Starting/declining hormone therapy Nov, Dec, Jan 2018
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HPFULL - they do have 10mg prescriptions, could your onc prescribe that? So sorry you had such a short experience with your onc. They forget that this is our lives and more important than 5 min! I was able to get tamoxifen in 10mg pills so it exists.
Wised - that kitty of yours is the cutest ever!! OMG that look is Domino and Tucker approved!! So glad to hear that SEs level out, some hope that things get better as our bodies adjust.
Salamandra - I'm back at work full time, you will get back into the swing of it. But enjoy the free time these next few days!
Jaboo LOL on cutting the aromasin pills. Very DIY!
Tigerlily and JohannaK and anyone else experiencing cold flashes - I have one of those portable heaters under my desk (I just get cold easily period) and highly recommend them!
Carebearzzz - I'm thinking positive too! Somewhere further back in this thread I linked to some threads I found re: “Anyone feel better on tamoxifen?" etc that helped give me some encouragement that it's not all bad.
Elizabeth9 - it's your personal decision. Can you start more slowly on the tamoxifen? I'm going to start at half dose. There are some on this thread that have decided not to do the hormone therapy and I support them. For me personally I've decided to give it a go because of the positive nodes.
I asked Domino to show us some encouragement for taking the hormone therapy pills and she decided to dive into a fish stick with gusto to demonstrate just diving in (I tried to explain how a yummy fish stick is very different from our hormone therapy but to no avail):
And now for Hapa and Wised and others I can't leave out Team Tucker lol and here he is saying if we feel like this at times with the SEs that this is A-OK:
My update - I was actually feeling some bloating post egg retrieval surgery then read that taking letrozole AFTER the surgery is good to prevent estradiol levels from rising for bc patients, and OHSS (ovarian hyper stimulation syndrome). So I checked with my onc (whom I can just email) and the IVF doc and both said it’s good to take letrozole 5 days after surgery. So I started the letrozole again and believe it or not it’s helping! I had 3 lbs of water weight and bloat post surgery and taking nothing, started letrozole again two nights ago and this morning that extra bloat and water weight is gone! I just hope tamoxifen will be as good for me as the letrozole seems to be. Going to continue letrozole through tomorrow, take a break, then start tamox at 10mg firsr
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What adorable dogs!
Diane
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PebblesV -Your fur babies are soooo cute. Thanks for all the cute pics, they make me smile. I guess I could get 10mg, maybe I will call his Nurse and she can change it. When I asked him about side effects of Tamoxifen he said there really aren't any..j.ust maybe bone loss, or a slight increase of uterine cancer. I was thinking BS!!!!!!! But maybe I will be lucky and have minimal side effects. Did you stay off work while doing RADS?
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Thx Diane and HPFULL! And agree re: total BS re: side effects of Tamoxifen, I can't believe your onc said that!
I worked from home while doing rads and took one day off a week to focus on me / my health. The husband and I still need the income so I kept working! Not too bad working from home with cute fluffs by my side however.
I found the links - here are some people with positive experiences on Tamoxifen. So here's hoping!
https://community.breastcancer.org/forum/78/topics...
https://community.breastcancer.org/forum/78/topics...
https://community.breastcancer.org/forum/78/topics...
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Hpfull im sorry you're not having good feelings from your oncologist. The relationship between us and our drs is such an important one. Is there any way you could find a different one. You should feel more than comfortable to tell him anything or ask anything without feeling judged. Ive had to wait a long time both appts as well and its so irritating!! Take half like you want an ease into the tamoxifen. So far ive had dizziness and nausea from the femara. Maybe a slight headache and a little tired today. I wish i could find more people on here that have experience with femara..it looks like the majority are taking tamoxifen like you.
Salamandra i swear weve stumbled onto something with the cold issues! Its so unlike me to be cold. It has to be a side effect from the breast surgery as i didnt notice it after my hysterectomy which was a few weeks before my blm. Its very strange!
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Oh, great, cold flashes? I've been having those already the last few years when I wasn't taking anything, so I sure hope I don't get more severe ones. Someone said Tamoxifen weakens bones - isn't that the AI problem, not Tamoxifen? That's why I got put on T; I already have osteoporosis and couldn't take AIs without doing Prolia, which I can't do. I think it's rotting bones on AI and blood clots on Tamoxifen, and hot flashes and joint pain on either.
I took half (or crumbs) last week and full pills every other day this week. I'll go daily starting Saturday. I think.
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HPFULL, ask your doctor's nurse if you can have 10mgs strength instead of 20mgs. Just tell her that you are going to take it several hours apart. Do not cut Tamoxifen. Iaam not sure what efficacy changes may occur with the cutting. Your doctor should have no problem giving you 10 mgs instead of 20.
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Elizabeth9....very interesting article about Tamoxifen and the 3 different kinds of estrogen. This is the theory behind DIM. Its suppose to increase the good estrogen that our bodies so desperately need and decrease the bad estrogen that causes breast cancer. I do believe that in the future hormone positive breast cancer will be treated by balancing our hormones. However IMO its way down the road. A good start would be testing our hormone levels which is not presently done. Good luck to all navigating this complicated disease.
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wow, this thread is moving along quickly! It continues to amaze me how different everyone’s experiences are. Same disease, so many paths. I do think it’s important to find an oncologist you can talk to and who you trust. That provider will be your most important partner in terms of your treatment. I’m still not having any side effects with tamoxifen. I’m hoping I’m not one of those people for whom it will kick in in a few months. I’m loving all the pictures. I thought I’d include one of our cat Hödr. She was a feral kitty who adopted us.
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CjZach10 - I'm on femara (letrozole) along with lupron. So far, I'm ok. I have had a slight headache the last few days. I usually get headaches when I'm dehydrated but the good news of this breast cancer thing is that I am FINALLY drinking the amount of water that I should. My symptoms continue to be the same as about 2/3 of the way through chemo - sore feet (tops) and sore knees and extreme cold and moderate hot flashes. It's the lack of estrogen. I've added joint juice and sea cucumber to the growing list of supplements.....and no longer drinking hot tea at night. So no regular wine at night and now no tea. I hope that part doesn't last forever because it pisses me off.
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Wanderweg, love the kitty photo! Just looking around, as I have a lumpectomy and radiation first, but I know one of these drugs will follow. Thank you everyone.
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Wanderweg, Hodr is gorgeous! I love her green eyes against the black fur. (I couldn’t figure out how to get the umlaut over the o - please apologize to her for me.)
Pebbles, when I first read your description of Domino’s “fish stick”, I was picturing the frozen kind from Gorton’s, lol. Some days, I have Domino’s energy and enthusiasm, and some days I feel like sweet Tucker: contemplative and in the mood to rest on something soft.
Missouri Cat Lady, welcome to the club that nobody wants to be in! I’ve found lots of support here, and hope you will too. When you’re ready for radiation, look for a thread of people all starting treatments in the same month. Other than the initial shock of my diagnosis, radiation was the worst part for me emotionally, and the thread for “my” month really helped.
Happy Friday, everyone!
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Tigerlily318 that's good to knock. Ill check into those supplements for sure. Im hoping my hips and shoulders are hurting because of a front and not a side effect. Ive also had a slight headache and i never have those so im sure thats the femara. Im kind of surprized the side effects start this soon. I've always had alot of pain in my feet and back so im just keeping my fingers crossed im not really having side effects. Why no hot tea? That's my favorite thing! I order Chinese green tea from a tea house out of Colorado springs. Its like no other tea..anywhere!
Thanks!
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Ladies, I love all of the animal friends - so cute!!
My onc's office called yesterday to inform me that my bone scan put me in the osteopenia range. I developed hyperthyroid, then hypothyroidism after my son was born 11 years ago, and have been stable on thyroid meds ever since. Always a healthy weight, worked out, never knew anything was wrong. It turns out that thyroid meds can cause bone loss over the years, so I am in the "yellow" on the bone density scale.
Anyway, the onc says I should still take the AI, even though it can ALSO cause bone thinning. She prescribed a weekly med called Fosamax(sp?) that I have to research. However, I am feeling very uncomfortable about intentionally taking TWO medications (thyroid and AI) that I now know cause bone thinning. And am worried about side effects of Fosamax. I am going to talk to the PA at the Onc's office this afternoon. Is anyone in this same or similar situation?
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RCCalliMom - well, I have osteoporosis in my spine, at this age of 38, I am in menopause from Zoladex and started the AI yesterday 🤨🤨😞😞 I don't know what comes next 😞 Apart from the stupid BC I have no other issues and I had no idea I had osteoporosis.
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From what my MO said, if you have osteoporosis, or are near it, you HAVE to take a bone-strengthener like Prolia or Fosomax if you're on an AI. She put me on Tamoxifen since I wouldn't/couldn't.
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Oh Jaboo, I am sooo sorry - that is such a bummer! BUT I've heard that the bone strengthening meds can halt or even reverse some of the bone loss - hopefully, we can get some of that back with the meds plus supplements and exercise. Keep us posted on which bone med they prescribe for you.
Alice, are they going to have you do periodic bone scans to see how you are doing? I am hoping that I don't have to wait a full year for another bone scan. How is the Tamoxifen treating you now?
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ghostie13-I started letrozole (Femara) on New Year's Day. So far no side effects. Fingers crossed.
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I finally took my first Femara tablet yesterday. Only thing I noticed at work last night was that my hands freakin' hurt and my fingers got tingly and weird but it only lasted an hour. An hour I can handle....lol......so we'll see how it goes.
The only thing that would definitely make me quit taking it would be any urinary symptoms. I already have Interstitial Cystitis and its miserable when that acts up, really cant handle that getting any worse....
Did some research during my breaks last night on DIM and Reversatol. Not a good idea if you have already been diagnosed. May be good for prevention, but some studies have shown that it can cause breast cancer cells to reactivate in people that already have a hormone positive cancer....and none of us need that!
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I was prescribed 1200 calcium and 3000 iu of D a day by onc. I rarely hear women mention supplements taken with prolia, AIs, tamoxifen, zometo. Anybody taking calcium and D with their meds
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I'm on 1000 of Vitamin D, and that's even before getting an osteopenia diagnosis.
I try to get my calcium from dietary sources, yogurt, milk, my beloved cheese.
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I also have mild osteopenia. I’m taking 1000 mg of calcium daily, along with vitamin D3. I usually eat one serving of yogurt per day. I’ve also started doing weight bearing exercise. I did read somewhere that your body can only absorb 500 mg of calcium at a time, so I split the dosage in half and take it a breakfast and dinner.
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My MO had me add 1000 units (25 mcg) vitamin D right at the beginning, after my first blood test. With what's in my multivitamin, it brings it up to 2000 units, which is what she wanted.
RCCalimom, I don't know about future frequent scans for osteoporosis. Once the MO said I could do Tamoxifen, she said we can talk about bone strengthening a few months down the road. I haven't been on Tamoxifen long, and not full strength yet. So far no SEs that I can tell, but I already have aches and pains in my joints so it's hard to tell what's beyond the usual weather fluctuations.
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Hey just checking in... love seeing all the fur babies! Too cute!
I got my first lupron shot today. Painless. I had worked myself up so much that I didn't feel a thing. Now if I can just dodge the side effects then everything is gold. My MO wants me to give a few days before I start the AI anastrozole. She didn't mention anything about vitamins... that bothers me. Mostly because she just assumes that because I'm under 40 I'll skate through everything. I'm plus-size and could stand to lose a great deal of weight. She doesn't mention that either. Grateful to read all of your tips on combating SEs.
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I went to RO today. Wondering if I should wait to start Tamoxifen until after RADS. Not sure if I should just bite the bullet and do it all at once or do one thing at a tome
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HPFULL my radiologist actually wanted me to wait to start tamoxifen until after rads even though the oncologist thought it was fine to take both during. The radiologist said he'd go talk to the oncologist for me. It was less because there might be an issue and more because he didn't want me blaming tamoxifen side effects on rads lol. But I'm hindsight I'm glad, better to let our bodies handle one thing at a time and the oncologist admitted there was no risk in waiting. And those who seem to have done better on tamoxifen waited to let their bodies heal a little before starting the next thing.
GreenHarbor - I love the analogy that some days you feel like little energetic Domino and some like Tucker when he just wants a nice cozy nap.
ghostie thanks for the research in DIM - really good to know! - and good luck on your AI start. What's the dosage they have you take for letrozole aka femara? Just curious as I took it for the IVF stims and didn't have SEs but maybe because it's a lower dose?
Wanderweg - Hodr is just awesome! Love that you adopted a feral kitty and now he has a warm cozy home.
Jaboo - so much to deal with at 38, my heart goes out to you. I'm not as young as you but at 43 also feel like it's weird I'm going to be facing all these things now like pre-menopausal symptoms that I thought I had another 10 years before having to experience. We do what we have to do I guess.
Continued well wishes to everyone here on our journeys (there are so many of us now I can't individually respond to all, which is kind of awesome!). When I read about everything everyone is going through and how you face it head on, I am impressed at the resilience here...there are so many strong women on these forums.
Today is a momentous one for me - I hit my 30 lb weight loss milestone (started the healthy eating focus when I first got diagnosed with bc in August so it's taken 5 months to get here, slow but steady) and learned we have 2 more little fertilized embryos! Frozen now and at least an open window in the face of the closed door.
Domino and Tucker are giving me that “we want to be your only priorities" look. Well they are in luck, if we're lucky enough to have kids from this it won't be for a little bit still, must heal first.
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JoE - I take 1000 mg of Vitamin D. I opted for tamoxifen rather than an AI because I already had osteopenia. ( I have a fear of jaw bone necrosis which is a rare SE of bisphospohonates, the bone building drugs). I’m adding weight bearing exercises to help strengthen my bones.
Ghost is - Do you have a link for the info about DIM? I’m really curious about it.
Pebbles - yay on the additional embryos! And also, good on you for hitting the weight loss goal.
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Vitamin D and Calcium were also recommended to me. I started taking the D but keep reading conflicting things about Calcium supplements so like egregious I’m trying to do that through diet.
Pebbles congrats on the weight loss and embryos!! I love reading good news on these threads. :-)
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Happy Saturday! Oya, so glad that your shot was painless - that is so great!! Pebbles congrats on your weight loss - what a huge success!!
My cancer treatment team includes a nutritionist, and I got to meet with her yesterday. She wants me to take 1000 calcium split between morning at evening (Green Harbor, she agrees with you about the absorption), and 2000 D3. I also have to take Fosamax once a week - it is a pill that you have to take alone, with nothing but water, sitting up(?!)...the sitting up part sounds weird - it can cause reflux if you lay down. At least it is only once a week.
I asked about the jaw bone necrosis from drugs like Fosamax, Wanderweg and Alice - I am terrified of that, too. She said that they so rarely have seen that, and when it does occur it is in much older patients that have had something implanted into their gums, like dental implants. She said that if patients stop taking the med for a few weeks before and after the dental work, they can avoid this rare side effect altogether. It still is frightening and I will continue to research.
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Pebbles, yay for you! You deserve a treat! 👍🥰
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