely extremely hard. I am 2 years into tamoxifen and having mighty struggles that are only building with time so I have had thoughts centering around quality of life. So I get it. It does come down to risk vs benefit. I know for me (I am 40 with family history of delayed metastatic occurrence which has me pretty spooked) it's still worth the side effects. But, it's making my job physically hard and I don't know if I can do the 10 years she wants me to do. Time will tell and I take it one day at a time.

    I don't know what you should do, but know you aren't alone and this is a great place to vent!

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited April 2019

    I have a history of PEs and DVTs, blood clots. I was on Arimidex for 4 years, tamoxifen for 1 year. Have been on Coumadin since the clots, way before Bc. Monitored Coumadin monthly, MO wasn't concerned about the clot possibility. Would that be an option to discuss??

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  • jessie123
    jessie123 Member Posts: 532
    edited April 2019

    There's that last one that starts with an L you might want to try -- forgot the name. I haven't started the drugs yet, but am worried because I'm already sore. I know two women who refused the drugs years ago and are still fine. I have two other friends -- one on the L drug -- that have had absolutely no side effects. Wonder why some people have the SE's and others don't.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited April 2019

    I've been on Anastrozole (I realize you cannot take it) for 7 years. I'm not going to lie, the SEs were rough the first two years, but then things got better. I am 7.5 years cancer free from an aggressive cancer with a heart attack from chemo, permanent heart damage from Herceptin, etc. The SEs have gotten 70% better over the years. My sister has been on it for 4 years. She, too, has had the SEs lesson dramatically.

    Being now 7.5 years out when I didn't think I would live a year makes it all worth it. Easy? Absolutely not. I know many women who had to try many drugs before they found the fit for them.

    Just as an aside - my friend's 86 year old mom was just diagnosed with a huge 8 cm tumor the size of an orange. They cannot operate and she cannot do chemo. She has been on an AI drug for 6 weeks. The tumor has shrunk 35% in six weeks!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2019

    Isn’t Arimidex just the brand name for anastrozole? I had a bit of a struggle with that then switched to letrozole (Femara) . Letrozole and Aromasin• are both in the aromatase inhibitor class of drugs as is anastrozole. Just a thought as letrozole has been easier for me, but we all vary widely in how or if we experience se’s. All the best to you.

    * I can’t remember the generic pharmaceutical name for Aromasin

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2019

    Hi GB, wow - the family history is scary.  The entire idea of that monster coming back is scary.   I figured mine is gone now - but they just can't give me an answer.  That alone freaks me out.  My friend had the same HER2 positive cancer, same everything for treatment and they told her hers was gone.  Mine - they can't say.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2019

    Wow, you did get blood clots and now have to take coumadin?  God bless you for what you have been through.  I'll be glad to discuss anything :D 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2019

    Hi, I think you may be right!   I will have to look at all my half full bottles of stuff.  I know, I confused one with Exemestane!!  OOPS!   They are all different and those side effects love me!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2019

    Wow, what you have been through!  Side effects are threatening to our quality of life; but then the quality of life with or without the meds can also differ.  I have met several women who have taken the drugs for years and they are now fine.  I never met any that chose not to take them.    The size of an orange and it is shrunk 35 percent is remarkable.  I am 62 and cancer treatment made me feel like 100.   Now, off the drugs for almost three weeks and chemo/immunotherapy for several months, I am starting to feel a little more human and closer to my own age.  I even have hair grown out to the bottom of my neck, yahoo!   

    I have this bottle of Tamoxifen that is arguing with me now.

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