Women on Ovarian Suppression + Hormonal Therapy Unite!
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Thank you Mellee. My skin has changed so dramatically within 4-5 months since I started anti-hormone therapy. I do use retinoid at night and egyptian magic during daytime. Vitamin B complex and fish oil have been helpful as well. Still.... My hair are falling like crazy!
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mellee,
Thanks so much! Ordered Peptide booster! Will try other products too.
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I started my third month on Arimidex (brand name). I want to give it one more chance before switching to another AI. As I can see, mostly ladies from this topic are on Letrozole. How are you doing in terms of anxiety/depression? I want to try Aromasin too. Please if you have long term experience with Aromasin, help me to decide.
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I've been on Aromasin for almost a year now. Very soon after starting it, my mood nosedived. My MO thought it was the ovarian suppression catching up with me (I was about 3 months in with that), but it seemed too coincidental to me. I upped my antidepressant and that helped me get back to normal mentally. I haven't had too many other side effects from Aromasin that I notice. I have hot flashes, but that's more from the Zoladex/Lupron. Other than that, they only things I really notice are that my skin breaks out now, but I don't know if that's from the meds or the ovarian suppression. I feel lucky on the whole with how well I'm tolerating my treatment regimen.
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mellee,
Thank you for your response! You are always so supportive and kind!
I am so happy to know, that some of us doing great on AI! Did you choose Aromasin on your own, or it was suggested by your MO?
I will discuss switching to Aromasin on my next appointment. I also read that Aromasin causes less bone/joint pain than Arimidex.
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Hi Mika, I have ILC as well. What stage are you?
I started Lupron in October and Letrozole in December. I spaced them apart to give my body a chance to add one poison at a time
. Lupron was brutal to me. I had 4 injections and in these 4 months I got most of side effects that are written for Lupron. Letrozole and Lupron together were not a good combination for me as well. Since February I removed Lupron and I feel better under Letrozole alone. I get some minor hotflashes- not a big problem. I get tired easy - still not a problem. My skin and hair have changed - I'm trying to catch up with supplements, Melle is recommending. Mentally, I feel OK. There are days I feel sad, but other days I am just fine. My MO said it takes 4 months for the body and mind to adjust. There are some bad days and some good days. Couple things I learned from letrozole:
1. always take it at the same time. I tried to move the time even though the nurse said within an hour would be OK, it is not. Make up the mind what time you'll take it and put the alarm in your phone.
2. take it with food even though directions say with or without food, in my case with food works better.
3. in my case works better when I take it at nighttime.
Anytime I feel sad, I call a friend or start reading any funny story or so. Mind is very powerful and I am trying to take care of it. We are lucky to have a wonderful group of Ladies in the forum that will understand and give you great tips. I appreciate them all and I consider myself lucky to know them.
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Hi Lilly,
Thank you so much for your advice and support!
Mine was Stage 2A. I had BMX and radiation. I started Lupron and Arimidex at the same time. So, it was not a slow transition
Fingers crossed for all of us to go through this treatment with no SE!
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Mika, I heard it gets easier. I have a friend that completed the years in AI and she decided to continue. I am sure we will get there too, where SE will be minimum. Regarding SE, fish oil and other supplements help as well.
I wonder why did you get radiation since you had BMX. How many nodes did you have positive if you don't mind me asking.
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Mika, I'm so happy to help in any way I can!
My original MO never discussed AI options, just put me on Aromasin. So far I've done well on it so I've stuck with it, but my new MO (who is beyond awesome and really proactive about quality of life) recommends an AI switch when women are having issues so I think it's smart that you're going to talk to your doctor about that. My MO said that even though the different AI drugs do the same thing, you never know how your body is going to respond. A good percentage of her patients feel better after switching.
I haven't had bone or joint pain on Aromasin, so if that's been an issue for you I say try it! I also recommend magnesium when you're feeling achy. I take Doctor's Best High Absorption Magnesium Glycinate Lysinate. I also drink Natural Vitality Calm before bed. Between the two, I get at least 400 mg of magnesium per day (I take more as needed). Magnesium is also good for mellowing you out a little when you're feeling stressed.
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Lilly,
I had only 1 node removed with "rare isolated tumor cells". My OncotypeDX was 11. Since I had a multifocal tumors in addition to the situation with my node, I was recommended to get radiation (28 sessions).
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mellee,
Thank you! I'm taking magnesium as a part of the bone building complex, but definitely I have to add Calm at night.
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Hi Everyone - I'm new to the group but its so great to have this thread, I've been doing Arimidex and Lupron since January 2020 (I was on Tamoxifen for 6 months prior to switching). Overall, I've done pretty well outside of constant hot flashes. I did lose a lot of hair when I took tamoxifen...seems to be getting thicker since I started taking Arimidex. I (like most of you) am concerned about my overall well-being...I feel like I have aged 5 - 10 years over the past year. One of my biggest concerns is weight gain...I have gained about 8 pounds over the past 4 months (doesn't sound like a lot but it is to me)... Has anyone experienced weight gain/changes when they started Arimidex/Lupron?
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Yes, I’ve gained at least 5 lbs and am really struggling to maintain, let alone lose it. I eat very healthy, only 3 glasses of wine a week and regularly exercise.
My husband keeps losing weight and I keep gaining. It’s pretty demoralizing.
Any help appreciated.
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I have not gain any weight. I do feel very strange that my pants are getting lose. I have lost muscle mass and I hate it even though I exercise everyday. The nurse told me that it is a sign of menopause because of anti-estrogen medication. I don't like sweets in general and I have stopped drinking any alcohol because I am ER+.
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MikaMika,
I've made it through 5 years of Aromazin + 5 years of Zoladex. I will continue for another two years. At first, I was really moody on this regimen, so I asked my oncologist for an antidepressant. She prescribed Celexa, and I've been fine since.
Christina,
I have gained weight since I've been doing AI + OS. I have lost five pounds and sometimes more, but I have gained and lost some pounds over the years.
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ElaineTherese,
Thank you for your response! Could you please share your tips for skin/hair/bone health?
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MikaMika,
Zoladex + Aromasin gave me full-blown osteoporosis, even though I was taking Calcium + Vitamin D twice a day. So, my oncologist prescribed me Prolia, and my bones have improved to osteopenia. I continue to take my Calcium + Vitamin D twice a day. Make sure you get regular dexa scans, once every two years, so you can monitor bone density.
Skin health + hair health -- melee has some awesome advice about this. I actually have not suffered any hair thinning or dry skin, so I don't do much for that.
Good luck!
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Thank you so much!
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mellee - You are on the 3-month dose of Lupron, correct? Have you noticed any increase in side effects from the once-a-month dose? I know I asked this before, but I thought you said you just started the 3-month dose, but so far you've been fine. I have to decide on the 3-month dose when I see my MO next Tuesday.
I may need surgery in the next month or so, so it's probably best I get the 3-month so I don't have to go back in there when I'm in recovery. I just worry about my hot flashes getting worse or my depression getting worse (which is bad enough as is).
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I got my first 3-month shot just over a month ago. I'd say in the last week I noticed a slight increase in my hot flashes. I don't know if that has to do with the 3-month dose or not, but it's definitely possible. Other than that, I really haven't noticed a difference. With depression in particular, it hasn't made things worse for me.
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Hi gang, I'm new here. I had my first Lupron shot on Wednesday and will start Aromasin. My Dr. wasn't clear when to start it. I think he said you are supposed to wait a week, but you really don't have to anymore........ How long should I wait to start? Thanks!!!!!
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Welcome, JRNJ! What your doctor said seems very odd. Is he checking your estrogen levels? They should be doing that to ensure it's suppressed enough for the Aromasin to work. I had shots for 3 months, with my estrogen levels checked each time, before my doctor switched me to an AI.
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Thanks melee! A little more background. I was premenopausal and regular at 54 when dx in August 2019. My MO checked my hormones in fall and they were still high. Went to Sloan for second opinion. They recommended CMF chemo and ovarian suppression with AIs, no tamoxifen. I prefer to get my ovaries out, but put it off til August. My local MO is following their recommendations. Chemo put me into chemopause, last cycle was 1/5/20. He thought I was getting the surgery, but I told him I might postpone and get the shot. I went back for the shot and just saw the nurse. And no plan to check estrogen levels. Than I read on one of the forums that if you start too soon, it may actually increase estrogen? I'm confused?
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Hello, just wanted to pop in and introduce myself. I’m triple positive and am finishing up my final round of TCHP before I continue with HP and start rads next month. With that, I will also be starting ovarian suppression and hormonal therapy. I don’t have my exact plan yet, but I know I’m on it for the long haul being only 34. I’ve appreciated reading through this thread and getting an idea of what lies ahead for me
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Hi JRNJ, I can see you have same diagnose as me ILC. Very different comparing to other types. I go to Dana-Farber and I had several opinions from MGH and Dana-Farber. I was told from all that chemo doesn't work on ILC. Same as you I was pre-menopausal and I started on Lupron shots. Letrozole started 6 weeks after the first shot of Lupron since Lupron does increase estrogen fist before it suppresses the ovaries. For me worked better to start these powerful drugs one at the time. Let me know what will you decide. Best of luck!
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Thanks Lily for the input. (I love your picture!) I read what you read that it initially overstimulates ovaries. I read some posts from when this thread started and there were a few women who started AI the same day as ovarian suppression. I wonder if it is ok because I was in menopause from chemo? I haven't started yet. A week won't matter, and I wanted to see what the Lupron does to me. But I go back to work 6/1 and was hoping to have a few days of extra sleep if I needed them. Regarding chemo and ILC, I did a lot of reading and agonizing. I wanted to be aggressive. My Onco was 15. I read chemo can be effective on ILC but has been shown not to be "as effective", for example, when monitoring large tumor reduction, they may not get complete pathological response, although I just read on another forum someone with iLC did get CPR. I had LVI and extranodal extension and pleomorphic features, which are all indications of more aggressive ILC. And trials for Ocotype with positive nodes is still ongoing, it's just too soon, and 11 to 18 is a gray area in NCCN guidelines. But the Drs. had different opinions. 1. said I don't know, 2. said NO chemo (Rutgers NCI center), 3 said YES chemo, but CMF, a less toxic blend. This was Sloan and I trusted them, she quoted everything I had read about the studies. Then I see people on these forums with DX similar to ours that they had TC, or ACT and I' thinking what the heck! So many inconsistencies, it's frustrating. Hopefully none of it will matter and we'll all be OK!! Were you on Tamoxifen? Sounds like your Drs. and Sloan agree on that one, right to AIs. My other Drs. would have put me on Tamoxifen for a few years. I read Tamoxifen may not work as well with ILC, but my (local) BS never heard that.
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Is anyone else having a very difficult time with ovarian suppression plus aromatase inhibitors? I’ve been on this combination for about six weeks. I got a Lupron shot and started anastrozole, but was only on the anastrozole for about three weeks. I stopped it because I was having an unending migraine the whole time. I started exemestane and have been on that for the past two weeks. It doesn’t cause a migraine, it I am feeling so fatigued and having increased depression, also feeling a sense of malaise like when you’re sick. I’ve had these symptoms the entire six weeks I’ve been on ovarian suppression plus AI. I want to give up at this point, not sure if it’s too early? If I try tamoxifen, I have to get off Wellbutrin. Tamoxifen is apparently not as affective as ovarian suppression plus aromatase inhibitor, either. This is so hard you guys!
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Danee, this might just be me, but I was on Zoladex for about 7 months before starting an AI. For me, I got hot flashes from Zoladex but otherwise felt pretty good. Adding the AI is what really made it harder.
Sometimes things level off in a couple months, sometimes not. My MO said that sometimes switching drugs can help, but definitely give yourself a chance to adjust first. It's definitely hard with these drugs, but at least there are options. Hope you feel better soon.
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By the way, Aromasin had the same effect on me, particularly with the depression and the fatigue.
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Danee,
I went on Celexa after I started Aromasin + Zoladex. It definitely perked me up, and kept me from having these awful mood swings. If Wellbutrin has worked well on your depression in the past, could you ask your doc to up the dosage a little? My moods have always shifted with hormones -- I had awful PMS and depression during the first terms of my pregnancies. ((Hugs))
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