For Arimidex (Anastrozole) users, new, past, and ongoing
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My dexa is done through my endocrinologist office. Cholesterol is through my pcp. But MO might also have it done, always getblood work there. MO monitors all kinds of things - vitamin d level, some cancer markers …I get a printouts every visit. But I’m not in my primary home, and don’t have it with me.
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JinnyNH - I started with Letrozole and switched to Anastrozole, but had similar issues with wrists and fingers, I wear wrist brace on both wrists at night which has helped immensely with my wrist pain. I developed trigger finger and my orthopedic doctor gave me an injection, which helped. I also had some occupational therapy and she gave me a brace for my finger.
Momwriter - my PCP monitors my cholesterol (and other blood work) and had been ordering DEXA scans. But my MO scheduled my next one for later this year. I’m only a year into taking AI drugs, so right now I see my MO every 6 months and my Breast doctor every 6 months (so I see one of them every 3 months). Mammogram and/or breast MRI are still if applicable.I also see my PCP every 6 months. Besides DEXA, I asked my MO about other scans and she ordered me a bone scan.
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Hello momwriter!
For me - PCP monitors cholesterol and at my MO visit yesterday, he ordered the Dexa. Exercise does help and also keeping well hydrated. Occasionally, I may have a few twinges in hands and toes. Other than that no joint issues, which I consider to be pretty good as I am 67. I do have hot flashes, though.
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I had a BCI test done after 5 years of Tamoxifen and came back with a score of 6 and was labled HIGH RISK for recurrence NO benefit from continuing Tamoxifen! My doctor was very surprised. He said about 1-2% have that result. After much discussion with him (and myself) I did stop taking Tamoxifen. What helped was that he told me that Tamoxifen had been giving me a 50% reduction in risk for recurrence but that daily exercise would give me about a 40% reduction and losing 10 pounds (I weigh 160 and would do well to be at 150) would give me another 30% reduction. And then if I made sure I ate plenty of fruits and veggies I'd get another 25% reduction. So if you started adding all that up, those practices actually gave me more risk reduction than Tamoxifen! Once my very analytical brain (i.e. major worrier) wrapped itself around that info, I found I was comfortable going off Tamoxifen.
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lala - I take, Letrozole, not Arimidex, but I am replying because you bring up an issue that I have often wondered about. I've also heard that the AI can give some percentage of risk reduction, and that then walking gives you a percentage of risk reduction, as does weight control, diet, and other things. If you add up all these supposed risk reductions you can get by doing these various things (and assume you actually do them all). The risk reduction then could go way over 100%, suggesting that if we take the AI. walk, keep our weight down, eat lots of fruits and veggies, etc our recurrence risk could actually be 0 - or more than 0 apparently, yet somehow I just don't believe that is true.
I've never seen this issue addressed on here. I'm also no math/stat sort of person, so am wondering if anyone with any real knowledge of statistics could weigh in about this. How can all of these things that offer risk reduction if we do them, add up to more than 100%? I've also read on here where some have opted out of AI's because the side effects were so bad and their doctors told them that walking, normal weight maintenance, and plant base diets would do as much for them. I'm very confused, but that's not surprising due to my "Letrozole brain". Any thoughts from anyone?
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I think any of my skepticism comes from the fact that there are many on here that ate right, worked out daily, had a great weight and BMI too.
Anastrozole- I’ve got another year and two days to keep on taking it. My PA said BCI next October. But my MO said with my type, grade, etc I didn’t need it. We’ll see come October
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My MO also said that there was no reason for me to do a BCI. Like CindyNY, he didn't think it would be helpful in my case.
HUGS!
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I know a lot of people complain of weight gain on AIs, but my weight is fairly stable. But shifting a lot. It is like I have one of those bellies that is cute on a toddler, but not-so-cute on me! I am exercising HARD about 8 hours a week, eat a healthy vegetarian diet (as I have done since my not-so-healthy vegetarian pizza and fries college student days) and like I said, my weight is pretty stable. Anyone else? Any suggestions?
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yesiamadragon - my weight has been pretty stable as well, but I’d like to improve my core strength (a little gut too) and help with back pain. My husband said he read that doing planks helps. We try to walk 2 miles severaltimes a week, so I thought I’d read up on what plank exercises would do for me. I have exchange surgery coming up, so I need to wait till I heal from that before trying them out.
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On the weight issue, the Arimidex I take doesn't make you gain weight, it just makes it tough to lose weight once you gain it.
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I'm gaining weight, and it's almost all in the torso. My diet hasn't changed significantly - my main change is cutting out sodas - but I am 15 pounds heavier than I was before I started Anastrozole. Maybe it's semantics, but if a person's weight naturally fluctuates fractions of a pound day to day, and they loose their natural fluctuations downward, the net result is slow and inexorable weight gain.
I was never a skinny gal, but I would like to be less doughy again.
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Good morning. I just started on Anastrozole on December 12 of last year and about two weeks ago I started getting red, dry skin around my eyes and it is getting worse. I haven't changed any products that I use on my face, so I'm thinking it might be a reaction to the Anastrozole. Has anyone experienced this? Thank you for any input.
Swimgal
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swiimgal I've never seen that as a side effect of taking Anastrozole. Maybe someone else could add their experience.
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Thanks, Homemom. I guess it's time to see the dermatologist.
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Question for all of you Arimidex users out there. Have any of you been told to start on Verzenio or have your doctors discussed it with you? I had my oncology appointment today to get my bone density results, normal, YAY! Thank God something is normal, lol. There has been a study done that if you are ER+, HER- that taking Verzenio along with Arimidex can prolong your lifespan by 40% before reoccurrence. For those of you that have seen some of my other posts, I went from stage 2A to 3C after my SMX in December. In order for insurance to cover this drug, it's $13,400 a month, you need to have a KI 67 score of 20%. I am at 15% so we're throwing the dice to see if insurance will cover. I want anything that can prolong my life. I'm not stage 4, but I'm a step down. Just wondering if anyone here has experience with it. I may not get the chance if insurance doesn't cover, but I'm hoping they will. HA!
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Kotchaj, I started Arimidex+Zoladex at the end of January, and started Verzenio Feb 17. My Ki67 was 60% so I clearly met the criteria. No problems getting insurance to pay for it. I had the typical GI issues to start with, but once I stopped taking it on an empty stomach it has been OK. There are a couple of Verzenio threads you might find useful to check out - here's one for Stage III and Verzenio, and here's one in the Stage IV forum (it has been used much longer in Stage IV so there's a lot more experience there). My onc guesstimated that I have a 20-30% recurrance risk, so I'm motivated to stick with this drug and try to improve the odds! Ki67 isn't a super precise measurement so I hope your insurance company won't quibble at you being 5% below the line.
(Edited to note: this lovely new version of the website won't let me edit my profile to say so, but I ended up a stage IIIA and not IIB)
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Mle-Thank you for the threads and your own experience. I appreciate it. This website and all of you on it has gotten me through so much already! Not done yet, or will ever be with Arimidex for life, but I'm okay with that. I have mourned my pre cancer life and am now in the acceptance mode of my new normal for me. Which involves a heck of a lot of drugs than I've ever taken in my entire life. But, they're going to help me prolong what time I have, I am all IN.
I see that my stage is off as well. We're both stage 2B. I would take that over where I am now, lol.
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I'm now getting acupuncture and physiotherapy for the wrist but it's too early to see whether they'll be effective. I also have some pain in one knee, not sharp but enough to bother me going up and down stairs or doing taichi. Have been getting acupuncture for that for some months and now added physiotherapy. The physiotherapist put in some needles, using echography to guide him, and applied some kind of electric current to produce local inflammation and see if the knee will heal itself. But he also saw some degeneration of the knee, probably due to age (76). He also applied electromagnetic stimulation to one wrist but it doesn't seem to have done anything. The trouble is I type a lot (on a PC, but it's still typing) and use the mouse a lot, which probably also affects the wrists.
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I had a lot of arm and wrist pain with arimidex. I still work so couldn’t take it. I’m on letrozole now. Still miserable but I’ve tried them all and arimidex really attacks the arms for some reason.
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jinnynh and jrnj - I also hav trigger finger and wrist pain. I wear night wrist braces, which has helped and did occupational therapy for my trigger finger. I have a plastic brace for my finger, had it injected and had exercises for my affecte hand. Years of using a mouse and laptop use took its toll on my hands and wrists though. But I'm use my iPad mostly these days.
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I've had sporadic trigger finger issues too, and I'm super mindful of hand/wrist/elbow pain. As a massage therapist, my hands are my livelihood. I only get short and occasional flareups, but I hate wondering, "Will this one be the pain that stays forever?" I was on Tamoxifen for a year, and one so far on Anastrozole. I really hope I only need this for a five-year stint, and not ten years or as a lifer.
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MET WITH A NATUROPATH to find ways to manage the hand and joint pain: Last week I met for a full hour (!) with a naturopath to whom I was referred by my regular health care provider, Kaiser Permanente. I'm amazed they have this specialty in the toolbox because it's still "alternative," but glad they do.
After the appointment, it occurred to me that all of the information - about what to try, nutrition, exercise, stress management, mindfulness, which I received from her, I *thought* would have been shared with me much, much earlier (my diagnosis was August 2020 and I was done with radiation as of Jan 1, 2021) by the oncologist and the regular provider. Or I would have been ushered to someone, naturopath or not, to get it as a matter of routine. And I was not! I had to ask about what to do next, who to see to get the hand pain relief and other information.
This segmentation and specialization is kinda nuts. And confusing. Nothing should be "confusing" or difficult as we make this already confusing and painful journey!
The first remedy we're trying for my hand and hand-joint pain is *castor oil.* Who knew? Until this, I did not. I rub it into my hands and put on a "beauty glove" and let it soak in. I'm not feeling any real change, but it's just a week that I've been doing it. Betting the massage itself is of some good assistance.
Other ideas like CBD or acupuncture are not on the table. Yet. My pain is like a 5 on a scale of 1-10 and it lessens to a degree as I use my hands after getting out of bed. So there is that.
The naturopath has laboratory privileges with Kaiser, so she has put in an order for a lab check of many blood components including minerals, Vitamin B, TSH, zinc, copper, Vitamin D. Happy she can do this!
I wear compression gloves at night, and I also found, before my appointment, that a lidocaine 4% analgesic cream did help. Voltaren and Trolamine Salicylate 10% did NOTHING.
Will let you all know what is found, next steps!
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I've been reading some posts that some people are taking Claritin while on Anastrozole; why is that? What is it helping with? Just curious.
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Claritin seems to help with some of the stiffness we can experience taking anastrozole. Who knows why it works but it does. REGULAR Claritin NOT decongestant variety. It may ease really bad pain - not sure. For me it helped me not be so "creaky" in the morning. And I did notice a difference when I didn't take it.
HUGS!
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It's a bit expensive, but several of my coworkers swear by Biotone's CBD/Lidocaine cream. We're massage therapists, so we use our hands a LOT.
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I use Arnica cream or gel for joint pains in fingers, knees, etc. whenever necessary. Works well for me.
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Like celiac, I use arnica cream. I am also using Doterra Deep Blue stick and volteran gel in some areas. Taking Tylenol. I have an assortment of ice packs, a heating pad, wrist braces, and a finger brace. I had arthritis issues before my BC diagnosis. The medication that I'd been taking doesn't seem to be as effective since I've completed treatment. Rainy days and Mondays….
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To the carpal tunnel syndrome (which seems to be advancing rapidly in my left hand), I also have Dupuytren syndrome. It started several months ago in my right hand and is spreading to the left one. I will try short wave on it, since I have a machine and trust it will do no harm, though it might not help. I am still getting acupuncture and physiotherapy (more like a Chinese torture because he gave me some really strong shocks through a needle!) for the carpal tunnel and am hoping for the best. I may have to get operated on for the carpal tunnel, though I'm not enthusiastic about it. A few days ago, I saw the radiotherapist for my yearly check-up. Since she was the doctor who prescribed tamoxifen (which I could not tolerate because it activated a hemorrhoid terribly), and it was the gynecologist who switched the treatment to arimidex, this doctor's sole concern seemed to be that she was miffed because SHE had not made the change. She sort of scolded me for it, more or less implying that tamoxifen was absolutely THE BEST for my cancer (I got the impression she was also implying that arimidex wasn't so effective). Zero empathy for my side effects, even though carpal tunnel is in the Arimidex prospect sheet (she doubted it WAS a side effect), and wouldn't even listen when I tried to tell her about the dozens of complaints of my fellow sufferers from hemorrhoids as a result of tamoxifen (she pooh-poohed about "forums"). How else can pharmaceutical companies even learn about the side effects if not by listening to the patients? I came out thoroughly discouraged because I felt like a victim of some sort of cross-fire between two departments (radiology treatment and gynecology) that I would expect to COLLABORATE, NOT COMPETE, WITH EACH OTHER.
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JinnyNH, how sad, annoying and generally just not good the lack of cooperation between your doctors is. Where are you located? Generally your hormonal therapy here in the US is handled by a medical oncologist. Can you change doctors? I think that replacing your radiotherapist would help you immensely IF you can do it. No one needs a doctor who doesn't listen, believe what you are saying and generally being an a**.
HUGS!
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I'm with Peggy. No one deserves that!!
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