For Arimidex (Anastrozole) users, new, past, and ongoing
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@MissouriCatLady....Thanks, I did well on Accord!! This new stuff is very bad...ugh 74 more days! I feel like I am being crucified 24/7. Note to self ask pharmacy who the supplier is before picking up rx.
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WhatjustHappened, if people say that to you, I think they are a bit rude, unsupportive and unfeeling. Sure, going through chemo is very tough, my son went through it and it was ghastly seeing him suffer, but I don't see any benefit in people comparing the two. Chemo is chemo, hormone therapy is hormone therapy, and they both have their awful side effects. You do have a right to feel bad.
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CindyNY, I've been on the Arimidex for about 4 months now, so I'm hoping I'm like you and the brain fog passes a bit. I do try to let comments roll off of me (I'm a teacher after all which can require a thick skin). It is nice to have a forum where at least I know I'm speaking to others who understand. Congratulations on a clear scan!
WorryThePooh, thanks for the supportive words. I think very few people know and understand what hormone therapy and what it's side effects entail- I know I didn't before my diagnosis. Is your son doing better now?
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I’ve been on Accord for almost a year. My MO said that his experience is that it’s slightly better for SE’s than other brands, but that everyone’s different. My stiffness and fatigue got better after 4-6 months. Drinking a lot of water and 1 hour of exercise helps me a ton.
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Hiking is right, drinking water and exercise helps. Carpediem - if you can't make it, have your doctor send in a script to Eagle Pharmacy and get some name-brand Arimidex until you are free for a refill. It will cost you $60, and we are all different, but there are less side effects for me. I have a bottle on my counter I am saving, just in case! Whatjusthappened - A friend told me that it gets better after a year. That gives me hope that I can get through this, been 6 months for me now. It is only my opinion, but the chemo was a breeze compared to this - and that is just my experience. I take a bunch of vitamins and continue to try to find the right "balance". I saw a photo on here yesterday, maybe I can go back and find it, keep your head up and smile and those folks that say things to you that you know better about. You got this!
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thanks to sas-schatzi for the photo. You know, in reading this, I tell myself, it could be worse, many times. I called to check on a lady I met at radiation and she is having so much more trouble than I am. I don't agree with everything on here. And yes, I do take too many medications! Ha! 18 pills a day! My knee hasn't been popping lately!
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Has anyone developed tendinitis from ALS? I went to physiatrist yesterday for a cording issue but had him look at my elbow. He said it was tennis elbow mostly likely caused by Arimidex!
He was very optimistic on its recovery. Told me to order a brace and he’d shoot me up with some cortisone ... said if I was going to get tendinitis it was the best one to get.
Arimidex the gift that keeps on giving!
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Yes to tendinitis first year on AI. Also carpal tunnel syndrome 4 years later.
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Trinigirl-
Something new to possibly look forward to.. what did you do for both? Any relief?
The Dr I’m seeing is a specialist that just works with cancer patients dealing with pain, mobility issues, and breast reconstruction issues. He seemed very positive about the tennis elbow!
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Mactaz, I take Effexor. Works great.
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Thanks InnaB2018. I’m still contemplating trying something to get me through this Except for my blues I’m doing okay on anastrozole I have lots of aches, pains and stiffness but have had that for years. I’m walking 5 miles a day, doing stretches as often as possible and drinking tons of water. I’ve kept my weight off, yea, and my hair is growing, slow but it’s growing. I was dead set against antidepressants but my mind is changing.
I have another four weeks before my OC appointment so I have some time to think through this. My OC did talk to me about other meds but I’m just not sure what to do, they all seem to say the SE are the same. I know everyone reacts differently, but I must admit I’m just tired of constantly having to try something different and waiting to see what new side effects I'll have, I want to move forward. Thanks all for your support.
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I was thinking about you last night, Mactaz. I totally relate to not wanting to try something else, it seems like starting at the start of the race again. A hairdresser friend of mine recommended this shampoo a few years ago, when I was going through menopause and my hair was falling out. I found it in the cabinet when my hair started coming back in. You're right, it sure grows slow! https://www.amazon.com/Avalon-Organics-B-Complex-T...=sr_1_17?keywords=biotin+shampoo&qid=1570203886&s=beauty&sr=1-17
I went to a breast cancer foundation event over the weekend, and a lady recommended pistachio oil to make your hair grow faster. When I try and look that up, I find recipes to make cakes!
If you have family you can talk to, I might suggest that, family or friends (us). I get down sometimes and have a good cry when nobody is home. Sometimes, I wish I didn't look in the mirror and see this person, that looks like a boy, that has all these wrinkles I didn't used to have. I'm sorry you are having to go through all of this. Hugs, Lisa
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Was at dermatologist yesterday for a skin cancer scare. Said something t him about my thinning lack of hair. He bent over to show me the thinning and bald spots HE has. That told me there is nothing really going to help.
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Arimedex along with Ibrance just been Rxed for me. Anyone out there with experience with this combination? Actually I quit Arimedex after SEs in 2017 and started Tamoxifen. So how do you keep your spirits up or confidence that treatment will work? I am close, but not there yet, to throwing in the towel. My energy is good, and I still enjoy the outdoors and walking my dog. The DR has not used the word recurrence or metastatic, she thinks each cancer is a "new one". ( 51 yrs at first Dx). 2009, Left breast (dense lumpy, right normal), BC. Lumpectomy, radiation, tamoxifen for 5 years. 2016 Left BC (new DR/clinic). Chemotherapy (did cold capping), bi-lateral, started anastrozole but SEs, so switched to Tamoxifen. 2 nodes removed left for both surgeries, negative. 2019 noticed swelling in R-arm. Lymphatic therapist contacted DR and said DR needed to see me since the lymphadema was very unusual, contralateral. Since then, CT scans, ultrasounds, biopsy, PET scan, genetic profile. Biopsy shows BC. Genetic test shows no known markers for some 20 markers. Pet Scan shows no mestasis. Anastrozole and Ibrance Rxed in hopes it will shrink tumor ahead of surgery. Also contacting research clinic to see if they have other treatments available. Posted this on 2 "recurrence" forums.
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I’m on ibrance/letrozole. Think it’s the same type action. Ibrance is EXTREMELY expensive make sure your MO connects you to patient assistance. Like over 12k a month expensive.
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Spookie OMG! 12k/month? Nobody can afford that on their own.
HUGS!
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Spookiesmom, I had to chuckle, my husband does this... whatever complaint I may have, he will say, yes, I've had that, and smile, just trying to cheer me up in his own way. You can try this shampoo, it is about $13 on Amazon. I bought 2 bottles of it way back when, 4-5 years ago, and the one I found the other day was still in the package. I wouldn't even know about it were it not for that hairdresser friend of mine back then.
BlueGirlRedState, I am sorry about your diagnosis. I don't know anything about Ibrance, guess it costs a lot of money. Cancer costs a lot of money. Your genetic test and pet scan didn't show anything, which is very good. I took TCHP and it shrank my two tumors down to nothing, so have hope!! We do have good drugs these days! It is good you are posting on different boards and will get responses from people that also are going through this.
How do you keep your spirits up, good question. I have tried different generic drugs and some are better than others. I try to remember to really enjoy my good days and it is okay to rest on a bad day. It is okay to sit on the coach and rest. Hiking Lady will tell us to exercise and drink water, plenty of water, both of which I need to work harder at. We are having a dinner this month with survivors. Perhaps this type of support group would be helpful, finding others who are going through it or have been through it to talk to. One lady told me on Facebook it gets easier after the first year. My doctor keeps telling me it gets easier, I sometimes wonder if he means it though. Enjoy each day. Sounds corny, I guess, but I tell myself that. My brother told me when I was diagnosed to find strength in God, if you are a believer. Many hugs to you, you are not alone. Lisa
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That’s why I said to make sure the MO connects you to patient assistance. My MO did, I don’t have a copay on it at all. $3.40 a month for the letrozole. My insurance thinks I’m paying the $600 plus, so I’m in catastrophic coverage now. That really helps.
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Spookie, I won't tell them otherwise. That's insane. You've got the right MO!!
HUGS!
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@MissouriCatLady Accord was working well for me. The new brand is not. I am hoping it gets better, is anyone getting Accord? I really can't afford to pay much right now. Putting a $40K roof on the house, paying cash. Then our property taxes went up. GRRR, we really won't know how much until November.
I don't post often, prayer for you all!
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I've been following this thread and the discussion of generic brands for a while now. I've been taking Teva, but this last time I had my prescription filled Walgreens game me Accord. I am hoping that the side effects are better on it and not worse. Anyone have a comparison of the two?
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CBK yes I developed tendonitis and tennis elbow back in June, also carpel tunnel syndrome.
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Whatjusthappened-
A while back I was on Teva brand, as many of us were. Teva stopped producing it or some other problem, I received Accord. I noticed very little difference after a week or so.
Someone had posted a link to compare the buffers and if I'm recalling correctly, Teva & Accord were the most similar.
When it was happening to me, the switch, I was a raving loonatic to try and keep Teva. Totally out of proportion reaction. So I get it - we know what we know and don't mess with my drug. I threw in the towel, took the Accord brand and I'm fine. If I focus on it - maybe my hands ache more now than then, might be the AI as a whole over 19 months, or the brand switch. Best wishes to you that you'll do fine too.
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MissouriCatLady - thankyou for the words of encouragement. I know many people "live" with cancer for years, keeping it at bay, but never gone. Reading "Anti-Cancer Living, Transform your Life and Health with the Mix of Six" by Lorenzo Cohen and Alison Jeffries. Somehow, I need to work on the "community" part of the "Six". I am active. I usually work out at the gym 5 days/week, and my dog makes me take long walks, preferably in off leash areas with lots of butt sniffing opportunities (for him, not me). I enjoy the outdoors and hope to get in more camping before winter sets in. I should go ahead and plan some of my "dream trips", such as rafting down the Colorado, Safari in Africa, both very expensive. Lately I have been trying to track everything I eat, mostly to cut down on mindless eating. Such as 1 slice of cheese for the meal, one slice for me...... 1 slice for the meal, and another slice for me. Usually I eat healthy, but just too much. I've cut down on sugar ( did not eat that much) and have eliminated alcohol. Getting too cold for beer anyways, but I do miss wine with dinner.
SpookiesMom - what and how we pay for health care/drugs/treatments is criminal. Today's debate focuses so much on the "health insurance" side, that health care and access to it, gets lost. I have health insurance, fortunately, because I probably would not be able to get it now. I was surprised when the pharmacy told me my cost for Ibrance was ZERO - cost for drugs has never been ZERO. The DR said she would send in the Rx after determining which pharmacy was best. She sent it to a CVS in Seattle. They will have to mail it, since I am no where near Seattle. I opted for brand name Arimidex from the Eagle Pharmacy in Florida, getting it directly from them $2/day, also mail order. Two years ago when I looked into this, my health insurance would have charged $7/day, I'm sure it has gone up since then. But need to call back to DR. She talked about Faslodex, which I assumed was one of the generic anastrozoles, and asked for something else. It sounds like it is not an anastrozole.
Ibrance users, the company that makes it, might offer financial assistance, or maybe some pharmacies really are less expensive than others? https://www.ibrance.com/financial-support-resources
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Missouri Cat Lady
I used that shampoo post- chemo and my hair grew in thick and fast! I was sprouting hair before chemo was over.
I don’t think it’s particularly color friendly so I stopped using it. But I’m going to check the label again next time I’m in Whole Foods and may pick up a bottle to use occasionally to stimulate scalp. It’s a good product!
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I’ve been on Accord for 11 mos now. My side effects seem to be lowered estrogen, not anything to do with fillers. So, joint stiffness, weakened thumb joints, some slower brain processing, stamina poops out mid afternoon if I have a super physically active day, WARM flashes which are not as horrible as the ones during real menopause. Sleep is fitful, but it has been for 15 years. The worst of the joint stiffness abated after 6 months, and now I feel just generally a little weird on my AI, but not horrible. I feel worse if I don’t do my 1 hour of daily exercise. I also feel better if I drink a lot of water every day.
So, I have a grumpy (inside) acceptance and a truce with it, I suppose. My MO said that Accord was a tad bit better than other brands, in his (very long) experience, and that usually, the sum total of difficult side effects due to brand differences was not longer for one than another bran, but differently tolerated by the patients, and so he wanted me to start with this one.
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Whatjusthappened - just refilled my 3-mo script for anastrozole. Received 1 bottal of Teva and 2 of Accord. Asked the pharmacist why. Was told Walgreens no longer carries Teva and I got the last of it. I'm a nurse and aware that all generics are not created equal. With Teva, my only side effects are atomic hot flashes (which wake me up, leading to little sleep many nights) and thinning hair. I am super-concerned about possible new side effects. Anyone experienced Accord anastrozole? Thanks. I'm not good with change, I guess!
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I'm sorry you lost your Teva, LinnyG. I might suggest calling Teva, 888-838-2872, and asking them where you could go to get a refill. I've done this, and they will give you the name of their pharmaceutical distributor to call and ask. When I called, I was told it is AmeriSourceBergen (phone 610-727-7000). Apparently, different pharmacies use different distributors. Actually, it was a Walmart pharmaceutical rep that told me how to do all of this. Worth a try, you might be able to find Teva at a pharmacy near you. I totally understand about the love of one generic!!!
My last refill was Accord and it has not been as bad as the others (Zydus, Breckenridge, and Teva, for me). I saw my doctor yesterday. I read that your vitamin D level needs to be above 30 to make sure you are getting adequate protection from bone and joint pain. I asked him to check mine (still waiting for results). He smiled and told me 80% of us have low vitamin D - I did not know that! I asked my infusion nurse about it and she knew it, she said "nobody goes outside anymore." I sometimes wish they would share more of this information. Thank goodness for this site, and others! Best wishes to you, I am going to call here and ask what my level is! Hugs, Lisa
P.S. CBK - I am glad that shampoo worked for you! My nurse told me once I finish HP (in November), my hair will grow faster. I am just thankful I have hair!!
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I found out about the D3 years ago when dx with fibromyalgia. I was at 17. Should be between 30-50. We aren’t outside as much, and if we are, should be covered in sunscreen. It only takes a minute or two to get all you need from the sun. Even living in Florida I was low, so those up north with less sun need to be aware. And it’s D3.
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Spookiesmom, you are right! Only a few minutes outside will do it! I called my doctor and they forgot to run the test! I will be back there in 3 weeks, we will do it then. On warm sunny days, I am going out that office door at work to walk, and soak up the sun, I had no idea. Thank you Spookiesmom.
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