Women on Ovarian Suppression + Hormonal Therapy Unite!

mellee

Any recommendations you have for dealing with joint pain? I had moderate joint pain for the first 6 months or so on tamoxifen, and I found that magnesium helped a little bit. But I'm wondering if any of you have other tips or tricks.

stephilosphy00

Hi everyone! I have been on Aromasin + Lupron combo for almost two years. Does your MO also keep your estradiol monitored while you are on OS? My MO uses ulrasensitive estradiol test and it always comes back below 5 pg/ml. I guess Aromasin + OS is working well for me!

mellee

That's something I'll be asking my MO tomorrow when I get my first shot! I know she just tested my estradiol (using the same ultrasensitive test) and it came back at 592 pg/mL! 😳

That is way above normal levels!

I found some info indicating tamoxifen can dramatically raise your overall estradiol levels, so that's probably what's going on. But you have to wonder what that means for recurrence risk, even if tamoxifen is lowering estrogen levels in the breast tissue. This is all so confusing!

Toyamjj

Hi all!

Ive noticed that I've been tired this week, I'm wondering if I'm experiencing a side affect from the lupron shot I received for the first time March 1st? I started radiation today so I know its not from that, too early and have been sleepy this week. Im due for my period to start tomorrow and feel a few very mild cramps so hoping that I don't still get a period this month? Also in a previous post I mentioned I was going on tamoxifen once radiation is completed, well I was wrong she's putting me on anastrozole.

Fritzmylove

It’s been 10 days since I started Zoladex and Femara, but I’ve been in “chemopause” since December-ish. I noticed that my ankles have been achy today, and hot flashes start right on time every day around 6pm. My hair has recentlystarted to grown back PFC, so I don’t know how the lack of estrogen will affect that yet.

mellee

I just got my first Zoladex shot today. I have no idea what to expect! How soon do people usually start feeling the effects?

I also looked at the list of common adverse effects and pretty much freaked myself out.

mellee

(From Medscape)

Adverse Effects

>10%

Flushing (46-96%)

Vaginitis (5-75%)

Hot flashes (62%)

Reduced libido (47-61%)

Mood swings (60%)

Depression (women 54%)

Sweating (16-45%)

Acne (42%)

Diarrhea (40%)

Breast atrophy (33%)

Headache (women 32-75%)

Seborrhea (26%)

Tumor flare (23%)

Sexual dysfunction (21%)

Peripheral edema (21%)

Erectile dysfunction (18%)

Pain (8-17%)

UTI (13%)

1-10%

Nausea (9%)

Lethargy (8%)

Rash (6%)

Chronic obstructive pulmonary disease (5%)

Congestive heart failure(5%)

Cerebrovascular accident (1-5%)

Renal impairment (1-5%)

Headache (men 1-5%)

Depression (men 1-5%)

Immune hypersensitivity reaction (>1%)

Frequency Not Defined

Asthenia

Hypercalcemia

Cystitis

Dysmenorrhea

Hirsutism

Dyspareunia

Breast changes

Implant site reactions

Bone pain

Spinal cord compression (rare)

Postmarketing Reports

Bone mineral density: Osteoporosis, decreased bone mineral density, bony fracture in men

Cardiovascular: DVT, PE, MI, stroke, TIA observed in women treated with GnRH agonists

Ovarian cyst: Ovarian cyst formation and, in combination with gonadotropins, ovarian hyperstimulation syndrome

Changes in blood pressure: Hypotension and hypertension

Pituitary apoplexy and tumors: Pituitary apoplexy

Acne: Usually within 1 month of starting treatment

Other: Psychotic disorders, convulsions, mood swings

stephilosphy00

After being on Lupron (similar to Zoladex) for 2.5 years , my side effects now include hot flashes (still have a lot!), joint stiffness in the morning (not achy, I keep being very active), and acne (prescription antibiotic cream helps a lot ).

mellee

Stephilosophy -- have you noticed any impact on your mental health? I'm worried about depression, as I already deal with that. I'm managing well on lexapro, but wondering if ovarian suppression is going to send me into a bit of a tail spin.

For the hot flashes, have you tried acupuncture? I've heard that can help. Anyone else try it?

applejuice

I got back the results for the estrogen level testing and by the numbers (FSH 104.3 and Estradiol <5 ) I should be in menopause however the MO said the levels keep changing in perimenopause (still had spotting, period (?) in February) and will test it a few more times before switching to AI. For now Tamoxifen only, at least for a few months.

I am following this topic to learn what to expect later on when switching to AI.

Adelozier

Has anyones dr checked their estrogen level while on zoladex prior to adding the AI? I demanded this as I did not feel like I was on menopause and it turns out I was not!!!! My dr did not want to even test it and now states "oh crap you shouldnt be taking a ai because it will not work" He wants me to have my ovaries out. I feel completely defeated and sad over thos whole entire mess. I am frankly tired of having to fight drs to save my own life. My estrodial came back 36...

mellee

Adelozier, yes my doctor checked my estrogen levels before getting Zoladex. She wants to check them again in a month before putting me on an AI.

Can you switch to another doctor? The fact that he didn't want to to test your levels seems like a red flag.

stephilosphy00

Adelozier, was that an ultrasensitive estradiol test? It will possibly make a big difference. Regular estradiol test shows my E2 from 10 to 15, but ultrasensitive one always shows <5

Adelozier

It was just a regular estrodial test I believe. I was floored to see it come back at 36. I dont believe its like this all month. I have been telling them the shot only lasts 3 weeks .... but of course it's like anything else and I have to literally fight for my life. I asked him about the 3 month shot, I asked about switching to lupron. I asked so much with a no no no. I'm do frustrated. I cant take tamoxifen as I had a SEVERE reaction to it. I'm a young mom and this is not right... the only thing he could say was ...have ur ovaries out. I'm gonna order my own estrodial testing... as I'm in the medical field..

stephilosphy00

Adelozier, how long have you been on zoladex before you had this estradiol test? Make sure you get the monthly shot not the 3 month one.

OTMom

Mellee- I'm also worried about mood effects, but two weeks into lupron I'm actually feeling better mood and energy-wise. I imagine it's more about recovering from radiation and getting back to a more normal sort of life, but it's been better than I expected. I'm sure it'll change and I haven't started the AI yet and I'm sure that'll change things too. But my mood and energy didn't come crashing down immediately, so that's something, I guess...

Nomaddd

Hi ladies,

Thanks for the thread. I've been on Lupron and anastrozole for 2 months and have so far been experiencing few side affects. I try to exercise 4 to 5 times a week which I believe helps with joints and mental health. I however completely lost my libido and I feel like my vagina got very dry. Do you have any recommendations on sexual health after being forced into early menapouse?

mellee

OTMom, that is encouraging. Knock on wood that things keep going well for you.

Nomaddd, one of the women in my breast cancer support group is an Ob/Gyn who specializes in sexual health issues. Here's what she said in a recent email:

1- there is no good medical evidence to suggest that the use of VAGINAL hormones alters prognosis, recurrence or survival - even in women with ER+ tumors!!

2- there are many new and wonderful hormonal and non-hormonal therapies out there, including Intrarosa, a DHEA vaginal suppository that I have also used myself and LOVE.

3- Mona Lisa Laser is a great non pharmaceutical alternative—a laser procedure but not covered by insurance and PLEASE LET THE GYNECOLOGIST NOT THE PLASTIC SURGEON OR DERMATOLOGIST do this- we KNOW vaginas!

pls consider coming to see me for a consult if you are getting no support or push back from your own docs. A happy vagina is so important to quality of life and dryness, pain and irritation are not only uncomfortable but can increase risk of vaginal infections and bladder infections.

hdmom

Fantastic timing, thank you! First Lupron shot was today, and just swallowed my first Femara tablet. I’m premenopausal but can not afford (mentally) to go off my antidepressant. (It’s a combo that is finally working for me so I don’t want to switch to Celexa or Effexor so I can take Tamoxifen.) My current concern is that over the last five months or so, I’ve lost over 40lbs unintentionally. It began before my breast cancer diagnosis. Let’s just say anything I eat won’t stick around for long. 🤦🏻♀️ Colonoscopy came back fine. Dizzy and weak all the time, of course. I don’t know how I’m going to get the Calcium and vitamin D needed with these meds.

I’m not expecting anyone to have a solution, I really just appreciate the shoulder to lean on. Happy St Patty’s Day to you tomorrow. 😊 My teen wants to visit Ireland so maybe we will make it over there in the next couple years

Adelozier

I have been on zoladex 5 months and just now convinced them to check my levels. I'm so angry !!! I feel like it does work 3 weeks a month... I am paying out of pocket to be tested again and on switching drs and asking to try lupron. j get the monthly zoladex shot. it wears off at day 23 ..every month

.

Nomaddd

Thank you Melle. Very good information!

mellee

It's been a week since my first Zoladex shot and a few side effects are starting to hit. I've been feeling a little nauseated and I also have diarrhea (joy!). I also haven't been sleeping well, but I don't know if that's due to work stress or the Zoladex.

Does anyone know how long it takes to feel the full effects? I didn't see my MO when I got the shot so I have no idea what to expect.

OTMom

I felt oddly good for two weeks after lupron but I think I'm gearing up to have one last period now and I feel awful. I had overall been sleeping better since the shot, which is weird, and had been having some increased temperature instability (not hot flashes but heat sensitivity sort of), but nothing dramatic. This week I've had intense cramping and am now fighting a migraine and feeling like I have my period to the millionth degree except that I'm not bleeding. Really hope this part passes soon. My guess is the real effects kick in starting after the second when your body has had a chance to roll through one final attempt at a cycle, but I don't actually know.

ElaineTherese

I started Zoladex at the same time I started Aromasin, so I've never really associated specific side effects with Zoladex. My sleep did get worse, which is why I take my Aromasin in the morning. I also take Melatonin at night, which seems to do the trick.

Walden1

How often are you getting an ultra sensitive estradiol test

stephilosphy00

I am getting it every 3 months and they always come back lower than 5.

BurcuE

hello

İ am using hormonal therapy(tamoxifen) and ovarian suppresion(lucrin depot) for 2,5 years.

İ have oestrogen +, lymph - breast cancer since 2016 june.

İ have alot of side effects like hot flashes, insomnia, constipation, hemaroids, bleeding problems etc. My ovarian suppresion medicine is finished but still do not have my periods. And confused ti extend the suppresion to 5 years from 2

Get well soon to everybody

OTMom

I did finally get my period. Was glad I had read somewhere on this site that it could be heavier, because it was pretty bad. I think I'm past the worst days of it though, and trying to focus on the part where I don't have to have one again if I stay on these meds. Took my first anastrozole this morning. Figured I'd delayed long enough and I should just do it. Second Lupron shot a week from tomorrow. Hoping for manageable side effects from here, but I'm rarely that lucky.

Fritzmylove

Anyone experiencing flushed cheeks? I’ve been getting hot flashes for months, but this is different. My face feels warm, and my cheeks get red in the afternoon. Almost like how I felt being on steroids after chemo.

Garnersuz77

Hi ladies,

Does anyone in here understand the significance of FSH? My recent results showestrogen is <5 and FSH 3.6. My Google research has left me confused on if we want the FSH high or low?

Thank you!