Women on Ovarian Suppression + Hormonal Therapy Unite!
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I have been on Lupron/Femara since February and have not been able to sleep since then. No medication my medical team (PCP, MO, sleep study specialist) prescribed has helped. Also I seem to be prone to get infections; I was healthy before the diagnosis. Does anyone else have similar experiences?
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Hi all -- just wanted to follow up on my Zoladex "possible" allergy post a bit back.
Welp, after being through the ringer and about a billion hoops I finally have answers. Super duper answers and my MO can just suck it!!!!
LOL, sorry not sorry am just relieved to finally have an answer, even though it may not be the best for my cancer treatments going forward, but it IS AN ANSWER!
According to my Allergist am I am completely and totally ALLERGIC TO ZOLADEX!
Whoooopity doooo! I thought I was going to pass out from joy walking out of that appt, I tell ya what!
My labs corroborated the allergic reaction with the elevated Eosinophils, neck swelling, rash, and response to Prednisone. He is going to run follow-up testing after I'm off of the Pred for a week. Even if they are not elevated at this time, he is quite sure I am allergic and would DEFINITELY NOT FEEL COMFORTABLE with me ever having Zoladex, and most likely any other ovarian suppression medication.
I am walking on Cloud 9 - he was just an amazingly helpful doctor and told me "You have been through alot. Just breathe. We have time and I am listening." So much compassion. I was impressed.
Anyway, that is my GRRRRREAT update for the day! I'm all smiles.
Can't wait to send his report to my Oncologist and let them choke on it. Allergies happen, maybe not to many but they DO happen to a few, and I am one of them. Shame on them for the way they handled this and I expect they will be highly embarrassed (or should) be by how the treated me over the past month and a half.
Wishing you all a happy day full of smiles - I'm going to go celebrate with some day drinking of my favorite wine and a big piece of cake!!!!!!!! Hugs to you all and thanks so much for being here for me through this all. You are all priceless and I continue to say that BCO is full of amazing wonderful caring and just lovely people and I'm so thankful I found you all.
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So happy you finally got some answers (and a doctor who listened), Spoonie! And major props for advocating for yourself and trusting your own instincts. I've found that so important as I've navigated my own treatment. I can honestly say that it probably saved my life when I insisted on having my biopsy lump checked out even though my MO at the time dismissed it as scarring.
Enjoy the hell out of that cake and wine!
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SavingGrace, I've definitely had some sleep disruption on Zoladex/Exemestane. It hasn't been that bad in the grand scheme of things, but I'm someone who has always slept like a log. Mainly, I find that I sometimes have trouble getting to sleep and I often wake up during the night because of hot flashes. Sometimes I wake up really early too, which is weird as I've always been a night owl. Bottom line though: sleep problems are really common with both ovarian suppression and hormonal therapies. Have you talked to your Ob/Gyn? That's what I'm going to do. They help so many women experiencing similar stuff as they go through menopause.
As for being prone to infection, it sounds like your immune system is run down. Makes sense if you're not sleeping. Also stress is hard on the immune system, and going through cancer is incredibly stressful!
Maybe try supplementing with zinc and vitamin C for awhile?
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Spoonie, I'm so glad the allergist was supportive and gave you answers. There's nothing like validation when you've been going in circles over atypical symptoms. Hopefully this is the beginning of feeling better for you.
I just finished my first 3 month lupron experience. I'm not a fan. My estradiol was actually a little lower when they tested, which is really weird because I've been having intense cramping like I get before my period. I was sure I was not going to be menopausal when they tested. I was having weird acne breakouts the last week and all my usual PMS symptoms. I don't understand. My MO is fine with me going back to the monthly shot if I prefer, so I've switched back and we will see what happens.
In other annoying news, I seem to be developing lymphedema and have a PT appointment next week. Since my job requires using my arms, I'm not really thrilled, but if this explains why my breast and ribcage still hurt I'll be happy to have answers and potential for improvement. My surgeon's NP told me I would probably just get used to it when I asked her about it at follow up. Helpful.
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Well I started my Anastrazole last week, and got my Lupron shot this morning. Here's hoping it all goes well.
I am now taking Calcium, D3, biotin (for a little while, trying to regrow hair post-chemo), and turmeric every morning. Anything else you guys have found helpful supplement wise?
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I am so glad to find out my recent DEXA scan shows great improvement of my overall bone density, it was borderline osteopenia -1.1 last April and now it is 0.6. I have been on Aromasin and OS for more than 2 years now, and I am not on any kind of bisphosphonates. High dose of Clacium and Vit D3, Vit K2, magnesium, zinc and a lot of weight bearing exericexes work great for me!
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Does any one have recommendation on how to stop or decrease hot flashes? My acupuncturist wants to give me an herbal tea, but I can;t take anything thing that increase hormones. Do you know of a spot that list herbs we can not take with breast cancer?
I'm keeping a fan on me, sleeping in cotton or lose fitting clothes, drinking lots of cold water...etc
Thank you in advance!
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Hello All!
It's so refreshing to find this thread as well as the website! I was diagnosed with Mucinous Carcinoma in July of 2017. I completed 8 rounds of chemotherapy (AC and Taxol) and had a bilateral mastectomy in January of 2018 and a preventative hysterectomy in May of 2018. The aggressive treatments were due to my tumor size which was 8cm. Surgeon felt he wouldn't get clear margins unless I completed chemotherapy to shrink the tumors.
Today I am 8 weeks out from a Diep flap procedure which, overall, has gone well. My PS told me to come off of the Femara while my wounds are healing. I have noticed I feel more like "me" again after coming off of the Femara....I have been on it a little over a year and suffered from brain fog, joint pain and stiffness and overall malaise. I assumed my side effects were from chemo, however, I realize it was due to the Femara. I am now questioning if I need the Femara since I had such aggressive treatments for this type of cancer. My oncologist is firm in regards to me staying on the Femara or trying Arimidex instead to see if the side effects are less noticeable. I'm having a difficult time remaining convinced on the hormone therapy as I feel so much better off of it.
Have your treatment plans included AI's? If I don't go back to taking the AI's what are my percentages of cancer returning? I appreciate your insight! Hugs to all!
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Hi Melisaw,
You can go to Memorial Sloan Kettering Cancer Center's About Herbs webpage at https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs, type in the herb's name and find out more. My PCP/MO recommend taking Gabapentin, Vitamin E and Magnesium and the combination has been helpful in reducing the severity of my hot flashes.
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Thank you, Mellee, for your suggestion. Sadly, I talked to 2 OB/GYN's and none has much to offer. I may have to double my Gabapentin dosage, though I am quite reluctant to go that direction.
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I have been on Zoladex since July 2018, I got the first injection on the day of my first chemo. I started Aromasin in January 2019, a month after chemo finished.... Not a fan, really! After a very hard spring, with osteoporosis added to the mix, I am now on Tamoxifen (+Zoladex). My MO is not recommending to remove my ovaries due to my young age. I don't know yet
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Do you know what form/brand of turmeric you are taking? Some are absorbed better than others.
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I had took tamoxifen+zoladex for 3 months and my oncologist had me switched to letrozole(femara)+zoladex since the end of July without testing estradiol levels. I'm 40 yrs old now, I wonder if I am considered as menopausal after only 3 shots of zoladex. What would be the right range of estradiol levels if the function of the ovarian are sufficiently suppressed (by zoladex)?Since I read some articles about having somewhat high estradiol level and being on an aromatase inhibitor can actually increase the risk of recurrence. I feel really confused and worried about switching to letrozole this fast...and only taking 1 months of taking AI, I've started feeling bone/joint pain and insomnia
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Thank you to everyone who has shared, I've been reading all the posts and am taking heart! I've just been diagnosed, haven't even had surgery yet but having a lot of worry about the hormone blockers etc... that I will be put on as I'm premenopausal. So, just thanks again. Seeing all of you handling the side effects and sharing is helping my anxiety about it.
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soffeeh- I’m continually surprised by MOs not checking hormones before switching to AIs. There is a chance for incomplete suppression, and yes that’s not good with AIs. You could request blood work. I don’t blame you for being concerned.
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Thank you so much!!! I've been trying to find information on the effects of Lupron + Letrozole on pre-menopausal women. I'm stage 1, invasive carcinoma patient with a little bit of a high risk of recurrence (according to the oncotype test). I decided to do a bilateral mastectomy (due in 1 week), and 4 mo. ago I had a lumpectomy. The treatment recommended by my doctor was Lupron everybody 3 mo. and 2.5 mg of Letrozole daily in lieu of chemo. So far the hot flashes are a thing (really bad); I have moderate joint and muscle pain (not taking pain relievers since I hate taking drugs I in the first place); insomnia has been triggered and I haven't really seen weight gain since I'm a bit overweight. But I'm really concerned about bone density loss and coronary disease in the long run I wasn't menopausal when I started taking the drug. Any thoughts?
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My doctors have recommended 30 min of really high intensity work outs (the type that will really make you sweat). Their patients have noted that the flashes are not as bad at night when they do that 5 days a week.
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honestly the best thing for me and the industrial strength hot flashes has been the medication Lexapro, which is an SNRI - selective neurepinepherine reuptake inhibitor..
Since being on it, hot flashes have gone down from a 10+ to about a 3-4. I am so grateful! They were really bad :-/
I’ve been taking Naproxen once a day for about 3 weeks now. Trying to get on top of the joint pain and inflammation. I think 🤔 it is working?? Feet will be the biggest tell tail. I am not supposed to stay on this forever...but there has t been a lot of clarity from MO about how long I should stay on it. Need to ask!
Sleep is also better now than before I also think the Lexapro is part of it.
Or maybe I’ve finally adjusted to the Lupron and letrozole and Xygeva and Ibrance?? I’ve been on them since March 2017...so it’s been a while now...??
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penguinis- If you’re worried about bone density, request a baseline dexa scan when you start. This way they can at least monitor your bone density. Some MOs put patients on bone strengtheners. You could also do OS + Tamoxifen. It’s not quite as effective as AI, but better for your bones. I’ve found there’s no Good choices, just ones that suck less! And that depends on where you’re priorities are.
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SoffeeH, I was fully suppressed after 2 shots of lupron at age 41, but I agree that your levels should be tested. That's really the only way to know.
C Penguins, definitely ask for a baseline dexa scan. I should have been fine, but already had osteoporosis so I get infusions every 6 months and take supplements to try to build or at least maintain density. Some of the problems I've had with insomnia have improved over time. Still working on the hot flashes. I was already on an SNRI, so I probably don't get them as intensely or frequently as some people, but they're still rough. I have heard that some side effects settle out over time and some worsen, so I'm not super helpful I guess. My MO doesn't really have a protocol for monitoring the coronary stuff, but she does do bloodwork frequently to keep tabs on how my body is coping with the meds, so that's something.
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OTMomCpeachymom and everyone! I'll definitely ask for a baseline test! Since I started on the meds just this past July, I should be able to get fresh data. Many thanks
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Alden722 - regarding supplements, for biotin supplements for hair, my dermatologist said you should look for a combo supplement that includes:
- 3 milligrams (3000 mcg) biotin
- 30 milligrams zinc
- 200 milligrams vitamin C
- <1 milligram folic acid
The only one I could find is Nature's Way Biotin Forte 3mg with Zinc: https://www.amazon.com/gp/product/B000NYG7JG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1Viviscal also helps a lot, although it's pricey.I also recommend magnesium to help with muscle/joint aches, relaxation, and sleep (make sure to get chelated magnesium or magnesium glycinate). And I also take time-release melatonin. That's for sleep, but also studies show that melatonin may help prevent breast cancer recurrence.
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Melissa - What herbs did your acupuncturist recommend? I just saw a TCM doctor myself today. I'm going to do acupuncture three times a week for the next couple of weeks for the hot flashes and fatigue. She also gave me two herbs to mix together and drink 3 times a day: Ligustrum lucidum and Astragalus membranaceus.
I'm really hoping the acupuncture works. I'm on Lexapro, which should help, but lately my hot flashes have gotten really bad. I turn bright red -- like so bright it seems fake! And of course I feel like I'm going to spontaneously combust. It's terrible.
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Mellee - good luck with acupuncture! That's the one thing that helped me tremendously with hot flashes! May it bring you some sweet sweet relief asap!
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That's encouraging, Spoonie! Did your acupunturist also prescribe any herbs?
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HI. I'm in the same boat as you are trying to decide if I do Tamoxifen alone or have my ovaries out so I can go on an AI. My oncologist is really pushing for the AI because I'm 55 and haven't finished perimenopause yet. I can't imagine having instant menopause and the effects of an AI all at the same time. I would be interested to hear what you find out. I did read that there is an Oncotype RSPC model that recalculates your score by adjusting for tumor size, grade, and and type of endocrine therapy you choose so I'm hoping that it might give me a better picture of which therapy to choose. Right now I feel like he's suggesting an aggressive treatment, and am wondering why I shouldn't do Tamoxifen for a year or so until I am naturally menopausal.
I don't know how to add all my BC info to my profile
.5mm Tubular IDC, Stage 1AN0M0. Grade 1. Er+ 99% PR +99%, Her2 -. ki67 <5%
Oncotype score 12. No chemotherapy needed. 3 weeks of radation therapy scheduled for Octobor. I had a lumpectomy with 4 sentinel lymph nodes in late August of this year.
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Hi! I started taking Tamoxifen in July of 2019 as well as a monthly Lupron shot. My oncologist had me stop the Tamoxifen a week before my mastectomy surgery and didn't plan on starting me on it again. I'm still on the Lupron shot and she plans to put me on Letrozole once my estradiol number is low enough. I'm currently having TC chemotherapy treatments but once those are done I'll be having a hysterectomy with oophorectomy and will no longer need the Lupron. I didn't experience any side effects after my first Lupron shot. After my second, I developed nightly night sweats making it difficult to sleep. After my third I now have night sweats and hot flashes during the day. I'm super ready for cooler weather!
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marinesmart, I'm really surprised that your MO is being so aggressive. From your profile, your breast cancer looks about as good as cancer can get. You have tubular breast cancer (which is not as aggressive as other types of BC and isn't likely to spread outside the breast), you caught it super early, it's low grade, your ki67 is low, and your oncotype puts you at low risk of recurrence. Furthermore, you're highly estrogen positive, so tamoxifen should work really well.
Research shows that there are overall, non-cancer-related health benefits from the ovaries, even after menopause, so I would be hesitant to remove them just to allow you to take an AI slightly earlier than you'd otherwise be able to.
I would ask your MO to explain his or her reasoning. Or perhaps get a second opinion.
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Hey Bridget! I'm with you on the cooler weather. Cannot wait!
In the meantime, I recommend getting a handheld fan. I carry this one with me in purse and it has been a lifesaver! https://www.amazon.com/dp/B076KHJPCC/
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