Starting/declining hormone therapy Nov, Dec, Jan 2018
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I'm thinking of easing in too. The pills have been in my house since late October, between the surgical follow-up and the radiation, but everyone else on my medical team told me my SO is unusual in prescribing them that soon and it's fine to wait to recover from radiation. I've set January 15 as the start date, 2 weeks after rads ended. My prescription comes in 10MG to be taken twice a day, but I'd rather just take them both at once. It's going to be hard enough to remember to take a pill just ONE time per day. But I figure I'll do just one 10MG pill per day for a week or so and then up it to two. Glad to hear it's going well so far for a number of you who have posted; that gives me hope that it might not be so bad.
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umakemehappy - I read somewhere it's better not to split the pills, but the life of me I can't find that reference. I just started with the 20's though, and it wasn't a problem.
ingerp - that's what I'm doing - skipping breakfast. It just works out to about 15 hours. And I also don't do it when traveling - I love breakfasts on vacations and even though I drink coffee black at home, I drink it with cream and sugar on vacation. (BTW, I went to grad school at UVA - I love Charlottesville!)
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Since I will have a month between rads and hormone therapy I guess my doc doesn't see any urgency in starting right away. I have been reading more about being ER+, PR- and somewhere I read that having a single positive hormone receptor would make me Tamoxifen resistant. Wanderweg, I see that you are PR- too. Did your MO say anything about that? I had wondered about taking Tamoxifen for 5 years and then switching to an AI, but that might not be an option for me. I know there is a single hormone thread on this site that I should start to read.
SugarMaple, ouch! I am sorry for your back pain but assuming it stopped once you stopped taking Tamoxifen. Do you live in VT?
Tigerlily, thanks for sharing info about Zometa...just another option if I find out I need something for bones.
Welcome Appyfan and OTmom. Good luck with radiation, OT. I had such an easy time with no skin trouble that after a couple of weeks I asked when they were going to turn on the beam!
Ingerp is there a BC benefit to fasting? That is something I could do if it might help.
Pebbles, how does Domino feel about fasting?!
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Hey LPLlibrarygirl!
It took about 5 days after I stopped to feel ‘like me’ (or just able to turn my head!). I’ve been good ever since! Maybe a 10 mg start like some of you have mentioned would’ve worked better for me. I’m so glad to hear that so many of you are having little to mild SE’s on tamoxifen
Sending you lots of hugs and strength
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LPL - I had not heard that about PR- making you tamoxifen resistant. I will definitelyask my MO when I see him in a month. This BCO site has a article about fasting and breast cancer, with the link to the JAMA study:
https://www.breastcancer.org/research-news/can-fasting-reduce-recurrence-risk
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Wanderweg, thanks for the link about fasting.
Here's a link to info about tamoxifen resistance in PR- women, though it's not the original one that I read.
https://academic.oup.com/jnci/article/97/17/1254/2...
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Hi All,
I was so happy to find site this topic - I am fairly new to this site, but have found so much helpful information here since my diagnosis. I was diagnosed with DCIS and IDC in November, and am two weeks post-mastectomy (left) and tissue expander placement with sentinel node biopsy. My pathology came back last week at Stage IA, Grade 2, 0/3 nodes. I just started Anastrozole yesterday, and like many of you, am nervous about side effects. My oncologist was initially unsure of whether to recommend Tamoxifen or Anastrozole, because I was pre-menopausal and had my period in October, and spotted in November. I had no period at all in December, so she decided that the AI would be a good choice, as I appear to be going into menopause. I wonder if there is a way for the MO to test and see if the AI is actually working to block estrogen at some point? I don't want to find out that I am on a med that doesn't work at all for me, and that I should actually be on Tamoxifen.
Is it odd that the MO started me on Anastrozole BEFORE having me do a bone scan? I have my very first bone scan appointment next week.
As far as side effects go, I think I have been having hot flashes for the past month, but I just started the AI yesterday, so the hot flashes can't be connected to the medication. I did wake up with a headache this morning, but I was also up all night because my incisions are itching and I have weird, electric jolts and pins and needles throughout the mastectomy/TE side, so the lack of sleep could be responsible for the headache.
I will update you all re any side effects that I notice - it is so fantastic to be able to compare notes with all of you wonderful women!
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Wow I missed a lot in a day! Awesome to see all the activity here and read about / learn from everyone's individual approaches and experiences.
RE: easing in to tamoxifen - that's what I'm doing based on a couple other people's experiences who had little to no side effects. Before we had this cool thread, I was seeking out those on the boards who mentioned they did not have much side effects from tamoxifen. I messaged a couple lovely ladies who were kind enough to share with me what worked for them, and both of them waited 1-2 months after their last treatment to start, and one of them eased into it, starting at 10mg for a few weeks and working up to 20mg. So I asked my oncologist about that and he said it was fine for me to wait to mid-Jan to start (I finished rads Dec. 11th) and also that I could start with 10mg for a month and ease into 20mg. He prescribed me 10mg pills which are available so I could do that! So that's my plan.
RE: diet - I've scaled back on red meat and dairy and processed foods and sugar, added fruits and vegetables, since the diagnosis and have also lost 28 lbs! I was stricter about it the first 4 months since the dx but the holidays added some back, everything in moderation right? FYI my oncologist thinks it's less about what you eat and more about the % fat, and that exercise is key. I'm studying a lot of different sources but like FoodforBreastCancer.com because it cites the scientific studies behind the recos, so I can just click on those studies and form my own opinion (I think the disclaimer said the site references 17,000 studies!).
RE: exercise - it's like Tigerlily said, exercise exercise exercise! And I haven't enough. I know I need to and a lot of what you ladies have been doing motivates me. It's hard as I'm back in the office full time now but I'm trying to hit the gym during my lunch break, and the pups are getting longer walks from me now. Still I have to ramp this up before I start tamoxifen!
RE: fasting - my friend's Aunt had a stage 1 tumor and decided to heal holistically, didn't even do the surgery. She shrunk her tumor - took her 3 years but she did it! - and has been 2 years cancer free. She shared with me what she's been doing (she was my initial inspiration for no red meat and no dairy and no processed foods) and she did intermittent fasting from around 8pm to 12pm the next day. She also lost a lot of weight. So I started to incorporate some intermittent fasting. And I don't know if it's luck or measurement tools differing or something else, but when they did the biopsy and initial ultrasound, they measured my tumor at between 2-3cm, and when we got to the surgery, it was 1.7cm. I had already started some of the diet changes and intermittent fasting and my friend's aunt is convinced I shrunk the tumor like she did. Who knows but it did happen and I'm glad the tumor was smaller than they initially thought!
So I think intermittent fasting could be useful but I don't do it all the time. However in answer to librarygirl, this is what Domino thinks of intermittent fasting and she is not a fan. In fact she is showing us how easy it is to put food and treats into her mouth in response to the whole fasting idea lol.
PS - Wanderweg I'm so encouraged that you are 5 weeks into tamoxifen and just fine! Thank you for sharing, and also sharing your diet etc, I'm bookmarking thst
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I’m with Domino on the idea of fasting!
Welcome to RCCalimom! This is a new thread (thanks to Wised for starting us off!) and it’s become my favorite. Those pins and needles you’re feeling are nerves that were cut during surgery. The sensationscan happen for a while, so don’t be alarmed. As far as not having the DEXA scan before starting anastrazole.... I don’t think the timing is that unusual. It’s my understanding that anastrazole affects bone density slowly over time, and not in just a week or two. Definitely check with your doctor if you’re concerned.
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LPL - Thank you for that article. Scary! Basically conforming, among other things, that PR- signals a more aggressive cancer. But it gives me a basis for my questions to my MO. And I had never heard of HER1 - wonder why that doesn’t get tested in the tumor? I hate the idea that tamoxifen might not work for me since I have osteopenia already and want to hold off on AIs. But I may need to reconsider. As to the AI and bone scan - it takes a while for there to be bone loss, so a scan in the same month you started is plenty early. Also, I have this nerve jolts still, and my BMX was in June. They’ve lessened considerably, but I’m told they are normal.
About the fasting - if it felt like fasting, I don’t think I could do it. But it feels more like taking a leisurely approach to getting around to breakfast. The bigger change for me is not snacking after dinner. It used to be not uncommon for me to wake up in the middle of the night and get a snack. Not any more. I’m not thinking I need to do fasting every single day, just most days. I’ve just been doing this for a couple of weeks and it doesn’t feel like a sacrifice at all. And I don’t think it’s as important as being careful about what you eat.
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3 months post mastectomy with lattisimus flap and I was feeling so good to be back to exercising at increased levels. Then I started having increased problems with nerve aggravation and numbness in my arm. I don’t know if I should back off or keep at it knowing the nerve thing is something I just have to deal with. I certainly hope the discomfort is not permanent as I think I will go mad
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Hey all
It's been a couple of weeks since I chimed in. I was considering declining hormone treatment but have decided to follow MO recommendations. Instead of Tamoxifen, I'm doing lupron injections along with AI. While pre-menopausal, this a regimen showing promise & my MO thinks there will be less SE. I'll start next week.
Pebbles, in response to my last post, you'd asked me to post the link to the updated 2018 staging. Here's the link to the AJCC 8th edition for bc staging. Tables begin on page 39. For patients treated with surgery first, we use the Pathological Prognostic table, pg 43.
Here's to a healthy, happy new year!
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I have been following this conversation since the initial post. Pebbles, I am glad that your doctor is helping you ease into the medication. I believe you will find great benefit by doing this. To anyone else starting a medication, ask your doctor if you can begin with an introductory half dose, and increase within a marked period of time. There is less resistance from the body, when it recognizes a substance, than it does taking something full strength from the beginning.
Ask your doctors about taking Vitamin D supplements. Magnesium can be taken for aches and pains - epsom salts works too. Good luck ladies.
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umakeme—I started my Anastrozole every other day with my MO’s blessing. Of course I’d read about it here on BCO. I did it for about three weeks before going to every day. Not sure if it helped but my SEs have been pretty minimal.
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Whoops—sorry. I posted that before I’d completely caught up.
Re: timing of AI/Tamoxifen, my MO also didn’t seem to be in a rush for me to start. I ended up not starting until about five weeks after rads.
Re: my decision to IF, it had nothing to do with BC. I was just having a follow-up with my RO and I was asking her general health questions (“What kind of supplements do you take?”, . . .). (I like to talk to MDs about things like that—used to be I rarely saw a doctor <sigh>.) I wasn’t aware there was a BC benefit (and didn’t do it during chemo—I was trying to keep my body fueled). I remember reading *ages* ago that humans were meant to eat like big cats—one huge meal every day or two, as evidenced by our long intestines. We were not meant to graze (although I am the best at that!). I figure IFing is a step in the right direction.
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Pebbles, I think I am getting addicted to Domino. Your posts and quips about her are wonderful and smart.
I'm so inspired by all of you talking about weight loss. My weight has crept up and up over the last couple of years. I'm still healthy by all blood pressure/heart rate/cholesterol measures, and I was biking almost 20 miles a day for my radiation treatments, so I'm not *that* concerned about physical fitness. But oh my vanity! It was so lovely to fit into those size 10/12 dresses, while it lasted.
Eating is a great source of emotional comfort for me, and I've also had some flirts with bulimia/purging in the past, and all of that makes me very nervous about dieting. I think purging is probably much worse for your health on every level than carrying the extra pounds I am, and this whole year has been challenging enough for my mental health as it is (lost a parent, the cancer dx, changed jobs). I've never been good at sticking to a diet and the last times I lost weight was when I was in a very good emotional place and it just seemed to happen effortlessly.
So I dunno. I like the idea of IF... there were times in my life when I just had coffee for breakfast and was fine. Then I could have a snack bar at work around noon or 1, and then a nice luxurious sitting at home meal when I get home, most days between 4pm-6pm, and be all wrapped up with eating by 5:30pm-7pm.
TBH I'm really skeptical of a lot of the studies about diet and exercise. I think that the people most likely to be able to stick to diet and exercise regimes are likely to be those with more leisure/time, less stress, more economic privileges, better all around access to health care, etc, and I think that would impact recurrence rates significantly all by itself.
But it could be really nice to fit back into those dresses again...!
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Hi All,
I'm new but am grateful to have found this site. You all are so generous with information, it's very helpful. I start radiation on 1/14/19 and then AI hormone therapy after that; I'm not sure which one my MO will prescribe. I am so concerned about all the SE and it was good to hear the idea of easing into it. I've also heard different thoughts about how long to take these pills. My MO says I'll have to take them for 10 years, which is such a dreadful thought. I was reading some people take them 5 years. I'm 62 and hate the thought of taking these pills, especially for 10 years.Has anyone else been told 10 years?
Trying to stay positive through all this but it's not easy...
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Oya80, we are the same age. my MO also wants me to start an AI + I am already on Zoladex. I have an appointment on Monday, last time she said she wants me to start in January too. Do you know which AI will you be taking yet?
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WannaB—I keep seeing research that longer is better for the AIs. I was told “at least five years.” A good friend going to the other hospital in town was told seven. I’m pretty sure after we’re all through five years there will be even more evidence that 10 years is more effective.
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Oh and Wanderweg—I went to UVA as an undergrad back in the day. At first it was kind of weird being back here as a real person but it was a great place to raise a family. :-)
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Welcome WannaB! It's a stressful time for sure, but the support here is amazing.
I have only met with my MO briefly to go over my Oncotype score. I am anxious to see her again, and well, just anxious about everything. At our previous meeting she said I would take hormone therapy for 7-10 years. I figured that was because my oncotype is 29 and I turned down chemotherapy (I am 68 and it was only going to help by 5%), and because I am PR- which doesn't respond as well to hormone therapy.
I tried the fasting last night with no problem!
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Salamandra, I too have always focused on a particular weight or clothing size when I've tried to lose weight. What's different for me this time is that I'm trying to improve my bone density (DEXA scan before my lumpectomy showed mild osteopenia, plus I have a family history of osteoporosis) and reduce my risk of the breast cancer recurring. Yeah, I'd like to weigh 15 pounds less than what I am now and to look better, but I’ve found that trying to improve my overall health long term is what’s motivating me to make changes this time around.I’ve joined a gym for the first time at age 52. The diet piece is hard for me. I have a sweet tooth, and I'm not a vegetable person. I do better some days than others, but I’m trying! We all have to figure out what’s best for each of us for physical and emotional health.
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Welcome WannaB!
In addition to this thread you might enjoy the discussion of others going through rads this month.
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Oya thank you for posting that link and also the pages to go to as that's one long PDF! Based on that with my hormone receptor status combined I'd be stage 1B instead of 2A.
Michelle in cornland - thanks for being the example that helped me approach my oncologist with the idea of starting at 10mg and working up to 20! Fingers crossed that it will work out for me - I start in about 10 days...
Salamandra - Thx re: Domino! And I've had my moments of binging and purging and bulimia too, and I work full time, so I do get where you're coming from. I've also been up and down in my weight - I got super fit a few years ago and then gained it all back and then some the past 3 years, which I wonder if that all contributed to the bc lump. I'm losing weight again now (going with the if once you fail, try try again motto) and this is what seems to be helping me this time around. I've made it more about lifestyle changes I can stick to vs what's needed for quick weight loss, slow and steady is the pace and as long as it goes the right direction that's enough. I know the cravings so I'm trying to find workarounds (I recently discovered CPK makes a gluten free cauliflower crust pizza!). It's been hard for me to exercise like others do with my work schedule but my plan - haven't done it fully yet - is to utilize my lunch breaks to work out at a nearby gym. Or maybe try morning workouts... I can't work out at night as I'm too exhausted from work. I dunno - still figuring it out. I agree with you it's a lot harder when we don't have as much leisure time!
Greenharbor lol love that you and Domino agree re: fasting.
Oh and for anyone who needs their Domino fix, she and Tucker and Kit Kat also have an Instagram page here that's all about them! My personal updates are on Facebook so Instagram is just to post cute pics of the paw family because they are so cute that I take a million pics of them (as you all know) so... https://www.instagram.com/pebbles_paw_family/
Tomorrow early morning I'm in surgery for an egg retrieval since tamoxifen messes with fertility and my husband and I want to at least keep that door open if we can. Wish us luck! Pls send good vibes, I'm a little nervous even though have been through surgery with the bc...
Feeling like Domino re: not wanting to get out from under the cozy covers... don't we all feel like this sometimes?
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Lupron and Zoladex are the same basically - they shut down the ovaries... So I think we will have the same anti-hormonal tx at the same age. I have a meating with my MO tommorrow and I think I will learn which AI she wants me to take. BUT I already have osteoporosis in my spine, the doctors say it's no wonder, since I'm tiny and have not been above BMI 20 my whole life (untill now, gained about 6 pounds during chemo, which made my MO very very happy)
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your approach to diet is admirable, really... I am sure I would not manage. My body seems to crave protein so much. But maybe it's just what it is used to. I am now restricting red meat, BUT my red meat is organic to the extreme and I can see the herd grazing from my window (and I live in a nature reserve). So I think I will just eat less, not cut it all. When I don't have meat during the day, I crave eggs for dinner, I could cry to eat an egg (or 3) 😁 I totally aggree with you that plant-based diet is the best way to go... I just wouldn't manage.
Like many here suggested, moderation will be the key for me. except for veggies. I have no problem with veggies and eat a lot of them every day and a bit of fruit. Problem is with the quality, I can grow only a fraction of what we need...
Regarding dairy, I am still to find any proof that low-fat yoghurt or kefir is bad for BC... Untill I find any, I think I will stick to it.
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Pebbles, if you need me, I am here. It is wonderful to work with your doctor, to find the best possible method of taking and being in compliance with medication. Always remember, it is not how you start something, it is how you finish that matters.
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Just stopping by to read everyone's posts and get my Domino fix. Hugs to all! I love this thread; it's informative and respectful. 💓
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Pebbles, I will be thinking of you tomorrow morning.
H8BC- I love your screen name! Welcome to this thread. Some days it is so hard to be positive and yesterday was one of those days for me. Today I am good and I hope you are too!
Welcome RCCaliMom. I have the same question, wondering if there is a way to tell if the AI is working. I guess if you don't get a recurrence you say it worked, but are there hormone blood tests that might be reassuring every now and then? I'll add this question to my growing list.
Take care everyone.
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