Arimidex - Coping with the SE's
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Thanks Claire but I have less than 2 weeks for exercise… my exchange surgery is on the 24th. Every time I get close to my old routine something else happens (shingles) or I need something else done (exchange surgery). I'm not sure how long they want me to sit on my ass after surgery but the scheduler kept saying "no" each time I asked if I could do a power walk.
I will be discussing returning to exercise when I see my PS at follow up. Geez at least they can let me walk! I need to keep my bones strong.
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I had advance practice from many years of arthritic pain, and I may have written this before, but if I do a 20-minute routine of yoga stretches EVERY morning, the pain is less. And IF I avoid alcohol, the pain is less. And I take 5 mg. of Amitriptylin every night--it was originally developed as a treatment for depression but is almost always used now for its side effect of masking pain. It really, really works (and helps me sleep, as well), doesn't create the digestive problems Ibuprofen does (I had an ulcer 20 years ago when I was relying on Ibuprofen for the arthritic pain).
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Lago
3 months sees to be the magic number for the first HIT of SE's. My hands were so numb, painful, etc. my doc told me to stop for 6 weeks - during which time I started wearing wrist splints, both arms, 24/7, went to a physical therapist for exercises, and when I restarted Arimidex after 6 weeks - the major symptoms were gone. Still have some stiffness: knees, back ( had major back surgery in 1983) but I SWEAR massage & acupuncture are what's keeping me going.
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Lago I have been walking since my 1st surgery .. now I have to admit the walking was pretty slow then slowed to almost a crawl during chemo.. the best days being the day or two before the next chemo .. I was walking twice a day during radiation. before and after treatment. then the radiation tiredness hit and I felt like I had to start all over again.. but If it wasn't for walking I would be in horrible shape.. mentally and physically... I want to get back on my bike since its getting hotter and the self made breeze is a help but I have to ask about the lymphedema and sweating .. I'm all bandaged up right now to take the swelling away, that happened with my shingles.. I was hoping it would go down when the shingle went away.. but no it didn't..all my doctors said I could walk.. OK not the arm swing power walk but I am walking about 3 or more miles, I figure If I cant power it... I will make it longer..so I stay outs side for about a hour.. sometimes slow sometime fast!
ps sorry so long of a post...
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sacphotomom, no apology needed, esp when you are giving really good advice. Movement (many don't like the word 'exercise') is, if not the top, then close to it, the best way we can fight against the pain and some se's. Read many of these threads and you will see the same theme - movement is the key. You don't have to power walk, just get out and move to alleviate some of the physical but also the emotional "pain". So don't stop telling your story. Exercise (okay I said it) is part of how we fight this beast.
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sacphotomom - you're an INSPIRATION! and I echo Patoo - for all those who get wondky with the word exercise - it's MOVEMENT - gardening, cleaning, just plain ole stretching while at a desk - helps. Expecially - I find, the knees. Just have to keep them moving...except when getting acupuncture - just WISH I could give every woman with creaky knees the acupuncture treatment I get every month. May even start to do it more often, makes a tremendous difference. No need for Aspirin or Ibeprofon ( sp?) when getting regular treatments.
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For Burley and others who are suffering from the SE's, I started anastrazole in January. I think my pain and discomfort with stiffness has maxed out and I'm starting to feel better. My feet aren't hurting at all. My hands are still stiff at night and first thing in the morning, especially my left hand. The rubber-band symptoms in the hadns are getting better (tendons popping/zapping) and my legs have quit aching. I have increased my level of exercise and also started taking Effexor for hot flashes. Maybe one of those is contributing, but I just wanted to let you know that six months out, I'm starting to physically feel better, so there is hope if you can make it through that long. Cyber-hugs!
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Hugs from here too! Movement, time (not only to adjust to Als, but to work past the SEs of the other treatments), and getting back involved with the fun and hassles of 'normal' life all help.
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Jo-5 I remember telling my onc I hated exercise but love the way I feel when it's done when I first met her. Still feel that way.0
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Boy I am glad I found this thread. Started Arimidex March 21st. Noticed the weight gain right away and fatigue, and the no sleep. But over this weekend I started feeling the pain. Again right around the 3 month mark. I know I am supposed to exercise for a lot of reasons and I am usually pretty good at doing it consistantly but I am in so much pain fom head to toe right now that even the thought of exercising hurts. I was in MD over the weekend for a wedding and made it to the beach for a few hours. I barely did any walking and just a little on the sand. Well the next day I felt like I had run a marathon. My calfs hurts so much I could barely walk. And now the itching has started. I used to think of myself as a very young 45 year old. Now I think of myself as a very old 45 year old. And lets not talk about the hot flashes. I already take Effaxor for it but the sweating was so bad over the weekend that I left the wedding early. It was embarassing to be dripping of sweat in an air conditioned room. I really hope nothing else comes up as I am too a very positive person. Nothing got me down going through cancer treatments but I can see myself slipping a little more everyday lately.
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Carole66: So sorry you're not doing well on the Arimidex. We're all so different and I've heard so many different stories. Some say they have no problems at all. Some don't have any problems at first then the SE start. Some have symptoms right off the bat and then they taper off. Some hate the side effects, some are glad for some side effects because they feel it's an indication that the Arimidex is working. I've been taking for almost 2 months and have had some erratic symptoms so I don't know whether to blame the medication or not. Ugh!0
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Carolee66: Oh sweetie I feel your pain...literally! I can tell your feeling down about it and trust me many of us have felt the same. I am almost to my 6th month on Arimidex and I am finally starting to feel better about things. Less pain, more control of emotions, more energy, etc....I am only 5 years older than you and also think I am a positive person....but it has been a tough road on this medication feeling old and creaky and feeling down sometimes. I am here to say that things are getting better now for me...so hang in there and know that things will improve!
Sending hugs your way!
Dawn
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Carole66,
I'm 44 and also just passed the 6 months mark like Dawn. I think you are at the worst of it right now. I had achy hands, legs and feet big time, and was so stiff after sitting or laying down. I've felt really good the past two weeks or so, all of a sudden. I think if you can hold out you will start to feel better in a couple of months. I know it is tough, and almost considered stopping it myself even though I really didn't want to, but I was so miserable. I was really feeling like 64 and not 44. I'm starting to feel more like myself now and hope it will stay like this! Hugs!
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Carole66--talk to your doc about trying gabapentin (neurontin) for the hot flashes. works wonders for me!
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Thank you for the encouragement everyone. Native Maine, I was on gabapentin in the past, I don't even remember why. But I did start taking this OTC med called I-cool for the hot flashes. I have to make sure that it does not contain soy or hormones. And this one doesn't. It can take a month to start working but after a couple of days I seem to be getting some relief. I actually had a decent night sleep and they have been less severe and shorter already. Maybe there is hope yet.
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Carole66, there is hope and I'm claiming it for you.
Twin, I hadn't seen your "SE'S ARE EASIER TO TREAT THAN BREAST CANCER!" in a very long time. Wondered when you were going to pull it out again and it was right on time - great post. (has it been 2 years you've been off - seems just a couple months ago you finished).
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Has anyone here changed from taking Arimidex to Aromasin? I just had an onc visit yesterday and asked him if I could switch. I have terrible joint paint - especially my hips. He said I could try it but might have the same se's still. I just sent my rx order to the mail order pharmacy today. I'm not hoping for miracles but hope I can get a little relief at best. Thoughts anyone?
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I don't post much but I read almost every post as they are sent to my email. I recently went to a pain management specialist for post masectomy pain and he is going to inject my port scar with a steroid (i think) next week as I have a lot of pain there. He gave me a RX for gabapentin. I have neuropathy in my fingertips that is painful almost every day and I know this may be permanent. I just noticed blurry vision in my right eye. has anyone else had this se from gabapentin or arimidex? Been on Arimidex since feb and major se's have calmed down. hot flashes down to maybe 3 or 4 a day. still joint pain and back stiffness. Wishing you all well
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don23, can't answer your question just sorry you are having so much trouble on Arimidex. Hoping you will do better on the Aromasin. I'm sure someone may come along here with some thoughts for you.
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I've been on arimidex for almost 5 years, gabapentin for amost 6 years. I've never noticed blurry vision (except when my contacts needed moisturizing or cleaning!). Blurred vision isn't a common side effect of either drug, but that doesn't mean that it can't happen. Have you had an eye exam recently? You could also call your doc's office and run this past them to see if they are concerned.
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Darn I can't remember but it could have been Gabapentin that I had to stop because the blurred vision was so bad. About 8 hours after I stopped it it came back to normal
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Just passed my six month check up. Everything was great EXCEPT the side effects from arimidex.
Changed me to generic exemestange 25 mg. in the hopes it will elimnate the joint pain. Nothing for the sleepless nights. Suggested Weight Watcher as a means of losing the weight that has piled on.
Any suggestions?
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Yes, Zenith, I've had blurry vision -- though it seems to have lessened after almost 20 weeks on anastrozole. I have neuropathy in my toes and no one will pinpoint its source, but I didn't have it before anastrozole, and I didn't have chemo -- my onc said neuropathy is usually a side effect of chemo. Golfer, re: weight loss, I've changed my diet to mostly vegetarian and NO sugar so I'm not as hungry and put a treadmill in my bedroom where it calls me to a minimum of 10 minutes a day at 3 miles an hour; exercise is an absolute must -- I don't think any food plan will work without it.
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Golfer - I was just switched to Exemestange just the other day. I have had a lot of joint pain on Arimidex and hoping the switch will lessen the SE's. I mailed the prescription in the other day to my mail order pharmacy. Can't wait to start it! I hope it helps us both.
I have been on and off of Weight Watchers lately. I am a lifetime member but can't seem to get this weight off. I don't think I am as strict with my food intake as I used to be. I just keep trying and hopefully one day the weight will come off!
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I have resigned myself to the fact that Arimidex makes it harder to lose the weight although I think it is possible albeit slowly. Others have seen the weight come off once they completed their Arimidex stint! In the meantime I exercise now, not so much to lose the 20 lbs I need to get off but to keep healthy, or healthier, while on the AI.
Golfer70, hope your change will work for you. WW and the other diet plans work while you are on it but JMHO the best is to watch what you eat, when you eat, how much you eat and exercise. I recommend loseit.com to keep track of what you eat and how much exercise you are doing on a daily basis. (it's free).
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Hi Twin, we were composing at the same time. I can say I also had blurry vision at times but my eyesight has been really bad since I was 3 years old so for me it was just normal - the 'floaters' drive me nuts at times but I don't think it's related to Arimidex.
Time for lunch - back later.
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patoo: Loseit.com is great. Pretty simple, it has some name brand products and chain restaurant meals already available or you can enter your own. You can put in your current weight and target weight, how fast you want to lose it and it will give you a target daily calorie intake. You also get calorie credits for exercise. It's kind of fun!0
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TinaT. Just visited the Loseit.com site you're right it is great, and so easy to use. Thankfor it, I have my sons wedding in Novemeber and really need to loose 40 pounds or so.
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Hi ladies,
Don't forget strength training. Because muscle mass boosts your metabolism. Most of us lose muscle mass during active treatment due to inactivity. So critical to rebuild.
I was mentioning this Kira because you will be tons happier to show up at the wedding with a toned body. You do have enough time.
I have to admit I am a fanatic about exercise, but I am fit and have minimal side effects. I might have escaped these anyway.
I also don't want to have to ever live on 1200 calories per day.
I do a routine of weights and crunches each weekday, and walk a minimum of one mile. I cycle or ski on weekends. I do endurance events. Those keep me strong and healthy.
All of us are at different points, but my intent is to point out that much of weight control is dependent on maintaining/rebuilding muscle mass. Plus toned looks far better than flab.
Good luck Kira. Congrats too on the wedding. - Claire
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Claire, You are so right I really need the strenth training as well. I know I was unable to do most anything for so long and am aware I am very weak. I see the BS in July so hopfully I can begin with the weights. I've been restricted to lifting 5 pounds max for the past year. But that shouldn't stop walking. At least he gave the ok for swimming in January, but have to be careful if I strech to much the dang breast still opens and oozes.
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