Women on Ovarian Suppression + Hormonal Therapy Unite!
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Hi ladies, I have been on hormonal therapy (Lupron and Aromasin) for almost 4 years. I just realized my onc had ordered BCI test for me to determine my late recurrence rate and my benefit of taking hormonal therapy for 5 extra years. I will need to pay at least $1000 out of pocket for the test.
I actually don't want to get the test, I think my young age and one positive node automatically put me on high risk of having late recurrence. I really want to stay on Lupron and Aromasin for at least 10 years or just as long as I can tolerate them fine. I am curious to know the results but I think end up it's all about luck.
Anyone here had declined BCI test and opted for 10 years of hormonal therapy? What's your experience?
Thanks!
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Hi stephilosophy, I just had the BCI and it came back that I get no benefit from another 5 years, even though I had two positive nodes. But I was 40 at diagnosis.
I don't blame you for wanting to do the 10 years. It freaks me out a little to think of stopping my treatment. Plus, like you said, you are so young. There's a question of just how accurate these tests are for younger women. They were developed and validated in large cohorts of mostly postmenopausal patients. I still think they have value, though.
Have you talked to your MO about this? Maybe you could even get a second opinion?
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Hello there
I am 36 years , and today my first time I got lupron shot and I also will be taking anastrozole next week, I am so worried that I will look old after this estrogen shut down ,can you guys tell me what are side effects to our skin and also hair? Thank you.
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Sherry, I'm about your age (37) and my skin and hair have been unchanged. I was worried about it too, but that aspect has been okay for me.
One other piece of advice is to be proactive at maintaining your sex life and preventing vaginal atrophy.
These drugs are not exactly easy, but if you have trouble with one drug, talk to your MO actually switching to another. That can really help. Best wishes to you. 💕
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When it comes to skin and hair on AI it completely depends on your genetics. I started AI+Lupron in March this year and after 1-2 months noticed changes
. I am 39 and before treatment looked at least 5 years younger. As many Slavic women, I have thin skin which became more saggy. On the other hand, some women are not affected so much. Honestly, I stopped worrying about skin and hair. My main issues now are low libido, vaginal atrophy and some cognitive issues.
You definitely got recommendations to do weight-bearing exercises. I would suggest to ask a referral to PT who can show what is safe to do and how to breathe correctly. With low estrogen levels we should avoid putting to much pressure on the pelvic area. Unfortunately, I discovered this fact when damage was already done.
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Hi I was wondering when it is recommended to start ovarian suppression? I have a highly ER/PR + cancer and am currently in the middle of chemo (finished 3/6 sessions), and will have more surgery + radiation after, but I am still getting my period during chemo (it has been irregular so thought was in 'chemopause' but no). My oncologist basically said I can start when I want to but would understand wanting to finish other treatments first to not throw too many things at my body. But just wondering if I should think about starting ovarian suppression (and then AI) now as I'm still getting my period (as heavy as ever)? What have others done?
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Hi!
I waited until after chemo/surgery but at the same time as rads. If you wait, you'll have a better idea of how your body is responding to OS + AI, which can have side effects. Otherwise, you might be wondering whether an SE is the product of chemo or OS + AI. I was also highly ER+ (95%), but didn't mind the wait. Also, you should have a dexascan before you start OS + AI so you have a baseline for bone density, as hormonal therapy can reduce your bone density.
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Thanks so much Elaine for the super helpful reply - that makes sense about timing. Will have to ask for a dexascan as well, as I don’t think that’s routinely done where I am.
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jumpstart, My Drs. said you don't start endrocrine therapy until after chemo and radiation. I asked why and didn't get an answer from BS or MO. My RO said you wouldn't be able to tell what was causing your side effects and it is too much all at once. Also, I got my period twice on chemo, before it stopped, so you may still be on the path to stopping from chemo. I was anxious to start the medication if it would stop my cancer from growing. Now I am in miserable pain from the meds and can barely take them and keep stopping to take breaks. So I would wait until at least after chemo.
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jumpstart, it kind of depends on your unique circumstances.
Some people start the OS before chemo because there is some evidence that it is protective of the ovaries and fertility. That may or may not be important to you. Chemo itself will usually knock out your ovaries anyway, at least temporarily, and your circulating estrogen levels will be lower on chemo and for a little while after.
As for the AIs or Tamoxifen - the way one oncologist explained it to me is that chemo only kills rapidly dividing cells. So you don't want to be on hormone therapy (which in theory should inhibit cell division or growth) at the same time you are trying to seek and destroy the rapidly dividing cells with the chemo.
I hope that helps to answer your question somewhat. In short, there is not really a single answer. I have done it both ways, and it was all really the same in the end, although the OS with the chemo did add to my hot flashes. Best wishes to you.
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I am sorry for off topic. Could you please help me to understand: do plastic surgeons normally send parts of the scar tissue and capsules to pathology? Mine was not sent after the exchange surgery.
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Did anyone have issues *after* stopping Lupron? My last shot was October 7th, and it was supposed to last one month. I had a period about two weeks ago. I started tamoxifen a month ago, but I've been feeling so severely fatigued that I stopped tamoxifen a few days ago, thinking it was the cause. My fatigue is not improving!
I never got up to 20mg of tamoxifen, only 10mg. It seems like the severe fatigue corresponded to me starting the 10mg of tamoxifen, but I don't know if it was the cause. I am wondering if this has something to do with my ovarian function.
My doctor thought there were too many factors going on right now to figure out why I'm so fatigued. I did stop Wellbutrin a month ago, and that caused fatigue. Wellbutrin is an energizing antidepressant. I didn't replace it with anything because I've been tried on most antidepressants already without success.
I'm not sure if this is the right thread for my question because most of you are on OS. I'm just at a loss....I am *severely* fatigued. It feels physical, not emotional. I had to take time off work, and I have trouble completing basic errands like grocery shopping. I feel weird and irritable, and my appetite is all over the place, too.
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orangeflower, no when my lupron wore off I actually had more energy. My other meds don't cause fatique directly, they cause insomina or bad quality sleep, causing fatigue. But I haven't tried Tamoxifen. My main issue is pain, I'm in miserable pain. Usually when I stop a drug I go through withdrawal and can't sleep for several days. So it may be the tamoxifen withdrawal, or still adjusting to being off wellbutrin.
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Hi JRNJ. I'm sorry to hear that you're in so much pain. That is no way to live - I hope that something can be done for you.
I was only on 10mg of tamoxifen and for only a few weeks. I've been off of it for a week, and I'm still very fatigued. I'm starting to think it's due to being off of Wellbutrin. I've tried all the antidepressants that are safe to take with tamoxifen, and none of them worked out for me. If I still feel like this in a couple of weeks, I may have to go back on Wellbutrin. My experience with depression isn't garden variety, it's very severe and chronic. I consider it to be just as serious as the cancer, if not more so.
I may go back on Wellbutrin and ask about Fareston. I brought up Fareston to my oncologist and it seemed like she hadn't heard of it...!
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orangeflower,
You may want to work with a psychiatrist rather than your oncologist to find an antidepressant that works for you. Even with a psychiatrist, finding the right meds for you might take awhile. My son has depression and anxiety and it took us three years to find the right combo for him. Good luck! Depression sucks.
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I haven't been on this site for a couple of years. Came back to learn more about ovarian suppression and Als. I have been on a tamoxifen for 3 1/2 years and we just found that I have NASH caused from fatty liver that can be caused by Tamoxifen. I have to stop taking the Tamoxifen and switch to an Al with ovarian suppression. Looking forward to all the great support you ladies give. First shot of Zoladex is on Tuesday.
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orangeflower, i have had chronic depression and been on wellbutrin for 20 yrs and refused to go off of it. My onc was willing to give me Fareston instead of Tamoxifen (I haven't started it but that's a separate issue). Salamandra on this site is on it and went over the studies supporting it with her onc, so you may want to reach out to her.
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BCat40,
Sorry for my curiosity,
but I remember that one of your MOs mentioned a trial of the new drugs. Did you get any updates from them?
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Mika, I haven’t, but I’ve been wanting to get his opinion on something else so was thinking of another telemed. He was only a second opinion MO as he is out of state for me, so I don’t have a regular schedule with him. I reached out today to get an appt and will ask specifically about the trial.
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BCat40,
Thanks for your response! Could you please keep us updated?
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I will!
Btw does anyone find the new intro at the top of this chat section to be a bit patronizing, or is it just me?
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Do you mean the note up there? Yeah, I agree that it's patronizing.
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I don't like the new intro, especially because they cut the whole list of SEs. For many women major SEs are completely different.
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Mika, talked to 2nd opinion MO today. The trial he is working on is very early in planning, it is for a novel type of hormone therapy that degrades estrogen receptors. However he said the idea now is that it would need to be for post-menopausal women or women on OS -- typical! He said he is trying to get a trial for premenopausal women but I don't think that was the original idea. It seems like this is not going to be something coming to market for us anytime soon, anyway.
ETA, I just googled and it seems like this would be something similar to Faslodex. Perhaps something new in the same drug class.
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BCat40,
Thank you so much for the update!
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Hi ladies
I need to stop getting my monthly Zoladex shots due to my upcoming DIEP flap surgery. It's somewhat urgent and can't wait. My oncologist said that they still don't have the monthly Lupron available.....are there other shots/drugs I can take? I'd appreciate any info anyone can give.
Divergent
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When I was on OS recently, my doctor gave me Eligard because there was no Lupron available. Eligard and Lupron are the same drug, just different brands.
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Thanks orangeflower. I'll mention it to my PS.
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Does anyone have any tips on how to deal with the joint pain and tightness in legs, hands and feet? I just got my monthly Lupron on Monday and Im feeling a little stiff...
Ive read stretching but the fatigue can get in the way.
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I am about to have my first Zoladex injection and then will start Aromasin. Please can I check what the usual amount of time is between having the first injection and starting an AI? (my oncologist provided no guidance on this, and wouldn’t routinely test estrogen levels) thanks in advance for any replies!
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