Women on Ovarian Suppression + Hormonal Therapy Unite!
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Thanks hapa. Yeah, I thought it might be a migraine too. I used to get them when I took birth control pills, and then they stopped when I stopped the pills and I rarely get headaches, except when they come from neck pain and travel up to my head. I threw up a second time, but after that I felt normal again, except I've had a low grade headache/neck pain most of the day. I also went to the pharmacist who gave me the drugs (and explained the side effects, etc.). He told me that it could come from anastrozole and to be sure it wasn't that, I might want to take it with a tiny bit of food rather than on an empty stomach. I did that just now. I take it at night before going to sleep.
I hope I don't keep getting migraines as that's miserable. Usually in the past I didn't throw up with them, but once it a blue moon it would happen.
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Has anyone had unexpected/unexplained weight loss while on Zoladex?
I'm worried.
My PCP mentioned I have lost 5 pounds in the past week, as I had 2 different appts at the same clinic. She's not worried per say, but has her eye on things.
IMO I shouldn't be able to lose weight now since I've been emotional eating like a fiend for the past 2 weeks due to lymph node swelling and fever for no reason which preceded that symptom beginning. I am shocked I'm not gaining.
To add to my worry, when I stepped on my scale yesterday compared to this morning, I have lost 2 pounds. That would make it a total of 7 pounds.
Losing weight for me HAS always been a struggle, so I am concerned.
Yesterday my Thyroid/Neck US showed a nodule on my right thyroid that will need continuing surveilance, plus many "reactive" lymph nodes of various sizes. One was at the 5B level which was greater than 1 cm in length. Waiting for my MO to get back to me about all of this, but in the meantime just hoping maybe this is fluke.
Anyway, sorry to blabber. Hopefully this isn't Thyroid Cancer or a Lymphoma, as I have a strong family history of both.
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Hi Spoonie, I haven't had weight loss, but my weight does fluctuate by A LOT on Zoladex. In my case, I think it's a water weight/bloating thing, affected by lots of things, including how much salt I ate, traveling, etc. But it's not unusual for me to have 5+ pound gains/losses. Could that be a factor in what you're experiencing?
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Let's hope so. I've never been one to fluctuate more than a pound or two a week and that's only if it's right before my period. Usually I hang out wherever my weight is like I'm anchored there. Uggh. I'd been hanging at the same weight for the past 7 months, despite eating clean and trying my best to be active. Tamoxifen only added a pound or 2 in 2 months and then here I am with Zoladex. Figured I'd be adding instead of losing. So while usually I'd be happy to see weight flying off, given the other circumstances I'm not and I'm sure my MO won't be either, unless of course she's seen this with other patients on Zoladex. Here's hoping that's one thing I hear on Monday.
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Spoonie, has your blood sugar been checked recently? I read that these drugs can mess with blood sugar levels sometimes, which could explain the weight loss. I'd definitely ask your MO.
So far I'm in the slight weight gain camp myself - I hover about 5-7 pounds above my old normal.
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Thanks Buttons. I will be sure to ask my MO about that. My fingers are crossed for anything non-cancer related!
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Spoonie -- hope it's nothing! Let us know what happens.
I am, unfortunately, in the "gained weight' crowd. On OS + AI, I gained back all the weight I lost on chemo + 15 pounds. I have lost 6 pounds since January, but that's only been because I'm working hard at it.
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I have had two Zoladex shots so far. I'm about 2 weeks out from the second. So far I have hot flashes mainly at night and they are impacting my sleep. I also am not falling asleep easily. My MO prescribed Gabapentin, so I'll try that as needed at night.
I had my blood tested and my Estradiol, FSH, and Lutenizing Hormone are all fairly low. I don't know yet if the MO will want to wait another month before starting Femara.
I've been purposely losing weight since before I was diagnosed. The gastro doc says that the cancer was responsible for me losing my appetite. I don't frame it as "appetite", I frame it as "burning need to eat". I still get hungry, but I don't "have" to eat anymore and I don't get hangry. I feel like this is a huge benefit of my cancer and I'm using it to the max! I've lost 35lbs in the last 7 months, and I'm hoping that the OS and AI don't bring it back on!
Since being on Zoladex for a month and a half, I've probably lost 5lbs.
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Ok I lost another 2 pounds since yesterday morning! Omg. I am trying very hard not to freak the F out peeps.
I cannot wait to talk to my MO tomorrow. What if this nodule on my thyroid is breast cancer, METs? That never even occurred to me...at....all....until I couldn't sleep last night.
I have been through uber stressful things in my life and NEVER NEVER EVER lost weight. Something is really wrong.
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I'm so sorry, Spoonie. I know it's hard not to jump to worst case scenarios, and the "what ifs" are so scary! Glad you're seeing your MO tomorrow. Please keep us posted.
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Spoonie, check out this from Mayo Clinic. Benign thyroid nodules can cause unexplained weight loss. (Hyperthyroidism can too, of course). https://www.mayoclinic.org/diseases-conditions/thyroid-nodules/symptoms-causes/syc-20355262
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My PCP tested my thyroid labs this week on Thursday, while the weight loss was going on...all was well there but who knows I'm no doctor. Let's hope that's all it is! I'll keep y'all posted when I know more.
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So for the past 4 nights, I've woken up with a migraine at 4 or 5 in the morning. I didn't throw up like the first night ,but I have a severe left-sided pain in my neck, ear, top of head and above eye that appears like clockwork. I'm trying to figure out if it's coming from muscular issues in my neck or upper back as there are trigger points there or if it's the medication. But it seems odd that I feel fine around noon and throughout the day and then it happens again and again every night. Trying to figure out if it's the anastrozole or not, which I take before going to sleep. So....I'm going to skip the dose tonight and take it tomorrow morning instead to see if there is any difference. I wanted to try and go to a massage therapist to see if that will take care of it, but haven't been able to get an appt. yet.
Anyone else have cyclical headaches/migraines from this?
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Hey spiralforest, I don't get cyclical headaches but I've heard female hormones and migraines are linked, so wouldn't be surprised if this is a side effect. Hopefully temporary though!
Circling back to an earlier convo on the thread about Zoladex every 3 months vs 1 month: I spoke about it to my MO yesterday. She doesn't do 3-month shots. They only have FDA approval for prostate cancer. She says they can be problematic for breast cancer because they don't always work for the whole 3 months. So women come in and say they feel much better during the last 2-4 weeks of the 3-month cycle and then when you test their hormones their estrogen levels are back up out of menopause range. So I advise at least talking to your MO about this if any of you are on a 3 month cycle.
Also, I went over my side effects (fatigue, low mood, brain fog/memory issues, nausea, sleep disruption) that I thought were from the AI and my MO thinks they are probably from the lack of estrogen, not the exemestane. I guess they are all classic menopause symptoms. It takes a few months apparently to feel the full effects. A bit of a bummer because I was holding on to the hope that I could always switch back to tamoxifen if I don't start to feel better. But I'm still hoping my body will adjust with time.
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Mellee - I noticed you started the Zoladex first and then added in the Aromasin 3 months later. Did you notice any difference after you did? I was curious which side effects might come from each one. I feel like I blame my AI for more since it seems like what it does is more extreme. But who knows.
That's too bad about the 3 month shot. This monthly shot makes it difficult to make travel plans, and is also just rather unpleasant (and I've only done it for one month!). I'm hoping after a year I won't need it anymore (I"m 54).
I did switch to taking it in the morning with breakfast. But I did this on the same day as I went to see an osteopath (last Tuesday morning) and I stopped having the headaches after that (which I had for 5 days). It's a sharp and throbbing pain in my ear and eye and the top of my head feels like it's on fire. I did some research and determined that it seems to be pain in the lesser optical nerve and greater optical nerve. The pain follows the nerve pathways exactly. And the top of my head in that one spot becomes hot to the touch. So weird.
Since Tuesday night, I also slept only on my back with only a few min. on the side as I have a fear of that causing the pain (as it did before). That makes my lower back ache and feel stiff in the morning, but that minor back pain is better than the agonizing head pain.
I haven't had the severe pain again, but early yesterday morning and this morning, I noticed a slight sensation of discomfort in that same area, starting in the ear, but it didn't continue to full on pain. But what is interesting is that it was not connected with movement, but with a hot flash starting. This morning the same thing happened, but it happened on the right side!
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I noticed a huge difference after I started Aromasin. Within a week or so, I crashed emotionally and physically. Just completely exhausted and depressed. My MO thinks that a week is too soon to feel effects like that so she thinks it was due to the Zoladex kicking in, but I don't know. Maybe she's right, but it was so sudden. Like a switch flipped.
The pain you're having sounds terrible! I hope it gets better. I do have some tips for sleeping on your back though. I got a double mastecectomy, so I was forced to sleep on my back for like 6 months and now I'm used to it. At first, I slept on a wedge pillow because I really needed to be propped up. But now, I just pile up three or so pillows to make a slanted surface for my head and upper body. That should help with your back pain from that position.
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Hi all -- Just wanted to share my latest update with those who will be starting in on Zoladex or Lupron soon.
If they tell you you are not having an allergic reaction to either of them, do not listen. Keep speaking out. Find someone that will listen.
This happened to me on my first month of Zoladex.
Nothing has been determined OTHER THAN the fact that I am likely allergic (not proven, just a theory of my PCP based on dramatic results from taking rxd Prednisone) to Zoladex. Arrived at my MO's office for an appt last Friday, they looked at me and said "You need to see your primary for this. We can't help with whatever is going on. You ARE NOT having an allergic reaction to Zoladex. It just doesn't happen." And get this, they still had the gall to ask me, "So would you like your second injection today while you are here?" Uhhhhhh no freakin way. Ugggh.
So though it rarely happens, it happened to me. I am the minority, I am the odd ball, I get all the weird stuff and I cannot tell you how devastated I was yet again to be turned away while looking like this (see neck below) and not treated. My other symptoms were unexplained fever, nausea, red pustular rash, itching, swelling of throat/neck....even with showing all of this (documented in picts) to my MO, they did nothing.
My PCP got me in later that day, was talking of putting me in the hospital due to the reaction, since I was now experiencing new pain in my throat and ears due to the swelling (prior had been painless/just aching from stretched skin), but I pleaded to stay home and try her rx of Pred first, along with mega doses of Claritin (2 tabs 3 x day) to see if it would calm the storm. She agreed since I was still breathing well. It worked. Within 48 hours my neck was back to my normal.
A side by side is just crazy to me....and yet my MO and her nurse both said nothing they could do for me. Feel insulted to say the least.
Here is the timeline of my onset of symptoms if anyone is interested. This is why we have to be our own detectives. Seriously.
* According to FDA, "Goserelin (Zoladex) is released from the depot at a much slower rate initially for the first 8 days, and then there is more rapid and continuous release for the remainder of the 28-day dosing period." and also "[chart] Time to peak concentration (days) FEMALE: 8-22 Days". (This is shown by the green and the orange vertical sections on my timeline)
https://www.accessdata.fda.gov/drugsatfda_docs/label/2011/019726s054,020578s032lbl.pdf
Have been refferred to Immunology (for the Zoladex reaction) and Endocrinology (for thyroid nodule).
More hoops and red tape and unfortunately more waiting.
Found out the nipple pain I've been experiencing for the past month is due to new cording and lymphedema under my nipple that developed and presented after the Zoladex injection caused swelling and inflammation in my body.
The story continues. It is a battle every day but I am battling. Will be back as a I can. Nothing to spare and when I'm not filling out forms, seeing drs, or making phone calls, I am sleeping. Oh, and I had 35 hot flashes yesterday. Uggggh. Cannot wait till my hormones are back to normal. It's pure insanity on top of insanity.
Hoping you all are having better days than I am. Hugs and healing to you all my friends.
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Thanks for posting this! I started Tamoxifen in early July, and had my first ovarian suppression shot the third week of July. Once I've had three shots, the doctor wants to move me to an AI (letrozole).
Here's my question: I was tested for my estrogen levels before I started, and I am perimenopausal (hence the ovarian suppression shots). How will I know when I've gone through menopause and can stop the suppression shots?
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Spoonie, I am so sorry that happened to you - how scary and terrible! I hope you feel better soon. Please keep us posted on what your next steps are.
These OS and AI drugs are tougher than I anticipated, at least for me. I have been on Zoladex for about a year without incident. However, we added Aromasin to the mix six moths ago, and I have really struggled with it.
About a week after starting the AIs I had a really serious emotional crash that lasted four or five months. Then just when I thought the emotional fog was lifting slightly, I got hit with painful hands and trigger fingers/thumbs. I couldn't even hold cups, drive, or open doors without significant pain and joint popping. My MO said that I could totally lose hand function if we go on like this. The plan is to take a small AI break, and then switch to Letrozole to see if that's any better.
It sucks. Tamoxifen already failed me (I had a recurrence while on it), although I tolerated it better. The AIs in theory are working, but they're wrecking my life. I'm not ready to throw in the towel yet, and I'll give Letrozole a try, but this is discouraging.
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Atl1967 - I'm guessing that is your birth year (1967), so you are two years younger than me. I still got my period every two months after my BC dignosis, so I am on zoladex too. They told me that I would take it a year and then stop and see if I get a period. So, it's as low tech as that. But technically you aren't in menopause until you haven't had a period for a year, but I'm guessing if a period comes before that, then I'd go back on zoladex. They did a blood test before I started, but I don't get the results until next month with my next appt. with the onc. They also did a DEXA scan.
It was the same thing with a drug I took for endometriosis called Visanne. I took it for 7 years and it stopped my period. The dr. said to check for menopause you stop and they test your hormones a week later, and/or just wait and see if your period comes. I stopped the Visanne when I got my diagnosis as my tumor was 100% positive for both estrogen and progesterone and Visanne is a progestin. The Visanne also gave me hot flashes, but mostly stopped after I stopped the drug. I did still get them, but they were very, very mild and less frequent. Now they are back with these new drugs I am on.
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Hi All,
I am in the middle of radiation but have gotten my first Zoladex injection. I have not had any more side effects than I already had from being thrown into menopause by chemo. Once radiation is done I will be taking Arimidex as well as Zoldronic Acid which will help with bone density. I have a bone density test next month before starting.
I do wonder about having my ovaries removed instead of going for the Zoladex injections. I am 53 and was premenopausal prior to diagnosis. MO says I will be on Zoladex for two years and then stop to see if I am now in menopause. What are everyones thoughts on removal versus drugs?
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Hi Ladies,
I am currently recovering from surgery, and have completed 16 rounds of chemo. I am being given options by my MO to either start Tamoxifen, or AI + Ovarian Suppression. I have been on Lupron for 5 months during chemo because I was trying to keep the chemo from totally destroying my ovaries, since the ovaries do produce hormones that have protective qualities for the body (although I am ER/PR +).
What were the reasons your MO's put you on this regimen and how are you tolerating it? I have done ok with the Lupron so far, but I'm not a huge fan of the idea of being on it for 5 years.....
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Hi Alden722!
My MO put me on Zoladex + Aromasin because the results of the SOFT study showed better outcomes for premenopausal women who do OS + AI than Tamoxifen alone. I should note that my cancer was very aggressive (Grade 3) and that it was highly ER+(95%)/PR+(95%). Plus, I was Stage IIIA under the old system of staging.
I'm 4.5 years into OS + AI, and I'm on the 10 year plan for hormonal therapy. I took a Zoladex vacation in the Spring, and I'm still premenopausal. So, I'll be doing Zoladex at least another two years before I go on another vacation.
AI + OS has given me the following side effects:
1. Hot flashes (have diminished over time).
2. Moodiness (now take Celexa for that).
3. Osteoporosis (take Prolia and I'm now osteopenic).
Otherwise, I'm tolerating things just fine. Best wishes!
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Hi Alden722!
I'm the same as ElaineTherese. MO preferred Zoladex and Arimidex due to results of SOFT. Mine is 100%er+ and 100%pr+. He mentioned this might be my plan for 15yrs but I just got clarification at a recent appointment that I would do it for 10yrs and possibly Tamoxifen for 5 yrs after that. I've only been on the combination for 6months but feel lucky that none of the side effects have been too bad at all! An occasional hot flash and sore finger and toe joints in the morning 🤷
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For the past 6 weeks or so I'm noticing that when I sleep in certain positions, use my hands too much or put pressure on my elbows my fingers begin to tingle. Almost as if if I'm developing carpel tunnel syndrome or something. Its like I have some nerve damage going on. I called my MO's office and the nurse said this has nothing to do with hormone suppression medicine and suggested get a massage. Which I did and it didn't help at all, anyone else having these issues. Just curious if anyone else is experiencing this? I go for a test in a few weeks, forgot whats its called but its when they stick needles in your arm to see if you do in fact have carpel tunnel syndrome. Im skeptical that I have that. I don't work in an office nor with my hands so why would I get it? Any feedback is appreciated because of course part of me is worried its something more serious.
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Toy - as far as I know women on Arimidex and other AI's experience trigger thumbs/fingers, painful joints, and other symptoms. I googled "aromatase inhibitors and neuropathy" and this is the first link that came up:
"Peripheral neuropathies from chemotherapeutics and targeted agents: diagnosis, treatment, and prevention"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480245/
"Hormones
A trial of using aromatase inhibitors (anastrozole and exemestane) in patients with ER-positive and/or PgR-positive breast cancer showed grade 2 neuropathies occuring in 30% of patients receiving chemotherapy.66 Focal neuropathies, such as carpal tunnel syndrome, may occur during aromatase therapy.67"
and then there's this
Neuropathy from BCO.org
https://www.breastcancer.org/treatment/side_effects/neuropathy"Although chemotherapy is the most common cause of peripheral neuropathy, other treatments sometimes can lead to neuropathy as well. Surgery and radiation therapy also may cause damage to nerves in the chest and underarm areas, which can lead to neuropathic symptoms such as pain, numbness, tingling, and/or increased sensitivity in those areas. Perjeta (chemical name: pertuzumab), Ibrance (chemical name: palbociclib), Kadcyla (chemical name: T-DM1 or ado-trastuzumab emtansine), and Ogivri (chemical name: trastuzumab-dkst), targeted therapies, can also cause neuropathy."
I'd tell your MO that umm yeah, it's proven so maybe they should get with the times. LOL. I hate that a majority of drs seem to discount our symptoms. True it may not be the drug itself BUT it is causing a marked decrease in our hormones which regulate nearly everything in our body. It's just common sense.
Hope the test shows something that can be helpful in the long run. I've dealt with neuropathy for years due to my other chronic illnesses. It's frustrating. I hope you do not have it and it's something easily treatable. Keep us posted.
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Toyamjj, I am having similar problems, but I am having something like a De Quervain's syndrome with nerve pain in the area. (The pain is mostly in my thumbs and wrists on the radial nerve side.) My MO says there is no doubt that this is from the AIs. So unfortunately, yes, AI drugs cause significant tendon/nerve problems for some of us.
I am awaiting an appointment with the hand clinic, but I have no answers yet. I hope you can get some better answers from your MO regarding your situation - I am annoyed on your behalf that they told you to "get a massage." It may not be a common side effect, but hand function is a big deal!
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bam320, from what I understand, the ovaries offer some positive function even after menopause, so I'm inclined to keep them in. Also, ovarian suppression is reversible, so if I find the side effects intolerable, I can stop, whereas the surgery is permanent.
That said, my Ob/gyn suggested I see a surgeon who specializes in this. I'm going to take the appointment just to get his perspective, even though my MOs favor the shots. I do know some people opt for the surgery, so it's definitely an option.
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Alden722, there are definite downsides and health risks to ovarian suppression, so my MOs weighed my cancer recurrence risk against those.
When I was first diagnosed, I was on the borderline. It was offered as an option if I really wanted to be aggressive, mainly because I was only 40 and had lymph node involvement. But since my tumor was low-grade, low risk of recurrence based on Mammaprint, and 100% ER positive, the two MOs I consulted with agreed that tamoxifen alone was not unreasonable.
Unfortunately, I had cancer seeded to my biopsy site and it grew even on tamoxifen. Maybe if I'd had radiation this wouldn't have happened. Who knows? But for whatever reason, tamoxifen didn't work for me and the residual cancer cells grew into a palpable lump I found 2 years later. So this time, all my MOs agreed I needed to switch to an AI + ovarian suppression.
It's a really individualized decision. If you're interested in the technicalities, here are the The American Society of Clinical Oncology (ASCO) guidelines on using ovarian suppression + hormonal therapy after surgery for premenopausal women diagnosed with early-stage, hormone-receptor-positive breast cancer: https://ascopubs.org/doi/pdf/10.1200/JCO.2015.65.9573
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bam320, here is a good overview on oopherectomy vs. ovarian suppression.
Starting With Reversible OFS Using LHRH Agonists Is Preferred for Most Patients: https://www.cancernetwork.com/breast-cancer/point-lhrh-agonists-vs-ovarian-ablation-suppression-ovarian-function-premenopausal-breast-cancer
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