Bad side effects from Lupron. Concerned about my future QOL

Options

I started lupron injections about 6 months ago to protect my ovaries during chemo. Since I'm ER/PR +, my onc wants me to continue with hormonal therapy. I'm 37 years old diagnosed with stage 1 IDC oncotype 27. BRCA negative. I had a lumpectomy, chemo and now rads.


Side effects from lupron so far have been hot flashes, bad night sweats, vaginal dryness/pain during intercourse, and absolutely no libido. Prior to this, I had a very healthy sex life.

Onc wants me on lupron plus tamoxifen or AI. But based on my side effects with just lupron, I can probably kiss my sex life goodbye at age 37. This makes me extremely depressed.The night sweats are also terrible, and I can't imagine this being my new norm. From what I see on these forums and all of the other women I've talked with, tamoxifen has bad side effects too. These treatments are garbage. I'm thinking of outright denying all hormonal therapy and focusing an alternative treatments such as diet, exercise, and stress management. Especially since I was stage 1 with no lymph node involvement. Sometimes I wish I was triple negative and then there would be no decision to be made.Thoughts?


Comments

  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited May 2019

    Tell your gynecologist that you want pelvic floor therapy. It's really helpful for The Mojo. Any medication that works will reduce the estrogen, causing hot flashes. How long and how severe the hot flashes are seems to really vary. Please try to do the five years.

  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited May 2019

    fc- I’ve done Lupron plus Tamoxifen, and now zoladex plus Tamoxifen. Also a 3 month break where I was only on Tamoxifen. My experience is that the z + t seems gentler. I told my MO that I feel like they balance each other out. I think some of the worst SE from T is from TOO much estrogen, because it causes it to build up. (This is fact, your body still produces it, but your cells can’t use it, so your levels get really high) I think if you’re already having hot flashes and low libido, I wouldn’t expect it to get any worse on T.

    That being said- hot flashes ( and chills if you get those- I do) and lost sex life are very real, and suck. For me, I’ve learned to adapt to the hot/ cold flashes. You do eventually get used to this sh!t, but I’m over a year and a half in. I’ve managed to maintain our sex life, but I was very proactive about it. I took a use it or lose it approach, but if sex is already painful, you may have to get back to a good place first. At the recommendation of several on this site, I started using coconut oil down there every day as a moisturizer, again from the beginning, before there were problems. It hasn’t been all sunshine and roses, there were a few times when things didn’t work, but overall our sex life is good, just takes a little longer to get things going.

    I guess I’m trying to give you hope that all’s not lost. You Can do this. But if you decide not to, that’s your call to make. Many side effects come and go and change. The hot flashes stay. I still get them every hour and a half or so. All day. I just notice them less now.

    Good luck 🍀!

  • erin_t
    erin_t Member Posts: 77
    edited May 2019

    I'm having chills and sweating from lupron also. Bad sleep. Barely managed depression with Lexapro. It seems like just an especially bad day today. I wish someone would tell me the side effects get easier.

  • Lauren56
    Lauren56 Member Posts: 2
    edited May 2019

    so sorry to hear about all these nasty side effects. I'm very fortunate - have been taking tamoxifen and Lupron for six months and no real side effects except the occasional hot flash and some mild joint pain. I do also take Effexor (an SSRI) that is supposed to help with hot flashes. Worth checking with your Onc & psychiatrist to see if it's a good option.

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2019

    Dear Lauren56,

    Welcome to the BCO community. Thanks for sharing your story. We appreciate it. We hope you will stay active here and connect to other members. Let us know if we can be of help.

    The Mods

Categories