Lupron plus AI
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HI mdnmmrl:
I am not on any type of endocrine therapy. It's been some time since I read those articles for general interest. In view of the complexity and risk of providing erroneous information, I do not dare try to summarize or answer your questions.
I recommend that interested patients study the articles for some background information, and discuss any concerns and possible recommended testing with a trained medical oncologist.
BarredOwl
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mdnmmrl- I've also been experiencing lightheadedness/ dizziness. I'm on month two of Lupron. And headaches! And sleeplessness! I know how you feel. Like you, I have a ways to go til menopause but am wondering if I can just try Tamoxifen and maybe have a better response. I'm 46.
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mdmmrl -- it sounds like Tamox would be good for you. Why suffer? I was miserable with Lupron, not just hot flashes but cold flashes. Lupron isn't a simple switch to shut off your ovaries. It monkeys with your pituitary gland. You don't deserve to feel bad after going through cancer treatment and trying to find your new self. There's nothing to be gained by choosing a harsher treatment. I know that Tamoxifen is a strong preventive. I used it as a treatment (Stage IV) and had great success and manageable side effects. I had previously had an endometrial ablation for heavy periods so was no overly concerned about uterine thickening.
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My MO put me on zoladex and Tamoxifen. She says she won't put anyone on an AI until she is certain that they are menopausal, which for someone of my age (36)means getting my ovaries removed.
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Hi Falconer -
I haven't slept more than 3 hours consecutively btwn the hot flashes and insomnia for 2 1/2 months. I have never felt more light-headed or dizzy and now have vertigo. MO says it isn't side effects of Lupron and AI but I never felt this way before!!
Does anyone know if you switch manufacturers for the Arimdex or the Lupron if it can help? Would want to at least try this treatment thoroughly before switching over to just Tamoxifen.
Any thoughts or suggestions would be great. Yes - FYI - have had all the MRI's and scans for the light headedness and they all came back clear so no blood clots, stroke, heart issues, etc.
Thank you for any advice or shared experiences!
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Hi maryny16:
Elsewhere ChiSandy has noted that "drug products" from different manufacturers containing the same active drug substance (e.g., Letrozole) contain different inactive ingredients. She has found that she tolerates Letrozole from some sources better than others:
". . . For one of the AIs, letrozole, the version with the fewest inactive ingredients is not the branded Novartis Femara, but Roxane. Next comes Femara, then Teva. Not surprisingly, side effects seem to be mildest with these three letrozoles, with Roxane the gentlest (and cheapest).
Why do inactive ingredients make such a difference? Because binders, coatings and fillers can contain allergens, and colors and excipients contain pigments, minerals and mineral salts to which many people are sensitive. A lot of the symptoms of these sensitivities are remarkably similar to the drug's side effects—which when added together intensify the side effects."
Perhaps you could discuss this matter with your pharmacist, and see if you can obtain a version of your current AI with fewer inactive ingredients.
BarredOwl
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my MO prefers monthly vs every 3 month as she says that sometimes it could wear off near the end in the three-month injection ?
As for absence of period being an indicator of menopause I didn't have a period for almost 2 years and then got it back. During that time my hormone levels had tested in menopause and the only reason that I knew that my ovaries started functioning again was because I had an ultrasound that showed follicles. Low and behold him I did get my period back after that
I'm back on Lupron injections and I have to say I do feel worse than tamoxifen alone. Couldn't tolerate an AI
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https://www.drugs.com/pro/lupron-depot.html
Dizziness and lightheadedness were reported in 6% of patients administered.
As BarredOwl pointed out, the other agents do make a difference. I believe Lupron uses gelatin glycolic acid and other ingredients. I can't remember where I read it, but some of the body's sensitivity may come from those additions. I think I was comparing Zoladex and Lupron.
It's good to talk with you all. Thanks for keeping this thread active
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Does anyone have any info on whether the side effects are worse if you have your ovaries out than if you just did lupron shots for 4-5 years (how much time I have left likely before menopause)....Think I can deal with the hot flashes but not the dizziness..hopefully insomnia will decrease over time too.
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if you start a new topic or thread about oopherectomylet me know. I've been wondering about that myself.
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I have asked similar questions about lupron vs ooph in the past. I'm on lupron + tamoxifen. Over 2 years now.
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Ladies on Lupron + Tamoxifen: Is this new, being treated with both? I thought the whole reason for Tamoxifen for pre-menopausal women was because it works without need for ovarian suppression. Lupron wasn't an easy drug for me to take. It's a fertility drug, and after you stop taking it, your ovaries ramp up and produce lots of eggs. It can put your body in a tailspin.
I have done both Lupron and A.I. and Tamox for treatment,and was just curious. It seems like so harsh, using Lupron and Tamox together.
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Tarheel, I'm on Zoladex (similar to Lupron) and tamoxifen now. I tried Aromasin + Zol for a few months and had odd side effects like random severe lightheadedness and scary tingling, so my MO suggested I'll go back on Tam for now and we'll revisit another AI again in a few months. Tam + Zol has been an easy regimen for me so far.
Tam + Ovarian Suppression (OS) is one of the 3 hormonal approaches studied in SOFT/TEXT trials for premenopausal women. These studies compare Tam alone, Tam + OS and AI + OS. The idea with OS is to lower estrogen production on top of estrogen blocker/AI, which seems to increase DFS in some subset of patients (under 35 and chemo cohorts).
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just thought I would offer that I am doing lupron and tamoxifen. I wanted to keep the AIS in my back pocket but my doctor wanted my body producing as little estrogen as possible.
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Tarheel-
Here's a link to ASCO:
https://am.asco.org/ovarian-function-suppression-p...
I think you may have seen it before. I saw your beautiful photo with Luisa on Facebook, btw. What a lovely thing you do
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Thanks for explaining, ladies. :-)
Falconer: Aren't you kind to say so? I enjoy it
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I am also on Tamoxifen with Lupron to make sure my body does not make any estrogen.
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Hey Kathy - I am currently at Harrison location - seeing Dr Singh. I was seeing Dr Cadoo for over a year, but she left breast cancer practice and only does NYC patients. I don't have any other info on testing hormone levels except everyone says it cannot be realiably done and I get 90 day Lupron shot. It's crossed my mind to ooph eventually, but right now I'm doing ok. Occasional hot flashes and some other issues from AI but ok.
Amy
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Hello beautiful ladies!
I'm 38, menopause didn't happen after chemo and chose to try ovarian supression plus AI instead of tamoxifen because had grade 3 with 1 lymph node +. I was on lupron plus letrozole for 10 months, was light headed usually the week before the shot , occasional headaches and big mood swings plus the usual hot flashes and lack of sleep but overall side effects were manageable (I usually don't complain)... I had estrogen levels measured the same week of the shot every month and got to see how stubborn my ovaries were (Onco wanted my estrogen level under 10 but it fluctuated a lot) my onco increased the lupron dosage accordingly but last month I decided to have my ovaries and tubes removed. (Did it before Christmas and back to work on January 3rd)
I want to share the fact that I feel much better. I now realize how lupron was bringing me down physically and mentally as my estrogen levels were unpredictable. I have peace of mind now and I don't have to wonder how much estrogen is coming from my ovaries. So far letrozole alone is much better and I'm ready to take it for 10 years.
Thank you all! I seldom write but usually read and keep up with your posts and sometimes I even talk about you with my family... (all good things, lol) somehow I feel like I know you and I'm very thankful for having your support and I keep you in my prayers.
Everyday I remind myself to look forward with a smile and to let go of anger and guilt... Every second is precious... I wish you all the strength to enjoy life as much as possible!
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Hopeisme... I am definitely leaning more toward ovary removal. I see a GYN is February. I have been getting Zoladex injections and take exemestane. My side effects are definitely manageable, but being 40 I'm not comfortable with not knowing if the shots are the most effective. I don't like he idea of a 3 hour drive time monthly just for the injection for 5-10 years either.
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http://www.pbs.org/newshour/rundown/women-fear-dru...
While this article is not about lupron AND breast cancer, it is thought provoking. It talks about long term side effects that people have experienced after being on lupron for other reasons. Thought those getting it would be interested in this article I ran across.
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hi all,
on my second month of lupron, i experienced hot flashes and bad joint pains. the joint/bone pains are debilitating.i am supposed to be on it for 5 years.if the pain does not lessen, i do not think i can do this. i ask my gyne if i will experience the same bone pains if i just do oophorectomy and she said it will be the same. is this true?anyone here who had oophorectomy and experienced bone pains? i will start arimidex after surgery...
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Just thought I would add an update....side effects of AI & Lupron caused such severe dizziness, joint pain, light-headedness, severe hot flashes -- fainted too --- pretty much every bad side effect on the side of the bottle and after 6 months of sever side effects I finally switched oncologists who immediately switched me to tamoxifen.....hoping for an improvement. the 6 weeks off both drugs in order switch treatment -- was a great reminder of what it is like to feel normal again. Back to treatment now...
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Hi ladies! Is my estradiol (15-20 pg/ml)level too high while on Aromasin?
I have been on Lupron + Aromasin for more than 8 months. My Estradiol has always between about 15-20. I know ovarian function suppression from Lupron is working，I haven't had period for almost 1.5 years, but is it not low enough for Aromasin? I have seen online many women could get to under 5pg/ml with AI. I am afraid Aromasin is not being effective while Estradiol is not low enough. I do have a lot of SEs from Aromasin.
Thanks！
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Hi @stephilosphy00 I am in a similar boat with estrdiol at 23pg/ml with AI. Should I be worried? Guessing since its 2023 you are done with your 5 year treatment? Were you able to complete 5 years and what did you do post the 5yr mark?
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