For Arimidex (Anastrozole) users, new, past, and ongoing
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Dear monicahey,
Welcome to the BCO community. We are sorry for your diagnosis and subsequent treatment issues but we are very glad that you reached out to share your story and connect with our members. We hope that others will be around soon to offer support and share their experiences. Please let us know if you need help finding your way around or connecting with others. We will be glad to help.
The Mods
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monicahey What a good idea to discuss all this with your MO and ask all those questions. If I were in your shoes, I might ask what the added benefit (%) protection is against recurrence for continuing on some AI for the recommended number of years, which is kind of a moving target due to ongoing research. Probably still 5 years. I'd ask, too, about all other options. My MO originally explained several solutions to help with difficult side effects.
#1 is to stop for a 2-3 week Vacation From the AI(that is, go off it completely for this amount of time), then sometimes our body does a "Re-set." As in, re-starting the same med, our bodies sometimes manage that same medication after that re-set.
#2 is to try a different brand/formulation.
#3 is to switch to Tamoxifen, which has a lot of benefit, just not quite as much as an AI for post-menopausal women.
I haven't had to do any of these, but he made it sound as though first we'd work to reduce the discomforts of any difficult side effects, and then there is this list above, of other possibilities.
Sending warm wishes for comfort and a decision that works for you.
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Monicahey-
Wow that is terrible after two years, is it possible it could be some other vitamin deficiency? Like when my D3 level was low my hair was terrible thin. There are a lot of possibilities besides the anastrozole... thryroid, zinc deficient. Maybe you have that all covered but I wish a solution for you!
But I hear you ....those of us that experience side effects have to fight really hard on this med! I’m wondering if anyone can chime in about hair loss at 2 years after starting to take anastrozole?
I’m also interested in what you find out... if I could go off this pill I would in a heartbeat!
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Moni. Good you made the appt to go over your options with your MO. Definitely ask the added benefit percentage that you are getting by the AI and weigh that against your SE's. I am coming up on finishing my 1st year. I shed hair everyday and it started about 6 months in. My skin has always been horrible, now it's just worse. Have a standing order at the pharmacy for steroid cream for the come and go rashes. I only had the joint aches for the 1sst 10-14 days. I think my body did adjust to the med -thank goodness on that one. Good luck, let us know how you make out.
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Hiking Lady-
I’m glad you mentioned the anastrozole vacation!! I took one recently and it did help me to reset and feel better for a while. Like I was feeling amazing but now I feel like some of side effects are back. Not as severe though. Strange how that worked somewhat!
It also allowed me to be clear on what side effects were from Arimidex vs. my ooph. I was not menopausal when I had my ovaries removed. So it was all muddled what was going on with me because I hit with Arimidex and ooph 2 weeks apart. Cruel transition!!
Good suggestions.
I switched between 3 different brands of anastrozole. At first I thought brand Arimidex made me feel better but in long run all the same. The fillers between brand, TEVA and Accord are virtually identical. Those are the ones I’ve tried.
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unfortunately it did impact my hair and I have lots. Taking biotin too. Apparently the Estrogen suppression affects the follicles and can cause thinning. Hoping it is ok for you!
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4864803/
Vitamin C, Omega 3s and possible zinc supplementation ( if you are zinc deficient ) can help with hair loss associated with ALS and Tamoxifen.
Has anyone used topical vitamin c on the scalp? I’d be interested in where you purchase a reliable product!!!
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CBK I just read that same article last night. I think I'd be willing to try a topical before taking more supplements, I don't know, but I think it's time I try something because it's not getting any better.
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ctmbsikia-
Well at least the piece is based on some research.
I use Amla powder in my smoothie every morning. That's high in vitamin C and I don't see the harm in a good quality fish oil as the benefits seem to outweigh not taking it.
The question is where do you find the good vitamin C serum for topical use. Let me know what you discover.
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I have been on anastrozole for about a year and I have noticed, as has my hairdresser, that my already thin, fine hair is getting thinner. I am using minoxodil (generic Rogaine) for the last few months and it does seem to be a little less thin. I had been using it for many years prior to my diagnosis so I know it does work to some extent. I have never had and never will have very thick hair but styling becomes a problem if the hair is too thin.
I think my greatest problem with the drug is I don't sleep well due to hot and cold spells and have a problem getting back to sleep so I feel tired during the day and have to take a nap. I had never been a napper before so I'm not happy about that. I have aches and pains of aging (80 y/o), scoliosis,and not able to do any real exercise due to shortness of breath (which I don't know yet why I still have it after getting post-chemo A-fib under control). Looks like yet another doc in my future, darn it. I was hoping that I could get through this summer without a doc appt. My DH has sat in so many doc offices, hospital rooms, hospital waiting rooms and ER's over the last two years that I hate to think he has to keep doing it. He is a real rock and the love of my life so I think he needs a break. As do I, it has been one thing after another for the last two years since diagnosis.
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Thank you HikingLady and ctmbsikia, I took your advice. My MO said that after testing my tumor Dec '16, that 5 years on an AI would decrease my risk of recurrence to 12% but there are no numbers for going off completely. Since I had a hyster/oophorectomy apparently that makes me a candidate for Tamoxifen (not sure why). She said Tamox raises the risk by 2% but I'm ok with that if it helps the SEs (We will see about that!) I have begun a 2 week vacation and on day 3 I am not sleeping well at all. Hot flashes, anxiety. I will report back as I make the switch.
For the past 2 years the SEs have been extremely muddled with what is normal aging (just turned 50) and anxiety/stress of mind and body from several surgeries. I did not make the link between depression and sleep loss with Arimidex. Adding 20mg Lexipro has been a lifesaver. I suspect the hair loss also to be a mix of factors as well and will see a Naturopath to get on the right supplements. I'm already taking a handful everyday! It feels good to ask questions and advocate for myself after being in head-down survival mode not questioning any doctors. It's a process.
Finding this community just when I needed it most is such a blessing. Thank you all for your wisdom and support.
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I have both switched drugs - arimidex to letrozole - and taken a break. Both were helpful. Many have reported SE relief after switching brand name or going to the formulary. For most of us, with any of these drugs, there are SE's. We just have to decide which ones are most acceptable/tolerable to us or whether they just aren't after weighing other things (age, reoccurrence rate, family circumstances etc.). I know my hair has thinned more on the letrozole but my mood is so much better that I have chosen to just be a hat lady.
I was taking C&G and Calcium with Vit. D before BC. I have continued the generic claritin the I started during Taxol. I do expect to have a knee replaced in the fall but I am of the age group where that isn't a all that unusual. I don't think it is the AI's.. I had carpel tunnel surgery several years before diagnosis.
For some, including me, a mild anti-depressant or anti-anxiety medication has been helpful. My experience is to keep talking to your MO and primary until you find the right mix. With a switch in anti-depressant medication, my hot flashes went away. There are threads here for those who are interested in diet changes or homeopathic treatments.
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i just finished radiation. Am am supposed to start Arimidex. But I am holding off to do a little more research. One study I found concluded that NOT taking it would lead to twice as much risk for BC within 5 years. Which sounds conclusive until,I realized that the the numbers were 2 and 4% respectively. (See the chart). What am I missing here? Arimidex doesn't seem to extend life. Are there different stats for disease-free progression or recurrence that make taking it a no-brainer. Honestly, I love my joints, hair and sleep too much to put them at risk.
This study was not of women WITH BC but those at high risk for it i want to see a study that compares recurrence for those of us with estrogen positive BC with and without Arimidex
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Haliday--it might be helpful for you to use one of the predictor tools to see what those percentages are for women with your dx.
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Haliday, my MO said that taking an AI cut my recurrence risk in half. That's a lot of benefit for my DX. Each person does have different risk factors. Ask your MO to clarify exactly what the % benefit is that you're "buying" if you take the AI. There are definitive numbers and research on this which NCCN guidelines are based on in the USA. I'd ask MO to give you a plain English % risk of recurrence for your diagnosis, and interpret and contextualize the current relevant research.
I am doing just fine on my AI. My sleep was already awful since menopause; it didn't get any worse on Anastrozole. My joints were already a bit creaky, and daily exercise keeps me very comfortable. My hot flashes are more like occasional feelings of warmth--nothing very extreme. I have no hair thinning. I'm on a bisphosphonate (Zometa infusion every six months) to protect against bone loss, because I already had some thinning (osteopenia).
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Well let's also consider the amount of risk.
It sounds really great to say it cuts your risk of recurrence in half but if your risk is 2%, you drop to 1%. If it's 50%, then you drop to 25%--and that's assuming that you absolutely unequivocally get a 50% reduction in YOUR risk.
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edj3 Absolutely true, you're exactly right. I'm glad you said that so clearly. This is so extremely individual. Because of my DX and other risk factors, I happen to start with a huge recurrence risk probability, so it matters to me. Statistically, being on an AI does have a chance for extending my life quite a bit, as well as reducing a recurrence risk. In my case, 'recurrence risk' = Mets and Stage IV. And, who knows whether each individual ends up 'obeying' the statistical probability, as you point out. No guarantees. For me, the % is decisive, but not for everyone.
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I know for me, were I in your shoes I wouldn't even be considering not taking the endocrine drugs. You're right, your situation is completely different from mine and I wish it weren't that way
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Re: online predictor tools, I get wildly different results using predict vs. lifemath. Lifemath puts my 15-year risk of death at around 20% whereas Predict gives me about 50-50 odds at 15 years. Anybody else get such different numbers?
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I will be switching to an AI as soon as I am menopausal (soon, we are thinking). I am another person with no other choice. Very high risk, so I've joined all of the threads about AIs and Arimidex, in particular. I have made friends with Tamoxifen...no real SEs now...so, I don't want to make the switch but I must, to lower my risk. At this point, even if I get the most common side effects, I figure if FAC didn't kill me, I can handle it!
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When I run those tests using my data, the data is expressed differently but I think it's basically similar. Lifemath says my risk is 2.4% but it also doesn't ask anything about the Ki-67 status.
Predict does ask that and considered me positive at 12% although in the US, it's not bad until it's 20% according to my care team. My survival rate for 15 years is 89% with surgery (which I had).
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hapa - unless lifemath/cancermath has been updated it doesn't factor in treatment for the Her2+ aspect of therapy, but Predict does.
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thanks, all. Yes, I have run as many prediction tools as I can find. Predict suggests a 9-12% difference in surviving at the 5, 10 and 15 year marks. And Iassume that incorporates the risk of recurrence. The question for me is what do those years look and feel like. And, absolutely, everyone makes their own choices based on their personal sense of risk assessment combined with the statistics.
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it’s good to see such a logical discussion about such a difficult situation. Is is so individual, but we all need to understand the risks vs benefits for our situations, And support each other in our journeys.
For me the benefit is only 2% and I lost 10% of my spine within six months of AIs so a clear decision for me. I just wish I didn’t end up with the bone loss. I know this is atypical but for me not worth The risk. I am happy to be able to walk again normally without pain, and sleep through the night again.
hugs to all!
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AngelsGal57, there's nothing petty about wanting to keep your hair!!! There are threads in here about hair thinning and hair loss.
I'm starting anastrozole today and very nervous about all of this.
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Anastrozole recall -- who knows about it? https://www.smithdrug.com/uploads/recalls/Recall_Notification_Letter_-Anastrozole_Tablets_1mg-Revised_05.06.19.pdf
I continued taking it till ran out, called for refill, my nurse told me nothing but that CVS is out of stock. Then I got a call from my CVS that drug has been recalled. Are you affected? How did find out about it? What do you do about it if you need a refill?
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I just read your post, I hope you are doing well. I'm making major changes, like plant based diet, etc. Do you mind if I ask you what brand turmeric combo liquid you are taking and what brand liquid probiotic you use? Thank you !!
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Edd11, thanks for sharing the recall letter. This brand is the exact brand my pharmacy receives my anastrozole from. I placed my refill request four days ago and it hasn't been fill so I called and asked about it. The pharmacist danced around my question if the Zydus is the brand they carry and her response was they receive what their pharmacy warehouse has and distributes to them. I asked if the brand they carry is Accord or TEVA and finally she replied Zydus. I figured so as she over stated where the hang up was for not getting my prescription filled. She then suggested to contact another pharmacy to fill my script as she has no idea when they will get a supply in. I'm ok with the number of pills, I have enough for a week but wondered if the delay in refilling my script had to do with the recall and it does
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stellawt57, amazing they didn’t fess up and actually notify you of the delay and reason. I have gone to the fda site and signed up for recall notices, I was amazed at the number of products with current recalls that I hadn’t heard about.Edd11, thanks for the heads up. I checked mine and was okay.
I was curious if people SE come and go? It seems like I will have some really good days then a couple of lousy days, nothing I can’t handle, but just found it odd.
Take care all.
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monicahey: I have been on Arimidex for about 4 months and my hair is falling out. I sent a message to my Oncologist and she said "You can try some over the counter vitamins for hair & nails" -- I bought some but they don't seem to be helping. It's like they don't know what to do. Maybe there is nothing. I also have joint pain. I can't take NSAIDS. I moved the AI to right before bed and that helped some. I started taking CBD and that is helping me sleep. I want to know if the hair loss is permanent and I want to know that I can do to stop it. They are NO help!! I feel so guilty talking about my hair to them. There are so many women suffering with breast cancer that I don't think I deserve to complain about my hair. I'm going to ask my hair stylist. Maybe she will know what to do. At least a shorter choppy hair cut might help. My hair has always been thinner in the front but now you can see my scalp!! I color my hair and may stop that too. Let me know if you find out anything.
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