For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Faceforward- I freaked out the first day too and the ladies here calmed me down lol. It's a mixed bag like anything- some folks take with food, others like myself can take it on an empty stomach. I think the anxiety got to me, but once I realized what I was doing to myself, the SE's weren't that bad. I've been on it for about 3 mos now. Wishing you the best....
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Hey FaceForward,
Way to go on starting your Anastrozole today! Re food/no food, I've been taking it in the morning with breakfast. Stomach issues in the first few days (about 3 hours after taking the pill) were helped by eating saltines. That all went away.
The first week or so was headachy and flu-y but gradually I felt better. Now one month in, the remaining issue is fatigue, and I think that is slowly lifting as well. The medical team said things would improve over a 3-4 month period and to give it the old college try.
I am very not interested in going through all this cancer stuff again, so anything I can do to prevent recurrence is high on the list.
Good luck and keep us posted!
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Thanks for the info re: food w/pills. I'm allergic to a lot of things so I always worry when I take something new. I decided to take my pill this morning with food. I made some toast out of my favorite nut & grain bread and spread a little natural peanut butter on it. So far, so good and it's been long enough that I think I can rule out any sudden allergic reactions. Now I'll just stick to the plan and see what develops.
My MO has been pushing me to start my AI since before radiation. I pushed back on that because I didn't want to deal with both things at once. I've started seeing a bone specialist due to osteoarthritis in my DXA scan. From the beginning, he was anxious for me to get started on a bisphosphonate. I declined to do that right away also but we'll choose one of those and I'll get started on it in the next couple of weeks. I'm committed to doing this but I have to do it in a logical way that feels right to me. Starting multiple drugs at once doesn't fit that requirement. If I did end up having serious side effects and needed to switch a med, how would I know which one was the culprit? I really like and trust my doctors but they are doctors afterall and it's likely that everything they see will tend to need treatment sooner rather than later. I told both docs that, "When you're a hammer, everything you meet is a nail".
They both laughed and they totally understood that sentiment. I appreciate that they are very considerate & supportive of my worries and my choices. Can't imagine going thru this with a medical professional that I didn't like or trust. 0 -
FaceForward, just wanted you to know I started my anastrozole 8 days ago and I have been on alendronate for my osteoporosis for about 10 months now. I was scared when I started on the bisphosphonate but didn’t have a big issue. I feel a little wonky the next day, but nothing that keeps me down, I take it once a week. I was also very nervous about the anastrozole but I’m haven’t noticed anything. I’m achy but because I have arthritis everywhere isn’t any different than normal. If anything I feel better because I increased my walking from 3 to 5 miles and I think that has really helped. I also lost 15 lbs during chemo and have kept it off, which I think helps also. I hope all goes well for you.
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I ended up caving and starting the pills on the 6th, mainly because a friend of mine kept telling me to take them, as she many years ago stopped taking the pills due to side effects and now has a grim prognosis. Although it's not definitive that one led to the other, she doesn't want me to risk the same happening. I have had some aches and pains in my hips and a lot in my neck, not sure if that's my back and neck playing up, or it's caused by the pills! Worst thing is I just realised that I accidentally took two pills yesterday! Rather worried now whether I have caused myself some harm. I am going to mark each day on the blister packs to make sure it doesn't happen again.
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WorrythePooh- I've taken two within 10 minutes of each other. Tried calling at 1 AM for help, no one is available. Called pharmacy the next day, told them it obviously didn't kill me because I was alive to call. Pharmacist said to skip the next dose. Call your pharmacy tomorrow. Best of luck to you!
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FaceForward - I take my Anastrozole in the morning with various other pills I have to take (Vitamins, pills for other issues, etc.) and I have never really had a problem. I will say that once in a while, my stomach is upset if I don't eat within 30 minutes or so, but I don't know if it's the Anastrozole or something else that bothers me. I have been on it for almost 2 years.
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Thanks CindyNY! Unfortunately I only realised I had taken two the day before, after I already took my morning dose the next day! I did notice a lot more hot flushes that day so I am putting it down to that.
To make sure I don't do it again, I have taken all the blister packs out and written the days of the week with a permanent marker on the foil behind each tablet.
I have been feeling a bit depressed since I started taking the pills, so I am wondering if that is a common, or possible side effect? The other thing I have noticed since starting is more pain in the affected breast.
FaceForward, re your statement "Can't imagine going thru this with a medical professional that I didn't like or trust.", I have to say unfortunately I can now imagine it, as one of my doctors I find not very understanding and rather judgemental of any concerns I express, so I took to deciding not to ask about things that worry me. Which is why I am so grateful of this forum.0 -
Worry & FaceForward, I totally understand where you're coming from. I have been pawned off to my PS CNP who I don’t like or trust & to my MO CNP who I’ve never met, now they are my care providers! I also called to schedule my 1 year appointment with my BS for October as my schedule is tight and was told I couldn’t because my BS had to write a script for the appointment when I see her at my 6 month appointment which is in a month, what the he**. Then I’m told I’ll probably see her CNP for my 1 1/2 yr. appointment. I feel like a chess piece in the game with the DRs checking to see who can kick me the farthest of the board! They are supposed to be here for us, but I’m not sensing it. Then they wonder why we are anxious, stressed, fatigued, and depressed. How the he** are we to have QOL and find the new normal so we can move on from this disease when they are a contributing factor!
Anyway back to the original topic, I take anastrozole first thing in the morning with my other meds. Have been taking it for 5 months. My main issues are mood swings and anxiety with my hair starting to thin out. I started taking magnesium at night so I’ll se how that goes in the next couple of weeks.
Thanks for letting me vent!
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I take anastrozole at night with my statin after dinner. Vitamins in the morning. Right now only taking glucosamine and Vit C. Advil as needed. I really don't want to add to this list. SEs are minimal to me, I deal with them somedays better than others. Walking/exercise most definitely helps me with the stiffness. I do have hot flashes/sweats and my hair has thinned.
It's interesting reading all these topics, what everyone has been thru (the good, the bad, and the ugly!) and keeping up with the most recent studies and treatments, and reading the different supplements and other OTCs have helped some of you. Claritin for example.
The other day I was reading about bones and the myths of osteoporosis. The bone density test-which measures "density" not strength. I'd like to know if a patient has good muscle around their porous bones wouldn't that lower the risk of fracture? Also the test parameters are questionable. One could even get two different scores from different machine. I had a dexa right before diagnosis which showed osteoporosis in my hip and osteopenia in my spine. Last MO appt -actually had the NP who was OK-asked me to see a dentist first and then come back for the Prolia shot. My insurance company meanwhile denied the claim. So, since I'm doing some dental work now, I am not thinking about this until my next dexa which will be in December. That will also be a year and a 1/2 into taking this AI as well.
In my case so far this is what I got: re: bone drugs
1) It's not an approved treatment of osteoporosis as stated on my claim, even though the diagnosis from the MO on the claim was regarding the BC. I have a co-worker with severe osteo-and has had fractures in her spine. She received instant approval. It's apparently covered once you fracture.
2) It's not approved as a preventative for bone mets apparently either, unless you are metastatic. I only had a micro met in 1 SN.
It's all very confusing. I also keep a spreadsheet with some notes that I can refer back to. Some as simple as how long to expect a return call to make an appt. like more than 24 hrs, 48 hrs, with the all the Drs.. I freak over small details more than I should. My notes will help me remain calmer while waiting when peeps don't answer the phone and you can't schedule through the network portal. Gosh, sorry so long and didn't mean to veer off topic too much.
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yes, depression can be a SE. Mine was bad enough I changed AIs, now it's not a problem
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My very "bitchy" attitude got much better after a switch from anastrozole to letrozole. Everything set me off. Hair is definitely thinning more though. I'm just becoming the "hat lady."
I feel as if I've been more depressed than usual but I think a lot of it is that we have had such crumby weather. Arizona needs the rain and snow but we've had far too many rainy overcast days to suit me. I will not do well when I have to return to New England where my daughter is. Not asking for sympathy for this - I know it's been awful all over - but I do think it's kept me down this winter.
I always see my MO (every 6 months now) but have been seeing my BS's PA since my first exam after BS put the incision in for the brachytherapy. But I think she's great and both she and MO's PA return my calls promptly. BS's PA had a note on my chart within 6 hours of when I had my last mammogram.
I do hope those of you who feel dismissed can find another provider. Cancer is hard enough without having to struggle to get questions answered.
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Here is my regimen for what it's worth (I am on year 4 after 1 year tamoxifen):
Take at night
Take Vitamin D, Glucosamine, Calcium, Aspirin
I don't think anyone should be terribly worried about SEs short term. They might be annoying but are manageable. The real issue is long term hormone depletion. Bones, joints, mood, aging etc. That is harder to deal with and is up and down, with no easy answer. The Vitamins and bisphosphonates help. Some find switching among AIs helpful but if you have one that works for cancer prevention it may be worth considering that another might not work as well. You may be lucky and your body might really just adapt to the medication well. Everyone is different.
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BlueGirlRed - I believe breast cancer treatments have to be the worst hell to endure. We're stuck between a rock & a hard place. Dammed if we do & dammed if we don't. I certainly don't want cancer coming back so will take these AIs as a preventative. The wicked side effects of damaging my bones by giving me osteo, giving me a higher risk for getting diabetes, making me an emotional wreck, my hair thinning & falling out, etc. But I refuse to take the dangerous osteoporosis drugs & diabetes drugs with all their wicked side effects. I'm going to fight like hell to combat these awful side effects by recently joining a diabetes prevention class & starting bone resistant & strengthening exercises.
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Bad luck--
Prolia is really okay, as is Metformin...
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Badluck, I have been on fosomax for 9 months with little to no SE. Most treatments we endure can have devastating effect to bone health, I was already in full blown osteoporosis before DX and therefore was happy I had already started treatment with fosomax. I will see if it helped in a couple of months when I get my next DEXA scan, I’m hoping to have at least held the line or possibly increased bone. I think everyone is different, for me it is worth it
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ctmb--I also am wary of taking supplements. Of course with the AI Vitamin D and Calcium were recommended. After some research I decided to take a D3 supplement but not the Calcium (although I am trying to increase that through diet). What I was reading was that while Calcium supplements can improve bone density, they don't prevent bone fractures. And I think they can be overdone with potential heart problems. I remain unconvinced, although I haven't had a bone scan since last spring. And I've been reading about possible negative impacts on BC from dairy. I guess I remain a work in progress. . .
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RE: supplements
I have post-chemo neuropathy in my hands, and some in my feet. I found out from my MO's office that the usual absorption and uptake of a lot of nutritional elements is destroyed or impeded by chemotherapy (taxanes are known culprits)--quite a few amino acids, for instance, which help our neurological 'messaging' system. This deficit causes chemotherapy-induced peripheral neuropathy, or CIPN. This is sometimes helped by adding back, at a high level, those particular elements. In my case, the list of things to take to MAYBE help with my peripheral neuropathy includes Vitamin D, a B Complex, L-glutamine, and Alpha Lipoic Acid.
So, I'm choosing to consider this a restoration, not a 'supplement,' since I'm trying to get things back into my body that usually are absorbed, but are now depleted. Poison broke my system, so I have to try to mitigate the collateral damage!
I realize that this is an AI discussion thread, but in my case, managing my post-chemo body is part of my story.
The AI is causing me almost no discomfort. I already slept kind of badly, and it's no worse. I already had achy joints, and they're a bit stiffer. I have gained five pounds, but also was kind of celebratory about food after chemo ended, so that might be something to blame on gluttony, not on the AI. No mood problems except general fury about having to deal with cancer and the treatments, lol, and my mental health is really stable. I exercise about one hour daily, and it helps with physical and mental health. Stronger muscles = happier joints. Happier joints = happier human.
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Ladies - I was wondering if any of you were thinking of taking the 1mg Anastrozole every other day instead of a daily thing? Or can we cut them in half & only do a half every day? Does anyone know how long it stays in our system? These drugs are top on the list for being the nastiest when it comes to side effects. Also my oral surgeon is totally against me taking the Prolivia injections or any of the other osteo drugs that my OC wants me to endure while on AIs. He said the dangerous side effects are real & even years later in life after taking them, you can develop the jaw disease & holes in your mouth. No thanks! I'll take extra vitamin D & do the bone building & strengthening thing. I wonder how long it will take the drug industries & research to figure out what a big screw up it was to push these poisons on us & when they will come up with a safer & more effective way to combat these diseases. Are any of you also experiencing hair thinning/hair lose while taking AIs or tomaxaphen? I have really long hair that was once thick & now thin & Im ready to cut it
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Good day! Thank you for all the input to this board! I asked for a hormone test before beginning Anastrozole; waiting for results. I decided to do half a pill a day for about three weeks to see if any SE; none so far! Glad I did because prescription for 30 days as I don't see OC until 45 days! Will go to 1 day soon. Take in morning after eating breakfast. Definitely learned to be my own advocate. BC recommends D3 (5000). I do take calcium at night. I will check with my dentist about taking Fosamax as test revealed ostopenia. Because of DES and PCOS, sometimes debilatating and constant hot flashes/night sweats all my life unless I took hormones which lead to BC...... quality of life as my BS understood. Lexapro (5 mg) for stress, etc. and hot flashes every other day since it raised my blood pressure. Trying acupuncture and horrible tasting (ginger helps) Chinese herbs now. Keeping all of you in my thoughts and prayers! Again, thank you for all the input; I have learned a lot. WIthout AI, 36% of reoccurence; with AI 14%. I am 58 and mostly healthy!
Dx 8/27/18, ILC, Right, Stage IIB, ER+/PR+, HER2- Double Mastecomy 11/16/18 Failed Reconstruction Expanders Removed 1/2/19 (Happy New Year to Me!) No chemo and no radiation
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BadLuck I will stick with daily dosing of my Anastrozole. That's the dosage that's studied, and I'm choosing to follow the NCCN guidelines-informed, evidence-based-medicine oncologist recommendations for treatment of my cancer.
It's always a choice between benefits and risks, when we accept any treatment. You're absolutely right, the side effects and long-term costs to our bodies might be/probably are dangerous and worrisome. For me, having a higher chance of dying of cancer is a worse choice. My recurrence risk is cut in half by taking an AI daily. It moves me to a 90%-ish cure rate; a much lower recurrence risk, statistically, with the AI than without it. I'll deal with all of the collateral damage, and of course there are no guarantees. I have Zometa infusions every 6 months to hold off bone loss. Because I have a better shot at not dying from this cancer by doing so, I'll take my AI, daily, as recommended.
I have almost no noticeable side effects. A little bit of stiffness when I sit too long, and it goes away when I start moving. My thumb joints are weaker. That's really it.
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Hello, my companions on the anastrozole journey. I have not posted for a long time, but often read the comments. I was on letrozole for 9 months, and my med onc switched me to anastrozole for the past 3 months. I did not want to change, as I had heard so many people (on here and elsewhere) have pretty much the same side effects on any of the AI's. I'm 67, consistently guessed to look in my 50's, and healthy (prior to BC). I am a strong believer in exercise, and I fast-walk 3.5 to 4.5 miles at least 3 times a week, and do other stretching and pool exercises as well. I have had the usual side effects: bone/joint/muscle pain (muscle pain is worse on anastrozole), mild and tolerable hot flashes, hair loss, more depression (on Lexapro), "good days" physically followed by massive fatigue which takes a while to recover from, and 5 pounds of extra fat all collecting around the middle which I have not had before. This past week, my PCP sent me to ER to rule out DVT in my calf. I did not have DVT, but they did lab tests, and I had rhabdomyolysis! Other labs were abnormal also, for the first time in my life. The shocker was that my already high cholesterol on letrozone had gone from 268 two months ago to 341 when I was tested after the overnight stay in the hospital! I am an RN, and I am not reassured by all of this! I cannot be given a statin now that I have had the rhabdo, so a Mediterranean diet was recommended. I'll try it. I've also read some scholarly articles reviewing the cognitive decline which occurs on AI's ("across the board," per the NP at my med onc's office). Now, also, I see that it may lead to earlier Alzheimer's disease also. It seems the brain needs estrogen also. With AI's, I have a 5% risk of recurrence. Without, it's 10%. That was totally worth it to me until now. Now, I'm not so sure. I do not want to try the 3rd AI, exemestane. I see the med onc next Thursday, the 21st. I wonder if they no longer see you if you stop AI's? I AM sorry if I am discouraging any of you.
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HikingLady--that's interesting on the supplements. I just read so much about people taking tons of them (plus all of the articles about them having no proven benefit) but what you're saying makes sense. I'm sure we are starting from a deficit position so need some assistance just to get levels back to normal.
BadLuck--lots of us over on the Nov/Dec/Jan hormone therapy board are easing into the AI. It never occurred to me to try to cut them in half (my pills are really small!), although some have gone that route. I took mine every other day for about three weeks before starting full dose. I also haven't read about any MOs having a problem with the gentler on-ramp. I'm sure they're *much* more concerned that you eventually get to full dose and stay on it than when you do that.
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I’m diabetic & have taken metformin with Januvia is for many years with no side effects except weight loss! 👏Taco1946, thanks for sharing how letrozole has helped, Illadded it to my list of questions for my next oncology appt. next month.
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By the way, for anyone considering a statin, you may want to talk to your doctor about the side effects including how statins lower CoQ10 levels in the body (this may contribute to side effects).
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I do take a 20 mg statin and also take CoQ10 supplementally. Good cholesterol is now higher than bad - may ask to go on 10 mg. For achy joints, I use Arnica Montana and Arnica cream, well known homeopathic remedies. Never even seem to need an OTC pain reliever. Joints, especiallly fingers much better on weekends, as not on the computer all day.
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celia what statin are you on?
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Atorvastatin (Lipitor generic). In bloodwork last month, HDL (good cholesterol) 71, LDL 61, Total 171. Also take BP meds, for many years.
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Good morning! I’m posting about my 2 week break from anastrozole. I haven’t felt this well since pre diagnosis. The biggest thing is the lift from brain fog and getting good sleep. Went to orthopedic surgeon for unrelated issue I hadput on back burner. So turns out I have degenerative disk disease in cervical spine(I’m only 52!)very worried about starting letrozole and how this might make the problem worse. Any advice is appreciated!
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Cherryi3 Thanks for posting this update. My MO has told me that a lot of unpleasant AI side effects go away if you do a 're-booting' like yours, of a small vacation from that medication. I wish that for you, for sure. I don't have the brain fog nor sleep issues; I've been on Anastrozole for 5 months. I did for a few weeks, and then it absolutely got better.
Loss of bone density is the issue with AI's--a different thing from the degeneration, which I'm so sorry you have, on top of everything else. Not fair, for sure. Be sure to ask both your orthopedic surgeon and your oncologist how bisphosphonates affect degenerative disk disease, and how both bone density and the ddd can be treated to help you. I'm given a Zometa infusion every 6 months to combat further loss of bone density from my AI. I hope there's a good solution to keep you comfortable!
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