For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Hi Ladies: I appreciate all your posts. My lower back has been bothering me a lot the past few days and off and on over the past month. Never thought it could be a S/E of arimidex (been on since 7/25). Just kept thinking it's my achy back. I go to the MO in about 2 weeks. Will ask her about that. Am taking calcium, multivits, as well as extra D3. I am tired too! I agree with the other gals: Just want my old life back, but am just happy to have what I have. Truthfully...I consider myself lucky to be alive and there's not a day that goes by that I am not thankful (hurting, but thankful!).
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I took Tamoxifen for my first two years and about 6 months into it, I started having headaches that would sometimes last for several days at a time. My onc didn't want to give me anything and referred me back to my regular doctor. Luckily all I did was email him and ask for help and he called in a prescription for Propranolol. When I picked up the prescription, the staff at the pharmacy went on and on about what great luck they have had using this drug to relieve headaches. I sure didn't want to take more pills but when you can barely function because of ongoing, slamming headaches, you'll try just about anything. Still have a few headaches, but it is nothing like before. Whew!
My painful, stiff knees were much worst on Tamoxifen, but the Anastrozole probably hasn't fully sunk it's teeth in. This is only my second month on Anastrozole. What was really wonderful was that first week off the Tamoxifen. I felt more and more normal each day.
I have a weird patch of skin too, but mine does itch. Sleeping on my back is pretty much out of the question because that really ramps up the itching. In the evening, my back tingles and has the weirdest sensation. I don't know what to make of this and I really don't have anything to show a doctor so I just keep hoping it's a SE.
Recently started taking my Anastrozole in the morning and I think I like that best. I have a difficult time getting to sleep and I think the Anastrozole may have made matters worse.
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lindy my NP told me to take the Anastrozole in the morning for that very same reason.
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saw the Onc's PA today. will still continue with the Anastrozole and take Aspirin or Tylenol as needed for headaches. we're hoping the earache is really coming from the dental work that has been happening since mere days before began this med along with the Lupron.
for any future surgeries that aren't emergencies, I'll take some kind of med to avoid the hypercoagulation that happened with the last surgery. for right now, we're working on the assumption that mine occurs due to provocation. if it occurs spontaneously, then things will have to change about treating that problem.
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Oh, gals,
I read the most recent posts and my heart went out to all of you. I did 2.5 years of tamoxifen, followed by 2.5 years of Arimidex. While I was on the AI, I remember getting out of bed to walk to the bathroom in the morning, was, "Ow. Ow. Ow. Ow. Ow" with each step. When I came from the bedroom to get my coffee, my husband told me he had just watched be go through ALL the phases of Darwin's evolution of man... From knuckle dragging on into upright walking. LOL, really! It was SO true!
I remember sitting in business meetings in air-conditioned rooms, while the sweat rolled down my arm and dripped off my elbow... and me, trying to act nonchalant!
Well, I got through it. I have to admit, though, that when they offered me a clinical trial, free meds for ANOTHER 5 years of AI... I had to say, "Thanks, but no thanks." I wanted to build some memories with my family that didn't involve me chugging pints of cold water! DH was willing to put a tiny refrigerator next to the bed so I'd have cold water all night!
Hang in there! (((hugs)))
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Thank you SillyMama for your validation! Like all of us, I dealt with the diagnosis, I survived the surgeries and I stormed the weather of the chemotherapy! BUT I had NO IDEA that this would be the worst part of my treatment..., the AI,(Arimidex)..., I want to cry everyday.., but I stay strong because those I love.., my supporters.., have no idea that this is the absolute WORST part of my journey thus far. The SE of chemo subside. The scars from surgery heal. But the PAIN from Anastrozole lives on in my joints EVERYday! I try to remain active. I power walk and it HURTS! Then I get an endorphin surge but the next day I feel worse! I just don't know what to do! I am so sad that I have to live this way. I want to remain positive because that's what my family, friends and colleagues have come to expect of me, but I'm on a downward spiral..., I want everyone to understand that just because treatment is "done" does not mean that I am not suffering! I just don't know what to do..where to go.. or how to feel better. I am so uncomfortable, all the time......... Aaaagggggghhhhhh!!!
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C-squared--Good for you for such a great attitude. Not curling up in a ball and crying, "I give up!" Wish I could bottle up some good feeling days and send them your way. Love and hope are sent your way. Anastrozole has been kinder to me. (But I have a brand new, sudden ouch/bump that I'll be asking about next appt. Hmm.)
SillyMama--Love the Darwin analogy! (Been there briefly, but never had presence of mind to label it cleverly.) Wishing you well, too.
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Skittle~ Thank you so much for your kind words but I can't seem to find the "great attitiude" that you refer to..., I am so on the verge of "I give up" and in some ways WISH I am not a survivor. Anastrozole has not been kind to me and cancer sucks! I never felt this way until now. I could deal with the surgeries, and the chemo..., and I am having SUCH a hard time dealing with the permanent pain!!!
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C-squared - Poor you. It must be miserable. Has your doctor been of any help? Does he or she understand what you are experiencing? Can you switch to something else?
It's funny how once we are past radiation people all assume we are fine. From posts here, it's apparent that not everyone is "fine".
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I am truly grateful I don't have those horrible SE many of you have. But I figured that my stiff knees are probably a result of the Arimidex. And I had thought it was just old age creeping up on me. When I see my onc in about 8 weeks I am going to ask her about it. Other than the chemo I had been weathering the drug regimen ok - just some hot flashes etc, so I never really looked through the paper with the warnings that comes with each package. This forum really gave me food for thought. Could this drug also cause tendinitis(or aggravate it) of the wrist? You mentioned trigger fingers, and tendinitis is not that different.
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Newflash, I am back. Sorry, it took me some time to wakeup. I wanted to tell you all that I am happy in my decision, not to take Arimedex again (for myself). Just this last week, I have felt like I use to, before Chemo. I am cleaning out everything at work, my work load has doubled at work. I cleaned out the refrigerator, all the drawers and closets within two days, plus vaccumed the house and did my laundry. I told my co-worker....
I'm back). As far as the nails. My nails would detach, if I cleaned under them and it has been two and a half years since Chemo. So I stopped cleaning under the nails with tools, only brush them, purchased "Silica" from the health food department and you ought to see my nails. It has took about nine months, but my nails look healthy and beautiful again. I find not to push the cuticles back around the frontage of the nails, only push the back of the nails, with your own nails or with a ink pen cover (sterilized)...use something soft and gentle. Don't use anymore of those boarded emory boards (sandy things) or the wooden cuticle sticks...they tear up the nail bed and I think gather germs in them. Only use the metal file's and sterilize them. Again, push back only with your own nails or something soft and firm.PS: I don't know why I am not getting emails notices from the Breastcancer.org when people reply on our posts. It makes me miss out a lot.
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c-squared...my heart goes out to you...have you tried generics?..They say that it is the same med-wise but that the fillers are different and to many, it made a huge difference. Just a suggestion. ie: aromasin?
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C-squared I know last month when I told my NP about my SE on anastrozole (not too terrible but I hate the stiffness and I do keep moving). She said to me "doesn't sound like your ready to switch to another drug yet." You may find that some of the other AIs are not as bad. Joan on IL Ladies thread switched a few times. I believe she is much better. If your onc hasn't discussed the possibility of switching I think it's time for a 2nd opinion. BTW I was more scared of taking this drug than chemo… and I told my onc that. Few months of chemo, yes I can do that. 5 years of anything! Besides being married for 18 and living in my current home for 10 I haven't done anything for 5 or more years.
HopeFloats my nails are still some what lifted, very brittle. The dermatologist gave me some med (Urea) that has flattened them a little but still lifted and brittle. Is that what the Silica improved? Also I use a glass file. Also much finer and can be washed.
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Saw my BS yesterday; I love her. More helpful than my MO, also a woman...who is very rushed and I get the feeling that since I declined chemo (oncotypes 6, 15) and had a mast, she isn't too interested in me.
BS asked about my AI, which I am finishing the 3rd month on, and I mentioned the stiffness/aches and she mentioned switching to another brand. I'm not ready to do that yet, and am upping my OTC main meds (only taking 200 mg ibuprofen and a baby aspirin..now adding a tylenol before bed when I take my Arimidex).
My point is, a BS readily suggested changing after only 3 months. Your MO should be on top of your pain issues....but I guess we all have to push them.
If you haven't already, check these theads for the other things to do, ie taking extra D, tumeric, raisins soaked in gin, etc. Don't skimp the pain meds, either. You will get through this, one way or another!
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Actually I would be careful of the pain meds. They can cause other issues like ulcers in stomach etc. You need to discuss with your doctor how safe these are for you as an individual to take on a long term basis.
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Wow. I'm glad I stumbled back onto my breastcancer.org site. I haven't been here for so long... you know, pretending "it" never happened... I've been on Arimidex since Friday, April 24, 2009. I'm sure they switched me to Anastrozole since 2011 or thereabouts. I don't remember that part. You know, in Jan 2010 I was a real slug, and my sister coaxed me to climb these long stairs to the top of this cliff in Waikiki ~ anybody know it? I didn't think I could walk to the place from the hotel, much less climb all that way. But I did it. About three weeks after my trip to Hawaii I was in the shower and noticed I had no feeling in my lower left leg. Still to this day there is tingling and now my left knee is swollen and painful. I never even thought to connect it to the meds. I wonder. As for exercise, there is only one copyrighted exercise that was designed for the feminine body - called S Factor. Most women know it as pole dancing, but it is also just a mild form of feminine circular yoga/pilates movements. In honor of breast cancer awareness month ~ Sheila kelley chose to launch a video of breast cancer warrior Diana Schlobohm, a NY S Factor student who was Dx'ed Nov. 2011. This vid was taken 6 days post surgery. And I cry every time I watch her beauty. Because we know the pain.
http://youtu.be/Qz3V9M9gquo. You are welcome to share it from sheilakelley.com0 -
I should have made it known that I have not (yet) had a discussion with my onc about the discomfort I'm haing associated with the Anastrozole. I'm confident that he would be responsive, if I had. I'm just trying to give my body time to adjust..., get more active (back in shape).., and up the calcium, Vit. D, etc. I'm not one for the pain med route as this will be a 5 year venture.
Thanks all!
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C-squared - the manufacturer of my Anastrozole is Sun Pharma. I got it at Costco because I have to pay my own meds - $50.00 for 3 months vs. $300.00 at Walmart. Anyway, I have a little bit of discomfort but nothing like you describe. I know many people who have changed manufacturers and it helped them.
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C-squared, I found my body kept having to adjust and it seemed to go in cycles. I'd feel ok on the arimidex and then I'd have a couple bad weeks and want to change or quit altogether. But then by the time I was back for another appt, I'd be feeling a little better again so I decided to stay with this one drug and so forth. So maybe give this one a little more time, but if things don't feel better then ask to try another AI.
I'm a little hesitant to ask to switch now because at my last appt my MO suggested I switch to Tamoxifen. I was surprised at that. I thought the AI was the preferred choice for post menopause women but apparently they put some on it to help with bone loss. Anyone else have their onc mention Tamoxifen as an option?
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Costco also sells Teva brand but it must be ordered. I prefer Teva because it comes frome Israel. Sun Pharma is India. I try to avoid meds from Asia.
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throwing it out here although have no doubt it's already some where on a thread. what to do about constipation from Arimidex? that's what I believe it's from. doubt it's from the Lupron.
already have been taking fiber on purpose.
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C-squared... When you see your dr, you might ask about the value of glutamine. My daughter worked in cancer research as an undergrad (about 7 years before my diagnosis) and the research was truly promising. It has no taste, can be mixed with anything --powder, not pill-- and may offer you an avenue of healing. When I said great attitude, I guess I did not express myself well... I could read your pain and frustration and fatigue from fighting. And I think anyone with the persistence of spirit to power through all that to sit down at a keyboard to reach out to others to share stories, bring comfort, ask for help... that takes (to me) a great attitude. You stay strong for those you love. Let them be strong for you, if need be, ask them to be strong for you. It's your turn to rest in someone else's care and concern. It's your turn to let colleagues pick up the slack. It's your turn to be able to say you're tired. You have earned, more than earned, the respect and support of those around you. We have been conditioned not to ask for help. Women are the wonder-creatures of the universe somehow. Supermoms, supercareers, supersupporters. Well... humbug! Let someone who loves you know how you feel, so you know you can survive the pain with that safety net/safe zone. There's no shame in falling on others when you've been through so much. (Makes me think of a country song--If you're going through hell, Keep on going, don't slow down, If you're scared, don't show it
You might get out Before the devil even knows you're there... ) Pain is a relentless burden that changes the way we think. I hope your dr will suggest a quick and successful solution for you. Phone Monday if you find your struggle beyond your coping. The health professionals don't expect you to suffer in silence.Love to you and prayers for lessened pain.
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Galsal I have IBS so constipation was always something I needed to deal with. I take Nutra Flora daily. I find the days I eat a yogurt too its even better. The Nutra Flora is like a stool softener.
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Galsal - my MO told me to take Calcium with my Anastrozole. She forgot to mention that calcium can cause constipation. That's why I always take it with a magnesium supplement.
Sometimes you have to experiment with amounts....if you get the opposite problem, you know you've taken too much!
I also take a probiotic every morning.
ETA: AND - stay well-hydrated!!!!!
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Prunes!!! Great for the bones, great to prevent constipation too!
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harvest, try fish oil. make sure it's mercury free. it's helped me tremendously when there were days that I could hardly get out of bed
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This is my first post on this thread and I am happy to have found it. Sorry, but I haven't read all the way through the posts so if my question has been asked already, I apologize. I started taking anastrozole in June and had no noticeable side effects for the first few months except for a few hot flashes. Well, as of the past month I am having hot flashes more often, am gaining lots of weight (ugh!) and I have developed pain in my joints, particularly in my knees. I don't have an appointment with my MO until the end of November so decided to e-mail him regarding my painful knees. He promptly replied that the joint pain is probably from the anastrozole and added that the pain should get better in time. So my question is this...did anyone experience the joint pain getting better the longer they took the anastrozole? I would really appreciate your input. Thanks...Linda
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Thanks for the suggestions. Prunes are out, can't stand them. Love plums though so go figure. Interesting about the Magnesium. No doubt a probiotic certainly can't hurt. Seems like I take meds left and right these days - borderline hypothyroid, borderline diabetic, borderline low vit d, antidepressant, sleep help at times, etc. I too have IBS although almost never on the constipation side of the spectrum. Ironically, when I was some what recently taking Calcium it didn't cause any constipation.
Good grief, all this talk about things we never thought we'd have to bring up.
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linnyhopp...welcome!
As you read through the replies, you will see many of us taking Arimidex also take a daily Claritin for the joint pain. Most of us started taking it because of the pain associated with Neulasta and found, because it eased the pain, tried it with Arimidex as well. It seems to work. It is the 24hr med with just the antihistamine and NOT the one with the decongestant. It seems to work wonders for many of us. I quit taking it a few months ago because the pain stopped but would take it again if it comes back. Please check with your MO first though.
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linnyhopp My 1st 3 months of Anastrozole I had no SE and a matter a fact my minor hot flashes from chemo seemed to go away. I had stiffness during chemo so for me I had an improvement and even more improvement once I stopped Herceptin. I'm about 20 months on Anastrozole and I do have some stiffness but I exercise every day. I find the days I'm inactive much worse.
I am about 4-6 lbs heavier than I was a year ago but I'm not so sure this is from Anastrozole. I think this might be normal, you are now in chemo/menopause stuff. Also now that I have larger silicon boobies I attribute a 2lbs increase to them
Granted some women do put on weight with it.I know my onc made sure my vitamin D levels were in the right place before I started. She told me women that have low D seem to get more joint pain… so be sure to have that checked if it hasn't been checked already.
My hot flashes are minor but when I do get them it's because I've eaten spicy food. I find certain pepper is worse than others. Kim Chee is a killer but I love it so I deal with the flashes at 4am. Still not as bad as chemo but just enough to wake me up.
If the stiffness is bad enough that it is impacting your life you need to discuss this with your onc. Many times they will switch you to a different AI and it will get better. That said your body might just have to get used to it as your onc indicated. Everyone seems to have a slightly different experience on these meds.
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