Women on Ovarian Suppression + Hormonal Therapy Unite!

smiling Brenda - I hope it wasn’t too bad of a surgery!

mikamika - right there with you. And I know this is new as April 2021 I had a uterine biopsy and d/c. No fibroid then.

Hi all---I have been on Zoladex and exemestane since Feb/March. You know what I'm REALLY worried about? Missing a Zoladex injection because of Covid. Like if I catch it (again), they probably won't let me come into the office for awhile. I know they like you to get it every 4 weeks on the dot. If it's like a week or two after, because of illness, is that a huge change for recurrence? I asked my MO and she just sort of shrugged. She shrugs a lot, honestly. I guess there's not much they can do in that scenario.

Already had one recurrence. I'd rather not have another. But I'm tired of living in fear of this stuff.

I do see that some people get the 10.8 mg, which is interesting since it's not FDA approved for breast cancer. Hmm. I wonder if it's hard to trust that your estrogen levels are staying low...my doctor never checks anything like that. I would hate for the exemestane to not work like it's supposed to. Do other people get their levels checked to make sure things are at appropriate level?

I wonder why mine doesn't check things? I had to specifically ask her to recheck a vitamin d level to see if it was improved, after it was extremely low. I'm also not sure I would have gotten a dexa unless I asked for it, and lo and behold, osteoporosis. I don't think I'm getting less than standard of care, but I have to stay on top of things.

My oncologist does not agree with the 3 month zoladex as she says there is a potential for it not working so she recommended going with the monthly. She said that for premenopausal, the combo of AI with a failed zoladex could cause estrogen levels to go way up.

Does anyone know how or where to get a zoladex shot while vacationing in a different town? Thanks

Hi chemicalworld - are you in the US? If so, who and where I your oncologist pls?

I have been advised by my MDA Anderson doctor that she will not prescribe it. I actually have to go to an oncologist in a different town, sign up as a new patient and get them to prescribe me Zolodex. I guess patients either get an oophorectomy o plan or plan travel around shots. Beginning to see that after cancer life will not be normal at all …. Thanks.

I was told to travel around shots. My MO said there's only a two day window. but my nurse said if it's up to a week delayed because of vacation, it would be ok. They just don't want you missing a lot.

I don't know. I was dead set against oophorectomy, and now I'm starting to think about it. With these covid surges that keep coming and going, it's inevitable that these injections will be delayed from time to time.

bong, I'm in Canada and have already been taking lupron injections for several years.

I think I may have misunderstood your question, as I thought you were asking about the logistics of getting someone to give you the injection while traveling (as opposed to however you would typically get it at the hospital, via nurse etc etc). I don't know about the US but all I needed was my MO's prescription and the injection order or whatever its called, and other medical personnel could give it to me after I picked it up at my pharmacy. The few times I had to travel at the same time I was due, I just took it with me, and looked someone up in the destination area to give it.

@gb2115 for what its worth a few times I had to go a day or a few days on either side of the "due date" for my shots because I wasn't able to get someone to give me the injection (my local outpatients shut down during the early stages of the pandemic, and since moving, sometimes I've had trouble getting someone scheduled). I was told by someone when everything first shut down that if I had to, I could miss a dose (because at one point I literally had no one to give it to me) ALSO there was one point in the early years of my injections where unbeknownst to myself, I went 2-3 months getting a half dosage because the pharmacy mixed it up. I was told it was "no big deal" (didn't feel that way to me, but still). I've always felt it when my shots were late, that's just me.

Also, recently saw a new oncologist, and i'm in the stages of cluing up anastrozole. She told me that I only needed to be on the lupron while I was on the anastrozole, so my prescription wasn't renewed. I had been under the impression that as an oophorectomy alternative, I'd be on it forever, or until I finally made my mind to get the ooph, or I got older, etc. I was very much pre-menopausal before starting it, who knows what'll wake back up. It doesn't all make sense to me, but there it is.

thank you for starting this. I need this support !!

chemicalworld--thank you for sharing that about your Zoladex shots. I'm trying to relax a little about everything!!

When I was on lupron shots, I was told it has to be exactly every 4 weeks. This schedule and the SE of the shots made me choose oophorectomy. In my case, it was the best decision and I have no regret. I was done having the kids.

savinggrace, I had GI issues when I was on letrozole for over 2 years. Now, I moved to exemestane and I'm feeling fine. Talk to your doctor and don't let yourself suffer since there are other medications.

Has anyone had experiences with hives and a big itchy, stinging rash up both sides of the torso with either exemestane or Zoladex? I've been having this for the last 2-3 weeks and we think it's probably an odd allergic reaction to Herceptin from the timing, but my MO is pulling me off both that and exemestane to try to figure it out. And if it still doesn't respond then the Zoladex becomes a suspect. I was so focused on the Herceptin that the others didn't occur to me!

emilyjsipp, I'm sorry to hear what you are going through. It is not easy. Good luck too with your journey.