For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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B"H
Maybe some advice? I just started radiation treatments and anastrozole (don't know why but they started me on both at the same time), I am suffering from EXTREME fatigue.... truth is I haven't slept well since my BC DX in June, but this something very different! Seems to me that I can't already be suffering from fatgue from the radiation (have only had three so far) so I am thinking it is the anastrozole which I started maybe five days before the first RAD treatment. SO far I have taken the pill in the morning, and by ten a.m. I feel greatly fatgued... do you take it in the morning or at night? I was thinking maybe to switch and take it in the evening....
tnx
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ThereIsNoDespair, radiation can cause fatigue. Here it seems that usually AIs and radiation aren't started about the same time just so they can tell what is causing SEs. I take my Arimidex in the morning. But go ahead and take it at night. And do talk to your MO AND RO about the fatigue. I think you should not have extreme fatigue. Good luck!
HUGS!
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BH
thanks Peggy for ur hugs!!!0 -
We all need them. Glad I could send them your way, ThereIsNoDespair!
HUGS!
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When I took arimidex I took it at night. That way I could sleep instead of feeling fatigued all day. I also started it right before rads. It didn't fatigue me until the end of the 4th week.
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thereisnodespair,
I also started both Arimidex and radiation together. I did not have any extra fatigue that I could tell. But, it had only been a month since 8 dose dense chemos so I was still feeling the effects I think. I take my Armidex in the morning to avoid insomnia. Still no extra fatigue. I think we each have different side effects from this drug and my side effects have changed the longer I'm on it. Some have went away totally. I , like Peggy, suggest you talk to your MO since your fatigue is extreme.
Hang in there and hope you feel better soon.
God bless
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B"H
Megansgrandma
tnx.... it was terrible fatigue, but I took the anastrozole at night and yesterday i felt so much better, and i am so grateful it does seem to be that which was making me so tired. and i actually slept well (for the first times in months!) last night, so the fact that at least in the beginning the meds are making me sleepy is a blessing!its true how we all have different responses to treatment etc. - but STILL sharing here with women going through the same "medical experiences" even if the experiences are different for each - is a lifesaver.
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I take my Arimidex in the evenings too. Found that worked best for me.
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thereisnodespair, I slept really, really well on anastrozole. Now I am on exemestane, I still find taking it at night is helpful. I had a few weeks of insomnia but it resolved. Glad that worked for you!
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Thereisnodespair, so glad it is getting better. You are so right...it is very helpful to have others to talk to that have been there.
God bless
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I don't think I've posted to this thread before, but I'm wondering if anyone has tried compression stockings for joint pain caused by Anastrozole? I've been taking it since March with a 4-5 week break during radiation ending mid-June. At first the joint achiness was not bad, but I'd say since August it's gotten much worse. I see my onc on Friday and I'm thinking of asking her to switch my medication or maybe I just need to be more active? A couple people, non-cancer patients, have suggested trying compression stockings. Any experience with them specifically for Anastrozole joint aches? Thanks, Barbara
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BJSMiller, I don't know if it would help you, but some women find that regular Claritin can help with the joint pain. I've been mildly creaky for several years (so not the Arimidex) and it does help me. Sadly, it doesn't help with my allergies one bit so I can't take it (I really do like breathing
).HUGS!
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Bjsmiller---Ask your doctor if you can give turmeric a try. Once I started that my joint/muscle pain dropped significantly. Then when I swapped brands it got even better.
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I have no idea about the compression stockings but I know my muscle and joint pain improved immensely when I switched from generic brand Anastrozole to brand name Arimidex. I was at the point I could barely hobble around and my Onc told me to have a break. At the suggestion of my Breast Nurse when I restarted 2 weeks later I took Arimidex. Think my Oncologist was surprised at the dramatic improvement as he was ready to change me to a different AI. It's often the fillers that cause side effects. I take Calcium & Vit D and Magnesium. Dr said I could try Curcumin (Turmeric) as well but I haven't needed it. Hope you get some relief Bjsmiller.
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brutersmom I went for my blood work today and my white blood count was in the normal range. Keep me posted about yours
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BJSMILLER--I don't know about compression stockings. I don't think it is a circulation issue. I will share my own personal experience---I took Arimidex and specified I wanted the TEVA generic--it has different fillers from the others. At one point, I did a 2 week break and tried FEMARA - I only lasted 4 days on Femara and went back to My Arimidex. I am about to hit 3 years since my cancer was found. My feet and ankles, wrists and hands have started bugging me big time in the last 2 months. Today I had my six month with the ONC, and told me that it was the drug, classic symptom of "toxicity". So he said, because of my status and where we are in my treatment, to go off it for 2-4 weeks, then start back taking it every other day. to try and get me to the 5 years. We are both leary of the Tamoxifen and he said I've got the biggest bang from the drug in the first 2.5 years anyway. DO NOT DO THIS WITHOUT YOUR DOCTOR'S APPROVAL> My other theory is--people who struggle with Arimidex sometimes do better with a different AI. I know gals who tried to go from Femara to Arimidex and jumped back just as fast as I did in the opposite direction.
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We're very lucky that we do have AI choices in case one doesn't work. And those damned fillers do matter! Good luck!
HUGS!
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Thanks, Redheaded1 for sharing your experience. My onc did say she likes to start with Anastrozole, but we have other choices, so I'm definitely going to discuss it with her and see what she knows about the different brands, fillers, etc. or cost for using actual Arimidex. Moving around more does seem to help, but it's hard to motivate when at 57 I feel like my 84 yo mother!
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BJSMiller, I believe there is a program through Astra-Zeneca to get brand name Arimidex for a very discounted cost. If that seems to be a good choice for you, I'd recommend investigating. I know several ladies here have used the program.
HUGS!
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Yes, I just registered via https://astrazenecadirect.com and received 90 day supply for $90. (They send you to a online pharmacy called Eagle). If you are uninsured or low income, they have an application for free delivery. I'm starting on them on 11/1 and plan . My oncologist (who doesn't have BC and never taken an AI) scoffed at my questions about generics vs. name brand and assured me there was no difference between generic makers etc. and that if I have bad SE then she will switch me to another form. Meanwhile, I've spent hours and hours on this site and others and hear your stories and confirmations from your doctors and nurses so I'm inclined to believe that it can matter for many of us. My plan is to see how I do with Arimidex brand and if need a change then will try the Teva made generic before moving on to another drug variety. I also plan to say a little positive mantra each day (even if not yet convinced) when I take the pill to plant the seed this is to starve any errant cancer cells and that it will make me healthier!
Btw, thank you @BJSMiller about your story of 2.5 years is key time and worst case scenario then can drop dosage to get to 5 years. I had a doctor of oriental medicine suggest the same if necessary b/c its better than stopping altogether too soon. BTW, I've been researching various studies etc of late and came across an interesting study about to start by BC researcher Dr. V. Craig Jordan from MD Anderson (and key researcher who discovered Tamoxifen) with a theory that perhaps in the future treatments should be a time frame of AI for full estrogen blocking, then AI break and a short dose of 'estrogen surge' hormones to entice them out only to blast them again with AI estrogen starvation.
DISCLAIMER that I am not a doctor or scientist but intellectually curious and working hard to learn and share and question as much as I can so we can all survive this disease. I have young daughter about to enter puberty and now I understand how much of what she ingests and is exposed to over next 8-10 years will affect her breast cells post menopause (like me). I want her never to have to go through what we are all going through. It will take a village to put an end to breast cancer.
Keeping on keeping on from sunny LA x
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I just started my Arimidex today so will see how it goes.. my MO said I could change if it became a problem
The fillers in medications can make a big difference.. my husband took brand name valium in the blue pill and didn't feel well, changed to the white generic and found he was allergic to the blue dye... so if something doesn't feel right... the fillers might be part of the problem.. something to think about
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if MY MEMORY SERVES ME CORRECTLY, THE NON-TEVA BRAND GEN ERICS (MOSTLY MADE IN India)CONTAIN LACTOSE, WHICH IS AN ISSUE FOR MANY PEOPLE.
tHE TEVA BRAND IS MADE IN ISRAEL. I HAVE USED OTHER DRUGS MADE BY THEM WITH OUT ANY PROBLEM.
aND MANY GALS HERE ON bco HAVE USED THE BRAND NAME PROGRAM AND SAID IT WAS WORTH EVERY PENNY AS THEIR SYPTOMS IMPROVED GREATLY.
a GENERIC ONLY HAS T0 BE 80% IDENTICAL TO THE NAME BRAND, WITH THE DIFFERENCE BEING IN THE FILLERS USUALLY.
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Sophie, thanks for the update. Thatis positive. I see my doc next Monday. I will see what he says.
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jpBCfree, Could you send a link to the possible study Dr. Jordan is working on? I would be interested in reading about it. I'm curious too!
Bjsmiller, I've been wearing compression hose for ten weeks now since I had liposuction done to my inner thighs for fat transfer reconsrtuction to my breast. I really can't say that it makes a difference because I'm not feeling any side effects right now. I took a five week break from my Arimidex to heal from surgery. This was not doctor approved, two weeks yes, 5 weeks no. I was having joint pain and fatigue before that point. I started back on Arimidex September 1, and I'm waiting for the side effects to come back. I will let you know if the joint pain comes back while I'm wearing the hose. The break was nice. I'm planning more to make it through the next 5 or 10 years, however not such long ones
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Hello ladies! I've been on Arimidex for 4 months after switching from Letrozole. Many, many side effects including short term memory loss, rapid aging of my skin, joint pain, depression and massive thinning of my hair which, I know, in the big scheme of things, is not that significant but it troubles me more than I thought.
However, I am looking for some direction from the people that know the most, the ones in the trenches, all of you!
I am 60 and have osteopenia. (my mother had osteoporosis) The MO has ordered, twice, an infusion of Zometa, I have cancelled twice. Taking more meds to combat the effects of the meds I am already on and the known and possible side effects scare me!!! Although I have been to two dentists and one specialist and have had a CT on my jaw, no one can, with certainty, confirm why I have pain in my ear, jaw and neck. They are guessing TMJ. I understand osteonecrosis of the jaw is usually from a high dose of intravenous bisphosphonate.
I've been trying to get my head around other options and am asking for everyone's help,
One, aksing to go on Tamoxifin, which won't exacerbate the bone loss but of course, in studies, isn't as effective as an AI. I've heard the number 30% less effective thrown around but wondered what the exact percentage is for me.
Two, ask for an injection of Prolia instead of the infusion of Zometa.
Three, take an oral Bisphosphonate in addition to the weight bearing exercises and vitamin d and calcium as I am now doing anyway.
Thank you!! Marilyn
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Thanks, Suz-Q and I'll be interested in hearing if the hose make any difference later on.
I talked to my pharmacist yesterday and she said Arimidex would be $600 for 30 pills if cash, and she wasn't sure if my insurance would pay much, so I better check with them. jpBCfree, thanks for the link for AstraZeneca and possible help with Arimidex cost. I think it may be worth it if generics only have to be 80% of the original drug!
Martini, I started Zometa infusions a year ago and get them once every 3 months, in fact, I go tomorrow. I have not had any SEs that I can pinpoint. Hydration is key, as with all our treatments, and my nurse always makes sure to give me fluids after the Zometa because she says it can be hard on the kidneys. I also make sure they infuse for at least 30 minutes since I read from BCO ladies early on that SEs can result from too quick an infusion and some centers want to do it in 10-15 minutes. So far so good for me. If you're not in need of dental work, you should be fine for ONJ I think, but others may be able to speak to that better than me. My dentist was very concerned when she heard Zometa, and wanted to pull my wisdom teeth that never erupted through the gums in anticipation of them "someday" bothering me. I thought she was borrowing trouble to be so "pro-active" and I refused. She referred me to an oral surgeon, who agreed with me. I've always had pretty good teeth though and never had anything done besides cleanings and fillings.
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FYI some info I've gathered regarding above...
Zometa infusions (per my onco) are the only shown to not only help with bone loss but they also have protective ability to ever getting metas BC cancer of the bones (the most common place it goes). My onco telling me 1 every 6 mos for 2 years as even tho in 50s I have some osteopenia and I'm concerned about keeping bone health (breaking hip is serious stuff and often shortens life towards the end). Also, was advised by nurse that if/when I do it I can ask for slow infusion (one hour long) vs. 15-30 minutes and that helps lots withy flu like after effects. Agreed on uber hydration day before, day of, and day after. I'm still not sure I'll do it going to bone specialist with my dexascan in hand because I do think too many drugs can sometimes cause more problems than helps and Zometa is chemotherapy so powerful stuff. Plus I grind my teeth at night and worry about the osteoneocronsis of the jaw possible side effect as that is forever and not fixable by any drug. Someone asked about bisphosphonate pills and my Onco said pills don't strengthen bones that much and she didn't mention shots but seem to recall nurse said that shots don't offer the extra bone cancer protection that infusion offers. Check with your teams but that my understanding and I'll update as I research further...we have time to make sure right for your system and situation.
A couple other links I have found really helpful during this journey and that is www.nutritionfacts.org with not for profit (or selling anything) Dr. Michael Greger who has team of researchers looking at all nutrition studies results and Dr. G does little short videos about the compelling and reliable ones. I follow him on FB and find the little videos very helpful overall and lots of discussion about cancer..this month he seems to have focus on breast cancer and even though many varieties of BC, still great info on nutrition to support whatever therapies you are doing. Most docs don't discuss nutrition bc mostly not taught in med schools yet Hippocrates thousands of years ago concluded it was a most powerful medicine.
Related, I love the website www.foodforbreastcancer.com started 8+ years ago by a smart, research savvy fellow BC survivor and full of great lists of what to eat, what to avoid and links to underlying studies. She does offer personalized program after reviewing your pathologies and treatments not as a medical doctor but a really smart and informed person about the importance of eating well as we journey onward.
Suz-Q I'm trying to find underlying Dr. Craig Jordan research info online and even called him at MD Anderson but yet gotten an answer. I'm looking into what studies they are doing and seeing if perhaps I qualify to participate....part time job just to figure out how to get through it all...wish Susan G Komen could apply some of their billions into connecting us all to real time, easy to access information and comparisons of what is working and not working for all our individual systems and cancers including studies and trials and cancer centers.
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omg - I just looked at the date on the last page I visited on this thread and it's a full year ago! I'm nearly at the 4-year mark for arimidex and looking forward to counting down that last year. Really hoping my MO doesn't decide to recommend another 5!
I had some issues very early on (trigger thumb, fatigue, foot pain) but the trigger thumb resolved on its own, fatigue was cured with Ambien and then a C-pap device a year ago and foot pain continues but I attribute some of that Not constant pain, sometimes a bit achy and big toe joint on both feet has lost a lot of flexibility. Makes it hard to do lunges when the big toe hurts in the flexed position! Am currently in week 4 of a c25k plan and registered for the local turkey trot.
So.......for those of you who are new to this little white pill and wondering when the side effects will start and how bad they'll be, please know that for many of us the SEs were manageable and can ease up or resolve completely over time.
Hang in there!
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I had major joint pain to the point that my knees hurt so bad I looked like a 90 year old ready for a walker. Doing the tumeric and also organic ginger chunks twice a day, lots better now. Still sore and get stiff if i sit too long but way better than it was. I am going to ask for a different brand of the drug, would like to be able to stay on this one at least for awhile. Only been taking it since March and that 5 year goal is a long way off, don't want to try something else till I have to.
My husband does the ginger for his arthritis and it has helped him with pain & stiffness. Dr said there was no issue trying it.
Glad everyone seems to be doing well and hanging in there with the SE.
Take care and celebrate every day. : )
Love & prayers to all
Helen
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Helen, some women have found relief from joint pain by taking regular (not D) Claritin. You might give that a try, too. I found it help my normal morning stiffness but didn't help my allergies so discontinued it. Good luck!
HUGS!
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