For Arimidex (Anastrozole) users, new, past, and ongoing
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I was told I will get Prolia shots once every 6 mos....would love to hear about SEs. Been on Arimidex for 4 days and notice sweating at night and during the day.....
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I had my first one 5 months ago getting my second one the end of April I had no side effects from it just hope my Insurance keeps covering it .
Nancy
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Coming up on 6 months of anastrozole. SE include some stiffness and achiness when getting up after having sat for awhile. Walk like a duck for first several steps, then good to go. Also put on about 10 pounds. Seem to be hungry and lazy at the same time. No a good combo, and I hope to get back in shape as the weather improves. It's been 7 months since last chemo and while my hair has grown back about an inch, I have some bare scalp visible that I feel will probably never fill in. I decided to start using minoxidil in hopes of getting hair to grow back. I realize that once I start it will be forever, but I can't stand my scalp showing. The bare areas are huge. SE of taxotere I now realize. Hope to have enough hair to go wig free come June. Coming up on one year anniversary 4/23 of being cancer free, so overall can't complain. As they say, any day above ground is a good day.
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I had a lot of bone pain in feet , knees and hands 3 months into arimidex, then in month 5 it went away, seldom to be felt again. I have it maybe 2 days a month. I am in month 15 on an anticipate d5 year regimine. I had no ostopenia. Had arthiritis in spine, though. It hasnt worsened. I take citracal twice daily, religiously. Two horse pills at a time.
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For those of you on Prolia, I'm curious why your doctor didn't prescribed Fossomax first?
Thank you.
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I take Fosomax, been taking it for 5 years due to parathyroid disease which caused osteopenia. My endocrinologist was going to give me a year off but because of the arimidex, said I need to continue for at least one more year. Oncologist recommended prolia shots when reviewing my chart.
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Someone asked for the phone app that helps with weight control. I have been using My Fitness Pal which is free. It has truly helped me keep track of what I am eating, how much exercise I have done to burn calories and also exactly how much protein and daily vitamins I have been consuming. I have lost six pounds so far which has lifted my spirits and given me the incentive to keep at it.
While I didn't actually gain a lot during treatment, I became doughy. My oncologist said I have "postchemo de-conditioning" which I think is a polite way of saying I am lumpy and frumpy. I have no figure and cannot fit into most of my clothes the way I did. I am not fat by any means, I am just not my old self yet. Losing these few pounds has already made a difference. My husband even noticed.
As for Arimidex, I have been taking it for about four months now. The aches in my arms joints seem to have receded as time goes along. I originally thought I had gotten Lyme again because of them, but a test proved that not to be the case. I am sometimes conscious of them aching, but not always anymore. It seems to be more of a background thing, a low grade awareness of them. I am still stiffer in the morning, but soon warm out of it. All in all, it has not been too bad. I will happily trade my side effects for warding off a cancer recurrence.
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Hortense, I use that app also and find it very helpful.
I was wondering if anyone knows anything about Cellgelvity. I have a friend who said her friend began takling it after they had exhausted all other avenues and it worked wonders for her joint pain, cancer, etc.
I plan on asking my oncologist about at my next appointment. Would love any feedback if anyone has tried it.
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I am going to take a break from Arimidex starting Sunday. My neck and other joints are so bad I am miserable. I know I have arthritis in my neck, but I have joint pain all over. I am so sick of it. I have to know so think I will take a break for at least two weeks. If the pain diminishes I will know. Then I guess I'll have to talk to my MO about what to do next. I don't even see him again until June, he doesn't even know I am taking a break from it. I have to at least do this for me. I don't know what else to do. I am walking daily and trying to stay busy but this pain is really bad. I am just very frustrated right now. All my blood tests came back normal, no evidence of any auto-immune disorder. I don't know what to think anymore. I am very frustrated needless to say.
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It sounds like you've been having a really time time with the drug. I have been taking Arimidex since October of 2008, and the hand and joint pain is really the only negative part for me. The hand pain usually is just first thing in the morning, but my feet ache when I first stand up. I loved the earlier comment about waddling like a duck! Best of luck with this.
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Disheartening to hear everyone's issues with anastrozole. We've all been through so much. But stay strong ladies--we can overcome the discomfort. I know I will endure to not have a reoccurrence. Hang in there! Hugs to all!
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Hello: I started the Anastrozole last friday and doing okay so far. Some bone pain, joint pain, a bit of mental fuzziness, and fatigue. But I am able to function and nothing I cannot cope with.
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Glad to hear that jazzygirl. My pain got better and i have handled the drug well. I have not gained any weight after 15 months. I take citrical twice a day for bone health.
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I am into my second year on Anastrozole..not much discomfort (other than stiffness after sitting a while) but the hair loss is annoying and scary. Will I have any hair at all after the 5 years?
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Just starting Arimidex. I read about the hair loss SE but had not heard anyone mention it.
Schatzi - did it start right away or take a while? I still have some shedding from chemo but used cold caps to keep about 2/3 of my hair. I would hate to lose it over a pill.
Anyone else have hair loss over time?????
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Janis, I'm with you on the pain. But on one of these threads recently, there was a link to a study that showed women who experienced joint pain and stiffness had a lower recurrence rate than those who didn't. So at least now I think of my pain as a good thing, helping me in the long run. I'll keep looking for that link. Anyone else seen it????
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schatzi14 and schoolmom I had some hair loss (hair receding) before chemo so I was using women's minoxidil. I stopped on chemo but started up again after. I actually grew hair where I had lost some after chemo. I'm now 2+ years on Anastrozole and I do see some receding again but not bad. Yes I do believe this is lack of estrogen related, as it was before chemo too because I was peri-menopausal. I only use it once a day but I bet if I used it 2X as directed I would have even less loss. I also have a friend that experienced the same thing and she started Minoxidil and also had some success with some of the hair growing back and it stopped falling out.
As far as everything going back to normal when you start… my NP said it would but not like before, you will be normal for you at 5 (or more) years later depending on how long your are on the drug.
WaveWhisperer The theory behind that is if you are experiencing SE then you know you are metabolizing the drug. Doesn't mean those who don't have SE aren't but those who do know for sure.
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Before BC, I had noticed a very little thinning on the sides but nothing to go ape about. After chemo it all grew back with a large cowlick at the top of my head...as the hair grew, I managed to get rid of that BUT then it began to get really thin. I find hair everywhere except my pillow. No matter where I part my hair to look, it's a wide part!
I am waaaay past menopause and it may have happened anyways. I see my MO this afternoon...I doubt he can help. Will likely tell me I am lucky that is my only SE...easy for him to say:(
I just continue to keep it cut in the "Jamie Lee Curtis" style and so far it covers most of it! As far as the length, it grows like crazy!
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Just got back from seeing my MO...and here's the quandry. He says I am such a low % ER+ and PR-, that he thinks I have already received any benefit from Anastrozole that I am going to get. He said if I want to stop taking it, it's OK with him. He feels the chemo was the best bet for me not to have any recurrence. Well since I already had another 6 months on my prescription, he said go ahead and take it until I see him in six months! OMG what a decision to make since I am concerned about bone loss and hair loss. I hate that he left the decision to me!!!!
For all you gals that are suffering from SEs, hang in there because it's the best thing you can do for yourself!
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schatzi what was your E+ percentage? What do they consider low?
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2%...I am basically triple negative
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Yeah I surprised they even suggested Arimidex. My BS says my P is negative at 3% but my onc says it's positive. Granted some say you can't be a little bit positive just like you can't be a little bit pregnant. You either are or you aren't. Probably means you just have just a small amount cancer cells that respond to Estrogen… very small.
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Question: If so many of you are having issues with joint/bone pain taking Anastrozle, what happens when you add Prolia shots to the mix - I start in 2 weeks and I already have joint issues back pain and osteopenia . Doc says I need the prolia because of my issues and because of my family (mother) history with osteoarthritis...add the extra weight I will probably gain.... - I am getting so worried about what comes next
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lago...yeah I guess that's it. I guess at least over a year of taking Arimidex stopped any more ER+ cells from growing. As I said, I will continue to take it for another 6 months unless my hair falls completely out LOL I need to check my path report again cause I was sure the PR was the same % as the ER. It's all a crap shoot.
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schatzi I've had great luck with the Minoxidil. Yes I have receded a little but I was actually worse before diagnosis. I do believe it's helped me hold on to most of my hair. I know others that have also had good luck. I used the women's formula.
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lago...but don't you have to use it forever? Is it prescription?
I was hoping once the Anastrozole was over perhaps it would come back. Am I dreaming?
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No not a prescription. I actually use the generic Walgreens version… and buy the 3 pack on sale. Yes I do have to use it forever. If I stop I will just go back to what I would have been. I only use it once a day after I shower but typically you should use it 2X. I'm sure I wouldn't have lost any if I used it 2X a day.
When Anastrozole is over it may come back… but you will be 5 years older so it will probably come back for a person 5 years older with less estrogen. As we age we produce less and less estrogen. That's why you see many old ladies balding. My mom had hair as thick as mine (different texture). While she doesn't need a wig it has thinned. She's in her mid 70's.
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lago....I am one of those "old ladies balding". I am 69 and truthfully before DX, I was thinning a little on the sides. It didn't concern me then and I also coloured my hair which made it thicker. Since the chemo, I decided it was time to stop the colour and therefore, never have to worry about grey roots again. It sure makes my hair less thick.
I can use mousse etc but I have no patience with hair products and hair blowing. I just had it cut like Jamie Lee Curtis and for the most part is wash and go! It sure is bed head tho in the morning...YIKES!
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My hair might actually be shorter than Jamie Lee's but my bangs are longer. I have the sides and back buzzed. It takes 5 minutes to dry my hair. I don't consider that much fuss considering before chemo it took about 25+ just to dry my hair. It was above my shoulders. I have thick hair. Jamie Lee is only 2.5 years older than me. I do like the grey on her but I also think it makes her look much older now that it is almost all gray.
and 69 is much younger than 76. Trust me. 7 years does make a difference at that age.
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I was going to colour my hair again but both my DDs and DH said let it go. There are days I look at myself and admit the lack of colour certainly ages me and makes me look so tired. I struggle with the decision. Funny enough, before DX, I said I was going to stop colouring it and my DDs freaked out. Don't do that Mom, we don't want a gray haired Mother...sheesh. Maybe they are just grateful to have a Mom with hair, period! LOL
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