Arimidex - Coping with the SE's
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I also had a hysterectomy but longer ago than you.
I began Arimidex in May and have had side effects. Joint pain, sleep issues, crankiness, and more but all are manageable. My Radiological Onco said to take the meds, don't stop! he said that women were stopping becaiuse of the side effects and women were dying unnecessarily because of stopping. He was very forceful in telling me not to stop! I take vitamins inc fish oil and D3, I think that helps. Just like all the rest of this, one day at a time. I do not like the SE's but when I remember last week, I recall playing with our Granddaughter and not the side effects.
Best wishes
Ginger
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Enjoyfool - I don't remember - have you tried acupuncture for the joint pain? Has worked wonders for my knees, especially.
Don't remember ( stop laughing!!!) if I've asked - has anyone noticed a change in their balance? Or mostly LACK of balance - I noticed it expecially going down stairs - sure it's not just in my mind, or what's left of my mind, I really sometimes just feel "wobbly."
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MarciaM - I started taking 1000 IU's of vitamin D and my kidney doctor told me to lower the dose because it interfered with ???? Sorry, I forgot what it did but it wasn't good.
SunflowersMA - This summer I felt like my balance was off, too, so I got scheduled for an MRI brain scan. They found nothing there except that my brain is diminishing with age, which is normal.
As you can see, Arimidex probably interferes with memory aside from the aches and pains.
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Sunflowers - yes! I definitely have balance issues. Wobbly is a good description. I had 3 falls in a month a few months ago. One I banged my head really badly, and I'd forgotten how much the scalp bleeds when cut. Goodness - I thought I was bleeding to death for a while lol. Second fall was very gracefull, my ankles and knees just sort of buckled under me when stepping down from a sort of ledge. Luckily it wasn't very high, and I didn't hurt myself. The last one was pretty humiliating. I was walking through a mall and just lost my balance completely. Did the cartwheeling with arms trying to get my balance back and ended up flat on my face. Lots of people around and no-one helped. One man was standing nearby and talking on his phone and just watched me pick myself up and dust myself off and pick up all the bits and pieces that had come out of my handbag!! I was soooo embarrased.
I now watch where I'm walking very carefully and don't rush. When going down stairs I hang on to the handrail carefully.
I've also noticed I'm really clumsy these days. I drop things easily, I misjudge distances and bang and whack things when I shouldn't.
I did hear or read somewhere, maybe 6 months ago, that there was a study done somewhere that showed that women with bc have more falls. No-one seemed to know why though. Did anyone else hear about that? Or is my very faulty brain making that one up?! lol
Trish
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I too am wobbly, but it is better than during chemo when my feet first became numb. I am careful to always have shoes on.
I am also so deconditioned, inactive etc. I admire the women who have exercised. I have been depressed for a few years now and am getting better. I was depressed before I was diagnosed with BC and certainly wasn't exercising then. I was last in good condition in 2006 I think.
I am mostly aware of my memory of words being a problem for me. My concentration is returning, it was way off for a while, no focus! I am still not able to read a book but am hopeful Iamm moving in the direction of being able to focus once again.
Here's to fewer side effects and solutions for what will work.
Ginger
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Sunflowers - Acupuncture worked well for me with the aches and pains of chemo, but I can't try it with Arimidex because of the cost. I was employed during chemo, but not any more.
And YES on the balance issues! Normally I have great balance but every once in a while I'll just fall over. I fell on the way to my onc's the other day and skinned my knee pretty badly. Oh well, it'll heal.
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Gingerbrew, my memory for words was also a problem once I started Arimidex but appears to have subsided, mostly, now (I'm just under 3 years into Arimidex). My concentration is still very low and I also cannot read anything of substance that takes thought. Mindless novels okay but informational, not a chance. Also can't watch anything on TV that is more than 60 mins. For the exercise, you can try just walking a little bit at a time - to the mailbox or end of the block - and add a few feet each time. You'd be surprised how those extra endorphins helps the mood and the fatigue.
No wobbles and my cholesterol was up but is now back down under 200. Blood pressure has always been low and remains there (had both checked last week). Main challenge now is the belly fat and weight that refuses to go down.
We do what we need to do; what works for us. Can't do any more.
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HI All.
Enjoyous - love your rant! Gonna use "love-hate relationship" when I need a good laugh.
Yes, to balance issues. What I notice is that I am less able to judge distances when stepping down and or crossing busy street in city. I am definitely more cautious. Wobbly is the right word.
Patoo, what did you do to get your cholesterol back down? Mine went way up so I am trying to really change my diet to see if that will help lower it. Failing that, I will try Niacin or a statin.
Best to All, Beau
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Never had a flu shot. I don't get the flu. Just cancer.
Only gained a few pounds in the year and a half on Arimidex
No wierd dreams at all.
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Gingerbrew et al, My memory seems tobe recharging now I am on arimidex....is that odd? For a while there....well..when I was deciding if I was going to take it or not, my memory was totally tanked....STRESS was the cause I believe....just all too much.Sleep has been an issue for the last couple of years so that is no different..though taking it at night, with my zopliclone, means I have actually slept through the night the past two nights....a miracle! I am a bit achy one month later but just renewed the presription (expensive! good grief!!!) anyhow...as Ruth says..better alive with a few aches than not here to complain about them ( or something along those lines)...my biggest complaint on it is my Bp seems to be low....112/65 today before I went in to a pump class.....only had the energy for half the class...plan on calling my Gp for a flu shot so will ask her about it then.
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I wonder if we will ever be off of this medicine. I mean if it keeps the cancer at bay then what happens when we stop taking it. I can think more kindly of this med when I am thinking of 4 1/2 more years than if I am thinking the rest of my life! Has anyone read anything new on this issue?
Ginger
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Beau, not sure what brought it back down. I try to watch my food but can't say I'm real successful though I cut out fried foods (okay maybe once a month I'll cheat) and limit dairy (cheese maybe once a week). I exercise more since dx so perhaps that helps.
Fearless, I'm like you, never had the flu and never had a flu shot. I've managed to lose and keep off 20 lbs since dx (can't seem to drop any more) but I also did not have to do chemo.
Night friends.
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Enjoyous - love your chaing names.....almost ALL the acupunturists I know use a "sliding scale" for patients - and I have several friends who are part of Tiime Banks, and "barter" their time, services. Can't remember where you live - so what else is new? - but just know there's a way for you to get this valuable treatment. I LOVE LOVE that my knees work again.
BALANCE - oh, thank you A Team - I really thought it was just my age ( ok, 66 years young) but it ISN'T - and wobbly is so obvious going down stairs. I use to LOVE LOVE LOVE bicycle riding, and after 4 years on the A Team, I jsut don't feel confident enough to ride my bike. Bought a stand to use it as an excercise bike, swear I'm gonna by one of those Adult Tricycles, someday - but they are so expensive, and have no place to store it now.
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Saw my MO on Tuesday to talk over my 3 months on Anastrozole and the SE's so far. Most trouble has been the joint pain in my hip. He suggested taking fish oil and seeing my chiro again. So today I went into the chiro and also had acupuncture. Now I'm not one for needles, Lord knows I had enough of them, but he talked me into it and boy was I surprised (in a good way)! Didn't hurt at all and the relief I have now is amazing. I don't know how long it will last today, but I'm already going back tomorrow for another treatment. Even if it's just half the day, to be without any pain even for a short while is so wonderful! And no drugs is the best part. Guess I'm sold on it. Any thoughts on the fish oil? Kitty
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Hey ladies! Can I crash the party? I've been on tamoxifen for 3 months since finishing chemo and now found out my chemopause is permanent. Switching to Arimidex this weekend!
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Hi, mamaV. I'm another recent switcher from tamox to arimidex (after 3 years rather than 3 months). I'm curious about your doctor's statement that your chemopause is permanent; how do they know? Will they be monitoring your hormone levels closely after you switch? I know that practices and rules of thumb vary, but 3 months seems like a short time to conclude that chemopause is permanent. (Though in my case, it certainly seems to have been.)
The earlier discussion of balance was interesting . . . I've always been clumsy, but I swear, I seem to be getting more so. Sometimes it's not so much a balance issue as a sudden sensation of weakness in my leg that makes it want to buckle under me.
L
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I'm also a recent switcher after doing one year on tamox.. originally onc said if my period didn;t come back after 2 years she's switch me, but at my one year checkup she sent me for a blood test to check my hormone levels. After receiving the results said i was officially in menopause and switched me to arimidex. i had just got my refill for the month of tamox, so decided to finish that first, finally started the arimidex a couple weeks ago. So far so good, not sure how long it takes the se's to kick in.. already had the hot flashes, and some stiffness from tamox... and really stiff, sore feet
on the plus side, i do seem to be sleeping a little better in the last couple weeks, hope that keeps up.. the insomnia was really getting to me.
oh oh, burning the pizza in the oven,... gotta run.
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Although I have had a variety of side effects on Arimidex, I am scared to death to part with it. I will be 5 years out soon--hooray! Onc is keeping me on Arimidex till the end of January, but I am terrified to not be taking anything after that.
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Well ladies - have just been to see my Onc, and he is adamant that Arimidex does not cause sleep issues. We are suffering from sleeplessness because of having to deal with cancer - nothing more, nothing less.
Hmmph.
Apart from that I really quite like and trust him. But I seem to be the only woman in Australia on Arimidex that has sleep problems.
Trish
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I have taken it in the evening the past 5 days and I have actually slept better ...a lot better!!! connectin? who knows!
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Hi Trisha Anne,
Obviously, if you read through this thread as well as check the side effects listed on for the drug, insomnia is one of them. Ditto with carpel tunnel. I have had both, although insomnia is not as noticeable (nor is the carpel tunnel). I consider them "back ground" music at this point and take sleeping meds or NSAIDS, muscle relaxers as needed.
So long as you trust your onc, you can put up with his ivy tower approach, but those of us in the trenches can testify that Arimidex (or the lack of estrogen that arimedex produces) creates many issues that seem to be under reported in the medical community. In any event, don't hesitate to fire your onc, if he doesn't take your complaints seriously.
I ended up getting 3 opinions for my initial diagnosis and onc #3 was a keeper. He responds to email which I found to be a rarity and takes all my complaints seriously. He is very into treating the whole patient, not just the cancer part. He will also be the first to tell me that "joint stiffness" which I have in spades and/or insomnia are not reasons to quit. He does, however, treat them as quality of life problems that need to be addressed. I like the way he balances everything out. This thread is a huge help as well when I have a new issue or feel down about something. Keep on trucking and get some sleep!
Good luck with your journey! Beau
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Trisha
You doc is wrong. We all know that, all that beau said = ditto. So sad when docs don't understand what we are experiencing. I had my regular 6 month 'visit' to Dana Farber yesterday - and I can tell you it makes SUCH A DIFFERENCE to have a doc listen, understand, empathsize. Continually feel so blessed to be able to see docs there.
The good news, I am fine, the bad news - I am "fine" compared to how so many other women are tolerating being on the A Team. The mind boggles - naturally, my doc sees thousands of women over the past 5 years since I've been treated there, and in "comparison" - I'm soing well. So my heart really does go out to anybody who isn't considered "doing well." I am MISERABLY TIRED, fatigue doesn't even cover it - and, at the end of my five years next summer, we MAY switch to Tamoxifen ( tho I have been taking an SSRI antidepressant for years, and NOT WILLING TO CHANGE THAT MEDICATION)- so I have a while to think about it.
Meanwhile, BP really DOWN - I give credit to Fish Oil, Ruthbru's Niacin ( heart seems fine) almonds, and NO DAIRY. Went from 170/80 to 135/60 this time. No other change except those.
I feel SO MUCH BETTER being dairy free - don't even miss fat free yogurt anymore!
Still have a GOOD 50 pounds to shed - that's an ongoing situation.
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Beau - meant to ask you, for your joint stiffness - I found my GONE with 3 things: gluten free, massage, ACUPUNCTURE, ACUPUNCTURE, ACUPUNCTURE. There is antecdoal ( as in no clinical trials yet) that ACUPUNCTURE really does hlep to relieve joint pain, symptoms of neuropathy.
Acupuncture is known to help REDUCE inflammation - my KNEES are better than they've been in years.
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Lewing - I was perimenopausal before I started 6 months of chemo. Haven't ovulated or had a period since and 3 months post chemo still haven't ovulated nor had a period. MO has been tracking my hormone levels all along - I have thyroid issues too so I've been getting very indepth blood tests since I started chemo last January. And the tests will continue ... thanks for asking though ... it's always good to think it all through!
Have a great weekend everyone!
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Hooray for Niacin! Sunflowers, come over to 'Wednesday Weigh In', we track our weight loss progress....or lack thereof!
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Hello all! I am new to this discussion. Just joined today. I have been reading this community's comments this morning while looking for ANY comraderie on the weight gain from Arimidex/Anastrozole!! I have been on the generic for about a year, prior to that I was on Tamoxifen, until my Onc determined I was going to stay menopausal, which was a direct result of my chemo in 2007. I have SO many of the other issues you all have described and feel rather shallow bringing up my weight gain, which I am convinced is a result of the medication! I have struggled for the last several years to stave it off but find myself slowly gaining! Any thoughts, or anyone else have this problem. I know about exercise, eating clean, etc... But truly I have not ever had such an issue with my weight like I do now....just the normal stuff like baby fat (yes, I was in my 20's then), lost that, mid-life, mid-unhappy marriage weight gain...divorce solved that (not so funny,I know, but it did remove the weight!).
Yes, there are the pain issues involved with this drug, as well as a new bone scan turned up with osteoporisis developing in 2 spots...prior to this last one, my Dexa was normal! Now that is worth more worry and made me really mad. But the weight gain is on my last nerve!!
Oh, and to answer any lingering doubtful questions on carpal tunnel...I have had both my hands done in the past year!
Anyway, I know that menopause works on slowing down your metabolism, and I am trying everything to boost that....am I crazy? I even contemplated coming off the drug, but think that is drastic seeing as how I am more pleased to be alive that being 20 lbs overweight!!!
Thoughts!???
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The "slowed down metabolism" can be reversed, but requires work. I know boring, but a combination of strength and aerobic training.
This is what works for me:
- Crunches on an exercise ball. I do 270. 100 oblique situps. 100 straight situps. 70 leg/knee lifts on floor. This tightens my inner thighs and lower abs. All this helps with back muscles and keeps my waistine shapely. Helps with core balance too (or you fall off). I do these weekdays
- Free weights. I have 10 lb weights. I do a series of lifts and presses. This sculpts my arms, upper body, and pecs. Keeps my neck muscles strong and flexible too. I do these following the crunches routine.
- Walking. 10 miles per week, with a minimum of one mile daily, excluding days I am cycling.
- Cycling. I need to do 60 miles weekly to keep weight off. I have two long rides planned for tomorrow and Sunday. Sunday's has a good hill, so will get extra cardio. When snowy, I go x-country skiing.
My balance is fine, and so is my weight. That is provided I don't indulge too much in food. I think muscle mass is critical as we get older. To say nothing about the fact that muscles look a lot more attractive than flab.
Having said this, I could stand to lose 10 pounds. But not desparate to do this as weight appears to be coming off slowly.
Weight, cholesterol, and BP appear to be consistent with prior to diagnosis. I think a bit more achy, but some of this is from cycling. I am the only one who has "butt muscle" complaints.
Now, to get out my exercise ball and do those crunches..... - Claire
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WOW !!! So many crunches and ab exercises!!! Your work out routine sounds very grueling... I am not sure I would have time for anything else.:) I have heard that crunches when there is still fat around the middle can lead to a firmer stomach but not without losing that fat surrounding the abdominal muscles.
Thanks for your input!
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Izzy, you could be describing me when I was on arimidex...I finished up five years, five years ago now...
some of the problems are age, but my bone density submarined after 18 months on it...I took fosamax and it kept it stable...then after I finished the arimidex I stopped the fosamax...
I really struggled with weight too... and the pain ..but I felt the benefits outweighed the side effects..glad it was only five years though..
I used topical inflammatory gel, Volaren for the pain...
hugs,
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Claire:
I just bought a large exerecise ball - now trying to figure out how to use it!!!
- Crunches on an exercise ball. I do 270. 100 oblique situps. 100 straight situps. 70 leg/knee lifts on floor. This tightens my inner thighs and lower abs. All this helps with back muscles and keeps my waistine shapely. Helps with core balance too (or you fall off). I do these weekdays
Are the leg/knee lifts doneon your side? Do you keep your leg slightly bent ( soft at the knee?)
thanks - YOU ARE INSPIRING!!!!!!!
My acupuncturist, saw her this morning, also suggested Tai Chi might be good for the wobblies, helps balance. Looking for a good beginner DVD now.
Izzy - I used to think it was "superficial" - but knowing how much weight has to do with reducing reoccurance - I am SO FOCUSED on it now - also, know I will FEEEEEEEEEL so much better without this HUGE POT BELLY - HUGE!
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