Women on Ovarian Suppression + Hormonal Therapy Unite!
Comments
-
I recently had a large uterine fibroid removed after two years on zoladex and arimidex.
I had never had one previously, at least that I was aware of.
0 -
smiling Brenda - I hope it wasn’t too bad of a surgery!
0 -
I also do not understand how those fibroids can grow on estrogen suppression therapy.
0 -
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.
0 -
Thank you for that information elaintherese , I will make note of that for my next appointment. This is one of my main concerns, that I've never had those levels re-tested, and I don't want to assume and feel my dr should not assume either. I've had percentages told to me as a genera rule, but I had just one blood test relating to hormone levels, several years ago, and that was it.
0 -
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.
0 -
I would ask a health care team about switching from the monthly to 3-month shots.
0 -
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?
0 -
Yes, your MO can check your estradiol levels and other hormones when changing medication or adding something new. I got my hormone levels checked a few times when I started treatment, then 6 months later.
0 -
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.
0 -
Sometimes my doctors also forget things. I have to remind them. For example, since AI affects cholesterol levels, we also need to get them checked.
0 -
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.
0 -
Hormone levels are easy to measure. My former oncologist in California is known for his aggressive treatment. But he was completely fine with the 3-month shots. There were also studies about 1-month vs 3-month injections. I agree that many MO prefer to deal with 1-month injections since it's easier to deal with.
0 -
Does anyone know how or where to get a zoladex shot while vacationing in a different town? Thanks
0 -
bong, I have traveled with my lupron shot before, not sure where you will be or how you typically get it, but i just picked mine up at the pharmacy and at destination, contacted one of those in-home bloodwork agencies or one of the places where you can pay to get bloodwork done, and no issues.
0 -
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.
0 -
Hi bong,
Some oncologists are OK with 3-month injections. Not on a regular basis, but if you need it for travel, surgery or other situations. My former MO in California was fine for prescribing them on a regular basis, but I was afraid of the higher dosage. I am really upset that MD Anderson is not supportive.
0 -
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.
0 -
Has anyone been told anything about ocular or retinal side effects from Zoladex + exemestane? I had an appointment yesterday with an optician to update my glasses prescription and she wrote a referral to a retina specialist. She did not know anything about exemestane but reasoned that since tamoxifen is known to cause these problems, that exemestane might, too. I told her I'd talk to my MO about it (at the same time as I relay my PCP's request for a baseline DEXA) and that the two drugs have different mechanisms of action so I don't think the assumption is a good one, but I don't know. Google suggests only theoretical possibilities. Has anyone been told anything like this? I'm not keen on another specialist of questionable necessity.
0 -
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.
0 -
chemicalworld - thanks
0 -
thank you for starting this. I need this support !!
0 -
Hi puglove, and welcome to the BCO community. We are glad you found a topic of interest. We hope that you find the information you are seeking. In addition to our forums we also have a plethora of information throughout the website and virtual meetups on a weekly basis. In order to help us best me your needs, please feel free to reach out to us and notify us if you are not getting the information you are looking for.
Thanks for joining us and we are happy to be here for support!
Warmly,
The Mods
Hormone Therapy Information: https://www.breastcancer.org/treatment/hormonal-th...
Virtual Meetups: https://www.breastcancer.org/community/virtual-mee...
0 -
chemicalworld--thank you for sharing that about your Zoladex shots. I'm trying to relax a little about everything!!
0 -
Does anyone experience GI issues (e.g. stomach pain/upset stomach) while on ovarian suppression? I am on Lupron + letrozole. My MO said stomach problems are not a side effect. I did do other workups to check for causes but the results did not show any other medical issue.
0 -
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.
0 -
Thanks, Lilyishere.
0 -
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!
0 -
savinggrace,
YES to the GI issues. I'm in month 10 ish of Zoladex + Exemestane. (Did a year of Tamoxifen previously but stopped in order to salvage my sanity). The explosive diarrhea hit me in late June out of nowhere. That is in addition to the myriad of other debilitating side effects from this nonsense we call hormone therapy, but I digress. It seems to come in waves. Being constantly on guard of spontaneously crapping my pants at any given time is near maddening. I basically feel like I am hungover 24 hours of every day…without the party the night before lol. I can't eat anything, but I'm starving, but I'm pooping constantly. But don't worry I continue to defy the laws of nature by gaining weight, not losing it. Endocrine Therapy- the fun never ends!
In all seriousness, I feel you girl. I have always had an iron stomach never had heartburn or indigestion etc. Now it's like aliens have invaded my body. Exhaustion? Too tried to talk about it. Literally cannot articulate in words how fatigued I am, deep in my bones. Or is that the chronic pain? Hard to tell. It's also hard to find a silver lining out of all of this sometimes. Don't feel bad about that either.I realize we “need" to take this life saving medicine in order to survive and I am infinitely grateful to be alive, but I find this is no way to live quite frankly. In the spirit of MY Body MY Choice…I will be ceasing the daily pill and the every 28 day butt shots. After much consideration I have decided to roll the dice man. I want my decimated body and mind back. I want ME back. Good luck in your journey friend ❤️
0 -
emilyjsipp, I'm sorry to hear what you are going through. It is not easy. Good luck too with your journey.
0
