Women on Ovarian Suppression + Hormonal Therapy Unite!
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I have fallen in love with Soma cool night pjs. I started with those with my mastectomy bc they buttoned down the front but love the fabric because it keeps me cool with my hot flashes. I just went back and bough some sleep shirts!
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Thanks for the recommendation, Jen! I definitely need to upgrade my sleepwear.
With the PeachSkinSheets, I'll also add that they're super soft. My husband loves them, which is good since I'm freezing him out!
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Hello ladies, I am currently just on tamoxifen but in the last 2 months have developed several ovarian cysts and today they found a fibroid (that wasn't there 3 weeks ago). I am about to call it quits on this tamoxifen and ask my MO for something else. Did any of you start on tamoxifen and then switch to suppression and AI? What was the deciding factor?
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Jen2Mom, I started on suppression because I have endometriosis and we all felt like tamoxifen had a greater chance of causing side effects and making that worse. It sounds to me like you and tamoxifen are not a good fit. Hopefully they can find something that works better.
I have been having jaw pain since Sunday. Most likely the nightguard I got from my dentist is causing problems, but since I've had zometa I also get to play the "is it ONJ?" game. Or is the anastrozole causing joint problems? I hate that I can't just have a normal pain anymore- all roads have to lead back to "is it cancer/treatment-related?"
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Hey Jen2Mom, I'm going to be switching from tamoxifen to exemestane (Aromasin) next month. My situation was different, as I'm switching because I had a local recurrence after 2 years on tamoxifen, so my MO is worried that tamoxifen isn't working well for me.
There are definitely drawbacks to ovarian suppression, but on the positive side, the TEXT & SOFT trials showed that OS + exemestane is superior to tamoxifen (and OS + tamoxifen) in reducing the risk of recurrence. I was also worried about the risk of endometrial cancer with tamoxifen, which isn't a concern with AIs, so that's one less thing to worry about! Plus, with tamoxifen you have to worry about so many drug interactions, whereas the AIs don't have that issue.
I'll update when I switch. I'm hoping the side effects from Aromasin aren't too bad. I've heard the main thing to watch for is joint pain. And of course there's the issue of bone density loss, so that will be monitored too.
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Hi ladies, how much calcium do you take daily? I take 1200 mg (Citracal band, slow release) daily. I also take 5000 IU Vit D3 to keep my Vit D level over 60, and InnovixLabs brand full spectrum K2 to help calcium absorved to bone from blood stream.
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My MO said I didn't need to supplement with calcium and that vitamin D is what's important for bone density. But I'm taking calcium anyway: 500 mg per day. Like you, I also take 5000 IU Vit D3, although I'm having a hard time getting my levels up even with supplementation.
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My bone doctor told me I don't need to take calcium, but I have to take D3 in prescription strenght and vit. k2. I take 500mg of calcium anyway. I already have osteoporosis in my spine, both femoral necks excellent.
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mellee, thank you for starting this thread!
I went into chemopause, and for me Zoladex (as monthly injections) felt like just a continuation of that. Like others here I wake up in the night and have trouble getting back to sleep and often have sheet-soaking night sweats. Thanks, all, for the sheet and pajama recommendations.
Femara, I'm mildly jittery within an hour of taking it (in the mornings) and stay that way all day. I also have been headachy most days and feeling down, especially in the early evenings. I'm only three weeks in on Femara, so I'm hoping the headaches, jitters, and moodiness get better with time.
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Hi ladies, I don't understand why taking calcium is not necessary when we are on AI. I am not on any biphosphonates BTW.
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My MO wants be taking calcium and D3 with my AI and Zoladex.
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I'm on calcium and d3 and I'm getting zometa. I started treatment with osteoporosis and osteopenia though.
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My MO wants me on Calcium and D3 because I'm on Prolia to address my osteoporosis. Prolia can lower the amount of calcium in your blood; in fact, I get my blood tested before I get my Prolia shots to make sure that my calcium levels aren't too low.
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This month I got the 3 month lupron shot. It's subcutaneous instead of intramuscular and WOW it hurts a lot more. I still have a sore lump on my belly from it several days later.
The fatigue is catching up with me. I don't know if it's the low estrogen, the sleep disturbances from hot flashes, or something else, but I'm struggling to stay awake most days, sometimes even while working with kids, which is NOT OK. Not sure what to do about that. More caffeine? I don't see my MO again until August when I get my next shot. I also had a weird flare of TMJ last week, which I've never had before. Of course since it was a few weeks after the zometa I was paranoid about ONJ, but it has improved enough that I'm not worried about that now.
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thank you for this group! I am sitting waiting for my first shot (zoladex?). I’ve been on tamoxifen for three + years but now have a fatty liver. Because it could be from the tamoxifen, I am switching to an AI but premenopausal so need the shots. I’m scared of the side effects and not enjoying having to be thinking about all this again.
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OTMom, I've been really tired too. I've been taking caffeine pills to get through. I feel like a college student during finals again! I'm not sure how much is from Zoladex though and how much is from other issues. I'm taking pentoxifylline to prevent radiation fibrosis and that seems to make me really sleepy. My husband is dragging me out on walks every day (he calls it "walking the wife" lol) and it does seem to be helping my energy levels.
Jabe - I was really worried about Zoladex too, but I've been on it 3 months and it has been fine for me. Like I mentioned above, I'm tired, but I'm also fresh out of radiation and on other meds that are contributing. Other than that, the only thing I've noticed is that my hot flashes have gotten worse. I don't like it, but it's manageable. I haven't yet switched over from tamoxifen to an AI, so we'll see what happens with that. But I'm hoping for the best. Honestly, I really freaked myself out before starting tamoxifen initially because of all the women who do poorly on it. I was so scared to start, but I ended up doing really well on it. So I try to remind myself of that when I start worrying about new meds.
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thank you so much for the encouraging words!!! Really appreciated
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My experience hasn't been too bad at this point either. Side effects so far are more annoyances than big problems. I have a harder time with the regular reminder that I'm still a cancer patient (I get the shot in the infusion center and get free parking because I'm there for cancer treatment) than with the side effects at this point.
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yes! I too have to go to the infusion floor and it definitely messed with my mind. Ok—another question for you all. Do you worry about the impact of medically induced menopause on heart and brain? Just read an article about link between menopause and Alzheimer’s (with other factors mixed in). Kinda freaks me out here. Have your docs said anything? My primary mentioned cardio concern but not my medical oncologist. Am I preventing one thing (bc) only to cause another
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The risk of dementia and effect of the heart worries me a little, but honestly with my statsif I live long enough without a recurrence to develop those diseases, it’ll be worth it.
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Just wanted to say hi and thanks for starting this thread.
I'll probably just be lurking for awhile, as you all are where I may be in a month or two. I've been on Tamoxifen, at 5 mg/day, since the end of March. It's been rough and I can no longer function due to the massive SEs. I am a Spoonie, with many co-morbities/chronic illnesses already, besides cancer, so it's been a beotch to put it lightly.
Saw my MO on the 21st and she is thinking if Gabapentin doesn't help with the extreme joint pain/fatigue, just to name a few, then I will be switching to Lupron injections and then possibly surgery.
Wishing you all the best as you navigate new starts and new treatments. So glad we have each other to learn from.
Hugs and healing to all.
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Hi Spoonie, let us know how things go for you. Hopefully the Gabapentin will do the trick. I had some joint pain when I first started tamoxifen, and I found magnesium helped. Might be worth a try, although I wasn't in extreme pain like you are. The brand I use is Doctor's Best High Absorption Magnesium Glycinate Lysinate. I take 2 pills every night and sometimes 2 more if I need them. I also like Natural Vitality Calm, which is a magnesium drink supplement. In addition to helping with general aches and pains, magnesium is also calming and helps with sleep.
Jabe, I'm worried about increased risk of heart disease, stroke, etc. too. I had a consult with a top oncologist and breast cancer researcher when I had my recurrence and as I recall, her response was that most of the studies about those risks were retrospective studies rather than prospective studies. I believe that means that there can be sources of error from bias/confounding factors. I didn't follow exactly what she was saying, but what I took away from it is that she is not confident in the data and she believes the risk for people like me isn't nearly high as some of those studies indicate. Unfortunately, she was too far away to see on a regular basis, but my primary MO is excellent too. I'll ask her on Wednesday when I see her to explain more about the risks as she sees them.
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Thanks Mellee for the suggestion about Magnesium Gylicinate. I've taken that stuff religiously for the past 10 years to help deal with my chronic joint pain from my other illnesses. I currently take about 600-800 mg a day depending on the level of pain. Plus Potassium, Zinc, Iron, Fish Oil, Vitamin K with D3, L-Carnitine, and a bunch more throughout the day.
Before the Tamoxifen my pain was manageable and I could still function. Now I can barely take my dog outside to go potty or walk into the drs office. I seriously feel like I'm a 90 year old who's been hit by a truck and asked to do normal things while having broken bones and joints. It's awful. I sure hope the Gaba works, although I don't know how much longer I can give it. Each day is just worse and it's depressing as all get out. At 41 I want to be able to live, not just "exist". Le Sigh.
Keep us posted on your MO appt and what she has to say with regards to those risks. I'll be interested to hear her view point. Good luck.
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thanks mellee! I feel like I keep trading one set of issues for another (prevent recurrence: tamoxifen—tamoxifen May be causing fatty liver so —> ovarian suppression + AI = potential cardiac and neurological disorders). I keep remembering when I was done with surgery and my MO said “you’re probably cured right now” (before chemo or radiation or hormonal therapy). So why am I risking all this other crap? Sigh...I see my regular gyno Thursday and Am going to picking her brain on this as well
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Yeah, the Alzheimer's thing is freaking me out too. I'm not super high risk, so is doing this overkill? I'm not on tamoxifen because of endometriosis, but the cost-benefit analysis on this one is hard to figure out. Would I be better off taking my chances on recurrence? Which is the bigger risk?
And to complicate things I found a hard spot in my right (non-cancer) breast. Small, probably just tissue change from hormonal treatment or some other weirdness, but the texture is pretty much the same as my cancerous spot, and on top of the insanity of parenting at the end of the school year, I just want to check out. I have an ultrasound of the right in 2 weeks anyway to follow up on something that showed up in November's MRI, so hopefully they can just check the whole boob and make sure it's nothing.
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I hear you. Sending positive vibes re: your spot. Hopefully, it’s just a pain in the ass nothing.
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Seconded! Hopefully the ultrasound will give you all the clear, but I know how stressful it is to wait on results.
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Hi! I'm glad to have found this thread. I'm on Aromasin + Lucrin for ovarian suppression. I take a double dose of Caltrate for calcium and vitamin D. Twice a year I'm having Zometa injections to strengthen my bones. I've been on Aromasin + Lucrin for about 15 months. My MO is monitoring my female hormone levels.
I would say I tolerate these treatments but I definitely have side effects: hot flashes, insomnia, and some irritability. Strangly, I feel some minor joint pain if I'm sitting in the same position for too long, but it goes away if I move around. The hot flashes don't seem as intense now. I take melatonin for sleep. I also eat ground flaxseed (about 1 tablespoon) on yogurt because it's supposed to reduce hot flashes.
Aside from medication, I try to exercise as much as possible. Exercise has helped me in so many ways.
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Welcome, Axolotl!
Thanks for the flaxseed tip. I hadn't heard that. I'm going to try acupuncture soon to see if that helps with the hot flashes. Like you, I've found exercise really helpful. I'm finally walking regularly, and it seems to be helping with my joints and energy levels.
I take melatonin, too. It helps with my sleep, plus I've seen studies that it helps reduce the risk of recurrence. I've also started sleeping with an eye mask to block out all light. It definitely helps me sleep more soundly, but I started because of studies that show that exposure to even dim light at night may increase the spread of breast cancer to the bones. Blackout curtains can also work, but only if there are no lights from your clock, phone, electronics, in the room. The eye mask was weird at first, but now I find it soothing.
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Axolotl, was there any discussion with your MO about whether or not to take Zometa?
The first MO I consulted with would have put me on it automatically, but the MO I ended up going with doesn't want to put me on it until I have actual bone density problems. That makes me nervous, but I'm not eager to be on another med either. I'm not sure what to think, as both doctors are really good.
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