Women on Ovarian Suppression + Hormonal Therapy Unite!
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Megoh - i am given 7.5mg. i would be interested in knowing if both dosage are equally effective. The publication link u sent has an older date?
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Hi Neeli,
I'm looking for more reports as well comparing the two. What I do keep finding is 'guides' with recommended dose:
It looks like the 7.5 /monthly is standard for prostate cancer, but I keep finding the 3.75 for breast cancer (up to 24 months)
https://reference.medscape.com/drug/lupron-leuprolide-342221
I asked my oncologist about this and she said 'regionally' they do the 7.5/monthly shot because they don't want a lapse in suppression - as it's not safe to take an AI if not fully surpressed. I am going to start on the 3.75 and make sure my timing is tight at 28 days and if all goes well I'll bump up to the 7.75, in which my Dr. said it's ok to go to "4-5" weeks, so I may stretch the larger shot out a bit more. I'm always questioning drug dosages because often they are overprescribed. I think they 'go big' because they worry we won't stay tight on the regimen.
Hope that makes sense
Also, my Dr. said I should do lupron for 5 years w/ Arimidex (as I'm 49). Of course I'll push back on this down the road and see if I can be tested to see if I'm in menopause naturally since the Leuprolide manufacturers recommend 24 months. Maybe I'll just get my ovaries out by then? Meg
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Megoh - I called lupron company. All that he said was 3.75 and 11.25 are for females and 7.5 is for males. I asked what if a female takes 7.5 for which he said he cannot answer. He said you need to check with a experienced onco/gynace who can answer this. Anyone's doctor is at the reputed MD anderson/mayo/etc? please check this.
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Anyone experiencing sore throat with lupron and Tamoxifen?. I often have tingling and choking like symptoms .
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VERY good question!!! This is *exactly* something I want to know! What about breast cancer patients who are nurses by physicians by training?! Or lay people who have mixed all sorts of injectables (in my case, including Lupron, albeit in 0.04 mg dose as opposed to 3.75 mg!), with fat gage needles, and injected them intramuscular and subcutaneous, as part of IVF?! In my case, I have to travel between states very often and it would be much easier to mix and inject myself each month rather than go to the cancer facility, or any physician, for that matter. I understand if it makes sense to have the cancer clinic do the first few injections but after that, why cant we patients do it ourselves?! Is it a question of liability?! If so, then why don't they send a nurse to our house every night to pop the Tamoxifen pill in our mouth?
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Zoldex is an expensive drug (average cost $640). I imagine my insurance company would rather have an oncology nurse inject it than to leave it to me (who is not medically trained to do anything).
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How do they decide whether to suppress my ovaries with Zoladex vs Lupron? Thanks
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grateful,
It's the decision of the medical oncologist (MO). My MO wanted insurance to cover ovulation suppression for me, so she put me on Zoladex as Zoladex was used in the SOFT study. If asked by insurance, "why Zoladex?", she would point to the SOFT study. By the way, I'll be entering my fifth year of Zoladex + Aromasin soon. When my MO prescribed this regimen back in 2015, the SOFT study was very new and it wasn't clear whether insurance would pay for ovulation suppression.
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Ok, thanks. That is helpful to know! After the first few months, do they let us inject ourselves? I do not work in healthcare now but mixed and injected a variety of hormones, using a variety of gages, both intramuscular and subcutaneous, when I was having eggs retrieved. After the first few months, will they let my onco call in a script to CVS for the kit (which I know must be kept refrigerated till just b4 use) and I inject at home? I am required to travel a lot, so it is not always easy to get to the clinic. Yet I prefer to inject monthly instead of every 3 months.
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Interestingly, my friend who is a Doctor of Nursing Practice and was diagnosed early stage triple positive 6.5 years ago was given Zoladex every month by staff at the clinic where she received treatment. Her onco cleared her to stop treatment just over a yr ago and she is, thank God, NED. Her husband is Registered Nurse. For some reason, she never self-injected nor had her spouse inject.
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grateful,
I've never been given the option of self-injection. I don't mind going in monthly; I kept my port from chemo, and I need to get that sucker flushed periodically. So, I just combine my shot with a port flush.
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Elaine - SOFT study had zoladex, do you know what was used in NEXT trial?
I had my first lupron shot just few days ago and i ended up with severe skin reaction rashes on chest, back, thighs with lots of itching. I dont know what will be suggested next for me.
Is zoladex always a 3 month shot ?
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No, I don't know what was used in the NEXT trial. Zoladex is monthly, never a 3-month shot.
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I actually wanted Zoladex, but my Onco said Kaiser (southern cal) no longer carries it - I'm guessing it's because Zoladex is so expensive. I start Lupron tomorrow.. and I'll start with the 3.75 monthly shot - will stick tight to the 28 days since I'm not starting with the bigger 7.5 dose. I would totally inject this into myself if they would let me! Will start Arimidex once my period stops - unless Aromasin is better? Still haven't decided
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MegOh - How did your Lupron shot go? I hope everything went smoothly for you. : )
As an update for myself, I seem to be doing pretty well. I have had a few hot flashes, but they haven't been too bad. I did have a headache for several days, but that seems to have gone away for now. I see my MO tomorrow just to discuss the side effects I've had, as well as a few other things.
Also, I do not self-inject Lupron. I couldn't do it even if I wanted to (I HATE needles and medical stuff). But I know some people have done it, so I'd ask your MO about it.
Good luck everyone starting Lupron. I hope you all have zero to minimal side effects. : )
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Regarding the studies, my MO also told me the SOFT trial used Zoladex, but when I looked into it, both the SOFT and TEXT trials actually used triptorelin. I don't know why that particular med was used for the trials but now we get either Lupron (leuprolide) or Zoladex (goserelin). I'll ask my MO next time I see her.
I get the impression they are all pretty much interchangeable. Triptorelin, goserelin, and leuprolide are all luteinizing hormone-releasing hormone (LHRH) analogs so they work in the same way.
As I said further up thread, I think the important thing is to get the shot every month. With SOFT and TEXT, they used a 3.75 mg shot every 28 days. Even with the monthly shot, approximately 20% of patients fail to maintain complete ovarian suppression according to research.
The Zoladex monograph (https://www.drugs.com/monograph/zoladex.html) says the 10.8 mg implant (the shot used every 3 months) is contraindicated in women and should not be used due to "insufficient data available to determine whether this preparation is associated with reliable suppression of serum estradiol." So I think you're taking a big gamble with the 3-month intervals.
Regarding dosage, this is what the Zoladex monograph says: "One implant containing 3.6 mg every 4 weeks. Consider dosage increase to 7.2 mg (3.6 mg implanted to 2 different sites) every 4 weeks in women whose serum estradiol concentrations are not reduced to postmenopausal levels after 8 weeks."
So the 7.2 mg dosage is not intended to stretch out the injection interval! It's crazy to me how many MOs seem to be winging this stuff and going against the research and the drug's own instructions. This is where we have to be our own advocates.
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am one year out from my cancer dx, but now have a lump, waiting to see what breast surgeon says. my lump doesn't show on ultrasound. my cancer did show on ultrasound last year in left, but I had no lump. This lump is in right, which they also found cancer in when I decided to have BMX.
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Thinking of you beep7bop. Hopefully the lump is just scar tissue or something else benign, but it's so stressful not knowing. Please keep us posted. xo
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Mellee - Thanks for detailed post. i had never heard of Triptorelin. I was given a lupron 7.5 and my MO is saying we will do a 3.75 going forward.
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Did anyone's MO talk to them about estradiol levels? I'm seeing some info that they should be under 2.72 pg/mL. Mine have consistently stayed under 10 pg/ml and sometimes under 2, but not every month. My MO hasn't said anything, so I'm assuming she thinks this is okay?
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how often are your estradiol levels checked?
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beep7bop, sending good thoughts your way. I hope everything comes back clear.
Mellee, my MO wants to see numbers under 30. Mine have been 10-14 and suddenly jumped to 28.74 this month which seems weird to me but she's not worried.
I'm struggling. I increased my antidepressant this week so hopefully that'll help but I'm not sure how much longer I can do this. My immune system is all out of whack. I pretty much never get sick and this fall/winter have had the sinus infection that refuses to go away and a worsening of my (previously mostly nonexistent) asthma, leading to a major flare that required oral steroids on top of the steroid inhaler and then turned into another infection with the help of a cold. I basically haven't been well since late August. I don't know if it's the meds or the aftereffects of last year's stress and treatment or something else, but I work with infants and toddlers so am constantly exposed to stuff and need my formerly strong immune system back! I also can't see some of my clients if I'm sick or if I might be sick (even if I'm pretty sure that I'm coughing because of asthma and nothing contagious), so this does not work well in terms of my job. I'm sure my MO will say it's all coincidental, but there are breathing side effects listed for Lupron, so I do wonder. And every time I think I've finally kicked it and am better, something comes creeping back in. This, in turn, is doing bad things for my mental health. I'm so tired of visits to the doctor and of trying to deal with medical issues while also keeping everything rolling as normal with work and my kids and I've basically run out of time off. I thought I was tolerating ovarian suppression pretty well, but now I'm not really sure what to think. Ugh.
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Sorry to hear you're struggling, OTMom. I'm just now recovering from a cold I've had for almost a month (my husband's version lasted a week). Not feeling very resilient, so I feel you.
I've been reading different studies and I did see something where they mentioned that often side effects from Ovarian suppression are worst in the first two years, so that's what I'm holding on to.
Neeli, my estradiol was checked monthly for the first 6 months. Then every other month once I was under 2 mg/pl. If I'm over, they test again the following month.
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That two year figure helps. It’s been almost one year now. I think the uncertainty about 5 vs 10 years makes this seem like an eternity rather than something with a fixed end point sometimes
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Has anyone here started having heart issues from OS and hormone therapy?
My heart was always great, but I've been having some cardiac symptoms lately. I'm getting it checked out, but I don't have any answers yet. I'm terrified of the possibility of having heart issues on top of everything else. Maybe my symptoms are not because of hormone therapy, but I'm definitely concerned.
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Yeah, I’ve definitely noticed more palpitations and irregular heartbeat issues and my blood pressure is slightly higher now. The palpitations seem to be less frequent now, but that’s definitely a Lupron side effect. Kind of keeping an eye on things and will push for more investigation if it seems necessary. Can’t deal with the idea of more doctors and tests. I hope you end up with some reassuranswers and ways of addressing the issues soon.
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Thanks, OTmom.
Some very brief internet searching said that "weight gain around your waist" and "stress" are risk factors for the heart symptoms I've been having. I can say that OS+hormone therapy has caused new "muffin top" on me - even though I am only 7lbs heavier than my pre-cancer weight, it all went to my waist. Also, cancer has been very stressful.
Grr. Cancer puts us between such a rock and hard place. I want to treat the cancer, but I hate the thought that I'm damaging other important systems in my body. Sometimes it's so discouraging. Anyway, I'm hoping to have answers late next week.
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Buttonsmachine, I haven't been having any heart symptoms personally, but my primary care doc had me get an ECG after I started Zoladex because it can prolong the heart's QT/QTc interval, which can cause arrhythmias and be quite dangerous. I take Lexapro, which can also prolong the QT interval. And I sometimes take Zofran, which does too. Many meds do and the more you're taking at the same time, the bigger the risk.
So it's not a bad idea to talk to your PCP or MO about it. Sometimes, meds can be switched. For example, my ECG was okay but if it hadn't been, I probably would have switched to a different SSRI.
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FYI Lupron can prolong the QT/QTc interval too. I ran my meds through a drug interaction checker which is how I found out.
Credible Meds has a bunch of info on QT drug interactions: https://crediblemeds.org/everyone/
Handy PDF (but incomplete): https://crediblemeds.org/pdftemp/pdf/CombinedList.pdf
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Thanks for that info, mellee. I didn't know that Zoladex did that to the heart, and no one ever told me. As I've gone through cancer treatment, I find that it's a really difficult for me to balance being informed, and being informed to the point where it just causes more anxiety. When I was first diagnosed I wanted to know everything, but as things got worse with my cancer and I had my local recurrences, I felt that knowing all the bad things that can happen was too overwhelming. Now I usually just get the "main ideas" about drugs and hope for the best.
I'm wearing a heart monitor for two weeks, and then I will see a cardiologist and get an echo and an ekg next week. I haven't had a heart workup since before I started AC chemo, and a lot has happened since then. My MO made the referrals, but didn't speculate with me a whole lot about what is going on. We'll see what the results are I guess. I know that something is going on with my heart though. I just hope it's not too serious.
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