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Anyone taking Lupron (leuprolide) for breast cancer?
My 42 year old daughter was diagnosed with stage 1 Grade 2 Invasive ductal carcinoma and extensive DCIS. She had mastectomy with reconstruction in April. She started on Tamoxifen in June and is to start Lurpon in August but is very nervous about the side effects of the Lupron. Does anyone have experience with this?
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Hi @auksst, welcome. There are a few discussions in the Breast Cancer group on Tamoxifen. Here's a couple of recent and relevant discussions that I think you'll find useful:
- Tamoxifen https://connect.mayoclinic.org/discussion/tamoxifin/
- Conflicted on taking medication https://connect.mayoclinic.org/discussion/conflicted-on-taking-medication/
@johnvivian's wife took/takes Lupron (leuprolide) for breast cancer. As you like know, Lupron is a LHRH (luteinizing hormone-releasing hormone) agent hormonal therapy. Zoladex and Trelstar are also LHRHs. LHRHs shut down the ovaries and stop them from producing estrogen so there is less estrogen to fuel the growth of hormone-receptor-positive breast cancer. Lupron typically is used to reduce the risk of early-stage, hormone-receptor-positive breast cancer coming back in premenopausal women after surgery and other treatments.
Will Lupron be added to tamoxifen or will it replace her taking tamoxifen? What side effect is she most concerned about?
Added to the tamoxifen. She had one cycle of Lupron when she went through in-vitro about 6 years ago and said she had never felt so horrible in her entire life. Hurt all over, extreme fatigue, just felt ill.
Hi. Not sure if my comment is helpful or not ... I took Lupron to shrink my many fibroids prior to a hysterectomy. The main unbearable side effect was serious sweating - instant and strong. My 'hot flashes' lasted up to 4 hours. Sometimes, I'd feel just drenched, my head and hair hot and sweaty. Best of luck for your daughter.
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1 ReactionAnyone out there that can give "okay" experiences with taking lupron? How long were you on it?
I have been taking Lupron for nine months along with an aromatase inhibitor and I'm doing fine on both. It took a period of adjustment, but now the side effects are manageable.
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1 ReactionHi, first time seeing this group and am thankful… I’m 50 years old, very active and just had a double mastectomy and DIEP flap done 6 months ago. I’ve been on Lupron for 6 months now. The pain in my tailbone and hips is not excruciating but I feel and look like an 80yr old getting up from a chair after maybe 10-15 minutes of sitting there. My fear is my elevated blood pressure that I now have. My diastolic (lower#) is consistently 90-100 or more. Anyone have these problems? I’m thinking of coming off.
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1 ReactionHi! Yes! I'm now 48, diagnosed at 45 with stage 2A HR+ HER2-, grade 3 IDC and DCIS. I have gotten Zoladex injections for close to two years now. I am happy to tell you, I have had NO noticeable side effects from the Zoladex. I also take exemestane (an AI), and that does cause joint pain and stiffness, especially in the morning, and Verzenio, which gives me diarrhea, but the Zoladex is the easiest one for me! I do understand each of us can react VERY differently--tamoxifen was absolutely horrible for me! I could have my ovaries removed instead of continuing the Zoladex, but it's going so well that I hate to mess with what's working!
***I just noticed your original post was from 2021! Oops! How did it end up working out for your daughter?
Are you also taking an AI? They commonly cause joint pain. I take exemestane, and I have pain similar to yours; I look and feel twice my age (48) getting up in the morning, or even after sitting for a while. Thankfully, that "wears off" after moving about a bit. I would definitely discuss the elevated BP with your doc. Not that we want to take even more meds, but that might easily be managed with medication and be worth staying on Lupron. I've been on Zoladex for nearly two years, and have taken both an AI or tamoxifen concurrently; for me, the Zoladex causes zero side effects, the AI causes tolerable side effects, and tamoxifen caused absolutely disastrous side effects. The fun part is, we all can have totally different reactions to the exact same things!
yes I take Letrazole daily as my AI…. I know you’re right about the blood pressure meds. I’m really hoping not to and that exercise and better diet/less salt will help. But, I’ve had a few scares lately with how elevated it is so I’m sure I’ll be starting soon. It’s nice to hear people who can relate. Pretty much the first time so thank you!
can i ask which aromatase inhibitor you take with your Lupron?