Arimidex - Coping with the SE's
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Thanks all on the congrats for the 5 year-mark for mammograms. Hoping after this Oct.'s CT scans, that will be the last of THAT also. (Not meaning last of the yearly mammograms, it's just now it'll be 'regular' mammograms instead of the 'extra squishes') Have not heard about bone density scan yet, one of the docs will call me, and I'm having the results mailed to me (they won't fax it to me--privacy concerns, though it's a private fax--understandable!).
The bed: We finally got an adjustable bed, I refused the foam bed, due to those extreme night sweats/hot flashes (a/c in bedroom is set at lowest: 64 degrees! BF has dual-control electric blanket he sets for himself every night, lol). But,yeah, it still bothers the hips. Not sure if changing from Arimidex (for those on that and very bothered) to what I take, Aromasin makes any difference, as I have the same issues you all have (fatigue but with insomnia--need a sleep med; bone/joint pains, hair falling out, etc.).
Love the clinical trials, but yeah, one doesn't know which you'd get on the randomized. I was on the clinical trial that added Gemzar to Taxol and I was lucky enough to be picked for the dose-dense chemo agents with Gemzar added. We'll see if that study is helpful for NON-recurrences.
Hope all get thru this hurricane stuff this weekend :O ~juli
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Good luck to all the hurricane ladies. Stay safe. We are sandbagging because the water level is so high around here. Mother Nature seems to be in a very bad mood this year!
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Hi GMA,
I hope that you feel better soon! I just want you to know that there are other muscle relaxer drugs like robaxim to consider if the headaches still persist and you think it is worth trying something else. I took robaxim years ago when I had my first herniated disk. They recently gave me another one called cyclbenzaprine, which I tolerate well. I only take one a day at night time,but it has helped me with my muscle spasms from my now 3 herniated discs in neck. Just something to keep in mind as you make your journey.
Good luck to everyone in the path of the hurricane!! best, Beau
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Beau: thanks I looked that up and that is Flexeril... I can't take it at the same time (at bedtime) I'm taking neurontin (for the rad related nerve pain) and it knocks me cold... I am trying to get something I can take and still drive to work in the morning
. So far it looks like the robaxin is working at half a pill and takes away enough of the headache that I can function... I do have it in my arsenal of drugs though... Praying everyone is safe out there on the East Coast!!!!
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Hi AI ladies,
We have here extremely high temperatures now, so we spent a lot of time at swimming pools.
After swimming a much I was really tired, but next morning and all over the day no bone/joint pains. Couldn't believe, but it's true! Unfortunately so as I as you too, we cannot spent our days swimming!
Best wishes!
Usha
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Hi girls, Just thought I'd check back in and let you know what happened at the onc's. I saw the NP because the doctor is on vacation, and they took the wait and see approach. Because the rib pain (which they did not even poke at) may be a SE or possibly because of the parathyroid, and they seemed at a loss about the nipple discharge, but have decided to wait until I have a mammo to worry about it. (But did not order one). They told me my labs look good, see you next month. For this, I missed a day of work and drove for hours!
Apparently they don't have an answer and didn't want to be bothered. But I can call at any time!
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37antiques I would ask your NP to have your onc call you when s/he gets back to discuss this. They shouldn't be blowing off the nipple discharge IMO.0
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37anitques: that stinks!!! I can't believe they did that but it happens when you don't go to your doc :-/ I'm so sorry you went all that way for nothing...
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I read here that many of you have fatigue on Arimidex. I take the generic form Anastrozol. I feel tired, but at the same time it seems to add a lot anxiety, and I don't sleep well. Up at 2 this morning. Just got up and found something to do at 3 since I was getting board just laying there.
37antiques, I agree with lago, can't believe they did not address the nipple discharge. I'd pursue it if I were you.
Hope those of you on the East Coast are safe, during the storm.
Hugs!
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Jancie- I am 49 and had a heart attack in March...4 months after starting tamoxifen. I will be very interested to hear what your cardiologist says about arimidex and your silent heart attack! I have an oncologist appointment October 4th to discuss getting me on to a new drug now that I am officially post-menopausal so....any info you get on this drug and heart would be great to hear! Keep us posted.
27celsius today and waiting on the hurricane...hoping my flight leaves before the rains hit!
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37antiques: Oncology office says wait another month???? Can you speak to your breast surgeon?0
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37, call your GP if the oncology people or surgeon aren't taking your concerns seriously. That is just wrong!!!!
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I'm glad you all feel that way, sometimes I think I am just crazy when I deal with the medical world. I walk out mad every time, and then I wonder if maybe I'm just doing something wrong!
I'll call the PCP on Monday and have him order me a mammo, yuck!
So does Arimidex cause serious weight gain? I've gained a lot of weight, I went from dropping an unexpected 10 pounds to being 15 over my normal, and I eat healthier than I ever have! I expected a few pounds, but 25 is a bit much, isn't it? Maybe I should go back to junk food?
Faith- Try taking it earlier in the day. I was not sleeping at all but I take it earlier and did adjust a bit, so now I can sleep again.
Oh, and the only good thing from the NP was she ok'd me taking Effexor again if the hot flashes get to me.. Not that they're like a real sweaty full blown hot flash, just a mild glistening warm moment. Way better, but I still don't like them.
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Regarding discharge - I reported a tiny, one time amount of possible discharge and they were all over it. I agree, talk to the onc. I ended up being fine, but IBC is nothing to mess with...
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37antiques I was thin and in great shape before all this last year. I was around 128lbs. On chemo I was as high as 142 between weight gain and fluid retention. I haven't gone back to strenght training but I do the 1 hour power walk 5-7 times a week. Also the fluid retention is pretty much gone. I started Anastrozole (generic arimidex) March 1st. Current weight is 130lbs.
Don't assume it will cause you to gain weight. Just be sure to eat healthy, proper portions, lots of veggies and exercise.
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Hi Ladies, I've been lurking in the bushes reading about everyone taking Arimidex. I just started taking the generic form Anastrozol today. Wow, all these different side affects are really freaking me out. I know about the hot flashes, night sweats, and the usual from menopause (no thanks already been there, done that), so much of the other stuff is so overwhelming! I read the information sheet that came with the pills and it doesn't sound much different than other meds I take. I am on an antidepressant so I hope that helps with some of this. Is anybody else taking cymbalta with the arimidex? Kitty
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Kitty, don't be freaked out. Most people do just fine!
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Ditto what ruthbru said. You are seeing the posts of everyone who has SE's mild or harsh but if you notice they are all as varied as the posters. Some tolerate them very well, others hang in there as long as they can, others try different AI's, and many don't have any SE's. Also, sometimes we think it's the arimidex/generic when it's just our changing bodies. So please don't fear because of what you read here; just be aware.
HUGS.
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I agree with Patoo and Ruthbru... everyone is different.... One of my doctors reminded me that the SE's aren't actually from arimidex it is your body losing the estrogen... and I walk we a lady that has been on it for over a year now and not one SE from it...I am one that has a headache but other than that, I doing fine.... The Onc already said if I don't want to deal with the headache I could change and probably do fine on something different...YOU will be fine Kitty
37antiques: so far I have been losing weight, I find I'm just not hungry... been walking more and working so that might have something to do with it I don't know..
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I have been on Arimidex, first the regular for 2 years and then the generic until now, for 4 years and 2 months. I have 10 months to go. I am tired sometimes, I have had dizzy spells, gained some weight (which I am working off now with a totally vegan diet--no oil, Esseltyne) my knees give me trouble since I have gained some weight. Hopefully that will change over the next few months. I am a school librarian and start back to school tomorrow. I have loved the summer. I guess what I want to say is I am almost there, the five years of Arimidex. I look forward to completing that cycle. It does go by fast. I have found if I have problems with taking the drug or feel that it is responsible for a health problem, that the body is amazing and kind of deals with it over time if you let it.
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mcgaffey: Congrats on having the finish line in site! Thanks for the encouragement. We all go into this with different bodies at different stages with different co-existing health issues. Perfectly understandable that each of our courses will be a bit different.
Thanks again and best wishes!!
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As for weight gain, I find that when I eat more and exercise less, I gain. And when I eat less and move more, I lose slowly. Right now, I am down a few pounds.
I also think that a lot of the "weight gain" isn't from Arimidex per se, but because most patients come into the hormonal part of their therapy less fit than prior to diagnosis. It is a sneaky process that is probably the greatest contributor to weight gain as we get older.
Less exercise means weight creep and weight creep means less exercise. Surgery, chemo, and radiation accelerate this process in a lot of breast cancer patients. However, it doesn't show up until active treatment is over, which is when Arimidex starts.
I have noticed that it is easier to keep weight off since back to full energy. This happened about three months ago. I was doing a ton of exercise before that, but just being revved helps too.
So I would say, based on my own personal experience, that rebuilding strength post active treatment is probably a good place to start. So whatever walking or other exercise, plus something to build up muscle strength and flexibility.
More fun for me than doing something drastic like giving up eating.
On another note, hope everyone on the East Coast is safe and snug. - Claire
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I had an oopherectomy prior to taking Arimidex so I don't know whether to attribute the peculiar spare tyre that has suddenly appeared round my waist to that or to Arimidex. I do remember when I got my dog spayed the vet told me she'd be prone to fat. So guess as I am now a spayed bitch I will suffer the same fate.
Sunflowers - your asthenia comment really made me laugh.
I echo Claire's sentiments and hope that anyone affected by the hurricane is ok.
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Wow, glad I am not the only one. I do have to disagree about it just being the menopause thing because they had me on tamoxifen for 3 years following chemo, and no problems. Weight ws down, was still working out, pretty normal stuff. and I see how it has been cumulative, just creeping up on me. I know I need to work out, but I am just so tired, well put that my get up and go has got up and went. the dr. suggested super B complex for energy but have not seen much difference. but then again, maybe I am just getting older and am expecting more out of my body at 50 than 45. I don't know. plus my onco said he plans on keeping me on arimidex indefinately because studies are showing the longer the better. did I mention that fatigue means no energy for fooling around. good thing I have a pretty understanding hubby because it has dwindled down to once or twice a year. sad, huh? So what do you do? goes back to that famous quality of life -vs-quantity of life...
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I will be joining this group as well pretty soon. My onc plans to start me on Arimidex after rads. I think my last rad will be about Oct.7th.
Kitty you are a bit ahead of me on this one, having already completed rads. Hopefully you and I will breeze through this too. I think some of the SE's do sound a bit intimidating, but also agree I may never get any. Hoping!
I have always had a problem with headaches so that is a definite concern. That plus insomnia, and I have a lame knee as well. Hopefully I will get through all this and come out unscathed!
Good luck ladies....I will be looking to you for answers if I develop any issues!
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I ran accoss this link from medscape: http://www.medscape.com/viewarticle/748096?src=mpnews&spon=17. It talks about the benefits of high doses of Vit D for joint pain in AL's for BC. However, if you read the short article, read it critically, as it was only a single study and the high dose could have SE's, so ask your onc if you are interested--don't take my word. I am not a dr, but neither do I have any financial ties to this. Medscape, though, is very reputable.
Personally, I started anastrozole 4 months ago, and the SE's seem minimal. Sometimes though, I think I should go to an orthopedic surg to get my hip x-rayed to see if I need a hip replacement. (So I may be underestimating the SE!. I didn't read through this thread completely, as I feel vulnerable to suggestion!
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It is a good idea to get your vitamin D level checked (with or without arimidex; it is an important vitamin that many ladies with BC are low on).
The best thing to increase your energy level is to make yourself exercise......I know I say that all the time, but it is absolutely true!
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Yes, it is good to get one Vit D checked routinely, but the article is saying that when Vit D is NOT low, very high doses can help minimize pain which is induced by AL's (it is reported in a journal on BC research).
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My personal experience and it is mine alone is that Vit D3 has helped my hip pain tremendously. I'll repeat it here since it's probably a year or more since I shared it is that probably 15+/- years ago an orthopedic surgeon said I would eventually need hip replacement but to try glucosamine/chondroitin to see if it helped. On and off for awhile I used it and then got serious and took it everyday. After about 6 years or so I stopped taking it and (gluco/chond) and remained pain free for several years. Then BC and after a few months on Arimidex (I started in Feb 2008) the hip pain returned. I started the gluco/chond again but also had my Vit D3 checked and started taking 3000-5000 iu's daily. I have been able to stop the gluco/chond again for at least 9 months now and the hip pain is, for the most part, gone. I attribute that to exercise which I do almost daily and Vit D3. Cutting back on the exercise definitely lets me start to feel it a little. I have cut the Vit D3 to 3000 iu's and I will have my onc test my levels during my next visit in a few weeks.
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HI patoo,
Thank you for your exhaustive information! D-3 is really giving a lot of help for join pain
Best Usha!
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