Women on Ovarian Suppression + Hormonal Therapy Unite!
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Does anyone get really irritable from Lupron? I'm normally a really calm and even-keeled person but I have a much shorter fuse lately. I'm trying to figure out if it's due to the Lupron or something else.
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Thanks Lilly! I just get paranoid and need to work on talking myself off the ledge...it’s hard with so many changes to my body and side effects, but I’ll take them and deal with them if it means I get to stick around and raise my boys! Thanks for the pillow tip, I’ll give it a try
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mellee, yes, I think the Lupron is making me completely crazy and giving me headaches and insomnia. A little hard to tell because I've been on so many meds, but in June and this week, as soon as I passed 30 days from the shot, I started to feel like my old crazy self a little instead of my unbearable, miserable new crazy self. I don't want to jinx myself. I'm really hoping it is the Lupron. Getting ovaries out tomorrow, so I'll keep you posted. I may still be miserable on AIs and without my estrogen.
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I also had lots of aches and pains after starting on an AI but it went away after a few months. It was mostly in my knees when bending down, hands and bottoms of feet upon waking. I attribute my lack of pain now to consistent exercise. Hope that will help you too
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Brenda, you make me hopeful! I am starting to exercise more. I'm only about 3 weeks in with Letrozole and I had my fourth Lupron shot yesterday (so who only knows what will happen next) but the palms of my hands are very achy and it feels nasty. It's hard not to focus on it. Ibuprofen didn't seem to do anything. In case it gets worse-- has anyone tried Aleve/Naproxen for AI-induced aches and pains? What about any prescriptions like Neurotin or Celebrex? I really want to be holistic and am hoping that adding black pepper to my turmeric will work better. I'm also going to try tart cherry juice.
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I have found that acupuncture has helped me greatly. If your insurance covers it, give it a try. The Dr. I go to said we do 6 treatments and if it helps we continue, if not, we stop. I felt good about the fact that he wasn't trying to over-hype it's benefits.
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I have done acupunture years ago but I'm not sure if they are open during Convid-19.
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I’ll have to look into acupuncture once the covid tides turn. In other news, today I got my second zoladex shot, but strangely yesterday I started spotting like I was having a period, which continues today. They took some blood and my estrogen levels came back where they are supposed to. MO says see how the next week goes and visit the gyno if it continues.
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mellee - The Lupron can definitely make you more irritable. I've been more irritable since starting Tamoxifen and Lupron. I got even more irritable after the Lupron.
Still having a rough time with the fissures issue. : ( I feel like I will never heal. Have an appointment with my MO next Tuesday to discuss stopping the Lupron, even if it's just temporarily.
I've also been trying to come off Remeron (an antidepressant that was prescribed to me during chemo to help my appetite) and it's been awful. The withdrawal sucks. : ( My MO said just to stop taking it since I don't need it anymore for my appetite and it hasn't been easy. I already take Lexapro, so I should be fine (and was fine mentally before chemo since I was on Prozac). Was anyone else prescribed this? I'm so tired of all these drugs.
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Are your shots once a month or every 3 months? My MO doesn't like to give the 3 month shot due to it wearing off although I am on Lupron.
My acupuncture clinic is open and they take every precaution.
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I’m getting the monthly shots right now. My MO prefers the monthly over the 3 month for that reason.
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I am taking once in 3 months leuprolide depot and exemestane 25 mg daily ,for the past 3 months
I experience hot flushes and joint pains
It improves with exercises and yoga
Taking calcium supplements with vitamin d
I was diagnosed with stage 3A breast cancer
Had neoadjuvant chemo,Mastectomy with axillary clearance and radiotherapy to chestwall and supraclavicular area
Yet to do estrogen levels
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I do the 90 day zoladex shot. I have my estrogen levels checked at the end of 90 days and they are very very low (where they need to be). It’s worth it if you don’t want as many doctor visits and want theflexibility for travel etc.
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Hello ladies,
Sorry for the off topic question. We all here are young and active. Could you please share how your breast implants are positioned (under muscle, over the muscle)? Are you happy with your reconstruction? Did your surgeon use additional stuff like GalaForm, Strattice or similar tissue matrix?
Your answers and experience are very important for me.
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My implants are under muscle. Nothing extra, he tried to get some fat from other parts of the body but he said he couldn't, too skinny he said. In my opinion, I am glad he put the implants under muscle for 2 reasons:
1. Because of anti-estrogen treatments, the skin becomes thinner and weaker and makes it difficult to carry the implant.
2. In case of any recurrence above the muscle, the muscle won't be hidden under implant.
I also requested implants that would be natural looking, same size as real breast. Doesn't feel real for a while but then you get used to as a "new normal".
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Hi Lilly,
Thank you so much for answering.
Do you have issues while doing push-ups? Do your muscles squeeze implants?
My former PS told me that implants would be OVER the muscle, but put expanders UNDER. Now I don't have a choice - this muscle discomfort will stay with me. So I am crying and eating an ice cream.
I would prefer over the muscle implants 100%!!!
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I can't do push ups like before. Also, there are positions when I try to reach bending down and the muscle is working/squeezing and you can see it through the skin. Not a nice view for sure. On the bright side, I don't wear bras anymore. Just cotton sport bras here and there. Funny story, the other day I went shopping. I was on my tank top, sport bras under, mask on and I could see men young and old staring at my chest. I got suspicious and I tried to look down at my breast but the mask couldn't let me so I continued to push the cart. When I got in the car, I could see the nipples poking through bras and tank top since it was so cold inside the store. Now, I have some thin pads handy to insert inside sport bras
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Lilly,
You made me smile!
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Hi everyone! I typically read about tamoxifen OR ovary suppression (or removal) and an AI. Why is it that people move to an AI and not just stay on tamoxifen?
Thanks!
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Hi,
Basically, low risk young women take Tamoxifen.
As for AI, everyone has their own reasons.
For example, many women who had ILC take AI since significant % of the lobular tumors can be resistant to Tamoxifen from the beginning.
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Thanks, Mika!
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In my case, I was premenopausal with a positive lymph node, but a low Oncotype score. So instead of doing chemo, we opted to do Oopherectomy plus AI. Why? There was a trial called SOFT (Suppression of Ovarian Function Trial). It showed that ovarian suppression improved results over just Tamoxifen and Ovarian Suppression plus AI improved results even more. That's probably a bit of an oversimplification, but research "SOFT Trial" for the details.
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kathabus and lily, did your drs tell you to wait on femara after ovary removal? How long and why? Once again my dr has told me nothing.
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I was told one month after surgery. 7/21 was my surgery and I was given 8/20 to start pills. I wasn’t given any more info than that myself....
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I took femara every day before, the day of surgery and recovery. I was told to continue because it doesn't interfere with surgery.
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All, were you estrogen levels checked while on tamoxifen. I asked my MO about this and he said they aren't checked because tamoxifen doesn't stop production of estrogen, it just blocks it.
I keep reading people were moved to ovary suppression because their doctors didn't like their estrogen levels. Clarify, please! I’m newly diagnosed and trying to understand all of this. Thank you for your help.
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Hi StartNew, checking your estrogen levels while on tamoxifen isn't going to tell you anything because as your doctor said, it doesn't suppress estrogen in your body. Tamoxifen works by attaching to the hormone receptors in any cancer cells, blocking estrogen from attaching to the receptors.
In fact, estrogen levels can be much higher on tamoxifen. I found that out when I started ovarian suppression. My estradiol levels were checked as a baseline before my first injection and they were like 4 times higher than normal. I freaked out until my MO explained.
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RNJ, how are you doing? How was the surgery of removing ovaries? Hang in there, it gets easier, so much easier than lupron. Hugs.
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Lilly,
Which symptoms usually disappear after removing ovaries?
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In my case, lupron shots created mental instability: memory loss and dizziness and strange thoughts. I also want to mention that mentally I am considered from people that know me very strong, with good memory so this was a big shock to me and people around me especially my boss
. Second, after each lupron shot, I was getting impetigo and it was very strange since my kids didn't have it. It was all over my face. I would sleep with a turtle neck and tell my co-workers not to worry. Awful! I had dryness all over, skin, eyes, vagina, everywhere. I could drink water all day and all I did is pee every 20 min day and night like babies! Not to mention I couldn't hold my pee, my nerves, my hair, my life. It was scary for me. Removing ovaries doesn't solve all problems but I feel better balanced as the memory goes, holding pee, etc )You are very young and I hope you won't consider removing your ovaries. You need them once lupron time is over for you.
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