Women on Ovarian Suppression + Hormonal Therapy Unite!
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Thank you! Please post what you'll find out.
Virtual hugs
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Wow SpiralForest I am surprised your oncologist felt the risk of going in for Zoladex was greater than the risk of pausing it. I just came home from my injection and I have so much anxiety about it. None of the nurses including my injector were wearing masks. It felt very business as usual which seems so inappropriate given the seriousness of the virus. :-(
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That's so suprising, Garnersuz! Yikes.
I'm going in tomorrow. I'm hoping they will be less blase about it at Cedars Sinai! I talked to an elderly friend who had a necessary medical visit to a dermatologist for a wound, and everyone at the office was wearing masks and protective clothing, they took his temperature when he got to the office, all the stops! I'm shocked that an oncology office isn't doing the same.
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I was shocked too. Will you report back and let us know how it goes for you tomorrow? Thank you!
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Yes, absolutely. Stay tuned...
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I have mine next week, I haven't heard anything from the clinic yet. I'm surprised an MO would react that way re the estrogen and gives a break, maybe they're worried about virus exposure. It seems a bit drastic as at this point it's only a theory, nobody knows much about this virus yet.
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I just went in for my monthly Lupron injection. My MO offers her patients the choice of getting the 3-month Lupron, so they don't have to visit the cancer center every month. There are screenings outside of the cancer center, but otherwise it seems like business as usual.
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For what it’s worth-I messaged my MO at Stanford health after reading this thread regarding at risk due to low/no estrogen. She replied and said there is no evidence to support this and to keep taking Arimidex.
I am paranoid about being immunocompromised since finishing chemo 4 months ago. I spoke to my nurse who said “on paper” I would have the same immune system as the average individual. She said while I’m not at high risk, she wouldn’t put me in the lowest category just because I have had chemo in the past. I’m not sure exactly what that means...? Maybe as the years go on we are less and less compromised.
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Thanks for the info, Brenda. I have enough things to worry about, so I'm glad to hear she doesn't know of any evidence that those with low estrogen are at greater risk. Makes sense, or we'd be seeing more cases in older women than men. But from what I've seen, rates in men are actually a little higher (in China at least).
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Hello everyone - I was premenopausal at diagnosis (age 50), but have been in chemo-pause since July. So my MO decided on AI+OS for me. I will also have Zometa, but he's delaying that until the pandemic is over.
I finished radiation 3 weeks ago, and I will start Arimidex tomorrow and have my first Lupron shot on Monday. I've been dreading this for months! I hope it won't be as bad as I fear. But with all the stress of the Covid-19 pandemic, it's hard to not be anxious.
I had been doing pretty well through most of radiation, even with the severe skin burning. The fatigue that hit towards the end, along with the emotional release of finally finishing the 9 months of active cancer treatment, and then the pandemic worries and the stress of having everyone home from school - all of that has made me really struggle with my moods. Isn't having my estrogen completely knocked out going to make it worse?
I'd appreciate encouragement or advice as I head into this new phase of treatment.
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Hi!
When I first started OS (Zoladex) + AI (Aromasin), I did have mood swings. It felt like I was PMSsed or like I did during the first trimester of my pregnancies. My MO prescribed me Celexa, however, and those mood swings went away. Don't be afraid to ask your MO for some help with emotional changes -- I'm glad that I'm on an even keel, and that I don't feel like bursting into tears every ten minutes.
I also suffered from hot flashes -- those have diminished over time, thank goodness.
Finally, OS + AI contributed to osteoporosis, but now that I'm on Prolia, my bone density has improved to osteopenia. Have you had a baseline dexa scan? That will help you and your MO to track any changes in your bone density due to OS + AI.
Good luck!
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Thanks ElaineTherese.
I did have a dexa scan and I have osteopenia. That is why I'll have the Zometa, however that will be delayed until the virus crisis has calmed.
I'm already on Cymbalta, though a low dose. I have a history of depression and was on Zoloft for many years. Now that I stop and think about it, I think perhaps Cymbalta has helped reduce the severity of the hot flashes I started experiencing last summer with chemo-pause. I switched to it a few months ago, and they haven't been as bad since then. That realization gives me hope, at least about the hot flashes! I guess I'll see how the mood swings go.
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Hey LoveMy4Kids,
I'm sorry you're starting this new treatment at such a crazy time! I have a long history of depression, so I was really worried about mood issues too when I started. I did experience a pretty big emotional crash. It happened about 3 months in to my ovarian suppression treatments about a week after I switched from tamoxifen to an AI. I don't know if it was the estrogen depletion finally catching up with me or the AI. At any rate, I upped my dose of Lexapro and that got me back to baseline. Other than that, my side effects haven't been too bad.
I still struggle with fatigue, which is a prominent symptom of my depression. But I'm starting to work with my MO and a psychiatrist who specializes in cancer patients. They've mentioned testosterone as one possibility, and I'll post updates once that gets rolling.
In other news, I had my injection at Cedars Sinai today. They were letting us park our own cars rather than valet if we wanted to. And they also asked about respiratory symptoms and recent travel when we checked in. But other than that, it seemed pretty normal. A lot of patients at the cancer center were wearing masks, but the nurses and staff weren't. Kind of weird. I used a ton of hand sanitizer, tried to keep my distance as much as possible, and am now hoping for the best!
It was my first Lupron shot. My MO is switching me over from Zoladex, as apparently some women have less side effects on Lupron. We're going to see if it makes a difference with my lack of energy, weight gain, etc.
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I have my next Lupron injection next Friday. I have to be honest, I'm super scared to leave my home and get exposed to the virus. I have a lot of nursing friends and family who are at the front lines. One of my "normally healthy" female friends actually has the virus right now. Has had it for almost two weeks and ended up in ER yesterday for shortness of breath. I called my oncologist office last week and whoever I spoke with wasn't taking my safety concerns seriously I felt. Anyhow, my anxiety level of going for my injection is HIGH. 😭😞
ETA: I also always get a full workup of labs each time I get my injections. That will be a hard NO this time. I have to go to the oncology hospital for my injections. I'm going to call again to see if they have implemented a better protocol for patients coming in.
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Hi all,
I'm seen at Memorial Sloan Kettering and my oncologist is suggesting that my Lupron injection be moved from a 28 day shot to a 10 week shot to minimize my need to come into the clinic. Does anyone use the longer timeframe shot, or can point me to research about the differences?
I'm already a little nervous about whether OS is complete enough to make my AI effective (my BMI hovers around 26, and I know there's some data about overweight women not having complete OS suppression), and my MO has only measured my levels once, way back about 2 months after I started injections. But I also don't want to risk Covid-19 exposure/spread.
Thanks!
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ayr, I totally get it. It was nerve wracking going to the cancer center last week. Thankfully, I was in and out in about 20 minutes (I didn't do anything other than the shot either).
My husband always comes to appointments with me and it was definitely a mistake in this case! He was in the waiting room dodging people like he was playing Frogger. Another patient ended up coughing directly in his face! 😳It's legit scary out there.
I'm not normally a supporter of the 3-month injections as they aren't as reliable, but I'm going to talk to my MO about it for next month. It looks like we are going to be in this crisis for awhile, so the less I have to visit the hospital in the meantime, the better. Maybe ask your MO about it, too?
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2002chickadee, we've talked about the difference between the 30 and 90 day shots in this thread before. I can't remember if I posted links to research or not, but it's worth a look through the older posts. The gist is this:
1) The big trials (TEXT and SOFT) on ovarian suppression for breast cancer were all done with 30-day injections.
2) Ovarian suppression can be insufficient even on the 30-day injection (which is why you should be getting your estradiol levels checked regularly). So a 90-day interval (especially if you're not testing estradiol in that whole time frame) is even more risky. Anecdotally, my MO has found that some of her patients' ovaries were bouncing back before the end of the 90 days, so she stopped using it.
That said, we're in a very unique situation right now. I think everyone needs to weigh the benefits and risks. Getting coronavirus could be quite dangerous for us. Personally, I'm going to look into the 90-day shot. At the end of the day, I think catching the virus is riskier for me than potentially having my estrogen levels creep back up for a week or two.
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I got my usual injection on Friday. My hospital is checking temps as soon as you walk through the door, and it has a strict "no-visitors" policy. I felt comfortable going to my oncologist's clinic because 1) it's set off from the rest of the hospital, and 2) it takes cleanliness seriously. I was offered hand sanitizer about 20 times and my nurse used it liberally. But, I understand people's fears -- Covid-19 is not something to be taken lightly.
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I just got my first injection of Zoladex today. How long does it usually take for the side effects to appear?
I read that it may cause vaginal dryness, so I grabbed a box of Replens at the store and figured I'd give it a try. Anyone else have success with it?
Also I'm naturally prone to mild acne (oily skin), so the dryness that occurred while I was on birth control cleared me up and also got rid of my dandruff. Since Zoladex also dries out skin, is it possible that it will help with these issues?
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I had my first Lupron injection this afternoon. It wasn't a big deal. But since a half hour after, I've been feeling "off" - a little weak, lightheaded, tired and shaky with a bit of nausea.
I wonder if it's from the shot, or because I didn't sleep great last night, or my body still adjusting to Aromasin (felt fine yesterday, though), or the lousy weather, or it's all in my head?
The Covid-19 precautions being taken at the cancer center were reassuring (I had my temperature taken 3 times in 3 different places in a 7 minute time span!). However, I'm asking for my one month post-radiation followup to be done by phone later this week.
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hey hey ladies
So last week I had my zoladex injection but I have nine in health centres I had spoken to nurse about day before so she took me in through backdoor from car park onto nurses room which next door to backdoor took my bloods and did my injection and back out back door as I had concerns sitting on sitting area
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Sshibal, I'm trying to think back. It was at least a few weeks before I started noticing hot flashes. Other side effects came on more slowly (and it's always hard to separate what's due to the injection, what to the AI, and what to other meds, etc.
It's been a year, and I haven't really noticed vaginal dryness. Hoping it stays that way, but another woman I know had it hit her 2 years into ovarian suppression.
As for skin dryness, I was expecting that as well, but Zoladex actually makes me break out. Mainly around my jaw. It took me longer than it should have to connect the two, since I was so focused on how it might dry my skin out. But when you read the drug monograph, acne is listed as a possible side effect.
I would say to stop anticipating what issues you might have and just deal with them as they come up. Everyone is different, so even common side effects may skip you by. In general, the side effects have not been anywhere as intolerable as I feared.
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Sshibal, vaginal dryness was definitely a difficult side effect for me, but it's totally managed now. Check out this information: https://www.mskcc.org/cancer-care/patient-education/vaginal-health. Ultimately I got the most relief from Imvexxy, a 4mcg estrogen suppository. There are a number of other threads on here that discuss how to deal with vaginal symptoms.
Mellee, I'm thinking about doing one 90 day shot and then trying to get back to the 28 day. I wonder if this is why they want me to come back after 10 weeks (which is less than 90 days, if my math is serving me at all at this moment) -- in case the suppression is insufficient? Does it wear off over time?
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chickadee, I would guess that's why. Lupron is injected into the muscle, and the medication is slowly released into the bloodstream over the month. Zoladex works the same, but it's a tiny implant injected into your stomach (way better than it sounds) which releases the medication over the month. With the 90-day shots, it's the same just a higher dose so it will last longer. But like I said, they know it can wear off early. So it's good they're testing you at 10 weeks.
I'm thinking same as you, by the way. One 90-day shot and then back to business as usual.
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I check in, but down reply much these days. I have been on Zoladex since January and anastrozole for the last two months. My first zoladex shot was for the month and then I got the three month shot. There was a lot of talk on the boards that you should not get the three month shot, but I trust my MO, so I did it. I fee dryer, and have some hot flashes (and yeah, a little acne), but other then that, nothing really. My next shot is May....maybe with all this going on. So far very manageable. I’m more worried about myTE and if my reconstruction will ever take place at this point. It should be about now, but now? Stay safe everyone
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Hey Lauren, sorry to hear your reconstruction is delayed. This is such a tough time. I'm so so grateful this didn't happen at the same time last year when I was in radiation. I feel so much for everyone who is in chemo, radiation, or having other parts of treatment delayed. Or having to go through surgery right now!
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I have been getting monthly Lupron shots since July 2018 which have been a non-event. But I am in NYC and don’t want to go in to the hospital next week so asked my MO to send in a prescription so it can be delivered to me. My husband has medical training and can inject me. However, the script is for 7.5mg which CVS Caremark DENIED because they will only approve 3.75mg - even though my insurance has covered 7.5mg since the beginning. So now I need to go to a NYC hospital next week. Can you BELIEVE it? My MO said she uses7.5mg to ensure complete suppression.
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I've been feeling periods of nausea, lightheadedness and a weird weakness/fatigue since getting the Lupron shot yesterday. Has anyone experienced this? How long will it last?
I called the oncology office today to ask about it, but the NP hasn't called me back.
I just started Aromasin 4 days ago, too, and I felt dizzy the mornings after the first two nighttime doses. I don't know if anything I'm feeling is still from the Aromasin or not. Of course, I can't help but worry about coronavirus!
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Staceybee, I didn't know self-injection was an option! I've heard women complain before they weren't allowed. I'm sorry about your insurance. I would try calling. I've been able to get things approved many times that they initially denied just by being annoying lol. Ask them about how to appeal. Your MO can also help.
LoveMy4Kids, if you check out Lupron side effects, nausea and tiredness are listed as being common (https://www.rxlist.com/lupron-side-effects-drug-center.htm), so try not to worry too much about coronavirus! I haven't had those side effects personally, so I don't know how long those might last. With my injections, I tend to get moody and tired right after and that usually lasts for ~3 days.
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Staceybee, I would call your insurance company. These are unusual circumstances and especially with being in NYC. I do medical billing and deal with insurance companies daily. Let us know how it goes.
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