For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Not sure if this is the right form but is there a definitive answer for when to start taking an astrazole?.. before during or after radiation?..
Seems like oncologists are all over the map and there's no definitive sequence does anybody know this?
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horse2310, I don't have a definitive answer, but I followed my MO's advice on what to take and when. Does your RO have an opinion?
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No he said to start it whenever I wanted.. but it seems as though some people start before radiation during radiation and after radiation so I was just curious
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My MO had me start after rads, by 41 days. I don’t think there is an exact recommendation on days, she just wanted me fully healed. Tell your MO you’d like/need some direction on when he thinks medically it’s best for youto start.
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I started mine right after my mastectomy and before rads. I then started Verzenio after I was done with rads.
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MO did not give a precise start date, but I conveyed my wishes to wait around 3 weeks after radiation ended to start meds and he complied. I wanted to feel recovered from post radiation fatigue prior to starting in on the meds.
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Yesterday was my two year anniversary in taking anastrozole. This seems more important to me than my cancer diagnoses or surgery dates for some reason.
I am one of the lucky ones that doesn't have many side effects (knock on wood) and find it tolerable. My MO repeatedly tells me that I will be taking this for ten years, so I have 8 more to go. Seems like a LONG time right now, but these two years have passed fairly quickly.
Very thin hair and sticking knuckles when I wake up seem to be the worst of it. Some joint aches off/on too but I'm almost 59 years old and dealt with some joint aches before this mess, so I'm not sure what is related to the anastrozole.
I just had to memorialize this moment. I don't want to wish time away, but I can't wait until I don't have to take this crap anymore!
Thanks for listening.
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I am in my first week of radiation, but will be starting on zolodex injections soon (I'm premenopausal), followed by anastrozole. Really hoping I am one of those who "tolerate it well"! The aromatase inhibitor was touted as being slightly more effective than tamoxifen, but greater chance and more severe side effects.
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For those deciding on AI treatment I have used TEVA brand anastrozole with what I would consider to be minimal i.e. very tolerable side effects. I also found regular exercise helped immensely with joint pain--simply walking daily was sufficient.
Now that I am at almost my 5 year point on anastrozole my oncology provider just ordered this test for me. My risk of longer term recurrence came back very favorable so it is not recommended that I continue on anastrozole past the 5 years: Breast Cancer Index Test from Biotheranostics is a test that provides individualized information to help you and your doctor make a decision about extending anti-estrogen therapy beyond 5 years for early-stage hormone receptor–positive (HR+) breast cancer. The test provides two pieces of valuable information to help make a personalized decision:
- Whether or not an additional five years of anti-estrogen therapy is likely to help reduce your risk of the cancer returning
- Your individual risk of recurrence after 5 years based on your original tumor biology
Is Breast Cancer Index Right for Me?
Breast Cancer Index may be right for you if you are looking for more information to help you and your doctor determine your treatment plan beyond year 5, and if you:
- Were diagnosed with early-stage, HR+ breast cancer.
- Are pre- or post-menopausal and are lymph node–negative (LN-) or lymph node–positive (LN+) with one to three positive nodes.
- Are currently disease-free and want to know whether an additional 5 years of anti-estrogen treatment will help you reduce your risk of your cancer returning.
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Great info mysticalcity. Thanks for sharing
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Hi
I am also approaching the 5 yr. mark and I had my mind set on continuing the AI to 7 years. I mentioned this to the MO, and we will decide at my July visit which is 5 years.
Today, I just received my A1c result of 6.5%. I don't have the lipid panel back yet. These readings have been creeping up over the last year. Now, I wonder if I should take a break this summer and see where these numbers go, and just learn to live with the worry of recurrence.
I will ask about the BCI test, but it will depend on cost whether or not I do it. It does seem to be a useful tool.
There's so much to this, I thought I had my mind made up and now I beginning to lean on taking a break from this med.
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ctmbsikia, how big was the cancer that was removed and did you have lymph node involvement? If I was you, I would get a second opinion.
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Lilly, tumor left side 4cm. 1 sentinel node tested micromet 0.3mm and I have focal LVI invasion. 2nd sentinel node tested negative, so no aux. nodes were removed. IDC with lobular features. Mixed type cancer. LCIS lesion removed out of my right side. I had a lumpectomy and radiation. Although tumor size is on the larger size, my node involvement is minimal. I still have a few months to go. Still thinking..........what is best thing to do. Thanks
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ctmbsikia, node involvement makes it difficult. As one of our sisters said, the horse has left the barn
. I was recommended 5 years but as soon as the node was found positive, I'm told at least 7 years. Until then, guidelines may change again. 0 -
Hi Dulcia - You should be celebrating! I'm also at the 2 year mark. I keep telling myself 3-8 more years of anastrozole.
When I went on the anastrozole my doc said basically if you have bone problems, they could get worse. If you have liver problems, they could get worse. If you have heart problems, they could get worse. If you have cholesterol problems, they could get worse. I had none of these before the drug. I have all of them now, plus the thinning hair. I've gotten the cholesterol and heart issues under control by strictly restricting my diet (I cheat sometimes, but no one should be forced to completely give up chocolate). I read on another post that Biotin helped with the thinning hair. Can anyone recommend a brand? My joint pain has gotten sooooo much worse lately. Doesn't help that I also have EDS so the joints were always going to be a problem eventually, just wasn't supposed to happen yet (I'm 54). Has anyone tried anything other than Claritin for the pain? I'm trying to avoid pain killers as they can affect the liver.
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risab - I take Nature Made Biotin 1000mcg. It does OK. I did review the dose with my PCP who has a list of all my drugs, including OTC and runs a drug interaction checker against my meds. I’d been taking plaquenil for my joint pain before my BC diagnosis. Anastrozole is giving it a fight, but I try to walk or ride a recombine every day, which seems to help. (Helps with neuropathy too.) So far my cholesterol has been good, but I’m on on a low fat diet due to motility issues. Hope you find so that works for you.
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I use Renpure Biotin and Collagen shampoo. It's not expensive, and Target carries it. I noticed an improvement on hair loss almost immediately.
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Coming back to this forum after taking some months away. I started Anastrozole in April 2022. Mostly no SE, although some stiffness in my hands. In December I was hit hard - in part because my body now seems very sensitive to sugar and alcohol (and I had more than usual during the holidays. Joints so stiff and achy it was difficult to move and major fatigue. I went back to my acupuncturist for the first time since I'd started BC treatment in October 2021. Relief was immediate, with acupuncture and chinese herbs first for energy, then for sleeping.
I'm still very sensitive to sugar/alcohol - and still fighting to give them up completely. I also started more movement (Nia Dance and tai chi), and will start walking and swimming again if the wind will stop. My acupuncturist has been a miracle worker, and for those of you who haven't tried it, I recommend. Find a good, traditional acupuncturist, who understands meridians, etc. (I don't know enough to describe what - I just know mine was traditionally trained and is quietly amazing.)
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i have osteoporosis and onc put me on arimadex, gp put me on ibandorate (sp). Boniva brand name. Studies show it slows down arimadex bone damage. But After 12 weeks on arimadex, i had to get off it or risk falling. I went back to tomoxifen.
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Hi all,
I started Arimidex a year ago this past December and this month my ankles and toes have started the snap, crackle and pop when I move them. It's loud enough DH hears them when he's by me. I've noticed an increase in stiffness as well. I just had a Dexa and I still show no signs of osteopenia, but do show mild arthritis in my ankles, knees and hips. I'm 58 so that is not all that surprising to me. Anyway, I take Claritin to help and have been on and off with tart cherry. I'm supposed to be on this drug for life which I hope will be at least another 20 years. Sheesh, this plays with your brain, doesn't it?
Is anyone else noticing a popping sound in your joints now? I walk for exercise, but work at a desk job 8 hours a day.
I'm also noticing some serious brain fog. Also on Verzenio, so not sure which is causing it. Just frustrated right now. Sent an email at work this morning with a completely wrong date for an event that will be happening that I'm working on a committee with. Luckily i sent it to just one person, but it really is bothering me. What's next? Sorry, just venting today.
I'll be back to my sunny self tomorrow. I'm blaming this on the time change.
Amanda
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I've always had occasional noisy joints, but it really ramped up after I started Ana. As a massage therapist, joint pain is a big concern. I can't wait to finally be done with it all.
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I have been on Anastrozole for 9 years and I’m hoping to get off of it in a few months. Does anyone know if my weight will come off that I gained from taking it?
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Here's hoping! Good luck with the transition off and let us know what it's like!
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I stopped taking the drug in November 2022. I can’t say I noticed any difference. I’ve gained weight BUT I had surgery on a hamstring avulsion with bone in August of 2021 that set me way off on exercise. Hard to say if regular aging contributes to my aches. I do feel the drug prematurely aged me. But I am cancer free so there’s that. Best of luck leaving them behind
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hi all
Hitting the 5 year mark for arimidex in June. 59, osteopenic, cracking joints, brain fog etc but at the same time still thankful and have good quality of life. A break from the 💊 sounds wonderful tho. If I'm offered the 7-10 year plan I don't know what I'll do.
Good luck to everyone on your path in dealing with this crap. Deb
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Debal, has your oncologist told you about the BCI (breast cancer index)test? It will give you information as to whether you would benefit from extended use of arimidex.
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Debal I am also approaching 5 yrs. on anastrozole in June. I have osteoporosis and take Prolia which my last injection went straight to this year's deductible- it's so expensive! I don't think my MO knows of the breast cancer index test so I will tell him. If my insurance doesn't cover it, then I'm not doing it. I did do this calculator that was posted somewhere on here and I scored a 12% which anything over 10 is considered high risk of late reoccurrence. I have also read that hormone positive cancers tend to reoccur later as compared to other sub types. Here's the link: CTS5 Calculator (cts5-calculator.com)
Good luck. I feel the same, taking a break would be nice but if my stats show I may benefit, I feel like I could do 7 years. (I'm 61).
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Hi peregrinelady, yes I had the bci. I may call the company to clarify. I'm not sure I fully understand. NO for benefit for extended therapy. 4.9% risk score. The fine print mentioned 5.1 is cutoff. Not sure if that's the cut off from low to intermediate or from intermediate to high risk? I was intermediate back in the chemo decision before tailor x study. Story of my life- always middle of the road and in the gray area.
Ctmbsikia, my er was really low ,pr was neg is why I've always wondered if I'm getting any benefit from the pill. That prob explains why bci showed no benefit. I feel like I was about as close to triple neg without actually being. it's that recurrence score I'm a little confused on. I went straight to osteopenia on bone density and holding steady. My bones would like a break too. I hope the Prolia is helping you
I never wanted to break b4 the 5 year mark but I feel I need one if MO ok. It's so tough- I can live with aches pains if it is arthritis etc. I just want to know what it's NOT. Take care and thanks everyone. Deb
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