Starting/declining hormone therapy Nov, Dec, Jan 2018
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I'm just now catching up on a bunch of posts, and just discovered this thread...
Tigerlily: regarding the (lack of) alcohol..... ugh! I've read no more than 2 glasses per week! So distressing as I loved making dinner with a nice often-refilled glass of red wine. I actually got scared straight by my unexpected diagnosis, and so stopped ALL alcohol as soon as I started chemo - in an effort to be extra kind to my liver, which I learned would be working overtime thru chemo. Not sure, but perhaps that is why I had ZERO negative side effects during that time...? In any case, once chemo ended, I pretty much kept up with the no alcohol til just the last few days. And I've stuck to the only two drinks per week. But it is NO FUN at all. I've found a great NA beer that I love. Tastes exactly like "real" beer. Now, looking for any low or no alcohol wine suggestions. Anyone? Is this even a thing? And don't even get me started on the cocktails that I love. blah. Please say there's something out there to fill the gaps between my two allotted drinks per week?!?!?!
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Spoonie - Thanks for the info on DIM. I will ask my MO and the integrative care doc I will be seeing in March about it.
PurpleCat - I waited four weeks after my last chemo to start tamoxifen, also wanting to feel more recovered before I added new problems. But I'm just over a month in on the tam now and still no side effects.
ghostie - Let us know how the letrozole works for you. My understanding is that I may eventually be switched to an AI.
kinderkel - I took a supplement (L-glutamine) with chemo and think it helped with some of the side effects. My MO approved it, so I figure as long as the oncologist feels a supplement is safe, why not try it?
umakemehappy - Limiting alcohol that drastically is the one dietary change I'm really struggling with. I'm trying to pour myself just an ounce or two of wine with dinner and spread the allowance out that way. I don't know of any low alcohol wines. And for me, the NA beers just don't work because I like super hoppy IPAs. Kind of sucks that alcohol is one the no list.
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InnaB2018 - how exciting you are considering a pom! Pomeranians shed about twice a year and surprisingly less than other breeds. Here's a good link on it - our border collie Tucker sheds constantly and way more than Domino.
https://www.google.com/amp/s/pomeranian.org/do-pomeranians-shed/amp/
Spoonie77 - first so wonderful to hear from you, and then so sorry to hear about the continued troubles! I read your link on the spoonie life, thank you for giving a spoon to update us and will continue to send good vibes so things can hopefully get better / smoother for you in 2019.
Pupmom - yes I got my oncotype which is not as low as yours but low enough (21) with results that said tamoxifen alone provided the exact same benefit as tamoxifen plus chemo. There was no difference in the risk of recurrence with either treatment so at that point my onc. said he would not recommend chemo due to the added toxicity it would add, and for no benefit according to my oncotype, the risk/benefit scenario weighed out as tamoxifen only the better path for me.
Kinderkel and ghostie - hoping you have minimal to no SEs in letrozole as well. I've actually been taking it the past 10 days for this min. IVF treatment and I haven't experienced any SEs from it if that helps! It's weird but true that letrozole is part of a breast cancer friendly IVF stim path.
Purplecat - ditto! Same here. I haven't lost that 5-10 more lbs I intended to lose before starting tamoxifen and probably won't in the next week or two before I start taking it. I know it's a tall order but I'm going to try try try to keep losing weight while on it, and defy the odds! #thinkpositive
Salamandra - I went back to work recently after completing rads and it was actually nice for me (surprisingly so) as it felt a little bit back to normalcy which I think is good for the soul a little bit. I still listen to these audio books re: nutrition and exercise impact on healing from cancer and sneak on the boards during my breaks so clearly the cancer fighting is still top of mind, but almost because I'm so obsessed with that right now, it's nice to have the more “normal" feeling moments where it's about the work and feels a little bit more like my life before all this hit. I think since you enjoyed your work before, it might be nice for you to get back into it too.
That said listen to your body when you go back to work and prioritize your health first. I called in sick today mostly because I woke up exhausted, and good thing as I took a 2 hour nap in the afternoon! I used to never nap during the day, dang post radiation fatigue! Glad I took the day for me vs pushing myself to work which is what I used to do.
Wanderweg - so good to know you waited before starting tamoxifen and have no SEs so far! I heard that from someone else who waited too. I’m also waiting to start.
For Dani and Wised and InnaB and Spoonie and kinderkel and anyone else enjoying the pom pics, today is a special one of Domino as a puppy! Not like this is an extra cuteness to influence Wised and InnaB to go adopt that pom or anything...
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I didn’t think there could be anything cuter than adult Domino.... puppy Domino is adorable! As we begin a new year, I’m so grateful for the friendship and support I’ve found here. It has helped more than I can say. Wishing us a all 2019 of happiness, peace and health.
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Puppy Domino has made my day!!!
Wanderweg, thanks for sharing that you haven't had side effects so far. It's encouraging to know that can happen!
As a very occasional drinker, the alcohol restrictions don't bother me too badly. It was surprisingly disappointing to learn that grapefruit is going to be a no-no, though. I bought a few yesterday and am going to enjoy one last hurrah this week. It helped to remember that there are dear people in my life who can't ever have any gluten, or cheese, or ice cream, or nuts, or have to count every single carb, and I'm just joining their club now. Maybe the people who make it to old age without any medications or dietary restrictions are the exception and not the rule.
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Pebbles, in the midst of our shock over a cancer dx, don't you love those words "no chemo!"
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alcohol restriction is not a big problem for me, although we loved our wine with my DH. I stopped drinking the moment I was diagnosed and had zero alcohol during chemo... in the month since chemo ended I had 3 teeny-tiny glasses of wine (christmas...)
sugar restriction - that's another story! oh my I do love chocolate and everything related!! But since estrogen is formed in fat, I have to watch my weight closely. The tumor was 100% estrogen dependend... Well, I just had a chocolate a few minutes ago with my (unsweetened!! what an achievement for me) coffee...
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I have sips of my husband's wine here and there but I have also been abstaining from alcohol from a few months before my dx. I still eat chocolate. The only other sugar I have is when I go to Starbucks. I avoid dairy like the plague (so it's vegan chocolate for me) due to the hormones.
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hapa, you are very brave with your sugar restrictions!! I have to admit I had a lot christmas pastries... I make them with lower sugar content, but still they are sweets. christmas tradition in my country, couldn't help myself. My BMI is now over 20 so I have to watch it. I am really not sure about dairy. do you avoid all dairy? I have read in various sources that estrogen is only in the milk fat... so I think I will eat no-fat dairy products like skyr that is also high in protein.. .. what do you think? and others?
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pupmom - yes definitely! I've learned to count silver linings in all this and no chemo was (is) a cloud lifted.
Greenharbor and purplecat - so glad puppy Domino made your day! Here's one more for kicks (below). Greenharbor I agree with you that this community has been so helpful. Purplecat enjoy those grapefruits! I still crave bacon but not allowing myself that - I say for now, not never, but for now.
Jaboo and hapa - I found this great site called https://foodforbreastcancer.com/amp that tells you if certain foods are good or bad for bc based on the scientific studies behind it. The good news - chocolate is recommended for breast cancer! Dark chocolate and in moderation but still, that's dessert. The not so good news - no dairy. I've cut red meat and dairy recently and no cheese is hardest for me.
On the plus side I learned to make a gluten free and dairy free pumpkin pie using honey and chocolate which are both sweet breast cancer fighters and it's delicious!
Puppy Domino's “where's my piece of pumpkin pie" look:
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Jaboo, I have heard that you can limit the hormones in your dairy by sticking to nonfat and organic products. I think the non-organic cows get synthetic hormones to stimulate production which results in more hormones in the milk. I'm pretty sure there are more hormones in the fat, but I don't know that there's none in the rest of it. But considering milk is a by product of pregnancy and birth, I don't see how hormone free dairy is even possible. That being said, I try to stay 1000 miles (or 1600 kilometers when I'm in europe) from butter, and while I was on chemo I ate some nonfat organic greek yogurt for the protein and probiotics when my stomach was upset. I might be more ok with it if I were on tamoxifen, but I'm on AIs so there's nothing to block the dairy hormones from latching onto my cancer cells since AIs just stop the production of estrogen and don't block it from binding to the estrogen receptors, though there is no scientific evidence that I know of to back that theory up.
My weight is up a wee bit too, but I'm going to wait until I'm ~3 months out of radiation to diet. I think it's better to maintain optimal nutrition during recovery and if that means overeating a bit to make sure I get everything I need, so be it. I've never had a problem with losing weight so I'll just deal with whatever I've gained in March.
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hapa, utter is especially difficult to avoid for me. I just love it. I love quark, kefir, yoghurt and milk... all dairy in fact. During my whole childhood we had a cow, so I'm pretty used to it. Our dairy was as organic as can be, of course. I'm thinking about inquiring around whether there is someone with a cow willing to sell a few littres of milk a week... I will deffinitelly ask my MO about it with regards to my osteoporosis and AI.
Pebbles reminded me of the foodforbreastcancer page (thank you, Pebbles) and I checked. Yoghurt is actually recommended for BC and so is greek yoghurt and kefir (which I love, in central Europe it's very common). Skyr is very similar to greek yoghurt... cheese and butter isn't recommended 😞, which I assumed due to the fat content... Of course I'm not trying to convince anybody, just sorting out my thoughts.. . I would like to hear any other input regarding hormones and dairy...
Did anybody ask your MO about dairy and hormones? What did they say?
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Go to the disclaimer/about us section of that Food for Cancer site. That's where you'll find it's one woman with no scientific, medical, or nutrition background running the site. And there's a page on supplements that's all sales. Red flags galore! Ask if your oncologist has a nutritionist if you feel you must modify your diet.
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I can’t live without Greek yogurt, so I made a point asking my MO, nutritionist, integrative physician and dietician about it. Everyone told me the same thing: buy plain organic grass-fed yogurt full fat and enjoy guilt free.
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food for cancer is based on scientific data, but almost none of it is human studies and I don't know if any high quality human studies on diet as it pertains to cancer risk or recurrence even exists. But there is a growing body of evidence supporting a plant based whole foods diet as the healthiest way to eat. I've done a completely plant based, whole foods diet with the exception of chocolate, but buckled on that during treatment a few times. I do find it a relatively easy diet to stick to most of the time, though it is exceptionally difficult during the holidays just due to all the travel and social eating involved with holiday get togethers. I feel really good when doing that diet, so that is what I do. Vegan, no processed foods (sugar, flour), nothing deep fried, no alcohol. It sounded horrible when I started but when going back to the things I used to eat before this like pizza and muffins, they just aren't as appealing anymore. Chocolate and wine were still pretty good, but a few sips of wine were all I needed. I do miss good bread with fresh salted butter though.
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Hello! I rang the bell today (post chemo and then radiation) and started Lupron and femara yesterday. No side effects yet, lol. A few thoughts:
I have suspected and the doctors confirm, you never know 100% what is as a result of the drugs and what is as a result of low estrogen/menopause. I have had achy knees and occasional hot flashes since I finished chemo. So I know it is the low estrogen and not the drugs. Since my cancer is 95% estrogen/progesterone fueled and I'm only 45, I'm resolved to stay on the drugs and am being as optimistic as I can.
I have opted to do an infusion every six months to combat osteoporosis. I am spacing on the drug name, but as described it seemed like a wise thing to do. I am getting my Vitamin D tested and a bone density test next week, so will be on top of it. My oncologist ordered all.
I have spoken to and consulted a lot of folks on the diet/alcohol. Everything (except processed meats) in moderation and lots of fruits and vegetables is what I hear. There is no conclusive evidence on dairy or sugar but too much of anything isn't good. And umakemehappy and others re alcohol, well, my appointments yesterday made me feel better - a half glass or glass a day and no more but if you drink 2 on occasion so be it. There are not studies that looked at alcohol AND a perfect diet. You don't know that the folks drinking didn't also eat fried food all day. So I am cutting back yes, but as someone wrote on this site when I first joined, they (and I) are not going to live their live in penance because they got cancer. Good advice.
Exercise, exercise, exercise. That is clear, and I intend to really up what I had been doing - I had been very lax and was doing yoga 1 or 2 x a week and walking my dog. I have been doing way more during treatment than I was doing. Going to keep it up.
Hapa, glad to hear! Lavender, congrats! and Wanderweg, great to see you here.
FYI, the Lupron shot HURTS. My biggest thing right now is to find a place closer to home or work since I need them every 4 weeks. Maybe some day I can give them to myself. And I think my body is too used to Claritin. It isn't helping me and didn't help me. But I've always taken one a day so who knows.
Onward and upward!
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CONGRATULATIONS, TIGERLILY!!!!
WAY TO GO!!!
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Congrats to you, Tigerlily! And you are already starting with hormone therapy. Best Wishes!
Tiger and everyone- I have a month off before I start an AI but I am using this time to try to educate myself. I am writing questions for MO on a daily basis...wait til she sees my long list, which will be even longer by the time I see her in February! I wonder how everyone decides which AI to take? Did your doc just suggest one, did you look at all the side effects then choose one? I printed a chart that compared the SE's of different drugs. I am reading on some of these threads that even many premenopausal women are taking Femara and was curious about the choice. I am wondering if my MO will leave it up to me as she did the chemo decision or at least make a suggestion. I would love to know the name of the infusion drug you will receive to help your bones, when you think of it.
I always felt that I ate a pretty healthy diet, with the exception of too many cookies and pastries. Looking at the food for cancer suggestions I would have to throw out practically every favorite recipe I have. We are already doing a low sodium diet for my husband's medical issues and have added more fruits and vegetables to our meals. I think being more mindful about food choices and following Tiger's idea of moderation will be the way I go, but I love hearing about what everyone else is doing.
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Thank you egregious and librarygirl!
The drug to prevent osteoporosis is called Zometa. My oncologist also said there are some studies that suggest it may help to reduce recurrence. It is done via infusion, which I don’t love but it is only every 6 months.
My drug therapy was described as the best option in terms of effectiveness. My MO said the specific AI is what he usually does and that we should start with what they think is most effective and use other AI or tamoxifen as a back up if I struggle with SE. Since you don't know what SE you will have ahead of time I am all for it and am trusting their opinion. The research now is that the AI is slightly more effective, at least in my case. I am not an oncologist but the rationale is sound for for me.
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Dipping a toe in here. I'm only just starting radiation, so won't start hormonal therapy for another month or two but am reading along to find out what people are doing. I'm premenopausal so tamoxifen is of course what my MO recommended first, but she also floated ovarian shutdown + AI as a possibility depending on various test and scan results. Pretty worried about SEs since I tend to get all of the side effects of every med I ever take. Obviously reducing risk of recurrence is important, but I already have some chronic fatigue, pain and other fun stuff, so am not excited about adding to the list of things that make daily life harder. Interesting to see the range of approaches and experiences here.
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Welcome OTMom! Hope you find a lot of support and encouragement here.
Come and join us in the group of people going through radiation this month.
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Welcome, OTMom! You're in the right place for support, we're here for you every step of the way!
The Mods
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I just took my first Anastrozole. 🤞 that I can tolerate it. Just like everything else about bc treatment (except surgery), my brain is screaming No No No!
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Congrats, Tigerlily! I was surprised at how meaningful it was when I rang the bell. Welcome OTmom and Appyfan! OTmom, I'm glad egregious suggested the January 2019 rads thread to you. I found a lot of support and friendship in the thread for “my" month. I'm on anastrazole because that's what my MO suggested starting with first. For anyone starting (or contemplating) an AI, it's important to remember that everyone is different in terms of the side effects they will experience. Some will experience severe issues, some will have moderate-but-manageable side effects, and some will have mild side effects. I was lucky to be healthy before my diagnosis.... I had never had surgery (other than getting my wisdom teeth out as a teenager) and didn't take any prescription medication. Being a person with an entire medical team and who takes daily prescriptions is new to me, and took a bit to wrap my head around. Appyfan, I decided to at least try everything my doctors suggested, wanting to do as much as I can to prevent recurrence- I'm only 52, and am planning on living to 92 like my grandmother. As far as diet goes... my MO said lots of fruit and veggies, limited red/processed meat and 1-2 drinks per week. She also said I have to find a plan that works long term for me and lets me live my life. I'm trying to cut back on sweets, which is soooo hard. I recently joined a gym, which is a huge change for me, being a couch potato at heart. Like tigerlily, I was really impressed by the studies that show 150 minutes of exercise that include some weight training will reduce my risk of recurrence by 40%.
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Congratulations Tigerlily!!!! It is a wonderful, emotional time.
Re: which AI, I asked my MO quite a while before I started which one she'd put me on and she said anastrozole because that's the one her patients have had the fewest SEs with. I must say I was more than a little nervous going into it but so far it's been tolerable. (I hadn't taken any prescription medication since the pill.) I take it midday with Vitamin D and Biotin. A calcium supplement was also recommended but I've read conflicting info on their efficacy. I am trying to increase the calcium in my diet. And I've posted this several times on various threads but will repeat here. I had a short conversation with my BS after surgery in which he talked about the various treatments I'd have coming up. He said the AI has the "biggest bang for the buck." He said it's so important that if he had a family member who was refusing it he'd crush it up and put it on her oatmeal. Another BCO member said her MO told her it gives a greater percentage reduction in recurrence probability than chemo. I truly believe it is a *very* important part of treatment. I really think that's why I was so nervous going into it--I feel like I *have* to stay on it, regardless of SEs.
Diet--oy! After my 2016 BC, my RO told me she was intermittent fasting for all kinds of reasons not having to do with losing weight. I started it then, upped my time at the gym a bit, and cut back on alcohol. I lost 35 pounds in about eight months. *But* I haven't looked at a scale in about a year and a half--I know I've gained some of that back. I'm not one to hold back for holidays, vacations, weddings, graduations, . . . I was *very* meat-intensive through chemo and rads and have only recently started cutting back on that. My carbs are much lower than they used to be (again, though, except on vacation), but it's only very recently that I've been thinking I need to up veggies (never my favorite thing). I think I'm back to what worked pretty well for me alcohol-wise--only drinking when we're entertaining or when we're out. (For those of you who love your wine--like I did!!--it helps that I usually know when I can look forward to a glass of wine or three by looking at the calendar for upcoming times out.)
Exercise--I was a huge couch potato for 20-25 years. One of my kids had just moved away but tore his ACL so we brought him home for surgery and rehab. He did PT through a gym so he could work out too and I joined it with him. That was over five years ago and I'm still going regularly. Started out a few times a week but am now going pretty regularly six days a week--two days of upper body weights/treadmill, two days of lower body weights/bike, and two days of yoga. My GP told me several years ago my gym time is fine. What I need to work on is not sitting on my fanny 15-16 hours a day. I have fits and starts with standing desks, an app that makes you move every hour, . . . but can't really claim success with making myself move more during non-gym waking hours.
One more note on diet--my one 2019 resolution is to cut back on sugar. I've always had a huge sweet tooth, but I'm pretty committed to the idea. (Of course the last few days I've been plowing through all of the candy I have tucked away just to get rid of it. LOL!!)
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I’m glad this thread is so active, and it’s nice to see some familiar faces (hey, Tigerlily).
Still doing well with tamoxifen, about 5 weeks in now. I see the integrative care doc in a couple of months so I'm working hard to put an eating plan in place that will put me on the right track for what I know he'll recommend. Oatmeal with flax and fruit every day, at least two cruciferous vegetables every day, mostly plant-based diet, no fast food, no processed foods, very low sugar, very light drinking (I literally pour two ounces of wine into my glass with dinner). I haven’t eaten mammal since 2001, so cutting back on red meat wasn’t a issue for me. But I am planning to have chicken no more than once a week, and fish twice, then vegetarian meals the other days. And I'm doing intermittent fasting - I don't eat anything at all for a 14-15 hour stretch each day. So whenever I have dinner, I don't eat again until 14 or 15 hours later. Which usually means 10 or 11 am. Anyway, I'm going to do all that for the next two months and see what the guy says, and then see what I need to further modify.
Also, I’m still recovering from ankle surgery at the end of November, but I’m starting to rehab myself with the goal of getting some exercise every day. On nice days I walk outside, otherwise on a treadmill. I can only do a mile so far without my ankle swelling up too much, but steadily improving. I know I need to add in weights and probably things like squats to get me chemo lead thighs back in working order! I’m not a naturally athletic person, but I don’t want to passively wait to get sick again
Ingerp - how do you structure your intermittent fasting?
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Welcome OTMom!
Sending you lots of strength for your upcoming radiation treatment and hormone treatment journey.
I completely agree with other comments-we don’t know what SE’s we might have until we try it. I’m a healthy, active hiker/exerciser-and I do not have any other medications in my life. So the daily maintenance hormone blocker of tamoxifen was a new journey for me.
I was on it for about 3 weeks-and I had 2 waves of pretty crushing-unable-to-turn-my-head-back pain. Not typical of most folks on this-I am sure! My MO told me to hold off taking it-until she sees me on 1/24-and we’ll look at alternatives then.
And I have a high pain tolerance-never had back or neck pain before. I am 47-on the cusp of natural menopause.
Thank you all for being here-this private gal appreciates reading all your experiences!
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wanderweg--before I started IF I read up on the <5?> various ways to implement it. Started out with skipping breakfast and found it wasn't particularly hard for me (I know some people really need to eat in the mornings), so that's what I've been doing. I often end up eating lunch around 11 AM--I think that gives me about 15-16 hours without eating. I don't really count hours, just skip breakfast (although I do drink tea/coffee with milk/cream all morning, including one cup of chai with honey and milk, so I am getting a few calories). (BTW--I do not IF on vacation. One of my big treats is having toast in the mornings--yummmmmmmm!!!)
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Anyone easing into their pills? I finished rads a week ago tomorrow, and my dr. seemed pretty blah about when I should go ahead and start the tamoxifen. I decided tomorrow sounds good. Dr. said, sure, waiting a week is fine. (So is waiting a month fine? No idea. When I contact her through MyChart, I get very short to-the-point answers). lol.
ANYWAY... thought maybe I'd ease into it to give my body a chance to acclimate? I have 20mg tablets. Was thinking maybe breaking in half for the first week? Month? No idea. Or maybe taking every other day? Has anyone else done something like this? Am I making everything just more complicated needlessly?
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Umakemehappy, I just started Tamoxifen the other day. I cut the first pill in half, sort of. A smaller half crumbled, so I just scooped it up and swallowed it with water. I took the intact slightly-more-than-half yesterday evening. I think I'll do halves today and tomorrow, then go whole on Sunday evening - unless I chicken out and stick with halves! So far I feel fine. I do plan to ask my MO what the statistical difference is on risk of recurrence for my particular cancer, factoring in age and other personal variables, vs. risk for a blood clot while on Tamoxifen, also based on my personal info. If the clot risk is higher, I'll take my chances with a recurrence or new BC, which scares me less.
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