Bad side effects from Lupron. Concerned about my future QOL
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
-
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.
-
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 🍀!
-
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.
-
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.
-
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
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team