For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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cherry, I've been on one of the 3 AI s for 2years. First two lasted4-6 months each. My digestive system is not happy. Have not had a normal bowel day. I also got so depressed I could barely get myself out of bed for work. I didn't have chemo or radiation. 2 weeks after stopping the AI I couldn't believe my depression was gone almost instantly, bowels returned to normal. Now I'm on anastrozole, and I have trigger fingers. Bowel stuff and fatigue. And I notice depression starting to set in. Osteopenia, hair loss etc. I've upped my exercise hoping that will help.
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After reading these posts, I'm pretty sure I'm going to stop the Anastrozole. I did not have chemo or radiation after a double mastectomy.....plus I had a complete hysterectomy 25 years ago so I've been dealing with massive hot flashes since then. These SE are so severe that I can't stand it any more.
With no breasts and no female organs....what's the point? Where would extra hormones go?
I had 2 very tiny (1/4" each) tumors in my right breast. Only one was hormone receptive.
I tried 2 other HBlockers and they were even worse.
Dealing now with Hot flashes, insomnia, nausea, mood swings, foggy, tired, the list goes on.
Thanks for listening.!
Jane
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Jane, sorry you are having such a difficult time with this. You didn't post your stats, but I'm wondering if you could get another opinion. Maybe as you say, the SE aren't worth it but you might have peace of mind if discuss this plan with another MO.
I am highly ER positive so no choice, but for me it has not been too bad, feels like normal aging most of the time, I don't even think about it much.
Good luck!
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Hormones are produced by your endocrine system all over your body, not just the lady parts. Your MO can explain your options.
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Mickey - I haven't had terrible SE's with anastrozole either. And I also am very highly ER positive, so no choice.
On another note - my oldest daughter lives in Franklin. Right down 495 from you! We are up there 3-4 times a year.
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Definitely want to second the exercise suggestion. Each of us has to decide whether we can deal with the risk/benefit/SE ratio for the drugs, BUT I am one who suggests you try more than one. In addition to bad headaches, I was a real b...... on Arimidex. Took a few weeks off in Oct. and started Femora. Can't believe the mood difference. Hair continues to thin but hot flashes have pretty much stopped. And I am building a great hat collection.
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thanks for all of the responses regarding SEs. I don’t think t I’m at the point of trying something else but at least I know it’s not in my head. Going with suggestions to beef up the exercise regimen and try to power through.
Jane, my BS mentioned Effexor as a way to combat the hot flashes but who wants to take a drug to help tolerate another drug? Aaaarg
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Wow, Snickersmom! We should meet up if you have time next time you're up this way!
Cherry,yes do try the exercise, really helps. Anti depressants do help some with SE's.
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I am already taking Wellbutrin for hot flashes.....been taking it for 15 years. It does help a little.
Thanks for all the responses. I guess I have to talk to my oncologist regarding the Anastrozole
Jane
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Mickey -We hope to get up there in another month or so - maybe in late April or early May. I'll PM you when I know for sure.
Ann
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Good luck, Jane!
Looking forward Snickersmom!
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Nancyjac, I have experienced nausea and extreme dizziness. Feeling unbalanced when I walk. Has anyone experienced this? I have only been on Anastrolzole for 25 days. I took my pill before bedtime last night thinking that might help. I went to bed at 10pm, didn't t go to sleep until after 1:30am. Will I be trading off dizziness for imsomnia?
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Dear Gaylecro,
Welcome to the BCO community. We are sorry that these side effects have brought you here but glad that you reached out to our members. Here is a link to a page on our main site with resources and additional information about Arimidex. Let us know how we can help you to best navigate the site. We hope that you will stay active, get connected and benefit from the support our members provide.
The Mods
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Gaylecro---When I started experiencing nausea and dizziness after starting tamoxifen, I tried everything but nothing helped. Then it was pointed out to me that these meds can be very dehydrating so I starting drinking LOTS of water and within a few days those SEs went away. I also added a probiotic which I think helped as well. Looking back I realized that my symptoms were identical to being severely dehydrating. Hope that helps.
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Thanks. I have been trying to drink more water. I felt like that might help. I have had 5 good days, however I woke up this morning with the same lightheaded feelings. I am going to give myself a few more days then start investigating other causes. I also feel a little out of breath when this happens so I am thinking a trip a cardiologist may not hurt.
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Gaylecro-
I have terrible bouts of dizziness with Arimidex I’m sure the dehydration factor does not help. I cut out all caffeine which has also helped with my once elevated blood pressure on the med.
Not saying that’s it, but the med is known to elevate blood pressure on occasion. But even with my blood pressure normal I still get the dizzies.
Let us know what you find out. I have not been able to get to the bottom of this. I do not have nausea associated with it.
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I'm feeling a bit grumpy about my finger neuropathy. After 3+ months on Anastrozole, I feel like calling it Nasty-zol when I am especially impatient. The feeling of being "asleep" crept up on my fingers and hands during months 2-3. It's worst in the mornings, and by moving my fingers around a lot and using my hands, I seem to get more feeling again. It often awakens me at night, and happens whenever my hands are still for awhile. Shaking them awake again has become a constant tic. I have to flutter around my hands quite a bit---I probably look nervous or possessed, or like I need a cigarette! Not a smoker.... I am a pianist, and I play classical trio music with a cellist and violinist quite often. So far, I can still play, and the limiting factor to my music is failure to practice enough, not my AI! But, I wonder if this will worsen, and I wonder if I'll continue to adapt to it.
I do have stiffness when I move again after sitting for awhile, but exercise is helping that recede. The stronger my muscles are, the less my joints complain.
None of this is a Deal Breaker, but I feel constantly challenged to Get Used To new inconvenient things. Weird-feeling breast implants + numb-ish fingers + cranky joints = the ongoing conflict between GLAD TO BE ALIVE and THIS IS NOT FUN.
Well. Now I feel better. Venting in a safe place is always helpful.
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HikingLady,
Boy do I hear you on the constant challenge to get used to new inconvenient things and new ways your body has been diminished. Sounds like you have the right two things in opposition, because GLAD TO BE ALIVE always wins if I can get back to reminding myself of that.
For others experiencing hot flashes, I've said it before but acupuncture did miracles for my hot flashes, and I was so glad to not need another drug in the mix.
Hugs to all!
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Seeking help with a recent issue- I took Anastrazole for first time last Monday before going to bed. I woke up at 3:30 am the next morning with a horrible headache and upset stomach. I called my MO and his nurse told me to not take anymore and that we would regroup when I see the MO again in 3 weeks. Anybody with a similar story? I’m worried I won’t be able to tolerate the AI and beingER+ PR+ it’s pretty important for the long term.
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I've been on it for about 18 months. Fortunately, my side effects aren't that bad. I take my Anastrozole in the morning. The only time it bothers me is if I don't have any food in my stomach. Then I will feel a little queasy. My biggest problem with it is the darned Buddha belly. I do take Zoloft (diagnosed with PTS) so my mood swings aren't as bad as they were right after my BMX. Sometimes I have hot flashes but they are short so I can deal with them. Have you tried taking the Anastrozole in the morning? Maybe you need to have food in your stomach when you take it.
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Hey keepmovin,
Had the same stomach and headache problems that you did when I first started arimidex. The stomach ache went away after a few days. It helped to eat saltines or other crackers, just a little something in my stomach, including in between meals. Hey I can always diet later.
I started with a quarter pill for a few days, then half a pill, etc. Would they let you try this? I tried this after checking with the pharmacist, yes it was ok to split my pill.
The headache is very slowly lifting. It was killer the first few days. I'm three weeks in, and now it's tolerable and treatable with either tylenol or advil. Some days I don't take either one.
My medical team says try it for three months, and then come see them. So apparently they think the side effects will continue to decrease over that period of time.
Good luck and keep us posted.
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After three years on, I was told to stop as the bone loss was worse than potential continued benefits. In the three years I have lost 20% cummulative on my dexa scan.
I have been using the Eagle Pharmacy mail delivery of brand name arimidex and last week before this news received a new 3 month supply (three one-month sealed from the manufacturer containers).
If someone could use these, PM me with your address.
Alternatively, if you know of a charity that supplies meds to women in need, please let me know. The local free clinic says it doesn't start women on a 5yr regime of something this costly and doesn't give folks 3 months without a source to continue.
Best, TT
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Egregious - What were your deciding factors for going with Arimidex? I'm kind of leaning that way.Are you also on a bisphosphonate?
I'm meeting with my MO again on the 28th. I need to make up my mind which path I'm taking by then. So far I've been going around in circles. There's no right answer, I'm just trying to decide the course that feels like the lesser of multiple evils. 😶
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FaceForward, I went with Arimidex because that was what my then-MO recommended. He said it had been around the longest with the most studies on it (this was 4-1/2 years ago). I take it in the morning, just prior to breakfast. I *am* on a bisphosphonate (Fosamax) and have had zero issues with it. I have had no issues that I know of from Arimidex. I take regular Claritin for morning stiffness that I had prior to all this BC journey and it helps some. I will be discontinuing Arimidex in October after 5 years since my now-MO says that with my stats I should be fine without it and he thinks that my bones will be happier. I totally trust him and that's what I will do. We each have to decide what is best for ourselves. I followed all the recommendations of my BC team.
HUGS!
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I have five Arimidex bottles, never opened from Eagle Pharmacy as well to give to someone. PM me if you need me to send them to you.
Susan
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so happy for you! Just started my
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Hey FaceForward,
Arimidex is the recommendation of my Stanford-based oncologist, who showed me stats on how it could reduce my risk of recurrence from 4% or so to 1%.
I could say, feeling lucky enough with the 4 but would I want to go through this again, knowing that I didn't do everything possible to avoid it? During treatment I met a woman my age who was there for recurrence. That scared me. It had been kind of theoretical before meeting her.
The first two weeks on the drug, even at my little quarter and half pill doses, were very hard. But I am in a pretty good place now after three weeks. Even if the SEs don't improve at all I am willing to do this for five years. And they assure me that things lift throughout the first three or four months.
Am currently not on any meds for my bones, but I sure did get religion for daily exercise when the first bad density test came back two years ago - midrange osteopenia, not the full osteoporosis. So two years ago I started walking a half hour a day. I get tons of milk and yogurt and take a Vitamin D3 supplement.
My more recent density test, before starting the AI, showed stability in my spine and hip, but deterioration in my femoral neck. So now I'm doing exercise twice a day, the new ones are weight training for the femoral neck and a few 'girl' pushups to strengthen my shoulders. The doctor said the AI might take a few percentage points off my next bone density but hopefully this level of exercise will help me push back on that a little.
The meds for osteoporosis are improving over time. If I need them, I'm willing. Feels like I lost several months of my life to this cancer and I'm doing what I can to keep it from happening again. The whole package - eating better, almost no wine, exercise, AI, followup mammograms.
Good luck with your decision, and keep us posted!
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Hi Keepmoving, I see you got a lot of responses but thought I’d share. Last week was my third week on it. Besides being moody and tired, I’ve had migraines with vomiting, diarrhea almost every day and from Friday to Sunday, a pain in my groin so excruciating I couldn’t dress myself or go down stairs. Soooo weird. Ended up taking my leftovers meds from surgery. Strangely but thankfully I feel fine today. My MO did not want me to ease into my full dosage. My plan is to suck it up until next appt. in April. Good times
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Faceforward & Cherryi3 - I'm going on 1 yr of Anestrozole. The beginning was rough. Mood swings, brain fog, hot flashes, insomnia, a full mix of crap. But after 3+ months on it, it settled down. I take it at 12:30 AM, night owl, and that may have had an impact, but I haven't chaged the time.
I still get hot flashes but they're light in comparison to friend's I have who are not on any AI. They're doable. And I still might get a wake up for no reason every 6 weeks or so. But it could just be my age, who knows.
You'll get through this. We're all stronger than we know. Best of luck.
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Thank you to all who responded to my Arimidex question. My "team" (surgeon, RO, MO, Bone Doc) all work very closely together. They're always up to date with the other dr's latest updates, recommendations, etc. They are great communicators and I do trust them. It's reassuring to know that we're all on the same page, all the time. They all include me in all treatment decisions. The issue I'm having now is that there really is no clear "best" decision on this. They ALL Suck! Sigh... I definitely have to go on a bone builder of some type. That's bothering more than the AI decision. I'll update here once I figure out what I'm going to do.
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