Doing Well on Aromatase Inhibitors (AIs)
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Hey Ingerp,
I read that the dairy issue for breast cancer is with high-fat dairy products. Am trying to go with skim milk, lo-fat yogurt, and really minimizing regular cheese.
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Roger that, egregious. Thanks.
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Hello, all on this thread, including newcomers Stop by here often to "read" but have not posted for awhile. Have been on Anastrozole for close to 2 years now. SEs seem to come and go, but better to keep the beast at bay. One encouraging note re: bones, dexascan in Nov 2016 prior to surgery & recent one in Jan 2019 showed no difference. Not particularly good at weight bearing exercise, so happy with this result. Hoping when I retire later this year, to work in more activity. I do take a high quality calcium supplement and vegan vit D3 to help with bones, as well as turmeric, glucosamine/chondroitin/msm and omegas to help with joints, etc.
HikingLady - Would you be able to share info you received on the ways metastasis presents and where/what symptoms to notice? You are fortunate to have had someone provide this info. PM me, if you wish.
Happy St Patrick's Day tomorrow!
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Celia—what is your “high quality calcium supplement?” I’m debating starting one and would appreciate some input from someone who knows what they’re talking about.
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Ingerp - Not sure if I qualify as knowing what I am talking about, but thanks for the complement. Calcium info (from label): New Chapter Bone Strength (take care trademarked), slim tabs, Plant-Sourced Whole-Food Calcium (not Limestone), gluten free, 100% vegetarian, no artificial flavors or colors. Also states: Slow and Steady Release Calcium Formula with Magnesium, also has D3 and K2. Please PM me if you need more info. I have been taking this supplement for many years now.
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Thanks, Celia. I really appreciate it.
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posted this on the Femara board and wanted to post here too:
Wanted to mention to the group two things:
1 If you do a general search on this site on "ASCO" the acronym for American Society of Clinical Oncology, you will find a lot of info ASCO has put out about many topics we've talked about on this board - protocols, vitamins, etc. Also,
2. The ASCO's website Cancer.net has worksheets and info on what a survivor's written history and future "post-treatment" treatment plan should look like and info on the level of post-treatment care we should be receiving. Our MOs (who likely all belong to ASCO) should all be using these! I'm taking a copy in to my next appt and asking my team to fill one out. It sounds like a lot of after care falls to our "regular" doctors - there's info that would benefit them as well.
LET'S BE GOOD ADVOCATES FOR OUR HEALTH!!
Rock on Ladies,
Lanne
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So glad I found this thread. I just finished chemo about 3 weeks ago and met with my oncologist today. He suggested I have my ovaries removed and start Arimedex in one month. I knew I’d be taking tamoxifen or Arimidex and have been reading everything I can on both the last few months and getting myself so worried about se. This thread gives me a great deal of hope that I can do this. My sisters best friend has been on Arimidex for 4 years and said the se are very minimal and nothing that would make her want to stop taking it, that also gives me hope
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Mnsotamom, welcome! I’m glad you found us. While some women have severe side effects from an AI or tamoxifen, many don’t. I have been on anastrazole (generic Arimidex) for 6 months. The lack of estrogen did cause some monster hot flashes that were aggravating my preexisting insomnia. My MO did suggest trying a low dose of Effexor, an antidepressant used also for anxiety and panic issues. It worked on the hot flashes almost immediately. My skin has been drier, so I switched up my skin care products.You CAN do this!
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Mnsotamom--a bunch of us started at a lower dose for a while to let our bodies adjust, and it seems to help lessen the severity of the SEs. Many of us cleared it first with our MOs but some did not. My pill is tiny so I took one every other day for about three weeks before going up to the full dose. Some with larger pills (I think Tamoxifen is 20 mg vs. the 1 mg of Anastrozole) take half a dose a day for a while. I've been on it full-strength for about four months and I can't say the SEs have been nothing but they have been manageable.
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mnsotamom74 Glad you're joining us, sorry for why! Do you have to have your ovaries removed because of a gene that puts you at further risk? Ugh, sorry about more surgery.
Regarding starting slowly on the AI dosage: My MO advised against it for me. He said that the benefit, crucial for my TX plan, needed to get started ASAP; not to put it off. He wanted to have me start it when I was reasonably recovered after chemo; a few weeks later. He further noted that the side effects usually diminish with time, so why make that part take longer? In other words, he saw no clinically significant advantages in the body of research to starting with a lower dose, and some disadvantages. For me, starting with the normal dosage worked out just fine.
I felt more nervous about starting my AI than was warranted---for me, it is now barely noticeable. I was a little sleepy for a week, and that went away after 2-3 weeks. I was a little stiff after a few weeks, and with daily exercise, I've noticed that it's better and barely noticeable--I'm just a bit creaky when I stand up after sitting a long time. I'd call it somewhat worse than the arthritis stiffness I already had, but not a ton worse. No hair thinning and no cognitive issues. I have almost imperceptible and very infrequent hot flashes that are more like 'warm' flashes. I take it in the morning right after breakfast. I'm 61. Each body seems to have a different experience with all of this.
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Mnsotamom- Honestly, I had to stop reading the comments about bad SE because I when I started I was petrified my life was going to change immediately. I have only been on Arimidex for 2.5 weeks but I haven't experienced any SE except... It might take me about 10 more minutes to fall asleep at night. This is the perspective of a newbie but sometimes I think that's a good perspective.
Who knows what I will experience in the months and years to come but I know a couple of things:
I will exercise everyday! I think that's part of the formula to feeling good.
I will not be petrified of this med until I have good reason to be and even then I will give the SEs a chance to subside before giving up!
BYW- I only know 2 things but I will add to the list as I figure them out!
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BikerChik, This is so encouraging to me. I am starting on the Arimidex journey with you on April 9 and am petrified. I will be 85 that day and, if I can get through no recurrence and the SEs, will be 90 when I stop. I’m terrified of everything from joint pain, to emotionally stuff, depression,anxiety which I already have enough of, to thinning hair, which my MO assures me will happen. I,too, will exercise every day, but it’s all a great unknown. Thank you for your perspective and for adding to the list, though I hope it stays the same as it is now.
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Hang in there KeyWestFan! I am a bit younger than you but you sound young at heart and attitude is part of the fight. Keep your body moving. Don't be petrified until you really know how it is effecting you because it could be minimal and then you will look back and wonder why you wasted so much energy on worry. My fingers are crossed for you.
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I started on arimidex about 5 weeks post taxol, the week of my 71st birthday. Like lots of the journey, the anticipation and waiting can sometimes be worse than just jumping in.
I'd remind you newbies of three things - 1). most people who don't have SE's don't post. 2). no one seems to able to predict who or why one gets particular SE's from which drug (although don't let your MO tell you you aren't having any), and 3). there are different "types" of AI's. I started on arimidex and switched to femora after about 6 months. My "bitchiness" definitely got better with the switch although my head hair is thinning. Hot flashes were bad with both but are now controlled with medication (which was a replacement for one I was taking, not an addition).
Keep talking to your MO to find the AI that makes you most comfortable. Experiment with the time of day you take it (although my MO did say to be consistent once I decided). My joint pain isn't any worse than before and I still have all my knees, shoulders, etc. that many my age have had replaced. Moving does help. Although I haven't made as many diet changes as many on these forums, I'm five pounds lighter than before BC.
Keywestfan - what an inspiration you are to me! You go girl! You'll be fine.
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Mnsotamom- like BikerChik, I read the bad SE's on the other forum, and had to stop reading it - felt like I was looking for trouble - or maybe an excuse not to take it. I hadn't started the AI and felt fearful.
Now I'm in over a year on Anestrozole and post on both forums. You'll get through this, just as you did with BC diagnosis, one step at a time. Best wishes to you!
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Mnsotamom, I’m had the same experience as Bikerchik and CindyNY. When I was told I would need to start taking an AI I went to the other forum and was scared to death about taking anastrozole. Luckily someone mentioned this forum and I started reading both. I got the courage to begin taking the med, on week 4, and really haven’t had any significant SE’s. Had an issue with sleeping, and people mentioned melatonin and magnesium supplements. I tried Melatonin and took a couple of days but worked. I have aches, but I have had significant issues due to arthritis so just more of the same. I think it is best to read both sites and to stay aware of possible issues but don’t head into this thinking the worst, just be aware.
Thanks to all on BC.org, I don’t know what I would have done without this site. I’m now just a little over 7 months from diagnosis date and have been through so much, as all women on this site, in such a short time. Having people who have been through this be so caring and willing to share their experiences are invaluable.
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Hi All,
So happy to see the positive support and words of encouragement. This is the primary reason I started this thread.
It'll be two years this May since I started name brand Arimidex. The SEs are still manageable, and it's true that not everyone gets horrific side effects. I send love out to those that do.
I exercise regularly which really helps. I have osteoporosis in my hip not necessarily related to the Arimidex so I get Prolia injections every 6 months. Again, read about the possible SEs and made myself crazy. Fortunately, the injections are fine and I don't notice any SEs at all.
For the joint discomfort my internist prescribed Gabapentin which makes my joint discomfort very manageable. I take 100 mg at night. Didn't want to take another drug, but it helps so much that it's worth it for me
Sending gentle hugs and encouragement to all.
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Hi, all. Think I posted here that my MO prescribed Cloniden as an alternative to the Effexor 37 mg I'd been taking for hot flashes, about 5 weeks ago.
I started the Cloniden and took a week or so to taper off the Effexor. Although the GI symptoms I'd been having improved, the hot flashes became more intense and more frequent. So I added back Effexor 25 mg every other day.
This seems to be working pretty well. Hot flashes still 3-4 times a day, but shorter and less severe. For what it's worth, I'm 55 and was dealing with some of this pre-Arimidex.
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Hi, all. Think I posted here that my MO prescribed Cloniden as an alternative to the Effexor 37 mg I'd been taking for hot flashes, about 5 weeks ago.
I started the Cloniden and took a week or so to taper off the Effexor. Although the GI symptoms I'd been having improved, the hot flashes became more intense and more frequent. So I added back Effexor 25 mg every other day.
This seems to be working pretty well. Hot flashes still 3-4 times a day, but shorter and less severe. For what it's worth, I'm 55 and was dealing with some of this pre-Arimidex.
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Hi all,
Checking in after almost 7 months on Arimidex (Anastrozole); the side effects took a few months to kick in. Mostly stiffness in my hands and joints that it gets better as you start moving, and morning fatigue. I got my ovaries removed last summer, and started Arimidex a few weeks later. I was 48 at the time. Chemo had already put me in quasi-menopause with hot flashes, no period, dryness.
I was very concerned about moods and PMS-like symptoms, but in that front I am doing very well. That being said, I am proactive on taking care of moods and mental health. I talked to a psychiatrist at my cancer center and found that very useful. On his recommendation, I have been taking Effexor 37mg, extended release -this is important. I joined a meditation group at my cancer center. I am loving and I find that it is helping me greatly. I also work out intensely, several days a week. I got good help around the house, which reduces my level of stress. I will be stopping the Effexor in the next few months.
Regarding hot flashes, I found they correlate with stress and moods, and with being too warm. So I wear lighter clothes and layers, and meditation and exercise help lower my stress.
Insomnia: my sleep is lighter but I am doing great with regular sleep-hygiene measures like avoiding screens and internet after 9pm and sleeping with a lighter blanket and the window a crack open.
This is definitely a new normal when compared with my pre-cancer self, and I feel a bit older and more fatigued. I am working on stepping up the exercise levels to where I was pre-cancer, and the more I exercise, the better I feel. All in all, I am feeling great and getting better with every passing month. Recently, an oncologist told me to give at least a year for things to stabilize. There is definitely a learning curve but I am confident I will be quasi normal soon.
Best
LaughingGull
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I agree that the anticipation and dread can be bad, to the point that it was a real relief to start with the AIs, and see that I was not dropping dead nor drowning in desperation right away. I was also euphoric the first few weeks, cause I had zero side effects...well, the side effects are real and took a while to kick in. But I also had time to adapt and learn how to best manage them to feel fine.
This is my limited experience.
Best to all,
LaughingGull
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Hey ... As of today, I have 2 years, 11 months, and 28 days left on Aromasin.
One day at a time.
VIcky
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I hear ya. Coming on two years May 9.
Strength to all!
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I'm closing in on 7 weeks......
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18 months for me!
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May 1st will be one year done! 6 to go.
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It's great to read everyone's posts, I love the upbeat feel in this thread, it helps keep me going at this early stage.
I've been taking the AIs for 6 weeks, for me the SEs are very minimal compared to what I expected. I get hot flushes, sleeplessness, and have been sometimes waking up feeling depressed, but I find once I get up and get on with my usual routine I don't feel depressed during the day. I might be perhaps a bit more emotional than usual...according to my husband! Every time I get annoyed with him he says it's those pills doing this to you, so I have had to ask him not to say that, as it is not very encouraging.
I've been having a new kind of tooth pain different from any mild toothache I've had before. I've read this may be a side effect, but I am actually relieved if it is just caused by the pills, and not by tooth decay!0 -
hello, hoping for some insight. I have been on anastrozole for 7 weeks and up until last week been feeling good. Last week I started to notice an increase in joint pain, I have arthritis but this is worse and affecting all joints. Just wondering if this will eventually get better? I don’t want to jump into another med without giving this a chance to get better so looking for others experience. Thanks
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my only se is insomnia and dr says its not a se. Ok so its a result of having no estrogen from meds. 2 more doses/months of faslodex till i drop that and continue with just letrezole.
Maybe i willl sleep better then though i doubt it cause 6 yrs sgo i quit letrezole due to insomnia and fibromyalgia. None of that this time. Feeling pretty good if ican get a nap in when needed.
Gailmary
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