For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I'd been reading here too, before Lago changed. I wasn't convinced, thought it was a bunch of hooey. Then when I got soooo bad I could barely walk, and took a 30 day vacation from it, my eyes were open, and I got the TEVA.
I talked to a pharmacist from India, he basically said the mfg. conditions are less than ideal, they clean up their act for our FDA inspection, then it all goes back to not so good
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When I was having terrible SE's from Tamoxifen & other AI's I was taking, it turned out to be the fillers, not the actual drug that was the problem. It didn't seem to matter where the drug was manufactured, but what they put with it. I am quite lactose intolerant & most of the fillers include lactose. In the cases where there was quite a bit of lactose filler, I had terrible joint pain & soaking night sweats.
The BC Cancer Agency pharmacist did a lot of research on my behalf to get me meds that had the least amount of lactose in them. This info may help some of you -Dee
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Spookiesmom, I had already had trouble with one other medication several years ago because of its fillers, so I believed what the gals were saying.
GG27, which brand did you find that works for you?
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Peggy, I edited my post above because I didn't look at my packaging, I only looked at the pills against the link that Lago posted. Mine are from Taro Pharma in Ontario. They do have a very small amount of lactose in them which has meant that I can't have any dairy anymore, ( no more ice cream, sob...) but it's better than the alternative! Cheers! Dee
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Dee, didn't realize there was an Ontario version available (wonder if it is in the States?). That's quite the sacrifice - no more ice cream. But totally agree - it's worth it. HUGS!!
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When I was on Teva Anastrozole I would make sure they gave me Teva. I did have it written on my records but once Costco tried to change it on me. At CVS I would have to order it at least a day in advance.
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BTW my pulse the day of my BMX was 65. Once I started Anastrozole I noticed I was well into the to high 70s. Ever since I switched to Exemestane my pulse has been around 67. Just another SE I had that I can attribute to the Anastrozole.
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Peggy, I didn't realize it either until I googled them. Because we get our meds free directly from the Cancer Agency & I wasn't having any problems with it, I never thought to look them up. It's on my chart "no lactose" and the onc did warn me that it had a trace amount. I'm afraid it's just enough to put me over the edge as far as ice cream, even taking 3 Lactaid, I still am sick.
Lago, I've noticed that my blood pressure is up since starting anastrozole. I always had quite low blood pressure. Haven't thought about my pulse.
Cheers, Dee
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I haven't noticed much change but I also haven't paid attention to my BP or pulse. I'll check for awhile and see what's what. My normal BP is low also. But the last 10 years I've developed "white coat" syndrome. Dee, sorry you have to give up ice cream. I don't do well with milk products either but for some reason I don't have an issue with cream (which I put on my cereal and in my coffee) - go figure?!
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BP hasn't changed much
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I've been off the Anastrazole since the 19th of December. I have had one ear episode since stopping it , and it was at my computer (where I first noticed it happening. Going back on when I hit day 15 without any. Got a horrible cold right now that I've had a week on Wednesday--went to "Prompt Care" today and waited 2.5 hours to be seen (lots of flu and colds ahead of me). Nicest Italian Doctor told me I had moderate fluid in one ear and more in the other, looked up my nose and said WOW, YOU ARE CONGESTED===gave ,me a Z-pak and a steroid and said if I hear the first little crackle when I breath to get right to the doctor, but my lungs sounded pretty good.....Have a tendency to get pneumonia and I was stressing about the radiation I'd had without any gating, and would my lungs be compromised and he talked to me about my cancer and asked about my surgeon and my treatment and looked at everything and then he said HONEY YOU ARE CURED!!!!! IT"S OVER.. I know you are ok. ..and squeezed my shoulder. I told one of my friends about it tonight on the phone and she said, oh, yeah I know who you mean---he teaches Italian cooking classes also-----
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Peggy, Cream has much less lactose in it than milk, so it makes sense that you can still enjoy cream. Most ice cream is made with milk. There is an ice cream shop in Nanaimo that makes gelato, which is supposed to be more cream than anything. I will take some Lactaid & try a small amount of it next spring. fingers crossed!
Lago, we had flu shots too & DH is feeling flu-ish right now. I'm hoping it's just a cold.
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GG, I figured that must be the case with cream. You're obviously well-versed on the subject. I just figured out what works for me and what doesn't. It doesn't really impact my life much. Not into ice cream. Since I had to give up milk nearly 50 years ago, that isn't an issue. If I feel a craving for something like pudding, I plan my binge and know I'll be sorry. Don't do it very often - once a year maybe. That would be good if gelato worked for you - even in small amounts.
I also had the flu shot in September. Not sure what bug I had last month but it sure was miserable and I thought it would never go away. Hope hubby just has a cold too.
HUGS
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Peggy, Yes, I've had so many digestive issues this year that I had to figure out what was causing all my problems, so I've done a ton of reading on lactose intolerance. For now the only dairy I can eat is a bit of yogurt & only natural with all the good bacteria in it. I'm not a huge ice cream or sweets person, but every once in a while I did enjoy a bit of really good ice cream.
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GG, I'm not into yogurt so can't comment on it. My milk intolerance was quite easy to diagnose. Drink milk --> find toilet. It does make life challenging for you, I'm sure. You know what was hardest for me? I liked milk with pizza. I don't drink soda pop (one or 2 a year). I had started drinking iced tea in college at 18 and finally got used to iced tea and pizza - but it was hard. Nothing else was difficult - stupid, isn't it?
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lago, GG27 & PontiacPeggy...the flu shot doesn't keep you from getting the flu, it helps to lower the severity of it if you do get it. I work in healthcare & it is required that I get the flu shot every year & I've gotten the flu several times but was told by the docs that if I hadn't gotten the shot, I would have been majorly out of commission for 10 days to 2 weeks.
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Pita, realize that the flu shot isn't perfect. But it would be nice if it were closer to what's going around out there. And it still is better than nothing, isn't it? HUGS!
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Pita, thanks for the insight. I think I knew that it didn't stop you from getting the flu, but we've had flu shots for so many years now & never had the flu. The one year where they didn't quite get the strain right, here DH is, not feeling well. Also, I'm surprised that you were required to get the flu shot. Here in BC, the nurses union fought the gov't & won the right not to have a flu shot. They do have to wear a mask at work though if they didn't. It's odd walking around the hospital & seeing half the staff wearing masks.
Peggy, milk with pizza? seriously? LOL! Now beer with pizza I could get behind!! GG
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Ewwwww pizza and milk. Just ewwwwwwww
Beer? Coke? Wine? Yeah, maybe.
Just ewwwwww
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GG and Spookiesmom, I told you it was strange
(Maybe I'm strange????) I wasn't old enough to drink beer when I started the pizza and milk thing. And I just never got into drinking Coke or anything fizzy. As I matured I did drink beer with pizza and now I like my wine with it. I haven't had a glass of milk in 48 years and doubt that I could even actually drink any milk at all.0 -
Well, I can't drink ANY type of alcohol (long story, no ca). I always have a water bottle handy. And don't much care for soda
This grosses me out too, DH has COFFEE with his pizza. Ewwwwwww
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Coffee with pizza? I like coffee but that doesn't work for me. I'll bet my mother would have paired them in her pre-wine days. She had coffee in her veins!
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I am now a year since diagnosed wth breast cancer her2 and stage 3.i have 3 more lots of Herceptin and have been taking
femara for 7 months. the SE have been very bad,finger pain,increased cholesterol,back pain,joint pain ,bladder infection
which occurs frequently even after antibotics,and of course fatigue. I am considering stopping femara as the
quality of life seems to be lost.I am 68.there must be others in my age group,unfortunately my Australian counterparts are
hesitant in coming forth,perhaps some of you in the US feel the same way.
angie
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Welcome, Angijon65. We're glad you found us! I'm certainly in your age group but my treatment course has been very different from yours. You certainly have experienced a lot of troubling SEs while on femara. Have you talked to your MO about switching to Arimidex or Aromasin. Perhaps they might cause fewer SEs. Are you taking anything for your bones like Fosamax?
While my experience with Aussies is limited, I haven't noticed them being shy or hesitant. We aren't here at any rate. We are all more than happy to share our experiences, what worked for us, what didn't, and what might help you.
Angie, you might consider filling out your profile and making it public. We often find that it helps us when we share experiences.
Sorry you had to find us and glad to have you with us.
HUGS!!
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Spookiesmom, I'm with you, eeeewwwww!! Peggy, I'm sure you're strange but probably nothing to do with milk & pizza!!
just kidding! angijon65, sorry I can't be of any help, I'm not on femara. But ask your onco or your pharmacist if you can try a different brand which the fillers are different or try asking for a different aromatase inhibitor, there are lots of others out there that you may be able to tolerate easier. I'm sure others will chime in with tips as well.
It's been fun, but I've got to go & make dinner for DH! Later everyone! Cheers, Dee
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Thanks, Dee. You're sweet (well, maybe or maybe not
). Pizza and milk sound rather gross to me now. So obviously I'm now normal!!!!!It has been fun. We need laughter and I'm glad to have provided it.
Angie, Dee, is right. You'll find lots of help here. Just give it a minute or two.
HUGS
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Hello everyone, this is my first post and I am encouraged by your amazing strength. I was terrified of the hormone therapy even more than chemo and I was scared to death of that. Luckily I didn't have too many SE's BUT the one that was really debilitating was the awful muscle and bone/joint pain. This is what has made me so afraid of Arimidex as I am aware that this is a very common SE and I don't think I could bear to suffer that kind of pain for 10 years, in fact I know I couldn't. Anyway started 4 days ago so will have to wait and see. My bone density scan put me in the osteopenia range but I will be taking part in a clinical research study involving whole body vibration which hopefully will keep osteoporosis at bay. Thanks to you all, you seem to be very supportive.
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Pita119 my understanding of the flu shot is it may not prevent you from getting it because there are so many strains. Sometimes they get it right and sometimes they don't. And yes I do hear it is less severe. I know my husband would have been a lot worse if he didn't have the shot.
Spookiesmom I too have a water bottle with me at all times. I drink soda maybe 2x a year and I was never a big drinker. Yes my occasional glass of wine. I don't like beer.
angijon65
Do you have the drug Exemestane or Aromasin over there? I made the switch form Anastrozole and have many other friends that made the switch from Femara. All of us feel the the physical SE are much better on the Exemestane/Aromasin. For me the side effects that went away are:
lost the 10 lbs I gained on Anastrozole
back/neck/shoulder pain gone
most of the stiffness in my left hand gone
sleep issues gone
pulse dropped from 78 to 68
eyelashes grew back
AussieElane I was just like you. More afraid of hormone therapy than chemo. I was on anastrozole for 3 years before I switched to Exemestane. If you are having an issue ask if there is another drug you can try but you do need to give it some time. I had no SE for the first 3 months. Was very stiff the first year but that got better. Then these other SE slowly came on over the 3 years before I made the switch.
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My pulse and BP are up, too. I thought it was just being in the doc's office, but it may be AI. Have to watch that more carefully. Thanks again for the tips. You gals rock!0
