For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Dulcea, I noticed a ton of hair loss too, when I started anastrozole in early January. I talked to my dermatologist, oncologist, and GP about it (it was stressing me out almost more than the cancer), and with everyone's blessing I'm taking a daily biotin supplement of 5000 mcg, plus 1000 mcg's of Vitamin B12 (in addition to whatever amounts are included in my daily multivitamin). While I cannot definitively say that the biotin and B12 are the reasons why my hair loss slowed back down to normal, or why I have a lot of new growth, that's where I am now, four months later. For all I know, it's because my stress levels have returned to normal after the whirlwind of diagnosis/testing/surgery, or because of a placebo effect. Nevertheless, I am crediting the biotin and B12.
You might want to talk to a dermatologist initially. My doctors were all super good at communicating with each other, and obviously I'm not taking any supplements that haven't been blessed by the oncologist.
I know how stressful this is. Hope you are able to find a solution quickly!
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Dulcea - AIs caused hair thining for me as well. Biotin seemed to help with nails, but not hair. I was using and still use 5 mg. Haven't experienced gobs of hair coming out, but definitley lots in the combs, and I cannot blame the dog for all the hair I find around the house. One person posted about Pura d'or shampoo. I am trying it, but jury is still out
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BlueGirlRedState, I had the same experience with Biotin. My nails grew like crazy but I still shed hair. I tried one shampoo but I could not stand how my hair felt using it.
HUGS!
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I've had a very good experience with biotin shampoo. My hair loss decreased dramatically when I first started using it.
I use RenPure Biotin and Collagen. I buy it at Target, but they have several other brands as well.
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Thanks everyone for your responses to my thinning hair. I will speak to my oncologist and dermatologist. I will also try that RenPur shampoo Mirianda. It can't hurt to try, right?
Typhoon, that is a good point about stress. My journey has been the most stressful in the past month and that's when my hair started jumping ship, not when I first started the AIs. Hopefully life settles down now and my hair grows back!
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Good luck, Dulcea! We hope things are smoother and easier for you in the near future. (((hugs)))
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good luck. Just be carefwith collagen. I got an ok from MO for biotin but def no to collegian
Sorry!
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That's new info. What's the issue with collagen?
Looks like it's being actively encouraged now:
Boosting collagen intake is essential for cancer and heart disease prevention, advise researchers
But not always:
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I see her tomorrow and will ask and post. Was also told to stop biotin 1-2 days before blood work as it can effect tumor markers. It’s all so confusing and incon
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I also wonder if oral supplements have a different effect as opposed to topical applications like a shampoo. I'll ask my doc about it too next time we talk. Now I'm super curious!
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Mirianda, those links you provided were interesting. It seems it is a certain kind of collagen that actially stop tumors from growing (coll 3) but other kinds of collagen promote growth.
As for my hair issue, my BS suggested biotin supplement. My oncologist said biotin wouldn't hurt but she has not seen any evidence that it helps with hair loss. She suggested onion juice (!) if I can stand it. She said her MIL used it with success and it is commonly used in her country. You keep in in your hair for 1 1/2 hours! She also suggested minoxidil which comes with it's own side effects.
She also said the shampoo is fine to use. I do like the way it makes my hair feel and the fragrance is not overpowering and very clean smelling. Unfortunately, my hair is still falling out in gobs. I hope this is just temporary.
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my body aches, muscle and joint, energy not the same. is it always going to be like this?
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Thanks for asking that question Stacy91965. I just started anastrozole and am wondering how long it takes for side effects to kick in, ease up, get use to them, etc. I was on letrozole for 6 months and while not exactly miserable, I had a variety of side effects I was hoping would go away in the two weeks between stopping letrozole and starting anastrozole. Of course the aches and pains didn’t subside, but I’m still doing HP and have an arthritis condition that predated my BC diagnosis.
I hope you feel better.
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SEs - it is such a spectrum. For some, none to minimal SEs, for others managable SEs, for others, so bad they looks for something else. Drug effectiveness does not seemed to be tied to SEs, but effectiveness also seems to have huge spectrum. Hopefully the drugs work and you do not expoerience the SEs. Magnesium supplements seemed to help with joint stiffness. There are many kinds and brands out there. So far, Mg glycinate seems to work well for me. Staying hydrated also helps a lot.
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I just stopped anastrazole after 7 years! I’m so excited about it and proud of myself for sticking it out. At first the joint pain and stiffness was horrible but after some time I seem to have adjusted somewhat. I found exercise like yoga, walking, and swimming to help a lot. For those who have stopped AIs how long before the SEs wear off
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Stacy91965 and Nsbrown 54, SE are different for everyone. Prior to my BC diagnosis I was diagnosed with rheumatoid and osteoarthritis, my joint pain became more intense when I started the anastrozole. After a lot of reading I asked my MO for a referral to an Integrative Dr. once I started seeing her for acupuncture to treat my anxiety, mood swings and joint pain things improved. She also recommended mag. glycerinate for anxiety/mood swings, curcumin for joint pain, and vitamin B12 for anxiety as well as water & exercise. When I started my acupuncture sessions I went 2x weekly for 6 weeks, then once a week for a month, biweekly ever since. The one thing that frustrates me is once I go on Medicare next year with a Part D supplement my acupuncture won’t be paid for! 😖 they’d rather see you take more prescription meds to treat your side effects, I refuse to take more meds that can cause more side effects, which is the reason I started seeing my Integrative Dr. I have time to look into it more before I have to decide anything. The upside is I’m halfway done with my anastrozole! As so many others here have saidit’s doable! All of my best to you as you manage your SE!
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AKJ - Jealous!!
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Stellawt57 - It is discouraging and seems criminal that so many things are not covered by Medicare and not much hope of getting that changed any time soon. If acupuncture is working for you, it seems like you should stay with it. I will probably reduce my visits, because private only covers 24 visits, and since it is out of network, only cover a fraction of the cost. I like my acupuncturist, but might persue "community acupuncture", which tends to be much less expensive than individual.
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Stellawt57 - disappointing that Medicare doesn’t cover acupuncture. I may give it a try to see if it helps. My previous rheumatologist was learning acupuncture and I had several sessions (years ago) with him before he moved to start his own practice. Deal with the aches and pains of autoimmune conditions and adding on chemo side effects is a challenge. Take care
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ACUPUNCTURE!!! yes yes yes. i can't say that enough. Our integrative medicine clinic offers it, yoga and massage. no insurance does not pay
i have used acupuncture for other things in the past so i was excited to do it for hot flashes and body aches. First apt was a private session, ($125) now i go to group ($40). i thought group would be weird, but is not at all, its in a large room, the lights are dim, we are in our chairs, apts are staggered every 20 minutes so once the acupuncturist is done with the first patient the second patient has arrived. Ask around see if there are group sessions you can attend ~ it should be cheaper.0 -
Hi there,
I know I need to discuss this with my doctor but just looking for feedback/insight. I had DCIS ER/PR+ in 2017. Treatment was lx and radiation plus Arimidex. I didn’t take the Arimidex mainly because I have Hashimoto’s and the side effects sounded very much like hypothyroid and I chickened out. Although I take levothyroxine, my doctors tend to keep just barely within normal range so I still have the annoying symptoms- fatigue especially. I had DCIS again in 2019 which was ER/PR-. Had mastectomy. Now I’m thinking I should be taking Arimidex —does this make any sense? I’m 62, no known genetic mutations but my mom had ovarian cancer— stage 4 at 69. Appreciate any thoughts, advice
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jetcat,
Seems we both have similar genetic medical history. My mom had Graves disease, ovarian cancer stage 3 at 60. Breast cancer at 70. Me hashimoto's followed by BC.
My Levothyroxine dosage is just to keep me in normal range. I am no doctor but I started to agree with low dosage as possible. I take Levo at night(unconventional yes but this also increases chance of earlier dinner along with no night snack) Arimidex in the morning has been working beautifully for the last 4 yrs.
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Jetcat I totally appreciate how many things you're trying weigh here. I'd break them down separately.
Whether your thyroid is affected by an AI is one question to ask your endocrine doc or oncologist.
Your oncologist can clarify exactly what your 'benefit' is that you gain by being on an AI. Example, my recurrence rate (= future mets) is VERY much lowered if I'm on an AI for 5 years.
Your specific markers (path report, health history, and many other things) go into calculating that 'benefit.' It's based on much data that they've mined over many years, and the studies have been gathering information, over a long time span, that is now helpful for predicting (not guaranteeing!) the 'benefit,' which usually means the predicted % reduction of a recurrence, compared to the risk of recurrence if you're NOT taking the med.
Separately, you'll need to weigh the scary prospect of starting on an AI. I was super anxious about doing the same. It just seems so full of unknowns, since everyone's different. In fact, my first month of being on Anastrozole, I felt sleepy and achey. My onco said 'hang in there, it will be better in a few months,' and by 3 months it was MUCH better. I've been on it for 2.5 years. I do take a bone med, and that's working out fine, to mitigate the (usual) bone thinning that an AI can cause. I do feel a little more achey than before starting it, and I'd say that my arthritis (which I already had) has worsened a bit. Can I blame Anastrozole? I have no idea! These are SLIGHT annoyances, not huge problems.
Exercising 30-60 minutes each day and drinking A LOT of water and sometimes taking Meloxicam or Ibuprofen keeps me feeling perfectly functional and really just fine. I'd say that I'm tolerating the AI absolutely fine. There ARE discomforts, but they're very manageable for me.
There's a cheerful and positive thread on this site called Doing Well on Aromatase Inhibitors
https://community.breastcancer.org/forum/78/topics...
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Thank you both - very helpful. I see my PCP at end of month and I’m going to bring a NIH article I found that recommends that Hypothyroid patients being treated with Levo be kept at TSH of 2.0 as opposed to upper limit of 4.0 which is where I am. I’m going to try switching to taking at night. Then I’ll discuss a new prescription for Arimidex.
Castigame— your genetic comment is very interesting. My younger sister passed away from adenoid cystic carcinoma which is rare and supposedly not inherited. My mom had ovarian and I’ve had breast cancer. The one thing we all had in common is autoimmune thyroid disease. I know the connection with breast cancer hasn’t been proven but I do wonder.0 -
I am in my final 80 days of taking anastrozole. I haven't had too bad of side effects until the past year. I did develop anemia, early on, but an iron supplement took care of that. I had stage 1b ductal breast, a masectomy of my left breast. I did 28 days of radiation.
I had some joint and ligament pain the second year, but I was able to keep exercising. I had osteopenia before and it was okay until the past 6 months. My knees, an arch and my toes have constant pain now. My doctors tell me to take advil, which helps. But I have to watch how much I take, because of anemia. I have followed all my protocol for all of this time. I do my mamograms and 6 month check-ups. I fully intended to do all five years.
However, things went downhill rapidly this year. I am in good health, but I am in pain. I can't stand the pain if a fan or an ac vent blows on me. The pain from my joints and ligaments keep me from sleeping. I have maintained my weight while following the WW program.
While I know quitting at this time is my decision, I would like to hear what others have to say.
Thanks
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I just started Anastrozole June 1st after switching from Letrozole. Do the GI issues go away eventually? Stomachache is bothersome. Will be call oncologist tomorrow.
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Nsbrown54 - Never had GI issues with Anastrozole. Hope someone more knowledgeable of this SE will chime in with some words of wisdom. I think it is a good idea to check in with your oncologist. Positive thoughts coming your way.
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Jetcat,
At age 55, I had Stage 1a EP in 2013: lumpectomy, chemo (cytoxan & docetaxol), & radiation. I started Arimidex/anastrozole in 2014 and stopped in March 2021, after taking it for 7 years. My SEs were annoying but mostly manageable: Bone/joint pain or stiffness or thinning (did yoga and walking; took Aleve when it flared up. I took Fosamax for only first 4 years. My stomach did not like that, so I started taking a probiotic, which helped.) Round 2 of hot flashes (went thru menopause around 50); Fatigue (exercize & extra rest helped); Insomnia (5mg zolpidem helped); Higher cholesterol (kept taking Red Yeast Rice + CoQ10; would not & will not take a pharmaceutical statin); Weight gain; Mood swings/depression (started Bupropion/Wellbutrin in year 4. Felt so much better in less than a week!). I tried to always get the Teva generic, which reduced the SEs b/c it has less fillers than the others.
I've been on levothyroxin for about 20 years. I don't have any other health issue, except chronic allergies. I take a zyrtec or a claritin every day. When I took the claritin w/ anastrozole, it seemed to help the joint stiffness.
I've known some women who took anastrozole for a few months and then stopped it. I agree to take it for 7 - not 10 - years. I am a strong believer that we must be nice to ourselves and make informed decisions about what we will and will not do or take into our bodies. My attitude also affected how I felt, even with SEs. I've learned a lot in these forums. Each year, we learn more about how to approach a breast cancer diagnosis.
Jetcat, I want to end encourage you to continue to figure out what will work for you.
I appreciate all that I've learned from the women who have posted. ❤
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Hi Pink longhorn. I'm curious about the red yeast rice and CoQ10. Are they working? I've been borderline high for a while and my PCP keeps pushing the statin. I know arimidex will increase my cholesterol but really, really don't want to take a statin. Can you share your experience with the supplements?
Also, why were you encouraged to take an AI for ten years?
Thanks for sharing.0 -
Thank you PinkLonghorn- My cholesterol has also crept up and my PCP prescribed a statin which I haven't been taking. I need to do a reset on my medications because I want a regimen that I can stick to and I don't want to keep layering more and more pills. I absolutely have to take levo, and I think a bump up will help. I need to find out whether the AI would work for me since I've had both ER/PR+.and ER/PR-. Yikes! I'm committed to pursue what's right for me.
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