Doing Well on Aromatase Inhibitors (AIs)
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key west, whenever there is a loss it brings back all former ones, so no surprise about how you are feeling. big hugs! And when you first face all this it takes awhile to stabilize the ground under our feet.
My mother was first diagnosed at 94 with breast cancer and I was so angry that she got it at her age. Then my son said to me that at least she was okay for 94 years. Made me feel a lot better. The only treatment she had was lumpectomy with a local. It did recur two years later as it was grade 3 but it was not what caused her death.
But no matter what or when it is a lot to wrap our heads around. And with a prior cancer you revisit everything.
Regarding magnesium I have read it is absorbed well through the skin. I have found some natural deodorants that are magnesium based. Thought worth a try
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bennybear,
Thank you so much for your understanding. I think the ground is stabilizing a bit and I know that I react with extreme anxiety to losses, then come back and do well emotionally. Let’s hope so this time. Thank you also for the magnesium tip.
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Stella - I definitely saw a very positive mood change when I went from arimidex to femora. Finally feel as if the hot flashes are under control - we'll see how I feel in August in Phoenix. Next round of mammograms coming up - always ups my anxiety.
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Hi all, was hoping someone had a suggestion for me. I started taking anastrozole several weeks ago and haven't had to many issues but one is becoming problematic, insomnia. I am on several other meds so perhaps a combination of those could also be causing issues. (Fosomax, Zyrtec, herceptin and Perjeta infusions every three weeks, and pain meds for arthritis when needed).
I have always had some issues with sleeping but this is much worse. I started taking 5mg of melatonin, I get to sleep within 30 to 60 minites but then wake up several hours later. I'm up for 3 or 4 hrs then can get another couple hrs of fitful rest. I only drink 8 oz green tea in AM and no other caffeine. I walk 5 miles a day and don't take naps. I use to take over the counter sleep aids but have same result. Any thoughts or suggestions would be much appreciated.
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When in the day are you taking it? I must say losing sleep was my biggest concern when I started but it hasn't been an issue at all. I take mine midday, but I know some women take it in the morning. And not sure if it'll help, but sometimes a Claritin helps me sleep. I know they're non-drowsy, but I swear they help me sleep just a little bit better without going for a full-blown Benadryl.
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mactaz, i echo ingerp. When in the day are you taking your meds? Quite by accident I discovered that aromasin was causing my insomnia and switching to the morning fixed it. (It’s back now but that’s a whole other story.) anyway I recommend trying different options for taking your meds to see if you can get to a schedule that works for you. I totally understand the angst of adding more in attempts to sleep. Your exercise routine sounds great.
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thanks to both, I do take the anastrozole first thing in the morning when I get up. I was worried about the insomnia.
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MACTAZ I am 61 years old, and I need much less sleep since menopause. I take Anastrozole in the morning. I fall asleep just fine, rather early, and I wake up a few times, but can go back to sleep through the night. However, at 4 or 5 a.m I'm awake for the day. This is just how my brain and body are, and I can't blame this on my AI, since it's been the case for quite a few years. Good luck solving this.
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MACTA, have you tried magnesium glycinate (800 mg total daily) to help with your insomnia? I take it in the evening & it has helped me tremendously (I also had insomnia when taking anastrozole). Be sure to take glycinate because it will not cause the gastric issues that result from some other forms of magnesium.If you have trouble finding it in your local stores, you can get it on Amazon. Good luck!
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Thank you JKL2017, that does sound promising. I am going to check with my OC as I'm on so many medications right now I want to ensure there isn't any interactions. Appreciate your help. Will let you know what I find out and if it works.
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MACTAZ- I too had insomnia, but after about 3 months it disapated. A lot of my SEs disapated around the 3-4 month mark. If you can tollerate it that long yours might too. Best of luck to you!
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Thanks CindyNY. My OC said was okay to try magnesium glycinate as suggested by JKL although last night I took 7.5 mg melatonin and sleep through the night. I was really tired but it feeling much better this AM. I really haven’t had too many issues with Anastrozile except for sleep. Thanks to all for your suggestions. I so much appreciate the support and help. Hugs to all.
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I have been on anastrozole for over five years now. I don't have any significant side effects to report, a few minor things that I experienced at the beginning resolved on their own by month 5 or 6th. No new side effects five years later, just dry skin and some vaginal dryness that can be taken care of with proper moisturizing.
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Muska,
This is so encouraging, because I am so scared and pill phobic. Thank you
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muska that is really encouraging! I've been doing okay (about 3.5 months in) but wouldn't mind if some of the stiffness/random little pains stopped. I'm curious how much longer you'll be on it?
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I am not sure how long I will stay on it. Probably 10 years? I haven't discussed it with my MO yet because I am considered high risk for recurrence so I assume she will want me on an AI for as long as it is supported by most recent research.
Edited to add: I had more stiffness at the beginning than I have now. No pains at all now. No insomnia. Best advice I can give, keep moving and exercise regularly, that helps with everything AI side effects including.
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Awesome, muska. All of that really does make the future look a little brighter. Thanks for checking in!!
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Thanks taco1946, my mood swings are my greatest concern as my hubby ends up taking the brunt of my reactions and he doesn't deserve it, my reactions are for things that have nothing to do with him, but me venting or him being with me. I see my MOs CNP for my first 6 month follow up a month from now. I'm apprehensive about seeing the CNP as I haven't had a positive experience with my PS CNP. I have concerns with my DRs passing me off to to their CNP when I have only talked with them, my DRs twice- my initial consultation & the day of surgery and now the CNP is to be my care provider. I've never met them and I'm supposed to have complete faith in them, not hardly! To sum it up I'm probably feeling abandoned when I have a boat load of questions and I'm forced to trust the CNP! Maybe I'm stressing myself for no reason or being over sensitive,are any of you seeing your MO, PS, RO, or BS CNP instead of your DR.?
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Stellawt57 I certainly get what you're saying--we want the BEST and most knowledgeable care provider as we go through cancer treatment. In fact, my PS doesn't have any other care provider except other doctors; he's assisted by MA's who did the saline injections through my TE months.
My daughter is an NP, and she got her MSN at Yale, where they've done a lot of research about NP practice compared with MD. She works in a county clinic near LA, as a family practice primary care provider. Interesting statistics she shared with me from Yale's research: after 5 years of practice, the accuracy of all treatment of NP's is equivalent to MD's. As in, correct screening orders, diagnosis and treatment decisions, etc. MD training takes longer, and is more thorough. Of COURSE, including residency. But, it turns out, experience and mentoring by specialist MD's eventually have an NP caught up on diagnosis and all care decisions to be equivalent. Yale has studied this a lot. Once I knew this, it helped me accept NPs as care providers, especially if they have 10 years experience.
PA's have narrow and deep knowledge. In their practice, they must work under a physician. APRN training is more extensive and broader, and the specialties are building on an RN starting point. NPs have autonomy as care providers. So, I accept a PA as a surgical assistant care provider to my surgeon. I accept an NP who's in a specific specialty and has been mentored by MD's to acquire specific certification (family practice, or pediatric, or psych, etc.)
I hear your frustration, though. We get to be cogs, and not seeing the provider you choose is one more thing you aren't having a choice about, just like all of this. GRRRR.
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Stellaw57- I believe I'll be swapping out between the MO and her NP. Every 6 months see one, then the other the next 6 months. In early July I'll be back to the MO. If you're not ok with seeing the CNP ask if you can stay w the MO only. Worse they can do is say no, and give you an explanation as to why. Best of luck!
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I have a MO or NP visit every other time I get Herceptin, so every six weeks. It pretty much alternates between the MO and the NP. I've never had any issues seeing the NP--she's always been able to answer my questions, <obviously> has complete access to my medical records and treatment plan, and even wrote my AI prescription. Stella you might give the NP a chance, and if you're not satisfied, then request a visit with the MD.
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Just wanted to post here that after much stress and anxiety over starting an AI, I went with Anastrozole and am doing fine. Whew! I'm only 2 weeks in so I realize things may change significantly but so far all SE's are minor and totally manageable. I've had no insomnia, nausea, or weight gain. I already had hair thinning due to thyroid issues but nothing new or increase noticed with that. I had a total of 2 headaches but I believe that may have been sinus related. I have a few aches and pains that seem to move around but mostly occur in my left foot (previous break there), my elbows and my shoulders. At times, I stand up a little stiffly but once I start moving around, poof! It's all gone. Twice in the first week, my right hand cramped up pretty significantly but was gone in 30 seconds. That hasn't happened since. No hot flashes at all. My face has flushed occasionally but lasts no more than 2 to 3 mins tops and hasn't happened at all the past week. That's It! I take my pill in the morning with a Claritin and a small amount of food. Usually something like a slice of toast w/peanut butter, a hard boiled egg, cup of yogurt, etc. I stay as hydrated as possible and I move as much as I can. I do stretches a lot. I try to get in a walk whenever possible. Weather is breaking here so I will be increasing that too. When I can't walk, I do stairs. What is unexpected for me is that I actually feel better than I have in the entire last year - even pre-diagnosis. My energy is up. My mood is up. All brain fog is gone. I was feeling so sluggish before I found out I had BC. I'm convinced my body knew it even if I didn't. I feel I owe much of my positive experience with AI's to those of you here on these various discussion boards. All the encouragement, tips, tricks, etc., that I received here has been invaluable. THANK YOU ALL! Now if I can only have as few se's with my upcoming bisphosphonate choice.
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What a great post, FaceForward!! It's always encouraging to read about women who are tolerating AIs well.
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Hey FaceForward,
Good news about a smooth start on the AI - hope you are able to enjoy your life in the months ahead!
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FaceForward, great to hear your initial start is going well! My initial SEs have diminished or disappeared!
HikingLady, thanks for your input, I certainly don’t intend to upset or insult you or your family, my apology! I haven’t had positive experiences with the one I’ve seen, I know I need to give all CNPs a fair chance, but I’m struggling with it. CindyNY & Ingerp, thanks for letting me know how things go. My medical providers don’t let me know what the normal protocol is. This is all so new to me (5 months from surgery) and will have my first follow up appts. with my BS & MO CNP next month. I have asked to see my MO instead of the CNP, but was told no as that’s not how it goes and things have to go as usual for all patients! Evidently veering of the beatin’ isn’t acceptable, interesting. I’ve decided if I have to see my BSs CNP in the future as I’ve been told will happen, I’m going to go to my GP instead as I have a great rapport with her & she’s aware of my BC as well as other things I’m going through. Sharing your experiences & knowledge is so valuable for me, thanks!
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Stellawt57 Oh heavens, I am not insulted at all. This forum is a safe place to discuss all of our challenges. I was just sharing my experience. On my journey, I definitely want the absolutely most knowledgeable person for every intervention. I do happen to have two RN's, one NP and an MD in my family. We talk a lot about scope of practice and knowledge and skill sets and how they vary in medicine. You should get to see the provider you are the most comfortable with, always, no question.
I had a surgical PA see me once for a follow-up appointment after breast surgery. Otherwise, only MD's for surgeons and oncology consults. I wouldn't have wanted anything except my actual MD Oncologist to guide me through treatment and inform me about all the choices and risks along the way. He's an excellent communicator, and I trusted his very deep knowledge and experience completely.
My oncologist's clinic offered something called Survivorship Counseling, about 1 month after PFC. This was a one-on-one, hour-long counseling session with an oncological Physician's Assistant. She sees patients just like an oncologist does, although she hasn't been a provider for me. Anyway, she was absolutely great. She gave me a solid hour of information, and answered all my questions. The general topic was how to move forward, what to watch for (recurrence symptoms and signs), and how to live in a way that reduces my risk of any recurrence of my cancer. Specifically diet, exercise, mental health, social engagement, alcohol use, and management of all side effects current and future.
Honestly, the first thing I asked her was how I was going to live with this shadow and terror of recurrence from now on. She was very calming, and told me all the positive aspects and good statistical probabilities about my treatment plan. Basically, by giving me a lot of information and reminding me of how I can help my own statistical odds by making specific choices, she calmed me down and made me feel more hopeful and as if I had some tools to manage moving forward.
We had a long discussion about my specific diagnosis (grade 3 tumor makes my diagnosis especially icky) and why AI is so important in my treatment plan, and how we'll manage any issues that arise related to this medication.
She taught me about which things are shown to be beneficial in reducing our recurrence of a breast cancer. In my case, a 'recurrence' would be probably metastasis and instantly Stage IV. I've had a BMX, so I have an extremely low risk of a new breast cancer or any breast tissue cancer, but there's a small possibility.
Examples of what she said will lower my risk of recurrence: 5 hours of exercise per week, fewer than 4 alcoholic drinks per week, eat cured meats only infrequently (=maybe a few times a year), be aware of all the ways that metastasis presents and where, and what symptoms to notice, realize that many metastatic breast cancers can be successfully treated to extend life and continue good quality of life, aim to have a normal BMI (oops, I could lose 15 pounds and be a lot better on that one). I asked: should I become a vegan? She said: We have no evidence that it prevents breast cancer recurrences, although vegans have a slightly lower risk of colorectal cancers than meat-eaters.
She summarized all current research and conclusions about all this, and also discussed all aspects of my AI medication and its benefits and risks. This seemed like a great way to fill a gap. There's no way an MD is going to sit for an hour with a patient, and this PA had every bit of necessary knowledge and interpersonal skills and experience to fill this role really well. I needed a lot of facts, had a lot of questions, and the idea was to empower the patient, going forward, to manage all aspects of breast cancer and how it affects us in many ways.
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HikingLady it appears you have an outstanding PA, nice. I have a Survivorship Plan appt. at my cancer center with the oncology navigator & cancer social worker and was told to plan for 1/2 hr appt. This appt. is right before my oncology appt., next is my appt. with my BS, then I end my day with an appt. with the PS. I’ve started my list of questions for each appt. with a few repeat questions. I read an article discussing topics to cover when developing a survivorship plan and your list covers all of them. I also have that some that pertain to my situation.
I’ve adopted Rachel Platten’s “Fight Song” as my motivator, it’s usually playing when I listen to the radio as I ride my bike. As we have a lot of fight left in us!
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Hiking—I liked your list of things to do to prevent recurrence. All of us here read so much about what’s good, what’s bad, how that sometimes changes over time. It can all be a bit much so a concise list that actually isn’t very long is welcome. If you remember anything else you were told in that regard, please share.
(FWIW—my latest question is about dairy. Or maybe more specifically the hormones in some dairy? I elected not to take a Calcium supplement but have tried to increase my milk/cheese intake. But is it true maybe dairy is not so great for us? And please don’t tell me about leafy greens. I’m better than I used to be about veggies but they’ll never be a big part of my diet.
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Nutrition
My oncologist gave me nutritional guidelines along with prescribing my AI. It was a package deal: Take your AI, and exercise 5 hrs a week, and eat well, as your complete treatment plan going forward. I will summarize what I've been taught, and what I've learned from reading several books about nutrition. Be sure to consult with your own doctors. This is not advice, just my experience that I'm sharing. I'm not a doctor. I don't even play one on TV.
We should definitely avoid the added hormones in dairy, and the label will say rBST-free. It's now the industry standard; hard to find the bad kind any more. I depend on dairy as one of my protein mainstays.
I limit intake of soy-based protein like tofu because of ER+ cancer.
I was told to limit intake of cured meats, and to limit alcohol to fewer than 4 drinks per week; both are associated with breast cancer risk. Keep Body Mass Index in normal range.
I eat more or less according to the Zone Diet (developed first by Barry Sears, and it's similar to the newer South Beach Diet): lots of complex carbs, protein at every meal, avoid Simple Carbs and eat high-glycemic-index foods rarely, or with protein if I eat them. Lots of research associates good nutrition with a healthy immune system, which can then fight off cancer better. I try to limit Simple Carbohydrates (white flour, added sugar, alcohol, soda, white rice, pasta) and eat a wide variety of Complex Carbs (whole grains and all fruits and vegetables), and eat protein every time I eat. I try to eat 2 small snacks between my 3 meals--this keeps metabolism ramped up. Stabilizing blood sugar (no huge highs from added sugar, no lows from skipping meals) is better for our immune system.
The Zone Diet was developed to support diabetes, but it also makes nutritional good sense, and two of my doctors have recommended this type of eating to me.
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Thanks, Hiking. I think I’m basically on board with just about everything in your post. Good to know I don’t have to be afraid of dairy. And that some carbs are okay. I know I could do better on the variety—I tend to settle into a pattern and not change it much through a typical week.
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