Arimidex - Coping with the SE's
Comments
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Interesting article in the paper today about memory being affected by sleep (or rather lack of sleep). They were comparing young people with seniors. The young people had longer periods of sleep and more of a certain kind of sleep and were more able to retain information learned before going to bed. The theory was that the lack of sleep prevented the brain from entering the info into long term memory storage. Given how many people on AIs and chemo have problems with sleep, especially uninterrupted sleep, perhaps that's the real source of chemo brain and memory problems on AIs.
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Wren, It is quite possible that chemo and AI's at the very least exacerbate sleeping problems. I had sleep issues before BC and I'd have to say none of what Ive had...Chemo Rads Tamox and AI's have made it any better...that is for sure. I also am VERY likely to agree that insomnia has a bearing on memory issues. It stands to reason, when youre tired you can't think straight.
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How can I get a good night sleep?
That is the $64,000 question for me!
I would give anything to be able to sleep even 6 or 7 hrs straight!
All I get now is at most 3 hrs of interrupted sleep!
I have tried natural remedies, Melatonin, prescription medication
But nothing helps!
The few times that the sleeping pill has worked and I was able to get at least 6 hrs sleep, the next day I would feel as if I could conquer the world! My brain felt uncluddered, pains and aches much easier to handle!
Unfortunately, the norm has become "sleepless nights" and "awful days"!
This lack of sleep has affected my memory in such a bad way that sometimes it really scares me .
This is really affecting the quality of my life and I don't know what to do to correct this problem!
I think many of you can relate!
Mena0 -
Mena, I hear you. I'm very fortunate if I can get back to sleep once Im awake...like after going to the little house in the night. Sometimes I can't get to sleep at all or if I do 3 hours is not uncommon for me either. Occasionally I can do 7 hours and 8 is rare even with sleep aids. Unless Im going through an especially traumatic time (and we all know how much BC is the gift that keeps on giving) I try not to get into a habit of taking them day after day.
I guess you have spoken to your GP? It's so awful this problem. Do you have other issues around you that effect your sleep that just add to the pile... like external noise of some kind? If so is it something you can do something about? That may not be helpful but it's just something else maybe, that can be taken into account.
Each day I try and do a basic diary of meds, food, walks, sleeping hours etc and I devised a way in excel to make the data show up as a graph. I could also average out what my sleeping hours were. Trouble is I GET SO SICK of all this heavy weather monitoring I blow cold on it. It's handy though if something is really annoying you.
I asked my GP about Melatonin but it is prohibitively expensive here....like so nmany other things. Ive heard good things about it, but as we all know we are all so different.
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I read the same article. I swear that's why exercise in the fresh air is so important.
So even though I had a lunch meeting on Sunday and coundn't go skiing, I am sure my 2-3 miles of walking made a major difference. I did 10 miles of x-country on Saturday with a lot of climbing and downhills.
I have known for a very long time that my brain works a lot better with regular exercise.
Speaking of which, I am off to bed
There is nothing better than a nice hot fragrant bath after a long ski, hike, or cycle and then a lovely dinner with wine. O wait, I can add one thing to the mix.....
All promote a wonderful night's sleep with the possible exception of the wine. But a girl needs BALANCE in her life.
Today's mix was a lot of work, some exercise, a nice dinner w/wine. The "other" will need to wait a few days.
That's my story, and I'm sticking to it. Sweet dreams. - Claire
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Mena, Before BC I was a great sleeper, but since then have had horrible sleep problems. I tried melatonin, Neurotin (worked for a while), then got precription Rozerem (worked only a while) and now am on Clonipin, which works better some nights than others. It's a pretty strong medicine, but my PCP says sleep is so important that the risks of addiction are outweighed by getting a healthy night's sleep. She said she'll keep working with me to make sure I sleep. (My docs don't recommend the Ambien kind of sleep aids...
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My Effexor rx ran out and within 36 hours the hot flashes were back with a vengeance, which of course results in no sleep. I kept calling my unresponsive doc's np until I finally got a hold of her. Now wondrring how long until it kicks in.
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Last night I took a restoril to sleep, more out of sheer desperation, then anything else and I must say I did get about 6 hrs of sleep!
Today I felt like a new person!
I am on vacation in Florida with my Best Friend ! She arranged it so that I could have some R&R . We are in a beautiful resort in a two bed, two baths vacation rental With every amenity possible and because of my lack of sleep I have not been able to be an happy camper! Besides memory issues, when I don't sleep, the next day I feel physically sick! Nauseous, dizzy, light headed, anxious and panicky!
Tonight the question is " do I dare to take another pill?"
For the longest time I relied on Xanax to sleep and it took me two years to stop feeling withdrawal S/E, so now I am so afraid that if I start relying again on a pill to sleep, another pattern will be started!
Sometimes, I think of
Michael Jackson and I can really understand his desperation for some sleep and his willingness to try anything even anesthesia!0 -
Mena, I would take the pill if it were me. Enjoy the R & R, then quit when you return home. It would be too sad to waste the vacation feeling crappy.
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I have been on Arimidex and Zoladex for 6 months. I did get hot flashes, insomnia, crushing fatigue, hairloss and bone pain but it's basically all gone now. I almost quit over the SE but my oncologist did something smart: he said that if the SE kept bothering me he would take me off the AI. Of course that put the ball in my court and I toughed it out. I also stopped worrying about the SEs and started worrying about my job and other stupid things instead. Bottom line, I am absolutely convinced that hairloss, hot flashes and insomnia are largely caused by stress and anxiety. However I must say it took 5,000 iu vitamin D every 2 days to make the bone pain go away.
That's just my advice: try not to worry, it gets better over time. And don't take benzodiazepines, you'll end up with a bigger problem. I had to slowly withdraw from Ativan 10 years ago...not fun!
Caroline0 -
Mena, take the sleeping pills and get some rest. Once things settle down you can try out some relaxation techniques, stress reduction/hypnosis CDs etc. Which work suprisingly well for me now, but when I was in the middle of everything I could not sleep at all and would have died of exhaustion or killed someone without a sleeping pill. If you are taking 10 mg. you could ask about cutting back to a 6.25 dose if you are worried.
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I agree....you need sleep at any cost or all else makes no sense. You can't deal with all the treatments and meds without sleep.
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I can't believe how such a tiny pill can cause so much havoc in our lives! Damn Arimidex!
Right now I am also worring about my right arm looking a little swollen!
LE comes to mind!
Calgon take me away! Oh yea, I am away, but it's NOT helping!
Certain baggage just cannot be left
Behind!
Mena0 -
Dry eyes because of Arimidex or estrogen reduction?
Can anyone recommend a good brand eye drops for mild dry eyes? I started having issues w/ dry eyes 2 mos. post hysterectomy,June/12--I asked the insurance nurse that checks on me while getting treatment for my bc if it may be caused by Arimidex (I'm on AI since Nov.14/12)she said humm and told me that it could be from reduction of estrogen and to ask my dr./pcp for a eye drops that may work--lubricant type. I'm going to schedule my yearly check-up next mo. but for the meantime needs something to use. my dry eye is worst late in the day, in the a.m. it's not too bad.
so far, the SE from Arimidex in my case are minimal, a little bit of joint pain (I get them too before Arimidex, it could just be part of getting old--I'm 46), dry eyes? and hot/cold flashes which is worst in some days of the mo. around the time I usually get my period. which is odd as I don't get periods anymore. :(I also noticed the increase in anxiety, I take 20 mg. Celexa to help with the hot flashes my MO said they'll help with the mood too, I think they do because it's only recently that I started feeling more anxious than usual for no reason,this is why it's a little bothersome, it takes a good night's sleep for it to go away not the usual hour.My MO said I could go up to 40 mg. but I said I'll stick on the 20 mg. because I don't even like to take meds if I could.anyway, all in all the SE's are tolerable, the worst thing for me is feeling anxious. I'm back to work and have a routine.and excercising, it helps a lot, it gets me out of the house and keeps me from thinking about bc and things that happened with my health recently.
Thanks in advance and take care everyone,
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clariz, My ophthalmologist insists I use preservative free eye drops. There are several brands I've found that are fine except they are single use and very expensive. I've just found Thera Tears that come in a squeeze bottle for multiple use. Much cheaper. You just have to be very careful to keep the opening clean.
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Hi Clariz,
I have had dry eyes for a few years (pre-bc) and continue to have it. I have a wonderful eye doctor who explained the our tear ducts produce less "tears" as we get older. They are like tiny glands on our eye lids. He said that heat helps warm them up so that they produce more "tears". He suggested getting a gel eye mask from CVS, warm it up by running it under hot water and keeping it on until it cools. He also suggested eye drops, such as Doxie mentioned, as well as Omega 3 vitamins. Of all the things that I do, I now love my gel packs. I put them on right before i go to sleep - very soothing and relaxing.
Best, Beau
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Just been reading the last few pages of posts -- haven't been on this board for a while. Had some hand numbness after a couple months on AI, MO recommended Vit B complex vitamins and it went away. Then after 6 months got tendonitis in both shoulders, right worse than left. I am convinced it is a SE as I have never had this problem before and do not remember doing any activity that would strain both shoulders. What helped alot was massage therapy, on the shoulders AND neck and side of my trunk I had the LX on. I guess it still had some residual muscle and scar tissue stiffness. And physical therapy to the shoulder to reduce edema and pain at the tendinous junction, and for progressive strengthening ex. for my rotator cuff. So much better now than a month ago. Has any one else developed muscle/tendon problems on AI?
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MOT-i have two frozen shoulders, but it started before my bc dx. I'm pretty sure the AI is making it linger, however. PT and stretching exercises do help.
Glad to hear you're finding some relief. Thanks for the tip on the vit B.
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MOT - my double shoulder tendonitis started out with hand numbness too (this was 7 years ago and not related to AI's). I sent you a PM about this. Not to confuse the issue, I have some hand numbness now, definitely related to AI's. I believe it is all about inflammation.
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I have rotator cuff tendonitis in the mx side, but it is related to an injury (trying out the zip line at GS' school). Much better with exercises now.
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Hello ladies
Seems like I spoke too soon about continuing with Arimidex.
I felt like a dishcloth today when I went to get Herceptin and the nurse asked me how I was feeling and if I'd had a blood test recently.
In brief, I had one last week and the results are out. Haemoglobin great (11.9) but the white blood count has gone down. In fact, neutrophils have gone down to 1.19 (1.52 on December 20 2012).
Lab made a comment that the moderate neutropenia could have been caused by my treatment. They were most like commenting on the chemo rather than the Arimidex.
On the other hand, as a rare side-effect, between 2-5% of people can experience leukopenia (low white blood count) on Arimidex. See bottom of Table 5 on page 4:
http://www1.astrazeneca-us.com/pi/arimidex.pdf
Nurse had a chat with my consultant and he told me to come off Arimidex straightaway and he will review it in three weeks time before I have my next Herceptin.
I hope this doesn't put other people off. Arimidex saves lives from what I have read. I am just unlucky.
Maybe the white count will go up anyway in three weeks!
Best wishes
Alice
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Thanks for the feedback --
I have to say that massage therapy and physical therapy are both helpful together. That massage therapist is really working on my neck, shoulders and side of chest scar tissue that I know I wouldn't have gotton mobile on my own. My insurance doesn't cover massage, even if medically necessary, so am paying out of pocket for weekly sessions, but it is so worth it. And PT with strengthening exercises and electro-modalities for pain management has been great.
Specifically vitamin B12 for nerve repair, but a B-complex is good.
Also as far as inflammation -- I'm thinking this is related to gluten and white flour/sugar intake, so am trying to modify my diet as I have lately fallen into the pasta/dessert mode....since the holidays, which is when this shoulder problem started.....maybe the AI makes you more susceptible to gluten-related problems, besides tendonitis...
Don't want chronic shoulder tendonitis to turn into a rotator cuff tear ---!
Good luck everyone
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Alicethecat -- maybe I missed this, but why are you on Arimidex when you are ER negative?
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I had a Thai Massage last summer, amazing to start with, then she used a technique she called scraping on my scar line, it got rid of a couple of the worst adhesions, still lots more, but ..... I wish I lived closer to her and had lots of money :-(
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MOT...I guess I missed that too unless it affects the PR+ ??
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I bought 3 bottles but I don't remember where except that is was on the Web. It's a Metagenics product and I think I got it through the website that gives my naturopath's patients free shipping over $100. Amazon and a number of other places have it. Google "purchase ostera".
It's about $50 for 60 tablets (take two a day) but if it's what stopped my aching feet and really does help the inflammation that causes osteoporosis, then it's worth it.
Nancy
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Hi, I noticed the dates are a couple of years or so old already. I went on Anastrozole in August of 2012, so I've been on it 6 months now. The biggest complaint I have, and I'm not even sure its from the Anastrozole is my numb fingers (just the middle three & mostly on finger tips) since starting the meds. Now I just finished 7 weeks of radiation therapy and it seems worse. I'm so confused how to approach this. I had carpal tunnel surgery on the same hand (surgery side hand R. side) a year before my dx. The surgery didn't totally correct the numbness in fingers, but it was so mild I didn't even notice it. After my lumpectomy--- about a year after the carpal tunnel surgery--- it seemed a little worse. Then I began the Anastrozole and noticed it get worse but then subside some after a few weeks. Then the radiation, and now it really bothers me. My hand seems weak, kind of stiff and fingertips numb. I even have a trigger finger that kind of clicks that I didn't have before the radiation. I called my medical onc. His office said it could be the Anastrozole and if it gets worse to come in and talk with the doctor about possibly switching. I was told to wait until it is really unbearable though if I could. Right now I can function alright; I just notice a decline in my strength and stiffness and numbness. Does anyone else have any of this. I am wondering if it's age LOL...but then who can tell. I felt really good before the dx in 2012 even though I was 66 then and still holding! I'm hoping more exercise and just being over all the treatment so that maybe I can begin to "live" again might make a dif.
The real question I had in mind when deciding to post had to do with the RECALL you were all talking about. I am concerned if it is still pertinent. I had to change pharmacies due to my insurance changing. From what I understand the Walmart pharmacy was using ZYgenerics and the Walgreens which I just switched to is using TEVA. I'm concerned about this because some of you mentioned TEVA being the recall product. I also heard when you switch pharmacies and they switch brands on you that you can have some very different side effects. Have any of you experienced this???
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You might want to call your radiation onc also. If they radiated nodes it might be from that. I've been on anastrasole since March, and lately have been waking up with numb fingers. They're ok after I've been up a while, so it could be sleeping wrong. Have you tried loratidine?
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Frostygal - I started Exemestane (Aromasin) on 8/15/12. By 11/15/12 I developed stiff finger joints and trigger fingers (in the morning) and swelling fingers when exercising. When I saw my MO shortly after these symptoms, she mentioned switching AI's, but I decided to stick with the devil I know. She wouldn't say the drug was fully culpable, nor show much sympathy, for that matter. Fast forward to last week. I went to see a lymphodema specialist (PT) to rule that out and she indeed ruled that out. Her conclusion - systemic, probably caused by a medication or something else. Saw my MO shortly after that. This time my MO said she has many women with these symptoms in their hands with AIs.
My PT mentioned dipping my hands in paraffin to help sooth. I know putting my hands under running warm water feels good. Mostly, I've found that wearing ACE wrist splints purchased at the local pharmacy mostly relieves the stiffness in the morning (worn while sleeping). Not completely, but a good amount. As far as the hand swelling when walking, one PT told me to occassionaly hold my hands overhead (haven't found that works). The lymphodema specialist recommended isotoner gloves when I walk. Haven't tried that yet.
Like Wren, once I'm stirring and moving my hands when waking up, the stiffness lessans.
One or both PTs said it was about inflammation and the tendons have very little room inside their sheaths to operate, hence the trigger finger. I did switch to an anti-inflammatory diet in December and saw some relief, albeit small. This includes gluten-free, dairy-free, salmon is my only "meat", ow-glycemic fruits and just for cancer's sake, I load up on atleast 1 pound of greens a day, in addition to "vegetables." Greens being a different category from vegetables, which are roots. Greens are where the big bang nutrients are. (I do the greens in a Vitamix or I possibly couldn't get this much into a day!)
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Linda: Good to know on the Tai Massage.
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