For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Hi Mini1 - I couldn't agree more about Anastrozole in terms of sleeplessness and sad mood. I feel like I have no threshold for tears any more - essentially anything is a trigger. That's not easy at work! And I just can't fall asleep. These are SE with taking only every other day so far. I started on the Lethrozole and took it from Nov - May. That turned me into a bossy aggressive and antigonized XXXXX. So my Onc said take a month off and start the Anastrozole at every other day. So June- to end of July and I'm very sad, thinking sad thoughts and crying several times a day. (the tears are not related to low blood sugar either which I tested just in case). He's suggesting a low dose antidepressant. I can see the logic there but honestly how many SE will that bring to the table?
I'd love to hear advice from those who have added an antidepressant.
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Atomicblond, I hear you with the emotional roller coaster! I experienced frustration, anxiety, mood swings from one extreme to another, and sadness with tears at the drop of a pin. I also became an agitated irate bitty! I think all was magnified due to the lack of sleep. At my 6 month checkup myMO NP wanted to prescribe an antidepressant, but I said no more meds that could lead to additional SE. I had done a search through my center & decided to go to an Integrative Dr. I also looked into the three on staff & decided who I wanted to see. She specializes in treating cancer patients & those with arthritis. The referral was made and I’m very happy with the course of intervention we created. I do acupuncture, take magnesium Natural Calm, magnesium glycinate & liquid bioactive B12 for the emotional roller coaster. It also helps to talk with her while she sets the needles to share how I’m feeling and what’s going on from day to day and now week to week! She’s great, totally appreciate her. I also take curcumin for joint pain from my arthritis that I had prior to dx, but intensified when I started the anastrozole. Lastly I take melatonin before bed to help with the insomnia. Hope this gives you some ideas.
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I've taken a mild anti-depressant and anti seizure medication for years following an intracerebral hematoma. MO switched me from nortriptiline to venlaxime about 6 months into AI's. And the hot flashes went away (and at 72 that's no big deal!) I was on much more of an emotional roller coaster with anastrozole than femora and it sure seems as if no one can figure out why the SE's effect us differently.
So glad a more integrative approach is working for you, Stella. I have a one-on-one relationship like you describe with your actupuncturist with my masseuse and she has listened and cared for me through so many rough patches.
I know many have also made significant diet changes but like PotomacPeggy, I didn't. I had already had two orthopedic procedures before BC and just had a total knee done although I think that is MUCH more a function of OLD than AI's.
I know it's a small thing but hydrate, hydrate, hydrate, especially during the warmer months. I sure am missing regular exercise right now too.
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Atomicblond, I cry every day, sometimes several times a day. I haven't attributed it to the Arimidex until now. I thought it was because the world is in such a mess. I usually cry while I'm reading the headlines on my computer. I've always been a sad mopey person, and I don't think I'm any more so now. I've been on Arimidex for 4 years and my 5 years will be up next June. I have taken myself off for 3 weeks to see if my shoulder pain goes away. It has decreased, but still not much relieved. I'm due to go back on it this coming Saturday. I was thinking of bailing on it, but I'm feeling superstitious.
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Stellawt57- thank you so much for reminding that accupuncture may help! I have a gal who I haven’t seen since this whole thing started last year - time to refresh that relationship! I will also up my magnesium, I also use cucurmin and B12. The melatonin I need to exercise more routine there - by the time I fully realize I need to take it, it’s already so late that I’m afraid I’ll be hung over from it the next morning! I like sleep assure brand best - melatonin plus velarian type herbal mix so you don’t pop back out during the night. I agree re antiD about no more SE too and will think long and hard before I start - if I start. Finally yes I agree that time spent talking helps - and my lymphedema message therapist is angel. I am so grateful for the help - it’s all around me - that I am often overcome by the sense of grace. I’m sure you know what I mean!
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Thank you JaneQPoppy - I’m glad you’re in year 4 and continue to tolerate it! That gives me hope! Good luck with your shoulder! I love my message therapist who I only met because of the threat of lymphedema. She works on all areas for me including ‘softening’ my reconstituted ‘girls’ and helped on the burning feet. Maybe try that
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Taco1946 - thank you for the venlaxine comment - that’s what the onc is recommending. I’m glad to hear it helped you. I’m hoping to get essentially a micro dose and go from there while keeping an eye on my mood. I’m still shaking my head at how big an impact the letrozole had on my personality before I actually detected it. The Ai start coincided with going back to work so it was hard to untangle what was the stress of returning to work from the SE of the AI. So I am actually grateful the tearfulness is so obvious with the anastrozole. At least I caught the SE faster this time! I’m a self aware emotionally sturdy woman normally. My way of saying, all this is really head spinning, this new reality
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I just started taking a liquid calcium before bed as I was struggling taking the pills. It has 300mg of magnesium
Blue bonnet calcium mag and a little d3 I add a few drops of k2 as well take one tbs before bed. Stopped my leg aches and I slept better than ever
It has 600 mg of calcium. So Ive decided to just take
My new chapter bone strenghth in morning which only has @50 mg of mag.
And the liquid before bed
I take my arimidex in morning with 1000-2000 mg of D3
Hoping this helps my bones as im still osteopenic and being a weeny about taking bisphoshimates...
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Congrats PontiacPeggy on 5 years...that’s great news of encouragement.
Hey Members,
I have some updates, I have been having hip and lower back pain starting 8 months after starting Arimidex. I had other pains as well, arm, shoulder, feet, and wrist, which all come and go. The pain that is most constant is the hip lower back area. My right wrist and thumb also started about 2 months ago. I had an X-ray which should no signs of inflammation or fractures and no arthritis on the side of the pain, or so says rheumatologist. However, since the pain has been ever present in different degrees of how bad it hurts (sometimes 5, sometimes 7). I rejected physical therapy and asked for a MRI. My question is, does anyone experience a consistent pain while others seem to come and go? Thanks so much for always being supportive and ready with the best information
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Humblepeace
Yup that’s exactly how it goes for me. The joint and bone pain moves around dramatically.. see my signature on ovary removal plus Arimidex on top of it. A very harsh reality of treatment for a strongly ER + gal with a grade 3 tumor.
The best I can tell you is, keep moving how ever that works for you. I’m an avid yogini, weight lifter and dog mom. But keep moving .. and the joint pain moves around dramatically as well.
Peace.
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Thank you for sharing. For curcumin, one other thing to note is that it is better absorbed in a hydro-soluble form since there are challenges in the digestive tract absorbing it.
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CBK- Thanks for your response. I have an MRI scheduled for this Tuesday 7/30 and I’m praying for a good report. I don’t think too much about the pain that moves, it’s the constant right lower back/hip area that bugs me. It also get worse as my day goes on. I’ll keep you updated. Thanks again
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Congrats Pontiac Peg on finishing the 5 years! Do you taper it off gradually in the fifth year, or just stop taking it abruptly?
I thought when I started on the pills that I was doing amazingly well on Al. So much so that at times I felt the struggle was behind me, and it would virtually slip my mind that I had BC, as if it had just been a bad dream. BUT over the last few months I have steadily been getting more and more pains in my joints, mainly my knees, hands and neck. Also getting a lot more hot flushes, and attacks of sadness. No answers for all this I know, just needed to tell someone, to tell people who know what I am going through.0 -
WorrythePooh, how long have you been on AI? I felt the same and was doing well until about 9 weeks ago. I started anastrozole on Feb 22 so had been on it approx 3 1/2 months before I started seeing changes. I always had joint pain due to arthritis but noticed an increase in the pain level and more joints being affected. I exercise about 2 hrs a day so that helped. Also on bad days took tramadol to get through. I think I could deal with that but then the blue days came on strong and found myself sad and depressed most days. My OC put me on a 3 week vacation from meds, it ends on Thursday ( my last H&P infusion YEAH) and I will meet with him to discuss what to do next. I’ve read sometimes the reset can lessen the SE so I will ask him about that. I’m not sure going to another med will help, there has been a lot of discussion about different brands and fillers but my most debilitating SE was my mental health which I’m pretty sure is due to stripping the estrogen from my body based on my reading. I don’t want to take antidepressants to offset the SE which could cause other SE’s, not sure what I will do but hopefully will have a plan later this week.
PontiacPeg, I know you are close to your 5 years, congrats and wish you all the best!
Take care all.
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Mactaz, Congrats on finishing H&P! I go through November. Look forward to the day my nose stops running! It is good to know that hormone pill side effects can start a few months in - the same is happening to me. I checked with my MO and will take 4000 IU vitamin D3 and he suggested Advil or Motrin for my knee pain. We did have a change in the weather and he mentioned arthritis. Having a good doctor is such a blessing, someone who listens and is always encouraging you that things will get better. I've had hot flashes and he always tells me they won't last. Gives you hope! We went on a short walk last night and will be doing that every night, a little longer if possible, thank you for encouraging exercise.
My hair is about one-half inch now. I put a little mousse in it today and took my mirror to see what it looked like in back (I hardly ever do that). A little thin on the top and, just for a moment, I felt sad. I kicked myself and remembered when it fell out, and how grateful I am that it came back, even if it is a little thin. I am alive. Take care and have a wonderful day, Lisa
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WorryThePooh, I don't go off anastrozole until October. I plan to just stop it. I don't see that, for me, it is necessary to taper off.
Do consider asking for antidepressants. Sometimes they can help.
Good luck!
HUGS!
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A friend of mine is also on Anastrozole. She got very blue around spring and got on an antidepressant. She has gained a lot of weight, but the blues are gone. She said her sanity was worth it. Can't hurt to ask your Dr.
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I’m going off Anastrozole this week. I’ve been on it 5 years and a few weeks. My MO said there’s no need to taper off; just stop when I run out of pills. Yay!
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I have been soooooooo tired. Is there a thread for this. I have been on Arimidex 4 months and I think this may be one of the side effects. I nap every day. Really have to push myself to get things done. Is this normal
Also more hair in my hairbrush,and weight gain. But got my first 6 month no signs of cancer after mamo.
Thanks,
Suzanne
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Congratulations Janett!! Five years sounds so daunting--good to hear from ladies who have made it through!!
Suzy--I don't feel like my energy is the same, although I can't say my energy level is normally super high, and the heat of summer just makes it worse. I think weight gain is not uncommon (I'm avoiding the scale!), and *some* women seem to have thinning hair, although they often say they had thin hair before. It seems like that's a bigger problem with letrozole, but it's certainly possible on anastrozole.
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MissouriCat, it certainly looks like our paths are the same. I'm also looking forward to getting rid of the drippy nose, loading the dishwasher is a game of strategy-how can I get the dishes in the lower rack fast enough before my nose flows.
I think your hair length is about as long as mine was so sounds like you are making good progress. It was slow, but now I have scheduled my first trim in a year next Tuesday. My sides grew faster so they are getting scraggy looking. I'm hoping to get some advice on how to manage my hair for the next several months because the top has a mind of its own. The longer it gets the more unruly it gets, not complaining though.
I will let you know what my OC says, I know people say try the anti-depressants but I just can't bring myself to adding another med. I want to try anastrozole again and see if my body will reset and SE lessen, but will see what Onc says. My doc is great and I trust him. I agree with you having a good team of doctors helps make this journey a bit easier.
JANET, CONGRATS ON MAKING 5 YEARS!!!!!!
Thanks as always to those on this site sharing....hugs.
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I vote for discussing every super difficult side effect with your MO, such as sleepiness, depression, etc. We're putting our bodies out of whack with all this stuff, and maybe there's a medical solution.
I've been on Anastrozole for 9 months now. My hair has thinned a bit, but barely.
I don't have the same stamina I used to have, Before Cancer. I need to rest in the afternoon---just sit for a bit; not necessarily nap. Not sure if this is because I'm 62, or because I'm still healing after last year's chemo assault on my body, or because of the AI. I know that I feel better and have better energy if I get daily exercise and drink a LOT of water every day. I was super sleepy the first 3 weeks on Anastrozole, so I took it at night during that time.
I gained 8 pounds in the first 5 weeks on my AI, and didn't seem to be eating differently; must be slowing of metabolism with lowered estrogen, I suppose. Ugh. To manage my weight, I'm having to pay a lot more attention than before the AI. I'm limiting simple carbs and starchy foods (enjoying them at about 2 meals per week, and skipping them otherwise), and watching portion control. Ugh. Takes quite a bit of discipline, but I feel motivated. If I can lower my BMI a bit, I also lower my recurrence risk, and I'm a bit overweight. I'm thinking of this as a Challenge, not a deal breaker about being on the AI. In 4 months of super careful eating, I've dropped 8 pounds. I need to lose another 15, if possible. This is weight loss journey is excruciatingly slow, but it is happening.
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The SEs for me are cumulative. I had some stiff joints at first and exercise helped and I was dealing with things fine for several months but the past few weeks I am aching more than before. I suppose if the effects are cumulative then I must adjust the amount of movement and exercise required for it to stop! I also have random runny nose, random sweats. All things I could deal with. Then, about 4 months ago, the hair started shedding, maybe it was just more noticeable I don't know. I also think it has effected my digestion. Digestion is noisier than ever before and much slower.
Fixes-
Joint pain stiffness: Exercise, walking, anything, just get up and move. Yeah I know somedays are better than others. I take Glucosamine 1500mg daily. Not sure I want to keep adding supplements, or try the Claratin. As stated above adjusting as needed and NOT liking it.
Runny nose: Can't do much about that just be sure have some tissues with you all the time.
Hair thinning: There have been multiple suggestions and successes here. Currently I'm trying a conditioner and a serum for thicker hair. I'll report back on this after my next hair cut. Been using about 3 weeks it does look and feel better which is a plus. $28. though. Again, not into taking more supplements or anything else. Unless proven.
GI Issues: Thankfully I don't have any pain, or any "D" I just feel more gassy than before and I believe the lack of estrogen has just slowed the whole system down. Eating much less and smaller portions then walking to get things moving. Grateful that I still go on a regular schedule.
Osteoporosis: You guessed it, already have it-in my left hip anyway. Once again the fix for this is, Anyone? Yes, that's right more medication!!! There maybe Prolia in my future but I'm months away from failing the DEXA -again OR good lord willing breaking something! I can't even think about it until then.
I am taking a break from all the reading and research. I may ask my MO in Sept. to calculate my risk. I really do wonder if all of this is going to be worth it ins ay 10-12- or 15 years!? Even 3 - 5 years?
Whoops: Forgot the hot flashes/sweats: I just deal. I stick my head in the freezer if I have to. I went through menopause without any help and without killing anyone, so even though I would prefer to NOT have any, they are far, far fewer than what I experienced before. They are random now.
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(Also posted in the "Pain" and "Bone Health" threads.)
I have been taking Anastrozole for nine months now. No real issues other than thinning hair and not sure if this new back pain is even related to that, however started experiencing ongoing back pain out of the blue at the nine month mark. Nothing seems to help other than Tylenol which takes the edge off. I tried resting, which can't find a comfortable position, ice, heat, everything. I can't take Ibuprofen products due to a scarred esophagus and history of gastritis. I exercise regularly, not overweight, and did not injure my back as far as I know.
My PCP office who ordered the tests is referring me to an orthopedic physician. The DEXA scan findings revealed osteopenia. Not sure what to expect long term. I would like to get relief but wondering if this is related to Anastrozole or just "getting old." (I'm 51 years old).
Overall goal besides pain relief is preservation of bone health as much as possible since I plan to be on an AI for ten years, at least that's the plan. I read that bisphosphonates are contraindicated for those who have a history of gastritis and scarred esophagus, which is my case, so I can't take that type of medication. Would my insurance then pay for Prolia shots due to my history of gastritis and esophageal scarring? So many questions. Of course, what scares me the most is "what if" the back pain is a recurrence and we just don't know that yet.
I don't know what "The T12 ribs are hypoplastic." means in the report and worried about recurrence.
Thanks in advance for any input!
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My DEXA scan results recently were:
EXAM: DXA AXIAL INDICATION: Postmenopausal. Risk factors for osteoporosis include no additional risk factors reported. COMPARISON: No prior comparison.
FINDINGS: Spine: Total BMD of the spine L1/4 is 1.046 g/cm2, with a T-score of -1.1 and a Z-score of -0.1. Left Femoral Neck: BMD is 0.900 g/cm2, with a T-score of -1.0 and a Z-score of 0.2. Left Total Hip: BMD is 0.978 g/cm2, with a T-score of -0.2 and a Z-score of 0.6. Right Femoral Neck: BMD is 0.881 g/cm2, with a T-score of -1.1 and a Z-score of 0.0.
Right Total Hip: BMD is 0.983 g/cm2, with a T-score of -0.2 and a Z-score of 0.7. FRAX evaluation calculates 10-year probability of fracture:
Major Osteoporotic: 4.4% Hip: 0.3% IMPRESSION: Based on BMD, diagnosis is consistent with osteopenia.
FOLLOWUP: 1 year. WHO CRITERIA FOR T-SCORES: < or = -2.5 = osteoporosis < -1.0 and -2.5 = osteopenia > or = -1.0 = normal density.
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Lumbar spine x-ray results were:
Document info Result type: XR Spine Lumbosacral Minimum 4 Views
XR Spine Lumbosacral Minimum 4 Views
Report EXAM: LUMBAR SPINE INDICATION: Backache, unspecified
COMPARISON: CT abdomen/pelvis 6/2/2015
VIEWS: 4 FINDINGS: BONE DENSITY: Normal mineralization.
VERTEBRAL BODIES: The T12 ribs are hypoplastic. No fracture, endplate demineralization or lytic/blastic lesion. Small endplate osteophytes are present at L1-2.
DISK SPACES: The L1-2 disk space is narrowed.
ALIGNMENT: Mild dextroconvex curvature of the lumbar spine with apex at L2.
JOINT SPACES: Mild L5-S1 facet arthropathy.
IMPRESSION: 1. Lumbar spondylosis most evident at the L1-2 level. 2. Mild lumbar dextroscoliosis with apex at L2.
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MACTAZ that's interesting, I started very soon after you did, on the 28th of February! With the depression I did get that quite quickly after starting them, but it went away after a couple of weeks, so I thought that was gone for good. Most days I am OK but it comes out of the blue sometimes, a wave of feeling of intense sadness and hopelessness.
Regarding the joint pains, It took around the same time (3 or so months) as you experienced before I noticed pains becoming worse. I have a lot of pains daily now, I don't really want to be taking painkillers all the time though due to the negative effect of doing so.
PontiacPeggy thanks for your reply.
Tbh I don't think antidepressants are for me, as once I tried them when much younger for post natal depression and they made me feel dreadful. 0 -
WorryThePooh, that’s what happened to me on antidepressants also when I was younger. I will post what my ONC says today and let you know what my next path is.
I should be happy today because I have my last H&P infusion but I must admit I’m stressed, even had one of those dreams where know matter how hard i tried I kept getting detoured and couldn’t get to my appointment (boy is that telling
). I guess the unknowns, what happens after treatment ends and what to do about hormone meds has me a bit stressed.0 -
Congrats on your last H/P, Mactaz!! I hope you do something to celebrate.
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LillyDuff I hope that your back pain can be resolved soon; it sounds awful! Have your doctors explained the cause of your pain, and explained the findings from those scan and x-ray results? Does the arthropathy that's seen on the x-ray explain your pain; is that the same location? Do they (orthopedic doc, etc) have some ideas for your comfort? Can you take NSAIDS at all? I do okay on them, and occasionally take (24-hr relief) Meloxicam (Rx) when my hips and knee arthritis acts up. PT's are good resources for learning which strengthening exercises to do to support back issues; I've been through some of that over the years.
You mention contraindications for bisphosphonates. I wonder if those reasons are just for oral med versions of them?
I get a Zometa infusion every months. I was diagnosed with osteopenia on a DEXAScan, which my MO ordered to know my baseline bone density before beginning my AI. My MO says that Zometa offers some protection against bone metastasis, and it doesn't have any GI effects on me since it's an infusion. As far as convenience, I like this plan---no additional oral med to take. My MO also mentioned that it's covered by my health insurance because I have both osteopenia + breast cancer. It takes maybe 2-3 hours for this procedure: First a blood draw, then I see my MO (I think he checks some liver enzymes and other things) and then the infusion, which takes maybe 45 minutes. The day after my infusion (I've had 2 so far), I feel achey and tired and need a nap, and have to drink a lot of extra water. However, by the day after that, I feel perfectly fine again.
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HikingLady:
Unfortunately, I can't take NSAIDS anymore due to scarring in my esophagus from terrible GERD and gastitis. So that's out.
I am supposed to call and make an appointment with the Orthopedic physician, which then I should get more answers and hopefully, a game plan. I do want to address the osteopenia now as well to prevent further bone thinning.
Thanks for the information you provided. It's helpful to read what others are doing!
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my moms MO said she will either be on arimidex or tamoxifen depending on bone density scan. Is one easier on the bones than the other? She is also post menopa
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