Long-term Lupron injection
Hi Everyone,
I'm 45 years old and had my first lupron injection one week ago. No side effect yet. I can't take tamoxifen because I'm a Hep-B carrier. I will start arimidex once my ovaries have been suppressed.
Since the average age of menopause is 51, does it mean that I will most likely need monthly lupron injection for at least 5 years? When I asked the medical assistant giving me the injection, she said she doesn't know anyone that's been on it for over a year. It seems that many ladies on this forum are on Lupron for years. Do you know if there are any long-term side effects? When do the side effects usually start?
Thank you!
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Hi, LoveJoyPeace. I can tell you about my experience with Zoladex, another therapy similar to Lupron, beucase its action is the same. I was 43 when started yoladex and tamoxifen and I was able to stay on the combo for 11 months. Zoladex gave me nasty side effects and most troubling were hypertension and severe constipation,together with strong palpitations. The side effects didnt come right after starting,or maybe I was not able to distinguish because I started Tamoxifen just one week earlier.At first I had dizziness and rare headaches, thez continued with random palpitatons for wich I had a Holter monitor for 24 hours, just to verify my heart. Thank God I was ok.After 9 months I had severe constipation, I couldnt literarily have bowel movement without enema, that was the time I had the first vacation from Zoladex.I felt much better after just one week. I restarted talking it for another 2 months, but I developed hypertension, and my MO said to stop Zoladex, cause the risks outweights the bennefits. So for now I am on Tamoxifen only, wich I tolerate much better.
I was 43 at the beginning of treatment and premenopausal.
One more thing. Acording my experience, the absence of hot flashes, that I hadnt have, does not mean Tamoxifen doesn work. Even from Zoladex I rarely had only warm flushes, and it was only in hot summer days, ocassionaly.And Zoladex worked for sure, beucase my cycle stopped the next month after the first. injection.
So, related to your question, side effects can and do appear later, many months after starting and they are your body respond and adaptation to the treatment.
Be well.
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Great question....I hope you get a lot of answers because I would like to know as well!
I was on Lupron almost continually for 3 years. MO started me a year after I finished chemo as my periods came back. I stopped twice and 2x my periods came roaring back. Im on my 3rd break, been off since June and no period yet, Im 47. I just did blood work to see if im menopausal, but even then I did blood work the other 2 times and I showed I was in menopause then my P came back anyway
To answer your question...my Mo has been very non-committal when I ask her how long I can safely stay on these shots, 3-4-5 years seems like an awfully long time to me. Does anyone know if there are any studies on long term Lupron/Zoladex use?
Is it every ok with ER positive BC to turn these ovaries back on again and do they provide benefits even when you are in menopause, I think if we could answer some of these questions the decision about oval removal/shut down would be easier
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Hi LoveJoyPeace, I have been on monthly Lupron shots for about a year and a half now. I also take Tamoxifen. I admit I can't say I feel great on Lupron, but the side effects are manageable with few exceptions. I was on Tamoxifen since 2011, and started Lupron in late 2014. I take the 7.5 or whatever the highest dose is.
My most immediate side effect was on the same day as my first injection, I had what I can only describe as a major hot flash session and panic attack rolled into one, which was horrible, I thought I was having a heart attack (note to anyone starting this treatment for the first time, spend your first night at home and don't overdo it, this was part of my mistake). Knock wood, that was the only time that happened, although I have found an increase in anxiety since starting this drug. Usually within the first week of my injection I have soreness at the injection site and sometimes swelling/itchiness, and generally I feel kind of zonked and sometimes feel flu-like symptoms. Doesn't always happen.
I'm the same age as you and was pre-menopausal at diagnosis in 2010, and confirmed to still be (despite lack of periods) in 2014.
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Thank you for all the replies.
I had my first Lupron injection Jan 29th (4 weeks ago) and had no side effect and still had my period. I will have my 2nd injection tomorrow and I've prepared many questions for my MO. I will keep you all posted.
I was really nervous about starting Lupron and the SE. On one hand, I was happy that I had no SE yet. On the other hand, it means that the estrogen in my body is fueling the growth of cancer cells potentially growing inside me. That is scary.
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Thanks for the update, LoveJoy. I'll be curious what your MO says about long-term OS and what happens once we stop if we're still pre-menopausal. My MO wants me on Zoladex for "some time" but we haven't discussed the details yet.
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I also had my first Lupron shot a few weeks ago with no real side effects yet. I've actually been calmer than usual- even my kids noticed! Ha! I believe my period will come tomorrow (some small spotting already) and I was told by the nurse practitioner that it should be heavy but then no periods after that. I plan to ask my MO as well. My MO said if everything goes smoothly after a few cycles I could consider removing my ovaries. That would take away the issue of how long do I have to take these shots. My sister is 54 and still gets her period- if I am anything like her I'll be on these shots for 10 years!! Good luck to everyone.
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My oncologist said 5 years. I bled very heavily after first shot, then no periods. I would just like to have ovaries removed, instead of getting injection every month.
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I love my Lupron, and not having periods is awesome! I get the shot every three months. My doc said we'd reevaluate after two years. Both my MO and my OB were adamant that I NOT remove my ovaries, that they provide numerous other health benefits and that OS was the way to go
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In response to your mention of average age of menopause: you might want to check with other older female relatives in your family and see when were officially menopausal. I know that average time runs in families. I wasn't even perimenopausal when I was dx at age 53. Chemo put me in menopause. Don't know how long I would have gone otherwise.
I have a friend who still had regular periods at 56.
Claire
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I'm getting Zoladex shots, and have been for over a year. I'm the only one at my cancer center who is getting them, so every month when I go in, I have a different nurse giving me the shot. They all want to get practice on it. My MO says there is no timeline on it: we keep doing this for as long as it's working and tolerated. So far, my tumors have stayed stable on the Zoladex and Tamoxifen regimen, with no other treatment. I say, if I can stay in "remission" just from these hormonal treatments, with very few side-effects (some warm flushes, and some insomnia), then they are a very good thing.
Those of us with hormone receptors for estrogen are lucky: we have a powerful tool against cancer. We can shut down our ovaries and block estrogen uptake. It's working for me. It's keeping my cancer from growing, and I will use these tools for as long as they continue to work.
ETA: I forgot to say that I am 55, and was still menstruating in 2014, when I was diagnosed.
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Lovejoypeace: What did your MO say?
I just had my first Lupron shot this past Friday. I will also be on Tamoxifen. I am doing neoadjuvant hormone therapy prior to surgery. Kind of scares me a bit to wait, but I'm trusting my MO. I'm glad there are other Lupron ladies on here. I was trying to do a search for a thread and could not find anything. A tip the nurse who gave me my first shot is: She said to keep the injection site warm (heating pad) to help spread the med. I asked 'What about ice?" lol and she said no. Warm. So, I have been sitting on a heating pad off and on since yesterday. She said that a side effect can be a lump. Um...I already have a nasty lump to deal with in my breast, I do not need one on my butt
I believe my shot was lowest dose, but she mentioned when the Lupron shots start being spaced out (every 10 weeks instead of every 4) that I will go to the higher dose. My MO also said she expects me to be on it for at least 3 years, possibly 5. I guess the research is still coming in (SOFT trial). She also said that she does not (at this point) want to take my ovaries out because the expectation is to turn them back on later for the benefits to allow myself some natural time of being premenopausal. I hope that makes sense. It made since when she was saying it. I was taking notes, but unfortunately did not have the recorder with me. I turned 41 this past October and am pre-menopausal at this point. I hope this thread continues and we can share and update about our Lupron experiences and tips on how to help the SE. My only tip is to apply heat after the injection. Not sure if it actually does anything, but it has helped with the my backside feeling sore. 0 -
ayr1016, I had my first Lupron injection on January 20th. No side effects, other than hot flashes and a little tenderness at the injection site. I'll get my second injection at my MO appointment on the 22nd. Another month of just Lupron and then I will be starting on Aromasin. We started Lupron and an AI after I couldn't tolerate the side effects of tamoxifen...namely the joint/bone pain. We plan to stick with the monthly Lupron injections instead of the higher dose, longer spaced ones as I'm 51 and already in the beginning stages of menopause. My MO is doing monthly blood draws to measure estrogen levels on the Lupron. Once my levels are in the menopause range, we'll stop Lupron and just continue with an AI.
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My MO hinted 5 years at least. I think it's because there are no established data on how long we should stay on Lupron (I'm 47). I'm supposed to take Aromasin but after a few months of taking it, I felt the side effects were too awful. Now I only have Lupron shots. I'm due to see my MO next week and discuss my options. I wonder if I can just stop the ovaries producing estrogen and live with some estrogen still in my system without AIs. I'm not sure if people do that at all.
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tree - I chose to do Lupron and Tamoxifen...you could always try that.
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treelilac, my plan, if all of the AIs side effects are too bad, is to just do Lupron. I talked with my onc about quality of life and he agrees. I'm hopeful that by reducing a lot of the estrogen thru the Lupron, my body will tolerate one of the AIs better than it did just tamoxifen with no OS.
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I gained so much weight on Tamoxifen that even my BS, who only monitored me every 6 months, commented on it twice. I also lost significant amount of hair but that was not a health concern. I've had high hopes with AIs until 3 months into the regime my heart and joints began to "act up." Since most likely my MO will just prescribe more drugs to counteract the symptoms, I pray that life style changes plus Lupron would be enough...
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ayr1016: My MO doesn't seem to be concerned about the long-term usage of Lupron. She said the side-effects would be from being in menopause, like hot flashes, mood swings etc. I will be on it for as long as necessary to keep me in menopause. She also said that I can switch to the higher dosage (22.5mg ) instead of 7.5mg and do the injection every 3 month. I think I'll continue the monthly injection so that I can talk to my MO frequently.
Claire: My mom passed away from cervical cancer at 39. My sister is 48 and not menopausal yet so I don't know my family's average menopausal time.
Like Goodie16, I will also be doing blood draw monthly (1 week prior to Lupron injection) to measure estrogen level. I will start AI once I'm in menopause. My MO has already warned me that many people have joint pain and bone ache with AI.
I didn't have any problem with injection site. My 2nd injection was on Jan. 26th and I think I'm experiencing hot flashes. I don't sweat and have no rapid heart rate nor flushed face. During daytime, it barely bothered me. The problem is during sleep when I go back and forth between feeling hot thus kicking off my blanket and feeling cold thus putting on blanket. It's affecting my sleep.
NineTwelve: I agree with you that we are lucky to be ER/PR+. I get sad sometimes feeling that 5 years of my life has been stolen from me, forcing me into menopause at 45 instead of 50. But I need to remember that I'm fortunate to have this tool to save my life. Is insomnia a side-effect of Lupron? I haven't been sleeping well but I thought it's because of the warm flashes I get at night.
I'm also having some mild mood swings. I hope it doesn't get worse. I'm trying to eat healthier, exercise regularly, reduce stress, and think positively to take care of my emotional well being and be prepared to handle whatever comes my way.
Treelilac: Please update us on what your MO said. Would it be okay for you to stop AI and just have Lupron?
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I just saw her this morning. She said there is no data on this kind of treatment plan. In other words, we just have to use our own judgement. She thinks the improvement in my risks of recurrence or overall survival might not outweigh the side-effect/low quality of life if we continue with Lupron and Aromasin. (My blood sugar and liver readings were elevated. I also had varicose veins bulging out on my pelvic floor region and buttocks although they have disappeared since I stopped Aromasin.) We decided to stop Lupron for 3 months and see if my heart palpitation and racing problems would go away. We'll continue fine-tuning my treatment based on the result.
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I had my 1st Lupron shot 2 weeks ago and just started my period 3 days ago. I came back to this thread to re-read it and glad I did.
alf9511 (and Maxdog) I am glad you mentioned that the next period after starting Lupron could be heavy. I have never had heavy periods and this one came on like a beast (only 17 days after my last period, but that was before I had the Lupron shot). Now I feel a bit better knowing this might be normal.
I know a few other ladies just started injections not to long ago as well. How are you doing? Since I started the Tamoxifen just 3 days after I got the Lupron injection, I am not sure which is giving me side effects. I am feeling definite joint/muscle pain. This period is crazy heavy (not normal for me).
For those of you on it long enough to stop your periods...how many periods after starting the injections did it take for it to stop them?
treelilac Do come back and update us on how stopping the Lupron effects your heart palpitations.
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I am 40. I started on the Lupron shot in October, so next week will be my 6th month. I took exemestane for 1 month, then stopped during chemo and started back up last month. I am having terrible hot flashes. So frequent and intense. I don't have any other side effects, but these hot flashes are making things miserable. I haven't slept through the night in 6 months. My cycle stopped after the first shot, but I went into chemo so that will do It too. Anyone taking the product Estroven? Saw it at Costco--a 'natural' product that does not constain estrogen but claims to help with menopausal symptoms. I want to ask my MO about it but I don't have an appointment til april.
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Hello ladies,
I'm 38, just started lupron last month, and got my period last week...
Does anyone know what is the estrogen level that your oncologist considers menopausal?
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I got my second shot yesterday. My levels still aren't in the menapausal range, so I will be waiting a few more weeks before starting Arimidex. Other than hot flashes, I feel pretty good. I did have a period, but it was pretty normal. My onc said I probably won't get one this month or any longer while I'm on the shot.
Hope - I believe my onc said my levels needed to be between 4-8, but I'm not positive. There was a lot of numbers being thrown out yesterday and I was mainly focused on my lower tumor markers (11.8!!). I do know he said two weeks ago my levels were 2.46 and that I was considered in the follical (spelled wrong) stage. We are doing a repeat blood draw in 2 weeks to check levels and I'll report back then.
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I've beenn on AIs an OS for seven months now and just had my fourth shot. At first I had so much joint pain. I still have pain but it is a lot better. My hair has thinned on top a bit and my MO says it's because of the lack of estrogen. I've gained 5 pounds and have fatigue but that has improved. My memory isn't great and sometimes I get out of breath. But I feel all the side effects have improved after my hormones levels have evened out. I do however continue to bruise quite a bit when I get the shot but that goes away after a couple of weeks.
Not everyone is the same, I'm just relaying my experience and letting those who are new to it and have a hard time with side effects know that it is possible it can bet better. I wish everyone luck.
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Thank you Goodie! Thank you Ladies I wish there was a thank you button!
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MeToo14 thanks for sharing your experience. My (short term) memory isn't great now, but I am not sure what med is causing that. I get my 2nd Lupron shot tomorrow. A bit nervous as the joint/muscle/bone pain came really quickly after the last injection. I have been feeling "ok" in that department the last few days though. I don't know if it is because I have been forcing myself to walk through the pain or if the Lupron is wearing off and will get back to pain after the injection tomorrow. I do not have hot flashes (YET). I get the chills though. I'm waiting for the hot flashes to come on. I'm sure that will be soon.
Hope all of your Lupron ladies are doing well today.
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hey ladies.i have been on Ibrance/letrozole/lupron for 8 cycles. Estrodiol is going up and so are my bone mets. Anyone else have similar experience
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Hi ladies,
I 've been on Zoladex/Anastrazole for 3 years now. I am 41 years old premenopausal. I had Zoladex injections monthly at first for 1 year and than every 3 months for two years. I tolerated hot flashes and joint pains ok however I 've had a very hard time with no libido, insomnia ( having to take zolpidem ) brain fog, luck of concentration, mood swings ( my poor husband) anxiety and luck of motivation. I felt very bizarre with my feelings in general . I did not gain weight at all and I am running on average 5k 3 times a week.
I had my oncology appointment last week and I asked my oncologist if I can stop the treatment because my body had enough of it. I also asked if 3 years versus 5 of this treatment will impact my long term survival.
I was advised to take break for 2 months from anastrazole to see if my symptoms will improve first. I will meet with my oncologist again at the end of April and go from there. My next Zoladex injection is on My 18th. She also mentioned to have a blood test done to see if I am menopausal but that will not happened yet till I am off zoladex for a few months. I hope I will feel better soon after taking a break from Anastrazole :-) I will let you all know how it goes.
Good luck to you all
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I have been on zoladex and Al combo for 4 years. I was premenopausal and 44 at dx.
I didn’t tolerate tamoxifen and bled heavily the whole time I was on it.
Please look up the SOFT trials which show great results for 5 years plus Al. This is what my onc has based my regimin on.
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My MO said I'll be on Lupron for 1 year and then re-evaluate. I'm 45 and I assume that I can stop Lupron if I stay in menopause after 1 year of Lupron injection. I'm counting down. I had 4 injections already so 8 more to go. I had mood swings for a while and then they went away. Hot flashes are annoying, but tolerable. Insomnia is what bothers me the most.
Dimidani & kyliet: How long will you need to be on zoladex? If you stay in menopause, do you still need to continue with it?
I started AI (Letrozole) today. Counting down. I'll be done on 4/2/2021. 365 days x 5 years = 1,825 days to go. Hopefully the side effects will be manageable.
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I just received my 3rd Lupron injection this past Friday. I do not want to continue for 2-3 years though. My SE with the Lupron are fatigue and joint/muscle pain. I have noticed that the fatigue and pain lighten up several days before the next injection.
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