Women on Ovarian Suppression + Hormonal Therapy Unite!
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I've heard that a lupron injection can cause an initial spike in estrogen levels. It's typical (or at least common) for people who have been having a period to have one more after the first shot. I don't know about the effect on people who are already in chemopause, but hopefully it's just an initial effect of the suppression shot. I hope your MO has some reassuring info for you.
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Mellee - I'm so sorry to hear of the loss of your friend.
There are never the right words for the pain. Please know you and her family are in my thoughts. Another sad reminder that none of us are promised tomorrow so we must make the most of today. I'm sure she would be thrilled that the fireworks show, you and your hubs, saw on the way home were dedicated to her by you both. That is such a testament to her life I'm sure. 
Regrets are hard to deal with. I feel you on missing that last chance to talk with your friend. Something simliar happened between my best friend and I 5 years ago. She'd been on my mind, and I kept meaning to call her that day or the next, and then the next thing I knew she was gone. I know nothing I could've said would've change anything, yet, I wanted the chance to tell her one more time how much she meant to me and how much I loved her. All I can say, is that with time, the pain does become less. Thanks for the sympathy and advice on my new lump. I won't be putting anything off, even though I am a bit scared of what things may mean.
Ever since RADs I've had nipple issues that everyone told me were related to RADs - ie flaking skin, scaling skin, itching & tingling, yellowing crusts now and then, sticky/oily/dry, looking like eczema, but what if that has all been Paget's? Shouldn't all of those skin issues be gone by now, it's been 8 months since RADs ended. Yet in my mind I didn't pay it any attention because I was "oh, it's still from RADs". I know Pagets is RARE RARE RARE but still. The picts I have taken of my nipple over the past months look very much like those on the net. I never once thought to mention it to my MO.
The lump itself is definitely a early stage Nipple Adenoma, it looks like every single picture I can find of it. But of course, Google isn't my doctor and I am not panicking, lol I am just determined to get an answer sooner than later. First thing tomorrow I will be sending picts of my my nipple issues/lump and asking if they want to see me now versus at my next injection in 3 weeks. I'm guessing they will want me to come in this week. Hopefully my MO will have a plan of action to cross off the scary things of the list and let me get back to a little peace of mind.
I'll keep everyone posted.
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Thanks so much for your kind words, Spoonie. 💗
Praying that everything is okay with you and it will turn out to be nothing. It is so hard after radiation trying to figure out what's normal and what's not. I'm sorry you're having to deal with this.
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I was wondering if any of you have switched from monthly zoladex to every three months? I had my first 3 month injection last week and my back pain, fatigue, depression and anxiety are sky high. I feel awful. Didn’t feel wonderful on monthly but it was more manageable. I am also wondering if my exercise is actually worsening my back pain? I am doing high intensity interval training and I think I might need to do more walking/yoga. I heard tart cherry juice might help discomfort. Might do acupuncture. Ugh! Just want to stay as busy as I usually am
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For those concerned about bone density loss....
After two years of Aromasin + Zoladex, my dexa scan showed that I had full-blown osteoporosis and was at high risk for a fracture. My MO prescribed Fosamax and then Prolia (when she figured out how to get my insurance to pay for it). Today, I had my biennial dexa scan -- I have graduated from osteoporosis to osteopenia! So, yes, you can recover bone density after loss. Hopefully, we'll have more improvement after another two years.
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Hey NPmom, I'm still on the monthly shots, so I don't have feedback on that, but I have heard good things about tart cherry juice for muscle and joint pain.
ElaineTherese! So exciting to hear you've reversed the osteoporosis. My oncologist also told me that new studies show that once we stop taking the AIs, a lot of the bone mineral density changes will reverse. That was very encouraging to me.
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Soooo, I forgot to post my update here earlie this week. Whoops. Anyway, after sending a few picts of my nipple/lump/symptoms to my MO over last weekend, her office called early AM on Mon. They wanted me in ASAP. Met with her. She ended up referring me to see my SO soon. She didn't order Mammo/US but said she would leave all that to my surgeon since whatever came next would need to be done with a biopsy (at least) and she would be the one that needed to do, especially since it may involve excision of my nipple/areola or more, depending on pathology. MO mentioned possible Pagets Disease, Leimyoma, or possibly a Nipple Ademona. I see my surgeon on 7/22. Dealing with crippling anxiety in the meantime. My psych gave me a temp rx for an additional anti-anxiety med, on top of the one I've been on already. Am trying to stay positive, but this nipple thing can go alot of ways - some good, some bad. Worst case seems to be a BMX if Pagets since I've had RADs already in affected breast. Best case scenario, even this is bengin, seems to be nipple excision. Not fun, but manageable. Waiting sucks. Big time. My nipple lump/whatever you wanna call it is growing, slowly but I can see it in just the last 2 weeks Concerning. Plus the nipple pain is now constant. All kicked up after that Zoladex injection. IDK if linked but either way, I will be relieved to have some answers sooner than later. I see on my oncology portal online that my SO already has me booked for a 3D mammo and a US immediately following my appt with her. Didn't even have to ask. Lots to be thankful for in the team I have. Anyway, that's the update. Will keep ya'll posted.
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I'm so sorry, Spoonie! Waiting for answers is always terrible. I'm praying for the best case scenario. Glad you have such a great team.
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Hi! I just recently changed from monthly to 3-month Lupron. Yes, I've noticed the side effects are worse! I definitely have more hot flashes now than when I was on monthly Lupron.
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Is it necessary to switch from monthly Lupron to 3 months? My MO hasn't said anything about it, but maybe she's planning a switch for me as well. It would be more convenient, but I don't want to do it if the SEs are worse.
How long were you guys on the monthly shot before the switch? I just had my 5th monthly shot.
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I’ve been on 3+ years of monthly zoladex shots. My MO thinks with 3-month ones I might have breakthrough as my period came back after chemo and also my insurance may not pay for it. 3-monthly shot is typically for prostate cancer.
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I get my first zoladex shot tomorrow afternoon. I'm a bit nervous on how it will make me feel. Fingers crossed that I don't have side effects. I finished radiation June 18 and I have felt totally normal this past week, so that is a nice feeling (that I don't want to end!). I also will take Arimidex.
I'm doing this treatment as I can't take tamoxifen because of a history of endometriosis. I'm 54 next Monday, but I don't have menopause yet. I had taken a progesterone medication to treat endometriosis for 7 years so I hadn't had a period for 7 years until 2 months after I stopped the medication (I stopped after my breast cancer dx). I seem to get a period every two months (at least that is what has happened the past 5 months. So the dr. said I can take zoladex for a year and then I can stop and check my hormones and see if I am in menopause yet. I was really hoping to have natural menopause to at least avoid one of these drugs.
I have my DEXA scan on Monday. I actually had a DEXA when I was 32 as I worked in the field of osteoporosis research and they were demonstrating the scanner and asked for a volunteer. So it'll be interesting to compare my bone density from then and now 22 years later.
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ErenTo - thanks for the info. It's been my understanding that I'll be continuing on the once per month schedule, too.
spiralforest - Congrats on finishing radiation! Hopefully you'll do well on Zoladex. I seemed to tolerate it pretty well, without too many side effects. Aromasin has been another story, but I'm still adjusting.
I've heard lots of anecdotes and seen research that side effects for a lot of women on these meds get better over time, so I try to keep that in mind. That was certainly true for me when I was on tamoxifen, so hoping it's the same with AIs.
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Spoonie, I'm so sorry you're going through more stress and testing. I am wishing for a quick and easy resolution for you, but I also understand being in a body where that is rarely the way things work out.
Mellee, so sorry about your friend. That is really sad and hard news.
As for the shot, my MO wanted me on the monthly one for 3 months, then she checked my hormone levels and called it good, so switched me to the 3 month one because it's more convenient. I feel like I've had more side effects too. Hard to tell if the hot flashes are really worse or if it's just gotten hot outside and I'm learning to deal with heat in my new body. Definitely having more trouble sleeping, which is then contributing to fatigue and mood stuff. I may ask to go back to the monthly one at my next appointment. It's not super bad but I already have some chronic pain and fatigue issues, so any little bit of side effect I can reduce is really good.
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No more Zoladex for me. I had my ovaries and tubes removed yesterday. Yay for one less drug to worry about
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Thanks for sharing Fritzmylove. How are you doing? I’m curious how you made the decision to have the oophorectomy? I’m almost 42 and my MO said The Zoladex and Arimidex would be “at least” 10 years for me so it seems like the better choice?! I’m not a fan of the Zoladex “stabbings” as I like to call them. 😂
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Echoing Garnersuzz77's question. Very curious how you made the decision for oopherectomy. My MO hasn't raised it as an option, but when I went in for my annual ObGyn checkup, she thought I should consider it and referred me to someone who specializes in gynecological surgery and cancer. I haven't made an appointment yet, but I am curious to explore my options.
Also, Garnersuzz77: how does your MO know you'll need at least 10 years? My MO said we'll test at 5 years to evaluate the benefit/risk. The test they use now for that is the Breast Cancer Index, but she thinks there will probably be even better tests by then.
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Hey all - just chiming in about the Zoladex plans. My MO seemed to want to do this route short-term, maybe a year or 2 at most to see if can tolerate it. She said that if I could tolerate it then she would think an OOOh would be a better long term option.
I myself am not certain. If I can even stay on Arimidex & Zola come September I will be amazed. And that's only if I learn on 7/22 that I'm not currently experiencing a recurrence or a new primary. Uggggh.
Anyway, my take on the decision for me is surgery is permanent, injections are monthly. Inconvenient, sure, but reversible. If someone could guarantee I'd be fine with the surgery Id do it in a heartbeat but I think there is a shortage of magic wands these days. Lol. For me, at least for a few years since im 42 it'll be monthly injections.
Fritz - how are you doing after surgery? Thinking of you.
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Spoonie: I agree with your permanent vs. reversible analysis. That is why I'm choosing injections over surgery as well. I'm getting every 3 month Zoladex injections just to cut down on how often I have to go in. I've had three of them so far. 17 more to go before my five years is up! Yes, I'm counting.
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Help! My vagina hates me. I started Anostrazole August 1, 2018. Since May of 2019 I have been miserable 95% of my waking hours. My vagina is swollen, burns, itches and just plain hurts. I went to an ob/gyn. She suggested moisturizers which maybe helps the first time I try one then back to the total irritation. I have used Replens and KY moisture beads with very little success. What do I try next?
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My breast cancer support group was just emailing back and forth about this. One of our members is a gynecologist who specializes in vaginal health post cancer treatment. She really advises working with a good Ob/Gyn on this. If you're not getting good support from the one you saw, you may want to get a second opinion. Here were her top points.
- It's not true that vaginal hormones are contraindicated in breast cancer survivors, even in those with ER+ cancers. According to the American College of Obstetricians and Gynecologists research data "do not show an increased risk of cancer recurrence among women currently undergoing treatment for breast cancer or those with a personal history of breast cancer who use vaginal estrogen." However, they suggest you start with non-hormonal options.
- Intrarosa, a DHEA vaginal suppository, is a great option. It's the only vaginal non-estrogen treatment for dryness and painful sex. Unfortunately, many insurance companies don't cover it, but the company offers patient assistance.
- There are various estrogen creams, rings and suppositories (such as Imvexxy, Estrace) that a gynecologist can prescribe that have very small amounts of estrogen. These are used vaginally but can also be applied externally, in the outside area, to relieve issues there.
- It's also possible to get a less potent estrogen than estradiol—estriol—whipped together in a cream at a compounding pharmacy.
- OTC stuff that can help includes creams like Creme de la femme and Ostaderm-V, or just plain coconut oil.
- For sex, she recommends Uber Lube, Good Clean Love, Sylk, and Coconu.
- Mona Lisa Laser is a great non-pharmaceutical alternative, but it's expensive and not covered by insurance. If you do have it done, she recommends going to an Ob/Gyn (not a dermatologist or plastic surgeon), since they know vaginas.
I also found a couple of intriguing products online: Revaree and Rejuve Intimate Suppositories. Don't know if they work or not, but they sound interesting.0 -
Mellee thanks for your post, just had painful sex last night and I'm still tender today. Decided to log on here to see what I should do, lots of good advice here. Ive been using replens but not regularly like I should, probably haven't used it in two weeks.Time to get serious, thinking I will start with intrarosa and take it form there.
Thanks!
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Finally a thread on this. Thanks for opening it @mellee :-)
To cut my long story short - I have been on Zoladex shot before i started chemo to preserve my ovaries. While on Chemo i used to get it alternatively.After radiation , my MO prescribed me Zoladex (monthly) + exemestane and it's been almost 2 years since i am on this regimen. I also had DEXA bone scan before starting the hormonal therapy and it came back as not normal. So i was put on prolia( had 2 shots already). I have my next Bone scan next month
Noticeable side effects included Hot flashes ,fatigue and super dry skin which are manageable. I also noticed little weight gain. Since i am vegetarian my calorie intake is not much and i keep procrastinating on starting to exercise ( which i haven't yet
Me and my husband are talking about having a sibling for our daughter and i did bring it up with my MO in my last visit. He was all supportive for me to stop the hormonal and injection and start trying.We will chart out some plan with him in my next visit in september.I am too looking forward to just stopping everything and see how my body bounces back.
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Hi everyone,
Good timing for me as well! I had my first zolodex shot Monday (7/22) and also my first zometa infusion, and started Arimidex today. Thank goodness the zometa is only every 6 months because if fully gave me what felt like the flu - fever, chills, vomit, the works. Thankfully lasted just about 24 hours... I am now feeling fine except for the feeling like someone punched me in the gut (I am small with little belly fat which is apparently not helpful in this situation). I too struggled with starting something to make me feel SEs when I was finally feeling really good and recovered from months of surgery followed by ACT chemo. Other than my hair taking its Time to grow I was back to myself...I turned 40 in March just before chemo began, I am already in chemo induced menopause and have occasional hot flashes, so I am hoping for few additional SEs from all this. Good luck to all....
One question - I will be away for the week when it is exactly 28 days from my first zolodex, anyone know if it is an issue to do it a few days early? Think Friday instead of Monday?
Liz0 -
Liz,
My shots haven't always followed the 28 days precisely. Talk to the scheduling person at your MO. She will clear it with the MO about the timing of your next shot.
My head hair grew back fairly fast, but my eyebrows and eyelashes are still pretty sparse. Don't miss my leg hair though; haven't had to shave my legs in five years.
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Hello all
I'm. Cazzy aged. 32 have. Breast cancer with secondary bone cancer.
I currently last week had my second.injection. Of zoledex I've. Had no. Periods. So. Far but first. Month hot flushes.
I'm. Currently on lethrzole but taken off off Palbociclib due side effects of. Soee.mouth sife. Effects. Unfortunately which is. In another thread about radiotherepy is. Worse than ever. So may go back. On it when see consultant Wednesday I'm. Also. Due to go. In bone injection to. Strengthen bones. But depends. On. My. Blood. Tears as last. Month calcium. Was low.
Nice. Meet. You all. Inbox. Always open.
Xxxx
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Hi LizzieAG!
I wondered the same about timing of the injection and just like the other poster I asked the scheduler and my MO had included notes in the order that allows me to get it 3 days before or 3 days after the scheduled date.
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I've been on zoladex and anastrozole for just 2 weeks. So far I've not had any noticeable side effects. Yes, I have hot flashes, but I had those before. Last night I felt really tired (like radiation fatigue - which it could have been) and also had a headache. I went to sleep and woke up at 5am still with a headache and feeling nauseous. I eventually threw up and then the nausea was gone and I went back to sleep. I still feel terrible this morning. I just had the headache, but now the nausea has returned.
Has anyone had this sort of reaction from these drugs? I just really don't know if I'm just sick or if it's a side effect. Both nausea, upset stomach and vomiting are listed as side effects of anastrozole. Before this, I felt totally normal.
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Hello all!
I have been through the wringer with SEs throughout my treatment. I experience anaphylaxis from the Herceptin, so I have to load up with steroids and Benadryl around my infusion days to take it. We added Lupron shots about three months ago (I'm due for my next shot in early August). We tried anastrozole, but it turned me into a screaming crazy person, so I had to stop almost immediately. Now I am on exemestane (Aromasin) and I seem to be handling it better.
However, I am experiencing bouts of extreme fatigue and some pretty severe foot pain. The fatigue is random. One day I might have normal (for my current state) energy and the next day I'll barely be able to drag myself through the smallest of tasks by mid-day. I've also had bouts of feeling like I could pass out, which are different than the bouts of dizziness and nausea I've come to expect with the ongoing Herceptin infusions.
Because I have such bad reactions to Herceptin (like severe mouth sores and my skin breaking out in horribly itchy rashes), I can't tell if this fatigue and foot pain are tied to the Lupron/Aromasin or the chemically induced menopause or the Herceptin or what. I workout daily, doing whatever I can, but I'd be happy to do more if there is anything to help me feel more like myself. Any ideas are appreciated.0 -
Lizzy - you are probably fine to get it a few days early medically, just make sure your insurance will still cover the injection. You are probably also fine to get it a few days late.
sprialforest - you may be having migraines. I had some at the start of AI/OS but they went away after a while (maybe two months? Maybe less, I don't remember). A few other ladies that started around the same time as me had the same problem.
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