Arimidex - Coping with the SE's
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Sunflowers- yes I recently had it checked and it is up from where it was but not in the 50s. Don't remember the specific #. But good point and one I will address with PCP as well. I often prescribe Drisdol for my pregnant patients. That is prescription strength 50,000 iu.tablet 1 x weekly. I rx it for 12 weeks, recheck vit d level and if it is in range, mantainence is 1 monthly. Thinking of going with that since OTC is just not doing it for me.
Claire- You rock, an inspiration for us all. Cheers!0 -
I was on Tamoxafin for two years then six months after a complete hysto my OC put me on Anastrozole. I have taken it for a year now and at first I felt better but lately I have been feeling more tired but can't sleep, depressed, and lack of any sex drive. I know that a healthy relationship does require a intimate relationship but at first it was becoming painful due to dryness and membrane thinning so of course they gave me the Estring and that helped with that problem but still no drive. My OC has me taking Gabapentin, for the hotflashes and night sweats, and Effexor, for the depression, and he said they were not the cause of my lack of sex drive. Does anyone else have a problem with this because it is really cause a problem with my marriage of 23 years.
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I take my synthriod when I first get up then after an hour I take my Anastrozole. still hot flashes as well and night sweats.
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Hi All ~ I am new to this forum. I just started Arimidex (generic) about 10 days ago. I know I will read all the posts from earlier dates, but would like a quick answer if anyone can help me out. Did anyone experience hot flashes this soon after starting the drug? I would appreciate all the input I can get. Sorry, but I read some of the postings, but just don't have time to "dig" for the information right now. Thanks...Linda
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linny...I am almost into my 5th month of Arimidex and no hot flashes yet!
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Linny, I've had hot flashes and night sweats every since I was diagnosed and taken off my hormone replacement therapy drugs. The h/f have continued while on Arimidex, maybe just a bit more severe. I've been on it about a month.
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Sunflowers - Yes, I have been reading and trying many of the suggestions on here to help with the joint pain. None of them has worked so far for me but I am glad they are working for others. I have not tried Ruthbru's soaked raisin's yet but the gluten free, Claritin, exercise, etc. did not help.
Notself - I would love to swim. I think it is excellent for your health...just not feasible where I live in the tullies unless I can just jump in one of my stock tanks and hold onto the side and kick. It's been pretty hot here so I just may do that!
The new medication my doctor put me on does seem to be helping with the water retention and it has made me more mobile. I still have the joint pain but I am not limping so much.
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cowgal
sorry you are still having joint pain - the main thing that freed me from them, acupuncture. Still have it once a month. Only part of what I do, as you list several of them, but it's the MAIN part. Also, NO SUGAR, none, nada, zap! I don't have dairy either, but that's mostly because of my allergies, and it really almost eliminates the mucuos so my nose is clear.
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Thanks Sunflowers. I know I am lucky to be around to worry about side effects. Eventually, I will either find something that helps or I will get to my five years and be done with it. I have really restricted my sugar intake and simple carbs for that matter. I remember reading about your acupuncture recommendation in some of your posts. I have not been able to find an acupunturist within reasonable driving distance but have been looking.
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Jherbes- sorry no one has addressed the libido issue yet. I am a newbie to the AIs and have not experienced any SEs at this point but have counseled women on libido problems in my work as a women's health care provider. Sex drive in women is complex but men are simple. I explain it this way: women need a reason but men just need an opportunity. Also, I think as both our age and relationship get older, desire comes later in the process. In other words, desire is stimulated by action rather than the other way around. But certainly health issues like joint pain, dryness, fatigue, depression have an impact on sex drive and so do medications. It is pretty well known and documented that effexor can cause decreased sex drive, and difficulty sleeping. If you continue to have problems you need to be persistent with physician and address your concerns again. If you get the brush off again you may need a new doctor. That's MHO. Good luck
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Hi, ladies, checking in and catching up on posts after a few weeks. Good to hear from all of you and welcome newbies!
I have started letrozole (generic Femara) a few weeks ago after I quit anastrozole because of the all-over increased pain. So far, not too bad although my usual hip pain is quite a bit worse. I am also experimenting with dosing and timing of my pain meds and decided it's not the end of the world if I have to increase a little. It is a quality of life issue for me.
I saw my PCP last week and found out I had a vaginal bacterial infection, so the burning and discomfort was not only because of the lack of estrogen. So that should improve.
I also have a zero sex drive but lucky for me I am divorced and not looking, so it works for me. But I feel for you gals who struggle with this. It's just one more headache (ha ha) and we have too many struggles right now as it is!
I have been struggling with feeling overwhelmed with life and wondering if I will ever catch up and feel normal again. I'm planning a short trip, so in order to prepare without getting crazy, I am saying "no" to everything that isn't absolutely essential, and focusing on my preparations. I feel like I am taking care of myself and my too-slow recovery this way. It is working better than I thought it would.
Take care, ladies. We will make it one day at a time!!
Barb
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Barb - love the attitude - say no to what is not absolutely necessary! . . . I just ventured back to work this month and am trying to find my new normal, not feel so overwhelmed, get it all done and still feel "good". . . .
Thanks for the alcohol comments. . . . I just wondered what you all are hearing! Believe it or not I did not get the abstinence lecture on this topic. . . .
Speaking of abstinence. . . Hahaha. . . I am just over 6 weeks out from complete ooph / hysto so I can't talk to arimedex effect in that area --- yet. But I have heard pomagranite oil can be very helpful..... dobie your words were amazing on this topic!
I have been working on the diet as most of you are. . . My question of the day --- how are yall avoiding sugar? I mean other then the obvious. . . . I keep seeing sugar everywhere - how do you avoid this? We are really just talking processed right? Not like fruit? Hope the question doesn't seem stupid. . . Hahahaha. . . . Just curious! (sunflowers- talk to me woman!)
Claire - I am hoping to rock spandex like your one day - your are quite simply amazing. Please keep reminding me / us to get moving!
Hoping yall have fun weeks ahead of you. . . . Summer is here after all! I am off to RO on thursday for physical exam and I think ultrasound of lymph nodes as well. . . . Buying my time / life in 3 month chunks (as in "you look good - we will see you in 3 months...") ..... Hoping for 3 more.
Keep on fighting my A team sisters....
Kelleyod0 -
barbyjean -- I totally agree with the just-say-no attitude. I am practicing that one too! I feel I am being more selfish these days (since BC dx, LX, rads and now HT) with my time, emotions and personal space -- especially when I'm not at work (I work in healthcare and I give 100% + while there). But off work, I totally cherish "me time."
I am also divorced and not dating, besides my breast is still sore, finished rads 2 1/2 weeks ago, LX 3 mo ago. I've only been on arimidex one week so I'm guessing my low libido isn't from A yet..... but I'm really not concerned as that is the LAST thing I want to do right now.
Expecting minimal SEs from A --
Hope everyone had a nice weekend!
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Kellyod, just attended a class on nutrition yesterday. They encourage fruits and vegetables, not processed food. The instructor held up a cube of sugar and said that one cube is four grams of sugar. Then she encouraged us to read labels and read the sugar content. Divide the sugar content by four to determine how many cubes of sugar it has. Beleive me that is a wake up call. All of a sudden that food is not so desirable anymore. Good luck
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Shatzi & WaveWhisper ~ Thanks for your input on the hot flashes. Not sure what is going on with me but have LOTS of appointments coming up with RO, PCP, MO, Rheumatologist, Neurologist & PT...don't know who to ask what, so will ask everyone I see their opinions on the Arimidex side effects. Can you believe all these appointments? However, I am happy that they keep referring me to those I must need to see.
I seem to have shoulder/clavicle pain on the radiated side and that worries me. I try not to "go there" with negative thoughts but will be glad to be able to ask about that when I see the doctors as well. I also know that if I would get on a better diet I would have less worries about being the cause of my own problems with weight, etc. I need a real push in the right direction. Knowing what we should do doesn't always make it easier, does it? I have a real issue with sugar since I have finished the chemo and rads. I am going to try and think of what you posted ptdreamers...thanks for sharing, I am hoping it will help. As for exercise, I know I need to do that as well, but have big time neuropathy, especially in my right foot (as well as the left and my right fingers) so I seem to use that as an excuse to sit on my big butt! Hoping I can be a little better about it when I am off the month of July from the school office I work at. It just feels so weird to walk on numb feet! Wow...this paragraph makes me sound like a hypochondriac.
Honestly, I am working and functioning pretty well so I really shouldn't complain so much. I promise not to go on and on next time I post. Any more advice anyone can offer will be so appreciated. To all...have a great week! Linda0 -
kellyod: I never was a heavy user of sugar, but I no longer add it to coffee, no sweets, very limited alcohol. Also, reading labels of packaged foods (of which I now have very few) is essential. Healthy sugars as in fresh fruits are fine. When I was on tamoxifen, I very quickly realized that any kind of sugar triggered a hot flash -- so one more reason to avoid processed sugar.
Btw, I saw in your .sig that you are early stage cancer with no lymph nodes. THINK BIG! You are hormone positive, so this time on AIs is very well spent, and your cancer was caught early. These lifestyle changes are very important in helping you have the best long-term outcome. I know it's hard to think beyond the 3-month measure, but remember this is a journey about living, not a battle of not-dying, if you know what I mean.
Cheers,
Susan
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Ptdreamers - love the sugar cube example. It really helps with visualizing how much sugar we are eating.
Kelleyod - I am a big time sugar addict. I knew I needed to cut back and I was finding it difficult. I had been reading about low glycemic foods. I just decided one Saturday that was it. I ask myself before I put anything in my mouth whether it is low glycemic. I am definitely still eating fruit but try to eat more of the lower glycemic fruits. For example, bananas are not low glycemic but they are very nutritious and I like them so when I do eat them, I try to eat them before they are overly ripe (I try to eat them when their skin is yellow but not getting the brown spots on them) as the glycemic index is higher on them the riper you let them become. I may still have a baked potato (high glycemic) but not everyday and if I do, I will try not to eat something else high glycemic the same day. After doing this for a few days, I realized overall I was eating less and plenty satisfied and could walk by a bag of Reese's without wanting any. Hope that helps.
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One of the places there's a lot of hidden sugar is bread. Read those labels. Love the sugar cube tip.
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The sugar cube tip is great! Thanks for sharing.
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Does anyone have SEs that appear out of nowhere and disappear in a few days? I started to get hip pain in my left leg that I never had before...in a few days it was gone. The same thing happened yesterday with my right big toe. I have neuropathy in my toes but this was something else completely! I got out of the car and couldn't walk because the pain was so bad. I imagined it to be like gout altho there was no swelling or redness. This morning it is barely noticeable. I was going to call my MO and ask about taking a break from Arimidex but now I am confused. Don't want to go off A if these SEs are going to come and go. I don't know what to do and not even sure it's the meds...how can you know for sure?
I just got my next month's supply so hate to switch brands now.
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Hi Schatzi.... Was the toe muscle cramping?? I think Arimidex does make me more prone to that, so things like bananas. I find that I sometimes have to eat enough salt. I know it's odd, but my tendency is not to use much salt when I cook dinner from scratch, and sometimes I don't get enough.
I always smile at the sugar discussions as did the 76 mile ride I had planned yesterday. (Saturday was a washout fiasco, with new bicycle parts, a lack of confidence, and then getting caught in rain, wind, and thunder. All of us bailed after a few miles.) Anyway, I find I burn so much energy that I need to carry energy gels and potions. I think I need to use more of these post treatment, but it could be because I learned that you don't need to bonk. The electrolyte replacement drinks that are sugar-free are useless, as I can't cycle 20 miles with 50 more to go, and not need sugar.
In any event, I make sure I ingest enough electrolytes to offset what I lose sweating. I am wondering if the same is true for women who have hot flashes? If so, one of the sugar-free electrolyte drinks might be helpful. The popular one here (which I find not helpful on long cycling events) is Nuun. Because I suspect that hot flashes bring the same loss of fluid (without the 4000 calorie burn, alas).
Ruthbru drinks diet tonic water which would also help.
I don't think that things suddenly hurting and then mysteriously going away has anything to do with Arimidex. This was true long before I had breast cancer. My bathtub and I are tight, and I am also tight with Aspercreme.
Still glowing from yesterday's ride, but do admit to sleeping in. 7 hours of riding and three hours of driving to the ride and back, with heavy traffic for much of the trip back. Plus, a work-related phone call prior to dinner.
I saw the Mima Mounds and got a couple of pictures. Then a funny one of two horses who wanted to join the ride. I saw a new part of the state and the most gorgeous hidden valleys that I didn't know existed. One of the rest stops was at Swede Hall, which was decorated in Swedish folk style by the immigrants who settled there. Just enough hills to make things interesting with most of the course being flat enough to enjoy. Amazingly, no more than a few sprinkles. We had a few hours of glorious sunshine too. No rain until the drive back. I saw a rainbow where one end was against blue sky!!
So a fun adventure. Not particularly sore either, and ready for the big ride in three weeks.
I think I am getting why I need the new capris which are coming this week. Speaking of week, I need to get moving and do some work. Today's "exercise" will be (apart from my weights/crunches routine) walking the 1.5 miles each way to a business related martini networking party. I'm counting the walking! - Claire "
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Claire...thanks for your input. I am amazed at your energy! I don't feel fatigued but at times everything hurts. It sure decreases my desire to be very active. I am grateful when I can keep the house clean, laundry and ironing done and the garden weeded!
I also doubt that SEs from Arimidex would come and go ...but anything is possible. I will just hang in there for now!
Congrats on the bike ride, that is a heck of an accomplishment! New capris are the reward. LOL
I forgot to add...no the toe wasn't cramping just really sore like someone dropped a brick on it. As for the salt...my GP told me years ago that I needed more salt in my diet which I ignored cause of taking meds for high BP...I find that odd!
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Schatzi - I had the same thing happen with my left knee last week. I really hurt going up and down stairs. It lasted 2 days, then disappeared. I'm happy it didn't stay.
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I am new to this forum but want to thank all the women for their thoughts, ideas and support.
It has been nine years since I was diagnosed with BC. I have had five surgeries, chemo and hormone (tamoxifin) treatment. I have had two recent recourances under my arm and have now been put on Arimidex. (about a week ago) I have bad bone pain anyway so I have some concerns about SE from this drug but I have another very small tumor under my arm and I thought I would give this a try and see if there is any change in the size in the tumor in three months. I am interested in what some of you women think about Vit. D, calcuim, magnesuim supplements to help with pain of SE?
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vgreene
sorry you've got to deal with bc again - all those supplements you mention help keep me pain free. If you haven't had a Vitamin D bllod level test, it would be a good idea to have one, to lean how much Vitamin D3 ( NOT D2) you need to be taking. It takes about 6,000ius daily for me to stay in the 50's. But I don't eat any dairy.
the calcium I take is 1,200 calcium/600 magnesium - takes 6 capsules a day to get that amount. Taken spread out thru the day with food.
Will you have a base line bone density test b4 taking Arimidex? Many women do, to see how the Arimidex is effecting their bone density during the years of following treatment.
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Linny ... I had hot flashes within 2 weeks of starting arimidex. I am on tamoxifen now, and still have them occasionally (I am 4 years post menopausal.)
Jherbes ... my MO gave me vagifem for my vaginal dryness. And I confirmed with my gyno, who raved about it, and the nurses at my hospital rave about it. It really helps. It is a topical estrogen pill you insert with a little tampon-like applicator. 5 days in a row to start, then 2x a week. Sometimes I do not even remember to do it the 2x a week, but it TOTALLY fixed the problem. I questioned both docs on the "but if you have cancer you are not supposed to have hormone suppments" thing you read constantly, but they were both pretty emphatic that it is not systemic and is not an issue. That's my story and I am sticking to it, yessir. Between the viagra and the vagifem, my DH and I have all the important V's covered, HAHA!
Peace and love ... Debbie
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Hello girls!
Vgreene - I take those supplements as well . . . . Seems to be a good thing so far....
Thanks for the awesome sugar tips...... I am determined to make a change in this area.... Good educating!
Susan - boy did I need to hear your wisdom tonight... It is about living. My sig is correct but not complete.... After my PMX on my "healthy" breast in January, they found 6mm IDC with a 2 mm micromet in the SLN..... Yeah, two steps out of the cancer center and they yank me back in! Not done with the journey yet. . . But I am realizing you are right - think big and make impactful changes!
Debbie - ! You are killing me! Hilarious! I love it!
Claire - amazing..... Hope the martini networking was worthwhile! You are probably right about these intermittent pains . . . But I swear it has hit me too over the past month.... Odd, huh?
Linda - don't you get discouraged! Just start moving..... A little blood flow and movement is impactful .... I know it can be a challenge but make a start and you are off!
Hope everyone is doing great. . . . Thanks Gain for the wisdom, education and laughter!
Kelleyod
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Debbie, thanks for the tip about Vagifem...is that prescription or OTC??
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Debbie, I use to use that before b.c. my onc said NO because of the estrogen positive situation... Ginger
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another 2¢ - my docs vetoed it too. Staying with cocoa butter...
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