After first shot of Lupron
Hi
I am new to this forum. My oncologist recommended a course for Lupron shoot every 3 months for 5 years as I am premenopausal. Then add Tamoxifen for 5 years after my radiation, which is schedule to start next week. The Lupron shoot was done in the middle of my cycle so I had my period at the regular time. But instead of ending as expected, it has drag on with light spotting for about 3 days now. Before I give a call to the oncologist office, I want to know if anyone has experience something like this. Just trying not to freak out😐️.
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One thing to keep in mind is that the three month Lupron shot might not sufficiently suppress your ovaries. This happened to me. They had to switch me to the one month shot.
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Thank you orangeflower. I left an email to the doc lets see what they say. Hope this "period" ends soon.
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Just an update, found on other blogs/discussions for endometriosis, and per oncologist office, lupron can created havoc on the cycle. Some are ok some are not sooo good. My bleeding/spotting ended 5 days after my suppose last day. Now into January and so far no period but then I am also in radiation now. Could be my anxiety putting that off?…not sure. But I did notice that my anxiety level has increased this month. Dont like this feeling or the 3x "teenager" hormone fluctuations. Going to ask Oncologist on alternatives. In hindsight, if I could have a sense on how I am "feeling" right now, I would have chosen chemo or no lupron or any drugs to induce menopause.
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Zen, the Lupron is supposed to stop your cycle entirely. You are not supposed to be getting periods.
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Agreed. But I think it was done mid-cycle, that was why I still had my period in December. But will be asking my MO to take me off this drug. It has increased my anxiety level super high. And I think that the anxiety level is contributing to my BP issue. I dont get anxiety from someone just coming over the house or someone pining me at work, but I do now.
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Sorry to hear you can't take the Lupron. I couldn't either. It can be a difficult drug for a lot of women.
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Just wrapping up on this thread. Spoke with my MO yesterday and told him I know the risks on not taking the lupron. The emotional roller coasters, and the anxiety were from the lack of estrogen so it wont matter what I take for ovarian suppression. The other option he offered was doing chemo which I said no to. I dont know how I would tolerate chemo, with young kids at home, dont think it is a good idea for them to see mom not in "super" mom state. But with the blood pressure meds, the BP has been in normalcy this past two weeks. Could be the lupron wearing off but anxiety is way less too. Next up, have to start tamoxifen.
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Ok, been 4 months since the first Lupron shoot and my period is still not here. Anxiety maybe better but now I got negative/depressive thoughts coming thru. It may not be this drug but I cant discount it until I know it is out of my system. Asking other members here, how long did it take Lupron (3.75 mg slow release) to get out of your system? Online is saying anywhere from 3 - 8 month since last shoot.
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Going to use this to document my Lupron journey. Hope this will help others whom are going to take it or think about taking it.
Its been over 5 months since my first shoot of Lupron in December 14, 2023 (slow release 3 month) and I still don't have my period. MO order an estradiol lab in April and I am at 11 (still in menopause). But this month of May, my hot flashes are stronger and more frequent than last month. Anxiety feels like it WANTS to take over again, but I think the acupuncture and therapy are helping to keep that at bay. But anxiety is reminding me often that it is still there nonetheless. Negative thoughts are less. Appetite still bad and my weight looks to have plateau, which is good news somewhat as I am not 'loosing' anymore. Working with nutritionist on how to 'pack' back on the pounds, need to add more calories to my food intake. So food is not that enjoyable but more so as a chore these days. I do hope the period is back soon as that is the start of me getting back to 'square one'. I need the mentality I had going into this to continue on this journey and fight.
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@zen1028, thank you for updating us! Your experiences with Lupron and insights are incredibly helpful. Thanks!
The Mods
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Thank you Mods. I invite others whom have had Lupron to write their experiences here. I found from a lot of Endo boards on how they were feeling. I personally have no good experience while on this drug, which is still working in me. Others may not feel the same as there is no 'one size' fits all in terms of any drug therapy.
I am feeling "better" these days but that could be it is moving out of my system. However, base on what other chatter have been mentioning online, even if I have my period, it does not mean all side effects will go away right away. It could take a year or more and some have mentioned that they have permanent side effects that stayed regardless. I wish my MO have giving me more warning or that I did do more research on it before agreeing to taking it. It took from Jan to March to get myself off blood pressure using holistic means. That was triggered by the anxiety that was induced, and my cardiologist have put me down as situational hypotension. Some days that still happen and I need to use coping skills to calm myself down before I reach for a BP pill.
Now I am working on diet as I feel my weight lost was triggered by the anxiety as well due to too many youtube videos on what to eat and not to eat. I need to find the right balance on everything to continue until we have a real "cure" and "prevention" on cancer, not just breast but all cancer.
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I've been on Lupron (monthly) since the end of January, so far all monthly shots. I'll get a 3 month shot soon. Anastrazole was added in on the 3rd month.
I've had increased stiffness but moving and doing stretches and exercises has helped with that. I've had hot flashes that got especially bad (frequent) after the anastrazole was added. During the day there were just annoying but my sleep is already poor and they basically destroyed it. My doctor started me on oxybutinin to help with the hot flashes, which it did, but it gave me bad dry mouth and dry eyes and I think was bad for my sleep on its own.
I took a break from both the anastrazole and then tried with just gabapentin and the lupron. After a few weeks I added back in the anastrazole. It seems to be going ok now.
I was worried about my skin but that seems ok. I do take hyaluronic acid oral supplements as well.
I believe I've had some vaginal side effects as well, and I'm not sure whether these are just the lupron or the combination of lupron and anastrazole. I had 2 (mild) UTIs in a row which I've never before had in my life except if I didn't pee after sex, and I wasn't even having sex. Then when I did try to have sex, I felt much dryer and it felt uncomfortable in a way I'd never felt before.
My oncologist suggested trying a vaginal moisturizer, and I ordered one with hyaluronic acid that I'm waiting to arrive. In the mean time (waiting for it to arrive), going slowly and using lube seems to have woken up my vagina a bit and I'm already doing better.
If the gabapentin keeps helping for the sleep and the sexual stuff works, then the other side effects are manageable for me with activity, exercise, stretching, etc.
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Thank you for adding to this thread salamandra. I have seen from other forums (colorectal and endo) that the monthly shoot of lupron causes less issues than the 3 month. I think if I have had the monthly instead of the 3 month, it may not be as bad as I have it now. But then again, this is not a one size fits all.
But just a thought, from online searches the monthly shoots takes about 6-8 wks to work out of your system from your last shoot. The 3 month, could be 6-8 months to work out of your system from your last shoot. The working out of your system is the ovarian suppression not all side effects, inclusive of hot flashes. Those could take months to years to work out depending on the individual.
As of today, I still have not had my period and anxiety is still prevalent as I had a trigger last week and ended up in the ER. I thought I was having a stroke and all CT scan and lab says I was normal with no issues. Just my 2 cents. I want this drug out of my system sooo bad…I want my life back…
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I think the Lupron is wearing off but NOT worn off. I hope it is just a waiting game, but this is one hell of a drug. I dont know if I said it here but I have mentioned to friends, taking this drug is one of the worst decisions I have made in my life so far. Even my therapist noticed a difference in me on our last session in terms of the conviction of my voice. She said it is "there" today whereas it was not there when we started talking. Maybe something good is happening or could just be the effects of the acupuncture. Either way I am still not back on track to square one until I have my period.
Next week will be exactly 6 months since my shoot of Lupron in December and 3 months since March, when the 3 month shoot of Lupron should have "worn off". I still do NOT have my period.
Just messaged my MO to tell them and if they have any labs ordered to test progesterone levels as well. This is sooo not good for my anxiety. I just saw on a forum on Reddit where one commentor says her period returned in 7 months, shoot was in December first period was in July.
Brain fog, anxiety, and hot flashes are still part of my day to day…those have not gone away since March. I dont know if tension headaches are part of the side effects. If it is, then they have not stopped since March either.
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Salamandra- your situation seems very similar to mine....however, we are all slightly different when it comes to BC I'm learning. My doctor mentioned Uber lube and Bonafide Revaree Plus for the dryness. It has helped a lot.
I'm on the second does now of Lupron. They want me to also take an AI called Aromasin, but I'm not sure I want to. With lupron and kadsyla already in my system, I'm kind of at my end here in being motivated to add one more thing to my body. I want to live, but at what cost? Quality of life is important too. I'm still undecided on whether to take it or not. The docs did say I could switch to tamoxifen if I needed to instead of Aromasin. Now to Google to research yet another drug.
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@fortytwowithidc42, the type of drugs that our MO mentions depends on our each individual situation. From what I can gather on all the googling I have been doing, and one of the reasons breast cancer or any cancer have not had a preventative vaccination at this time, is that it is kinda unique to each person with some underlying similarities like HR/PR, HER2, etc.
But I agree on reviewing online for side effects and what these drugs can do for you in your situation. I kicked myself for not doing that on the Lupron 3 month release. This is why I started this thread and now using it to log my journey of this from Dec 2023 to current. And it has passed the 6 month mark and I still don't have my period. Still doing my weekly acupuncture sessions, and that does help a lot. And once I finally get my period back, will revisit the start of Tamoxifen at like 5 mg and see how that goes.
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Got new labs today to check on FSH and Estrodiol numbers and it looks like I have moved out of menopause. No idea when period is coming though, hopefully in 2 weeks. Last night had something that I have not had for a LONG LONG time, like since March, an anxiety attack that triggered elevated blood pressure. Not sure if that is from the surge of estrogen getting back to my body, but it was not good and resulted in me having bad sleep. Waking every 2 hours and my heart rate was in the 70s vs the usual 60s (according to apple watch). I hate this drug so much. So lucky my acupuncturist has an opening today to see me. I need that so bad.
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@zen1028 so sorry you had this experience! Terrible! It's probably worth mentioning to your doctor or nurse.
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Thanks Mods and I will next week when I see my MO. But it will most likely be the same thing, he would offer me anti-anxiety medication. I feel like that is what all doctors do, they offer you a "drug" to treat your issue. Then this "drug" cause more "issues" and then you go back and they do the same, more "drugs". Great example is this Lupron. See where it got me so far. I was not like this before this drug. Before this drug, I could handle a datacenter down, and it hosts various financial companies operations across the globe without so much as a change in my blood pressure. It has reduce me to this. I expect more of this until my body gets use to the estrogen again. If this becomes a permanent side effect…I guess I will need weekly acupuncture for the rest of my life.
I think I am at an "angry" phase as I see cancer is the leading cause of deaths worldwide, accounting over 9 million. Yet I see most big pharmaceutical companies pushing thru drug therapies instead of working and funding and fast tracking vaccines to prevent and "cure" this. Is greed really that necessary? There are ways to make money and still do good.
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Hello all,
I am on Kisqali and Letrozole. The doctors also want me to take a monthly does of Lupron since I am only 46yo. Letrozole, when used to battle metastatic cancer, is only supposed to be prescribed for women in menopause. However, I asked to not take the Lupron because I haven't had a period since mid-September 2023. The doctors tell me that my cycle stopped due to the chemo treatment, which started back in August of 2023. But I had some irregular periods even before starting chemo. My thought is that I should wait until I have a period again, if I even have one, then take the Lupron. I am supposed to meet with my MO next Tuesday to discuss my Lupron concerns— I don't want yet another chemical in my system when my body has already been through so much, especially when it may not even be necessary.
Reading some of the posts on this discussion page has me thinking that I may be doing the right thing. But I am not sure. I went for a second opinion regarding my treatment plan for my newly-diagnosed Stage IV situation about a month ago and that oncologist highly suggests that I take the Lupron. She said, even if I stop having periods and even if my blood tests show signs of menopause, my ovary (I had one removed years ago) can still be producing estrogen, which is counter-productive to taking the medications I am using to fight the metastatic spread.
This whole journey is so very tough and there is definitely more than just the illness itself we have to battle every day. I've researched for hours and hours over the past 11 months, trying to make the best decisions each step of the way. And I have had to advocate for myself when discussing insurance claims and some medical procedures as well. It is all very exhausting.
Any thoughts on waiting to take the Lupron? I am also considering ovary removal, but I am not sure I want to go through surgery right now. I kind of want a break for a while— it's been one heck of a year!
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Thank you for adding here choosinghope. I can't give you opinions on this one as I am not a medical professional but to say "it's been one heck of a year" is an understatement for us both.😶
I do want to point out that my journey is on the 3.75 mg 3-month slow release not the monthly shoot. Do check out other blogs on endo, colorectal and ivf boards (like on reddit) to see what others have said about lupron. There are other ovarian suppression drugs other than lupron. Also remember, not everyone will have the same side effects. That is why all these drugs, some can tolerate better than others. I am just one of those that cant tolerate WELL. I just really hate it and what it did to me and still doing to me. I can only say I am lucky to be able to find some relief in acupuncture. After I saw my acupuncturist yesterday afternoon, I felt SOOO MUCH better. The fight/flight feeling subsided. Today I am more "normal" so far.
I am 47 and still had regular monthly cycles before this shoot. When my MO asked if I want chemo or ovarian suppression, he did say that chemo would most likely put me into menopause. I think I was starting perimenopause before the breast cancer as I started having trouble remembering things or multi-task. I did think about having my ovaries out but then HRT is another issue. There have been some mention of using Testosterone (heard Jane Fonda uses it…)..which is not proven or accepted in most instances. HRT of any form also increases issues like blood clots, stroke, heart..etc
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8025725/
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@zen1028 Thank you for the reply and the great information. I will look into all of this.
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Just had my MO appointment today. He wants me to start tamoxifen even at 5 mg. He does not understand my hesitancy. He feels that I should take another drug to manage my anxiety and just start tamoxifen. I told him that I am using acupuncture to manage the anxiety and I dont want a pill to do it. For one, there are other side effects, for other, the effect is not instantaneous. With acupuncture, I feel like I am getting a "custom" drug and a boost everytime I go to my sessions. The custom is base on how I have been from last time to the time of treatment.
Right now I am in a good state, really scared on adding in something to my body when I still dont have my menstrual cycle. MO not understanding why I want to wait until I have it. I want that to "prove" to myself that this drug, Lurpon, is really out of my system. To me, just because labs are saying I am no longer in menopause, it does not mean lupron is still not active. Just a mental thing with me. ARRR, so hating this drug. This is making me so not me. It could be the hormones talking as I do get emotional around my cycles.
I cant remember whom, but a member mentioned the oncology DX report could be selected with menopause or premenopause when ordered. I asked MO about it today, he said he was not aware of it and even if it was, the score and the predictors would not change. If anyone knows otherwise, please let me know.
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Just had a talk with my social worker. I was literally in tears in the entire session talking about my frustration with the MO appointment yesterday. In a way, I felt that he negated every effort I have been doing to get myself back to being "me" up until this point. Being me is the mental strength I need to face everything and not scare the heck out of my kids while I am at it. I tackle things face on before this shoot.
To him, I should have done what he said in the first place, take the pill to treat the anxiety, continue with ovarian suppression and tamoxifen. He basically brushed off how my body could be reacting to the estrogen again (the anxiety triggers in April and recently). To be brushed off on my ask on MRI (why would he even order one for me cause my concerns are baseless), why would I even ask about the lung cancer screening (not caring about any recently peer reviewed articles/papers to him also baseless), why I want to listen to my body so I can mentally prepare on my next steps (when I should be on the treatment plan already)…this is so frustrating. I need to find out how to change my oncologist as I need someone to hear me out, my concerns as this is not only my health but my LIFE. How I need to live, stay healthy, stay "cancer" free should be the end goal for me with the help of my health team. I just dont like how this treatment plan is pushed onto me as if my opinion, my needs, my wants are baseless and does not matter. I get no connection with him and he is not hearing me on any of my concerns/asks/fears in the course/eyes of his treatment plan. He is a smart doctor but there has to be a doctor with an ear to listen as well.
There are so many downside and toxicity on pills. I am not saying I wont even think about it. Science is telling me I need to think about it. But the past 6 months, thanks to Lupron, I have been in misery a shell of myself. It wasnt until I found acupuncture that I can find strength to walk out of the mental misery I was in. This has now cast a dark shadow on other "drugs" I need to take. Tamoxifen can cause other cancers and heart problems. If I have my ovaries out, I could be where I was with Lupron, being suddenly slammed into a brick wall of menopause with no HRT. I take tamoxifen, I will once again face the SE I had on the 20/10/5 mg, heart palpitations, anxiety, panic feelings. Then there are more unknown SE as per the MO's treatment plan, I was to be on it for 5 yrs. These 5 years, I could most likely be a mental shell of whom I am. I may need the anxiety or some other drugs help to get thru. In which I may need more other drugs to combat whatever these drugs give me.
If I dont take tamoxifen or toremifene, I take on the risk of recurrence, which may or may not happen in the next 5 yrs. Yet I would be in fear of any pain, cough, headache that comes along on what it could be. But I will be ME facing all these unknowns.
Neither options will guarantee me that I will be cancer free for the next 10 or 20 years. I hate this soooo much. I cant stop crying. I havent cried so much in so many years…almost decades. I want to hug my girls but I cant have them see me like this.
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From 12/14/23 to today, 6/30/24, almost 6.5 months, I FINALLY have my period. I am SOOOO HAPPY that I am on my way to ground zero. Reason I am not there is the side effects from lupron, like anxiety and brain fog, have not disappear with the appearance of the period. Base on other online forums, it will not until possible months later. I just hope I have NO permanent SE left over as there were mention of some of those. This has been one hell of a journey that I will not want to ever go thru again. I think I would like menopause to come naturally or someway would have been discovered to not have it and reduce/eliminate our risk by then. Yes wishful thinking, but maybe the preventative vaccine is right around the corner😁. One can hope.
The next step now is debating on tamoxifen. That has a slew of its own SE. It may be less than what I encountered when I took them while still having Lupron in me. That is a debate/decision that I will need to evaluate carefully. On the good side, unlike this Lupron shoot, it will take 2 wks of stopping tamoxifen for it to clear out of my body vs this 6.5 months or 3.5 month from March (when the orig lupron should have stopped working).
The prior posts here could see when my estrogen did start to come back (June 10 post), the dip in the luteal phase (june 20 post) and the end on Friday's (post on 6/28). So it took from April 11 to beginning of June to move from menopause to follicular phase.
Hot flash have been almost none noticeable. Anxiety still somewhere in the back. Emotions are a little more in check today. These period symptoms, I never had them before this shoot. I have had no periods symptoms prior to this shoot. No cramps, no "down sides" this sever, no anxiety whatsoever. Only way I know I was about to have my period was from the tracking apps. Lets see how the flow is on this first period post lupron and the upcoming weeks/month will be.
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Today is day 3 of my cycle. So far, almost no hot flashes. The flow feels and looks like what I had before. The feelings in my body is borderline on shock/trauma cause of the period. Been feeling anxious/panicky since Monday. Had my acupuncture session today, and got some relaxing chinese herbs from my acupuncturist to try as she is out for a week. I will need to give these a try as the session today helped but I can feel the fight/flight trying to creeping up again. Its like my body is not sure what to do with this "period", like it is saying what the hell is happening here.
This drug, has really done a number on my body. I wanted my period so I can get back to the old me so I can battle again. I was not really anticipating that having a period could be this much of a shock to my poor body. Not sure that it would be a good idea to introduce tamoxifen to my system right now. The fight/flight feeling is still in the back of my mind. Been doing a lot of exercise, and other things to distract me. I hope I can hold off until my acupuncturist comes back from vacation.
Why is it so hard to be "normal" again?🤬
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How old are you? Just wanted to chime in that, in some cases, tamoxifen can act as an estrogen in the brain and heart in an estrogen depleted state, so at some point, it may be helpful to you. I’ve had fewer hot flashes, less irritability and better sleep on tamoxifen than I did with my perimenopausal hormonal swings. I don’t know how medically minded you are or want to be about this stuff, but I recently watched a podcast by leading breast oncologists where ovarian suppression, menstruation suppression due to chemo, and patient preference where heavily discussed. There may be some strategies that you and a new oncologist could use together to find a treatment strategy that works for you. It is long but I think the case studies towards the end of the video could be relatable to you. Here is the link to that:
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I am 47 and not too sure if I was in perimenopause when I was diagnosed. But this is something I will need to discuss with my new oncologist when I see her in September. However, the few times that I did take tamoxifen while on lupron, was BAD. It is hard to describe but anxiety 1000 fold, panicky feelings, just bad. The oncologist I had just wanted me to take anxiety pills and then when depression set in back in March, he just wanted me to take on depression pills. I just dont like this pill on top of pill on top of pill to mask one issue on top of another. I want to LIVE but I also want a good quality of life where my mind is at least as normal as it ever was.
Lupron was not giving me that and still am not even with this period. My body right now is almost reacting like post trauma type of feel. Not sure how long that would go away, maybe after a few more menstruating cycles?
I am not against nor am I saying absolute NO to tamoxifen. But I am just not ready to take it on now with my body in the state it is in. My body right now has estrogen and it is like a "shock" to it after these 6.5 months on lupron.
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Day 5 (yesterday) period has left me. So that was normal in a way. Physical items like hot flashes/headache are almost gone. Sleep has been better, no more waking up every 3 hours or so or few times throughout the night. Mood still has anxiety (less) but now I am in grief and gloom. Think these were always in me, but other mood took precedence or it was suppressed really good (which I am good at). Now they are all on the surface and I am facing them now, whereas I most likely would have faced them at the beginning of all this. I am waiting on my next meet with my therapist and social worker to work thru this. I think once I get more menstruating cycles in and therapy, these could also subside.
I consider these as my side effects from this 3.75 mg 3 month slow release lupron shoot. Many other boards say that it could be months or years for them to work itself out. But this 6.5 months have been a roller coaster of a ride. I dont consider this as the end of this journey until I am back to 95% of the old me. Right now, I think I am at 73%, still got some ways to go.
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This is day 2 of my second period and this time is better. My body is not in shock. The cycles are same number of days as before the shoot, so that is good. There were a few hot flashes and night sweats recently but it's a total of about 4 or 5 times. So its not that frequent. Anxiety is less than last month, but its now downgraded a bit to anxious. This could also be the recent doc visits I have been having and also the upcoming diagnostic mammogram and very first breast MRI.
Less of a watering pot than last month, but still have some moments where tears flow. It is when I think about this that they flow. Not when I just throw this into a mental closet and leave it there. Need to continue working with my therapist on this, why must it be in a closet and how to move myself out of the depression stage of grief. I know why I grief, the lost of the pre-cancer me. Right now I am at the stage of depression I think. Need to get to acceptance and face whatever comes next.
I am working to see if my acupuncture sessions can be a weekly sessions now. Starting this week and so far ok. That means I am doing better on the anxiety/panic stuff. It's slowly getting better. The tension headaches comes and goes still, and I think some of these could be migraines. They have been a little less and yes, this to me is also a Lupron side effect. I hardly ever have any headaches, let alone a migraine before this shoot. Just need these side effects to leave my body so I can get on to being me again, mentally and physically.
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