Arimidex - Coping with the SE's
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Well, I finally made an appointment with an orthopedist to see about my trigger thumb and hand pain in general. The bonus is that the orthopedist is a great doctor, sweet person, and very handsome.
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Elizabeth, would you please let us know what the orthopedist recommends? I never even realized seeing on ortho would be an option, so maybe I'll have to check in to that as well. O-o-la-la to the handsome part.
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Handsome's good. Sweet is even better.
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DivineMrsM, Of course, I will let you know what the orthopedist says. I am seeing him this Thursday.
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Bogie, yes, lots of hang tingling, especially in the AM and ALWAYS when I'm on the computer. Also have very stiff and painful fingers -- little fingers and thumbs. Weird.
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Hi WaveWhisper, love that screen name! What has your Physician said about the hand and finger tingling. I read it's Carpel Tunnel Symdrome caused by Aromasin. I have appt in a few weeks with Oncologist. I never had this before going on this drug. What a strange side effect. Hoping there is no permanent nerve damage.
I see your in Charleston, SC I will be there next month moving my daughter, she accepted a teaching position there and is moving. She loves it there and wants us to all move with her!!0 -
Bogie...I was talking to my MO yesterday and he said that Carpal Tunnel was DEFINITELY a SE of Arimidex so would imagine it's the same for Aromasin!
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Hi WaveWhisperer,
I have the same in my left hand mostly, my thumb and my middle finger. It started around three months in.
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Bogie, I followed my daughter to Charleston, after she and her husband moved there. It is a terrific place to live.
I have been on the "A" team for about 6 weeks now and have an appointment with my MO in a few weeks. I'm definitely asking about the tingling. She had warned me that the drug seemed to affect smaller joints worse than larger ones, so I'm not too surprised it's my fingers and wrists that are stiff. She said side effects also seem to be worse for women who already have high cholesterol, which I have. The fun never stops!
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WaveWhisperer - Had not heard about SEs and high cholesterol correlation. Oh joy.
Confession - I am officially on AI. Started Letrozole on Friday. MO said he alternated giving one woman anastrozole and the next letrozole. I got lucky and got the letrozole. Only time will tell.
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The MO's plan was to start me on arimidex next week when I see her -- but reading about all the SE's, I'm not sure I even want to be on it. I see patients for hand therapy and I surely don't want carpal tunnel, deQuervans, trigger thumb and finger, joint pain etc etc. besides the mood swings, weight gain, increased risk of heart attack, etc etc. Actually if any of you ladies have hand issues, it might be good to see a hand therapist -- preferably an occupational therapist who can help you modify your activities as well as provide custom splints, exercises, whatever. I am going to ask patients now what medications they are on when they are referred for therapy -- might be hormone therapy......never knew of that before....
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Most people do NOT have horrible SEs. Try it with an open mind. You may be pleasantly suprised.
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MOT, I agree with ruthbru. I am having hand issues, but I am having an orthopedist look at them this week. A lot of SE's can be controlled if and when they occur. Please remember that the best SE is staying alive.
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What a fantastic attitude Elizabeth1889 - one o the side effects is staying alive! Just what I needed to hear today!
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I am in my 4th month and no SEs to speak of....also the imagination can be at play here as well! Not every pain is a SE.
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MOT-- I am just a few months from being done witha arimidex. I have some side effects, but none are deal breakers. I have hot flashes, take gabapentin so they don't wake me up at night. the arthritis in my knees is worse, claritin and keeping moving keeps that bearable. I wear wrist splints at night, on whichever hand is bothering me the most during the day. I know it sounds like a lot, but I get more troublesome side effects from my asthma medication (heart palpitation, shaking, anxiety) and my antidepressant (occasional nausea, wierd dreams, dry mouth) but the conditions themselves are MUCH worse. A recurrence or finding a distant met of bc would be a whole lot worse than the hot flashes and hand issues. Keep in mind that most women do not have problems and are not on boards like this. It can give a skewed picture of the side effects of the AIs. You can always try it and stop taking it if you can't tolerate the side effects, and many women do better switching from one to another. Please don't let what you read here make you not at least try one of the AIs.
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Interesting maybe I should go back on Arimidex since Aromasin seems to target small muscle issues. I don't want this carpel tunnel!
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So glad to read such positive feedback for MOT. I just started on Arimidix almost 2 weeks ago after a reocurrance of ILC. Five years ago, after initial dx of ILC I decided not to take hormone therapy. My cancer was caught early, small and decided I would rather deal with the risk than the side effects of an AI. Well, now here I am. I am not second guessing myself, I was comfortable with that decision and still feel it was the right thing to do at the time. If I had had a crystal ball...then maybe I would have chosen differently. But no one does. I do wonder if I had an Oncotype score at that time, would it have changed my decision. This time my cancer was still caught very early so prognosis is still excellent but obviously it is a persistent bastard so I do not want to press my luck. I am concerned about my bones since I am already slightly osteoporotic. But I will use this as motivation to improve diet and lifestyle. I do not have high risk for fracture according to FRAX score so will not go on a biphosphonate at this time. Both my DH and DD urged me to take AI this time using the same rational used above- most people do not have Bads SEs and if SEs are intolerable you can stop. My RO also reminded me that she did a study a few years back which showed effectiveness of acupuncture for SEs. I like that idea. Bottom line, it's a personal choice and one made based on individual experiences. MOT, I wish you peace with your decision.
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Thank you to everyone who responded to my rambling -- when you are on a board like this, it can seem like "everyone" is having bad SE issues. I almost didn't want to check in this morning because I didn't want to hear more bad news. So thank you for the pep talk from the other perspective and emphasizing that SE vary and in most people are mild.
And Elizabeth -- I like "staying alive" as a SE!!
Dobie -- I also had a small tumor with no node involvement and so was thinking maybe no arimidex....so I do appreciate you sharing your story. Acupuncture for SEs would be good to keep in mind also.
Again thank you all for sharing. I had almost talked myself out of hormone therapy, but will approach it now with an open mind. I try to do alot of spiritual work on myself so maybe that will help; I had very little problems with LX and radiation treatments.
Everyone, have a great day!
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Dobie
happy to see you're not 2nd guessing yourself, with a less than 1 cm, grade 1, the "odds" are you wold have had a VERY, VERY low Oncotype score. Really - also, I'm in my fifth year on the A Team, and can honestly say it gets BETTER. I am hoping my oncologist lets me stay on for a few more years.
Also, lots of easy, well, kind of "natural" ways to address issues with higher cholesterol: no red meat, olive oil, almonds, Fish Oil, and those who can take it: NIACIN. Ask Ruthbru about the Niacin ;-) Darn, it really works, but, like the statins can raise blood sugar levels for some, including me. But VERY effective at lowering my cholesterol!
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I started anastrasole in March and have not had any bad side effects so far.
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Hi all, I've been reading but haven't posted. I had my blood work done by my Primary, I had a very high liver function results, he got in touch with my onc, they decided to repeat the blood work, and it came back normal! Thank the good Lord, it was just a fluke thing I guess. So all and all my blood work is excellent, no issues with sugar, cholesterol, etc... I do have this annoying shoulder issue which is ALWAYS now since A.I. and issues with the arm/wrist/cramping in my feet, and stiffness in knees etc. especially in the a.m. but its all doable. I am going to see if I can find a acupuncturist in my insurance in my area. I am a total of 6 months on A.I.'s now with a 4 week break and switch from Arimidex to Aromasin. Oh and I do have the nasty mood thing working, just ask my family
Ginger
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I'm on week 5 of Anastrazole and so far have had NO side effects. My MO said most women have few/mild or none, so I'm hoping/betting I'm one of those....at least, I'm keeping a positive attitude. My bone density test was very good, so I'm really not worried about bone loss. The only thing I'm going to watch out for is elevated cholesterol, since mine sometimes runs a little above normal. Keeping my fingers crossed!
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Mind musings and another perspective on SEs. Between the time I was dx in march and starting on AI beginning of June I had to do a little soul searching to psych myself into taking. I thought about how i have felt over the last 5 years. I know I have had plenty of days when I have been dog tired, stressed, head and body achy. I tore my meniscus and had to have knee surgery. I was told after MRI of knees that have arthritis. My weight and cholesterol has also crept up a bit over the last 5 years. If I had been on an AI I likely would have blamed that. But I wasn't so I blamed it on getting older and having a physically and emotionally draining job. Any of us who are old enough to be on an AI know what I am talking about. So I will try to keep this in mind as I go forward and try not be too quick to attribute these things to the medication. Having said that, I also appreciate those who have had intolerable SEs and have had to make difficult decisions to regain quality of life. Happy Wednesday evening everyone.
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Hi gals,
I have been on Arimidex for 5 years and go to see my oncologist tomorrow. I don't know if he'll keep me on it a while longer or take me off. I hobble around quite a bit in the morning and get terrible hip/back pains when confined in a car for several hours at a time. Other than that, I have tolerated it well. I went for bloodwork last Thursday and my oncologist's office called today to tell me that I need to see my primary care physician because my cholesterol was high. (Of course I panicked because they've never called before and asked me to call them.) I'm sure you addressed the issue of high cholesterol and Arimidex in earlier pages but I haven't been able to find them by skimming. Has anyone been diagnosed with high cholesterol after you took Arimidex? I'm trying to get a feel for this because I've been gone quite a bit of the winter and haven't exercised and eaten as well as I should have been eating? Is is possible to lower the cholesterol if it's attributed to the Arimidex through diet and exercise?
As for sprinkle, I, too am ER- and taking Arimidex. That's because I am PR+, so perhaps her progesterone (the other female hormone) is also positive....just a thought since that also relates to my situation.
I'd appreciate any ideas you have on the Arimidex and high cholesterol.
Thanks,
Rita
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ritajean, I don't know if it was diet, lack of exercise, arimidex or a combination but in Feb. my cholesterol was high, both HDL and LDL. I was scolded severly by my cardiologist who said that it had better be lower when I return in a couple of months or else ? Well, I saw my PCP this week and labs show lowered cholesterol. Yippee
I went on a 21-day fast that only permitted whole grains, beans fruits, green vegetables and water. I also began walking. All of that I'm certain helped.
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All the Other Lovely Ladies, it has been a long time since I've traveled through, but reading the posts on the achy side effects and constipation have prompted me to post two questions:
Has anyone experienced pain underneath the foot? I haven't injured my foot in any way but it is so painful especially when I stand and try to put weight on it.
With the constipation, I have had this problem for a long time even before diagnosis. This time, I am not having any of the bloating, stuffed feelings. I don't look like I'm in the 2nd trimester of pregnancy either. I just haven't been able to get natural relief. I have taken about 8 ducolax in the last week. I took 2 tabs last night, got relief early, early this morning and haven't been to the pot since. Any suggestions????
Thanks, Wanda
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Thanks Wanda. You give me hope that I can possibly control the high cholesterol with diet and walking.
I have never had pain in the bottom of my feet but I have had pain on the tops....so much so that it made wearing some shoes unbearable. I found that magnesium and Vitamin D3 helped.
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I had the trigger release surgery in March on my middle finger and thumb. I am happy my thumb has quit hurting and for a while the middle one. Last week the middle one started clicking again. Grrr so I have an appointment week after next for him to recheck it. I am hoping a shot or therapy is all I need. I still need to have the other hand done but it will have to wait until next year. DH changed jobs two weeks ago. Still mad because I had met my out of pocket max. grrrrrrrr.
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Wanda - Have you tried Miralax? The generic name is polyethylene glycol. OTC med for constipation. I'm a hospice nurse and it's one of the first things my patients get for constipation. It draws water into the stool so not a "laxative". I tell my pts it has no taste and can be mixed in any liquid but must confess I've never tasted it. Supposed to dissolve completely but I just can't see taking it in water. Would think much more palatable in juice. Maybe worth a try. Sure sounds like Dulcolax is not working for you.
Another old fashioned medication is Senna which is a laxative.
Hope this helps.
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Wanda - Of course, you should consult with your doctor or his nurse to be sure.
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