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Arimidex - Coping with the SE's

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  • bingbing
    bingbing Member Posts: 4
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    Hi, I usually don't post very often ( once in a while on LE thread, as I also have Le ) Anyway I am on the downslide of taking arimidex. I have 10 months to go for my 5 years. May 31,  2011 to be exact (not that I'm counting or anything ) LOL  I have the usual aches and pains, but I'm also 65, so that might have something to do with it. I have minor hot flashes during the day and night sweats which I must sleep thru, because I only notice my nightgown pretty damp some mornings. It doesn't wake me up anyway. When I first started , in fact about 6 months into arimidex, I couldn't lift my leg to put on my socks and could hardly walk. But that subsided gradually so that I hardly noticed that I was getting better. I must confess I blame everything on   Arimidex. But right now I must say  I am a little stiff, have the minor hot flashes, creaky knees, but overall feel pretty darn good, and I am alive. so anyone just starting, I would say keep on plugging, it does get better, or else we just adjust to the new normal, I don't know which. But I also know that it is doable. I don't know if my onc would recomend more than 5 years, if I would keep on it or not.  Hopefully I won't have to make that descision. Just my 2 cents worth. By the way, lowrider, I am in Mn too.   Sharon

  • hrf
    hrf Member Posts: 706
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    I've go the foot/toe numbness from chemo. It hasn't gone away and it's been over a year. Although I did have it in my hands and that has cleared up. The numbness is no better or worse with Arimidex.

  • lakewoman
    lakewoman Member Posts: 221
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    Regarding effexor As some of you may know from way back LIKE almost year and half ago I wanted off effexor,,had been on it for about 6 months,,,REASON ~~~ruthbru you gonna love this to jump start my libido,,hahhaha well  that was difficult to get off that med ,,INSOMNIA with capitals!!! but I did it! gradually ,,Ask if you want to know how I got off it gradually ,,Going off it  did not help libido but  that, too ,is long ago story how I got that back!!!  I thought recently I had SE of the blues but think maybe heat and humidity ,,but still not sure TY God they are gone,,lasted about 3 weeks,,,For those with hotflashes I was one who when I got BC diagnosis  had to rip my double dose estrgen patch off and then take arimidex ,,kinda abrupt EVEN  at my age!!!  ANYWAY the 15 + a day HF's subsided after about year and 1/2 what a surprise and I mean let up !!!!! I have so very few now . Hang in there I hope it happens for all of you suffering from them!

  • lakewoman
    lakewoman Member Posts: 221
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    oh and PS take  one 25 mg benadryl for sleep aide,,Cousin doc recommended that BC,,,,before cancer!

  • mersmom
    mersmom Member Posts: 79
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    Hello Ladies,

    So very glad to be back in the groove with the A team...I quit the other thread months ago and checked back at the right time. It had been getting out of the theme  a long time back. 

    I too have had trouble with eye dryness. Here is what was recomended to me....Use a gel eye drop,they last longer.At bedtime a couple of times a week I use a eye ointment  by Clear Eyes...I keep it on my night stand...it WILL give you blurey vision for a few hours. It really has worked wonders for me,I had mornings that my eyes were literally stuck shut because of lack of tears.

    Lately I have had cramping and pain in my baby toe and down the side of my foot at night...I have gone back on the Gabapentin at night and it seems to be helping. It has been in the 90's here the last few weeks which helps with some of the aches and pains.

    Lakewoman,nice to see you back...like you,at 60 I am so glad that with all the SE at least I know that on a bad day I can at least look forward to a good ole roll in the hay so to speak to get the endorphines running.

    I also use benedryl at night....when added to the Gabapentin I sleep like a rock now and it also gets rid of the night sweats.

    I have now been on Arimidex for 1 year officially on Saturday. If I would not have found all of you I am certain I would be confind to a chair in a severe state of depression. My ONC in Seattle marvels at all of my home remedies and I give all the credit to "my team" My thanks to all.

    Think I will read for a while and then head for bed. Blessings to all.

  • jet3648
    jet3648 Member Posts: 8
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    thanks Ruthbru for answers to my questions.  I start rads wed.. getting the 2 zaps a day for 5 days version so I will be finished next week.   Rad onc Dr. said I will have some burns because of where theyhave to shoot - bottom of breast in the fold which always burns more.  So will deal with that.   A is not bothering me since i changed time of day to take it.  I have been having nite sweats but it is 105 in the day time here and only down to 95 or so at nite.  Course we have AC but still....... so dont know if I can blame it all on SE's.    will let you know how the rads go in a few days. 

  • ruthbru
    ruthbru Member Posts: 46,928
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    Good luck with the rads, jet. I was zapped in the fold too but did OK (although mine was spread over 6 weeks). Put whatever ointment they tell you to use on religiously from the start (not before, but bring the tube with you into the changing room so you can smear it on right after). Looks like just about every place in the country is boiling hot at the moment. Even with AC the air just feels heavy.....night all! Ruth

  • MTG
    MTG Member Posts: 337
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    Jet - This will sound strange but you might want to ask your doc if immediately after each rad treatment you can wipe down the radiated area in a diluted solution of cold water and cold Apple Cider Vinegar and then later on in the day use the same sort of solution on a washcloth to soak your breast. Vinegar, esp Apple Cider Vinegar (ACV) is traditionally used by labs to wash down skin that was accidentally exposed to radiation, it rids the top layer (not deep tissue) of it. ACV is also anecdotally used by many for burns and sunburns. I researched it, showed the research to my radonc, got the okay to use it and had very little burning. If you're interested, PM me and I'll send you the research. In any case, good luck with rads.

  • KinAZ
    KinAZ Member Posts: 15
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    Hi everyone,  I have been on arimidex for 20 months now, and have hot flashes/sweats and joint pain...recently my muscles have started to ache...the worst is the joint pain, i took a 2 wk arimidex vacation with no relief...my asthma flared up last week and saw my primary dr who put me on steroids....wow, did i feel great, absolutly no joint pain, no trigger fingers, no muscle aches!!!  I realize steroids are not good for us long term, but........why cant it be prescribed for a vacation...so to speak????  The pain builds to a point that emotionally I feel defeated, and ready to go off the arimidex....but last wk, i was able to regain a positive outlet, and stayed on the arimidex....i am curious if anyone has ever discussed this with their onco???  i intend to next month when i go in for my 6 mo f/up....again, i know steroids cant be used long term....but, i have been given the arimidex with few options for se....any other thoughts????

    karen

  • suzieq60
    suzieq60 Member Posts: 1,422
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    Hi CrissyB - Thanks for the welcome

    I have 3 numb toes from the chemo - no worse from the Arimidex. I'm not really noticing any worse joint pain yet - having bad knees keeps me in pain anyway. My DH has noticed I'm very restless at night, but that could be hot flushes while I'm sleeping. I've always had to get up a couple of times in the night to pee, so that's normal for me.

    I have discussed the possible joint pain from the Arimidex with my onc - he was very worried I would have it. He said to take fish oil and glucosamine (for my knees), which I do faithfully every day. He has certainly not offered any other medication. I did ask about steroids but he said the SE are too serious. Lucky I haven't had any extra pain, maybe the fish oil works.

    Sue

  • ruthbru
    ruthbru Member Posts: 46,928
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    Exercise helps to minimize the creakiness and joint pain (really, it does).

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    I had neuropathy in my fingers and feet from Taxol.  It's slowly gotten better but stalled out; no improvement all summer.  I hope that's not an SE from A that I'll have to deal with again; I agree with the recommendations to let your dr. know.

    I take Neurotin (gabapentin) for my neuropathy but I know it also helps keep my joint pain down.  Another pain med to add to your list to ask your dr. about!

    My back, hands, and joints have been creaky again the last several days, much more so than in recent weeks.  Ratz. I was hoping the pain had stabilized but I know from others here that it can come and go; guess I'm in a "pain" cycle.

    I take vit. D3 (1000-2000 iu/day), which also helps, and am going to check into fish oil and glucosamine... want to make sure neither will interfere with my other meds.  Oh, boy, more meds, because 18 pills a day isn't enough Smile

    And, as mentioned, exercise really does help.  Moving helps.  If I have to be still for long periods of time (at a desk, traveling, etc.) I try to make a point of getting up and moving around for a few minutes; otherwise my joints really nag at me, especially knees.  Oh, and I've noticed low chairs are harder on my knees than ones where my knees are bent no more than 90 degrees. 

    Thanks for mentioning water, lowrider; I realized yesterday I haven't been drinking as much as usual.  I'll up that and see if it helps with my current round of pain.

    I envy those of you with any sex drive at all.  Mine disappeared around when I was dx and I don't have a shred any more.  Not that I have anyone to share it with, but still... one can hope :)

    Glad y'all are here. 

  • balsie
    balsie Member Posts: 228
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    Hi All~  Glad this thread was started.  I have been on they almighty "A" since January 1st.  I do have aches and pains in my feet and joints....my hands and fingers are stiff.  I did take prepackaged foods out of my diet along with refined sugars.  I see great weightloss and some of the discomfort is gone.  I did put on the other thread that I went to get my prescription when it first went generic and is was just a little less than the regular but the other day I went to get it and it was only $2.96.  I sure hope the generic is going to do its job.  I have sometimes not had success with generics (thyroid meds) 

    Enjoy your day ladies

    Balsie 

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    Question for those taking fish oil:

    How do you know the supplement you take won't make you smell like fish (I understand some do, some don't)?

    Do you try to balance EPA and DHA?

    How many grams do you take a day?

    Did you take it before A or start after?  If after, did you have a clear reduction in pain?

    Finally, how did you chose a brand so you know it's safe from contaminants like mercury, PCB's, etc?

    Thanks!

  • Lowrider54
    Lowrider54 Member Posts: 333
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    Hi ya'll...on the subject of low chairs...it reminded me of something I did - one of my toilets was in need of replacing so shopping I went.  Since getting on and off the pot was becoming an adventure, I thought, why not see if a taller bowl would help instead of the standard 15" where you end up with your knees higher than you butt (I am 5'8").  I purchased a 16 3/4' tall bowl.  Well, after my first 'sit down', I was totally amazed!  The going down part was easier and my knees where level (perhaps a tiny bit higher than my butt) - comfortable!  The getting up part - wow, what a difference - that 1 3/4'" is HUGE!  I went out the next day and purchased another one for the other bathroom!  My knees have happy potty trips (well, once I get there anyway...lol)! 

    Where else but here can we talk about this sort of thing....and Lakewoman...someday you MUST tell the ladies how you got your libido back (many husbands would love you).

    Hugs

    LowRider

  • don23
    don23 Member Posts: 213
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    I do plan on seeing a specialist for my dry eyes just to make sure that is what the problem is. Until then I am using moisturizing eye drops and they have helped somewhat.

    I am now wondering too if my hot flushes are somewhat due to the hot weather we have been having. Although I am in AC most of the day I get this feeling of warmness come over me when I am just sitting still and start sweating a little. Would you consider that a hot flash? I call them hot flushes because I am not drenched in sweat. I am hoping that when the weather cools off they will ease up.

  • chrissyb
    chrissyb Member Posts: 11,438
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    I call the melting moments.....lol

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
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    I am having libido problems too.  Main Squeeze is out of town and I am crawling the walls!

    The point is that I have not noticed a major change.  I do want to point out that much of this is in my brain, and of course how I feel about myself.  I think I might feel differently if I had lost a breast, but I am only a bit uneven.  I had a wonderful breast surgeon.

    The rest of my body looks just great.  Right now, I look fit and healthy.  I have lost most of the weight that I had gained about 4 years ago.  My hair is now at the point where it looks cool as opposed to "post chemo".  I made sure I colored it as soon as I could.

    I feel wonderful, both from all the long distance cycling events and fact I have work headed my way.  So am back in my game.  So not just Main Squeeze, but I got chatted up cycling 2 days ago by a guy a lot younger than I am.

    I think that a lot of the libido goes back to feeling whole as a woman.  I know there are physical things going on, but if your libido is intact, you will work past them.  Here are some of the things I do.  Most of those are sensual.....

    - Exercise.  You need flexibility and endurance.  There is a reason other than vanity I do those leg lifts with my exercise ball.

    - Nice bath potions.  I favor Body Shop, but have others.  Smelling nice is wonderful.  I also soak what hurts such as after my 50 mile ride on Saturday.

    - Certain foods are also highly sensual.  It can be a real pastry or the perfect piece of fruit.

    - The right underwear including bras that do something for you.  I had to change bras to wear my uber cool T shirt last night.  Then it looked just right.  I have a couple of pairs of silk undies too.

    - Perfume.  Yes, you are worth it.

    - Sheets......reminder to swap out my ratty ones.  But you want to sleep in something divine.  And 100% cotton, although I did once have a vintage linen top sheet.

    - AM coffee or tea.  Not the place to economize.  Wake up to something sensual and wonderful.

    - Do a clothes edit.  If it doesn't make you feel wonderful (or is a basic you absolutely need) get rid of it.  Fewer clothes that do something for you.  The French are masters at this one.  We tend to go for quantity.  My big investment recently was to upgrade my cycling wardrobe.  Now, I can actually find the stuff I wear. 

    - Note on clothes.  It usually has to FIT for you to feel fab in it.

    Finally, get your husband or SO to do a massage.  Guys are usually really good at finding the places that "brighten you up" and working their way down to the appropriate spots.  It may take several sessions to get there, but I would expect this all to end in some "action".  That is the goal......to get back in the groove.

    Fortunately, I never left it.  Lakewoman can probably be more helpful here.

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
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    On hot flashes or just plain feeling miserably hot.....

    One of the reasons I live in Seattle is that I hate hot summers.  This has been true since I was 20, and I couldn't stand hot days growing up in Vermont.  I find that exercise really helps my body regulate temperature.  So does drinking enough fluids.

    So all those summers I lived north of NYC, I would go out cycling early in the day on weekends.

    Here in Seattle, it's easy to go swimming with tons of public swimming beaches.   So I cool off that way.  Have not needed to this year, but last year, on the one really sweltering day, three friends and I hung out underneath a tree next to Lake Washington.  WHAT heat wave????

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    One more question:

    Anyone use aspercreme or something similar,and does it work?  I'd rather use something topical than take pain meds.

    I'm not unhappy with my body (although I'm working to get into better shape and lose weight).  I'm just used to having a spontaneous sex drive, and I have none.  I wonder if age is a factor, not that I feel old, but I went through menopause 15 or 16 years ago but was on estrogen until a few years ago (yeah, I know), so I know I'm not classified as young any more... Claire, I already do a lot of the things you suggest, and I agree, feeling good is certainly one key.  Again -- no one around to take advantage of it, but again -- I can hope!  So any help is appreciated!

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
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    Aspercreme and I have been tight for quite some time.  Yes, I use it on my knees when doing long rides, and I take ibuprofen.

    A year ago, I was using Aspercreme and a herbal concoction on my right shoulder as well as taking aspirin so I could sleep at night.  This was just prior to diagnosis. I had pulled my shoulder doing a high country x-country ski event six months earlier.  I thought the ski pole would hold me in deep snow, and it didn't.  (My shoulder is just fine now.)

    I did not use it on my sore glutes.  I would give it a try.  I find the relief lasts about 6-8 hours.

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    Great to hear about the aspercream, I'm buying some today -- thanks, Claire!

    I'm with you on the weather in the NW and I miss the NW -- tell the mountains hello for me!

  • suzieq60
    suzieq60 Member Posts: 1,422
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    I take liquid fish oil - 1 teaspoon a day - beats taking lots of extra tablets. The hot flushes are way worse than when I went through menopause 5 years ago but I just ride them out.  It does help being winter over here. Exercise is a good idea but I've been avoiding getting back on my bike - something I really need to start doing. Walking is out because of my crappy knees. Must go back to the gym too - one day :)

    Sue

  • KinAZ
    KinAZ Member Posts: 15
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    I have not found any joint pain relief from walking....hurts the hip joints too much, but i do find relief by getting up frequently...not staying down too long.  i will give the fish oil a try, and plan to talk to onco about the steroids....it would be great to have a week with no pain and stiffness for my sons wedding, or a much needed vacation!!!!  the only se i had from them was not sleeping..ha ha....thats normal with the arimidex and no hormones...lol  my asthma only flares up when i get around things that irritate my lungs, so i avoid those things, and rarely have trouble....my 5 yr old niece sprayed a can of body spray, and must have sprayed out half the can before i could get to her.....such a girle girl

    hugs to all, karen

  • jessamine
    jessamine Member Posts: 123
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    Nature grrl- on fish oil- I take 4000 mg a day and have since before dx- I already had pain issues and it has been helpful for me for both pain and anxiety. I believe you want to have somewhat more EPA than DHA (maybe not quite double?) but the important thing is to make sure you're getting enough of either- I was told to look for a brand that had at least 750 combined per serving (often 2 pills). Good brands will say on them that they are PHB etc free. I take Nordic Naturals brand which have 1280 mg combined EPA/DHA per 2 pills which is the highest I could find. They aren't cheap though!

    Oh and- I don't think I smell like fish! I hope not! But I've never heard of this. I wouldn't worry.

  • suzieq60
    suzieq60 Member Posts: 1,422
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    I have noticed my hands feel a bit funny when I wake up - like they've gone to sleep and a bit crampy. I asked the onc about it today - looks like it could be the Arimidex. I just flex my fingers and they're fine.

    Sue

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    Ouch, so much pain last night that I lost sleep: knees, elbows, wrists, thumbs.  Aspercream helped me fall asleep; woke up with one really bad wrist but otherwise better. 

    suepen, I've had that same experience, although the last few days it's been WAY worse.  This morning it's only my left wrist/thumb so I'm wearing a new designed-for-women, left-hand-only brace (my old brace is for either hand but very clunky; couldn't type with it).  I hated paying the $ but it is very comfortable and it's saving me a ton of pain.

    jessimine, thanks for details on fish oil.  I'm going to look at brands later today. 

    lowrider, I hadn't thought about toilets (I don't know why, because as you said, they can be hard on the knees to stand up from (all English teachers ignore that sentence)) but that's a great idea.  When I was buying my wrist brace this morning, I noticed "seat elevators" that sit on top of your toilet and raise it by about 5" -- that might be a great, easy fix for some of us.

    sunflowers, I wish Arnica gel worked for me, I've tried it several times at a friend's urging.

    Oh, and Claire, a PS, I was thinking about some of your comments about sexuality last night, and wanted to thank you for the reminder that even if there's nothing sexual going on in my life, I can still enjoy sensual things!  I know that wasn't exactly your point but it was good for me to remember. 

  • whatnow
    whatnow Member Posts: 20
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    I wonder why so few doctors seem to prescribe Aromasin instead of Arimidex.  I just switched from Aromasin to the generic Arimidex due to cost ($270 versus $20...duh!).  And the side effects were SWIFT!  Doc gave me a note with the script that said "May experience more aches and pains at first".  If they KNOW Arimidex has that much more bone pain...WHY prescribe it?  I see NOW, that there is a reason-cost.  But I feel SO lucky that I got Aromasin for the past few years instead.

    On Tamox - I had debilitating fatigue, hot flashes, and manageable bone pain.

    On Aromasin - the fatigue lifted a LOT, almost zero bone pain, but lots of hot flashes.

     I took ONE generic Arimidex and that night my wrists started aching.  And it hasn't let up since!  CRAZY how fast that happens.  I assume it's then probably also much worse for your bones than Aromasin. I had a bone scan when I started Aromasin, and after 2 years.  All is well. 

    I'm not going back to Aromasin - can't, due to cost.  I can handle the bone pain.  But - geesh!

    I'm sure this has been mentioned a thousand times. But I just went out to get Tylenol. Happened to glance at "Arthritis" Tylenol, wondering what it was.  Hey - it's just stronger!  650 mg instead of 500. Yep, I snapped some of that right up!

    Luck to all.

  • karen1956
    karen1956 Member Posts: 4,501
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    whatnow....I had worse joint pain on Arimidex as well as CTS...but on Aromasin, I had worse insomnia, more memory and cognitive problems, developed tendonitis (surgery on both wrists), more depression etc....Aromasin is typically not Rx till you've taken tamox or another AI for a period of time.....  As far as cost, I'm lucky my insurance has paid for both except for my copay....now that Arimidex is generic, I'm sure if I was taking that, they would Rx the generic version.....but for now, I am enjoying a break from all AI's....as bad as the joint pain was...I think I rather deal with that than the cognitive and mood impairments I had on Aromasin....

  • ruthbru
    ruthbru Member Posts: 46,928
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    Really shows that everyone's body responds differently to different pills/treatments etc.......ALL the anti-hormonals should be generic, so that a person could feel free to experiment with what would work best for them and not have to base their choice on the cost!