Arimidex - Coping with the SE's
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I'm jumping in without reading! I have been on tamoxafin... but on 12/19 had a hyst/ooph.. and start arimidex on monday.
What can I expect in a nutshell? Cliffnotes anyone?
I would like to hear "Why Anne! It's AWESOME! You know all that extra weight you gained with Chemo and steroids and Tomox? Why it will just fall off! While your HAIR! Oh Goodness it will grow thick and silky and blonde! And you will just have so much ENERGY! You will be running marathons next summer! "
Just in case you were wonderin....
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Anne, I feel great after over 4 years on it. Haven't gained any weight (except when I eat too much....like right now, too much 'holidaying'), my hair is thick and a beautiful auburn color (thanks to my beautician who is really good at mixing up dye), and although I don't run marathons (never had the urge, thank goodness), I do exercise every day and my energy is fine. That is my story and I'm sticking to it
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Oh darn. I already posted for help on 12/14. (before my surgery) I'm sooo blaming chemo brain! Thanks for alllll responses! Here are my notes and responses... (I didn't write down what everyone said, just my responses.. Goodness. It's okay. I'm sure you remember what you said! Aha!)
u!Balsie... No fatigue is good! I like that!
Ruthbru...I love your optimism! "Helllooo Skinny Me! I've missed you!" *huggles*
Mpeaches... nice to know the hotflashes abate. I've about had enough of those!
Evelyn... that sounds good!
Don... losing weight is ALWAYS a plus! No matter how slow going! All that matter is that it IS coming off!
Exbrnxgrl... But your posts DO help!! Knowing that some don't suffer any SE's is a GOOD thing. It give me hope! Do you really think we only want to hear the Horror Stories? NO! I want to hear your experience too, so I can be optimistic and think "Hey! That might be ME TOO!"
SunflowerMA... I'm so glad I made you giggle! Laughter is SO important at this stage of life!! Laughter is good. It's my new mantra! And yes, I will lose weight and be HAWT.. and bottle and sell it and we will all profit!
Sensa! Yay!
LovesChrist... We start the same day! Let's hold hands like Thelma and Louise and jump that cliff! (in a good way! we will land on the otherside and burn rubber to meet up with Brad! haha)Sensa. No.
one-L... Can I be YOU when I grow up!!! Pretty pretty please?
Ruthbru.. My gosh girl. You are just a wealth of information and true inspiration! Thank God for you. (Yes, I know I gave you two mentions!) I am looking forward to losing weight and my hair growing. And I am Oh So Thankful that I do not have to run a marathon *whew*. I would like to do Zumba tho!
Again.. Thanks for all the answers/replies.Now .. can I just say I'm scared? Just wanted to say that. Sometimes I remember I have cancer, and that's why I have to deal with all this stuff... and it scares me.. Mostly I like to forget. But it's okay.
Okay. Thanks again everyone!
(for some reason I can't bold names.. sorry.)
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Thanks Kimberly..Frustration heard, acknolwedged and apology appreciated...my first experience at being at the end of someone's frustration in that way so if I responded too strongly as well I also apologize for my response. All of us on this and other threads are looking for information. sometimes there is crossover of information we can share from other threads.
I just got my cholesterol results via phone from the 6 weeks on arimidex and it was higher than the previous check....after 6 weeks....they wanted to up my cholesterol drug and I said 'wait!!! IU went off arimidex...i will have it redone in 8 weeks"...it doesn't mean others will have that reaction but it is one of the possibilities..and one of the solutions is walnuts and exercize and another is medication...depending on your situation,,,.I am hoping the cholesterol was the arimidex because if not it is something else...if it is, it means I need to try something else.That was precisely why I only bought two boxes of it...things that might affect the heart...so back to the gym with a vengeance and then more reevaluation.
Good luck to all of you on it. My oncolgoist said the side effects should appear after 4-6 week...he didn't mention them getting worse.
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Sandee, thank you.
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Anne--if you weren't menopausal before surgery you will be now. It's very hard to figure out if hot flashes, weight gain, mood swings, joint pain etc are from surgical menopause or arimidex. So it will be hard to know which is the cause of any side effects you MAY have. Not every woman has side effects from either. It's far more likely that you will have no side effects, or very mild ones than more serious ones. Women wiht no side effects are much less likely to be on a thread like this than those of us who do.
That being said, I have hot flashes, well controlled with gabapentin, and joint pain that I can't be sure isn't the arthritis I had before bc. I have found that with making changes in my nutrition (diets don't work for me, so I'm working on changing my eating patterns) and starting to exercise (walking) I can lose weight while on arimidex. I'm taking baby steps and the weight loss is slow, but it is there, so it can be done.
The best thing to remember is that if you should get side effects that are too much you can try another AIor go back on Tamoxifen. But it's worth trying, it really is.
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Sandee, I'm glad you are making them wait before just dumping higher doses of medication on you. I might have asked this already but have you tried Niacin for the cholesterol? (Which, of course, you shouldn't do without checking with your doctor.) Also eating oatmeal every day can lower cholesterol.
Anne, I was 'hot' at first but a combination adjusting my wardrobe (layers, no turtle necks etc) and strategically placed fans, got me through until my body adjusted (about 6 months, I'd say). I was also a little creaky, but a friend who started arimidex a couple months before me told me to 'keep moving', so I did and, again, that worked itself out too. If you want to do Zumba, you will do Zumba!!! If you want some exercise motivation, come over and check out the 'Lets Post Our Daily Exercise' thread. Along with us light exercisers, you will find that there are ladies who ARE actually training for MARATHONS (gasp, shudder!!).
Now, I am going to go practice what I preach: eat a bowl of oatmeal and jump on the treadmill.
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NativeMaine- May I ask you about Gabapentin? You said you were taking this for hot flashes.?
The reason why I ask is that I have had headaches and dizziness for some time but now I've started with a "thorn-like" feeling on the anterior left side of my head. My GP wants me to start on Gabapentin to help with the "nerve endings". I do have hot flashes and night sweats. Joint pain makes me feel older then I should be. Slow getting up and so embarassing in public! I read the side effects of this drug and of course headaches, weight gain and more are listed. I am feeling like a walking edible RX ! One drug leads to another!! She also said it would help me sleep but if it didnt she gave me ambien. Well that has more side effects!! What to do- I just dont know anymore.? I am on the generic of Arimidex, nexium, my cholestrol has gone up to 224, so the want me to take a RX for that-UGH!!
Sorry I am just complaining. I just need to buck up and do it. Just wondering how long have you taken this, how long are you to take it and do you feel like it helps with more then hot flashes? My rx is 100 mg for a week, then start taking 200 mg. I could use your input. Thanks!
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mtks--I started taking gabapentin after radiation for the nerve pain of truncal lymphedema. I take 300 mg in the am, 600 mg at bedtime. My prescription says to take 300 mg 3 times a day, but this works best for me. After I had a mastectomy to stop the radiation caused nerve damage I weaned myself off gabapentin and the hot flashes became very intense. I could only sleep about 20 minutes at a time at night, between hot flashes and then being freezing cold. My onc put me back on gabapentin and the hot flashes became bearable again. I don't mind the ones during the day so much, it's the ones that wake me up at night that I can't handle. With the gabapentin I will have one hot flash a while after I got to bed, but once that's over I am able to sleep through the night, if I dont' have nightmares, that is! The nightmares are not related to the gabapentin, btw.
Yes, gabapentin can inc appetite in some people. When you first start taking it you might be sleepy for while, but after a week or so your body adjusts to it and that isn't a problem anymore.
I started this trip obese, and after reading about the side effects of all these medications I figured I'd be doing good just to not get any fatter. With a health coach from my insurance company I have made many baby step in the direction of more exercise and eating more nutritionally and I am, slowly, losing weight.
I am a big fan of gabapentin for nerve pain and hot flashes, so I would recommend that you try it. 100 mg is a very small dose, don't give up on it until you have gotten over 600 mg a dose. Everyone is a little different in what dose works for them.
I know it's discouraging to take one pill to fix the side effect of another, and then need yet another to fix the side effect of the pill to fix things. It's a crazy, crazy thing. But it can work. Stopping the pain will make a huge difference in how you feel overall, take it from one whose been there!
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Anne, you can be me if you want. Thanks.
I have never associated Gabapentin with easing of SEs. During my chemo I started having severe pain in my left arm. I took lots of hydrocodone and finally I had some tests done and I had neuropathy in my arm. My doc put me on Gabapentin and my arm is all better. Having said that I guess my SEs from the AI also went away. I just didn't contribute it to the Gabapentin, but I guess it could have been. I am still taking 2 pills a day, but when these are gone my prescription will have to be renewed, we will see if my doctor will keep me on them. It is very interesting what you can find out from these boards.
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Thank you for all the input everyone!
And yes, let's jump together Anne! I must admit I'm a bit scared too. I had my hyst/ooph on Dec. 2nd and the hot flashes have just started this past week and I'm not sleeping well so I'm imagining the arimidex might make them worse plus give me other lovely SE's....
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Well, I obviously spoke too soon about not having too many side effects. The hot flashes are getting insanely worse, and the hip pain is really making itself felt. I do plan on cutting WAY back on the sugar after tomorrow, and I'm hoping that will help. I already do D3, and fish oil, and Glucosamine/MSM. I was on Effexor many many years ago for Depression, and would REALLY rather not go there again, but I also cannot deal with these hot flashes for much longer.
SO much fun!
Hot, achy purrs,
Jenn
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Ladies, the Arimidex really isn't that bad for some of us - don't be scared, give it some time. But DO get bone density tests every year! This is VERY important.
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It's obvious that there are differences of opinion on the recommended frequency of DEXA bone density tests.
Some people (like Fearless) have had pretty dramatic bone thinning in just a year's time, and they might feel it's important to check bone density more often than every two years. My insurance will not pay for DEXA scans every year, and my doctors (my med onco and the osteoporosis specialist to whom she referred me) don't think annual scans are necessary for most women. That's true even though I am already osteopenic and have been taking Arimidex/anastrozole since June '08. (Full disclosure: My bone density did not change at all during my first two years on Arimidex. I was mildly osteopenic even before I started taking an AI.)
My docs explained that the "reading" of DEXA scan results is subjective; the results can vary quite a bit from one scan to another even if done on the same day on the same machine; and DEXA scanning is not sensitive enough to detect subtle changes in bone density, such as the changes that might occur from one year to another.
All I'm saying is, don't be too surprised if your doc doesn't think it's necessary for you to have a DEXA scan every year.
otter
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I had a DEXA scan with normal results in April 2010 and I began taking arimidex in October 2011. My PCP wants me to have a DEXA scan every two years while I am on arimidex. I wanted to have one every year, but she did not think my insurance would pay for that.
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First off, DEXA is a cheap scan. Secondly, docs often told me "insurance won't pay" when in fact, it did.
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Ladies, I am just catching up on this thread and have a question about the fingernail issues. I have been suffering with vertical ridges in my fingernails since before BC, but is worse now. I did not have chemo, but I had rads. I am on levithyroid, for years, so I am thinking it has to do with that med. or maybe a vitamin deficiency...but I am taking more calcium and multi and eating better, juicing and getting greens...Why are my fingernails doing this? Does anyone have a solution? I quit manis since diagnosis because of the chemicals in the polish and remover.
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Well it is 1:30 AM and leg and arm pain woke me up. I took a pain pill. I am on Anastrazole started it on Dec. 8th. Finished chemo on Dec. 1st. It is driving me crazy. At first I was so cold about 8 hours after taking it I would have to come home from work and get under the electric blanket for at least an hour to get my body temp up and take a pain pill also. Glad I only work part time. Now I am having pain in arms and legs and feel like I have PMS all the time, mood swings are bad. This afternoon I could not do anything except cry. Once I took the pain med and it kicked in I was better.
Will see ONC on Jan. 5th and discuss all of this.
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Peaches the Effexor doage that will diminish hot flashes is omly about 75 mg. I assume your clincal dosage was was minimum 150 or 225 mg. I was on it when I was diagnosed, coming off of it actually and chose to just stay on 75 mg for the first while and then went back up to 150mg, when depression symptoms hit again. and I seem okay there. I prefer not to go up to 225mg again if possible because that sort of fogged me in and I am already so foggy on all these meds.
Good luck to you.
Ginger
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I am telling you gals the new natural product that I am taking is working wonders for any discomfort I had with the arimidex. Reumofan Plus. I love it and I know a couple other ladies tried it too and love it. Give it a shot. It is all natural ingred. and some cancer fighting properites as well. The only thing you shoudn't take is asprin or blood thinning products with it. My oncologist said it was fine to take.
Enjoy your day!
Balsie
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Stage1, I've also had vertical ridges on my nails for a long time and they were quite brittle. All before BC. I have been on thyroid meds for 30 years. Now however, the ridges are way better and my nails are very strong and growing like a weed. The only thing I can relate it to is the huge increase in protein I was eating for the 6 months of my treatments. I think the 70 to 90 grams a day made a huge difference. it might help you......
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Greetings,
After 1.3 years on tamoxifen, I began having a new set of SEs which were downright debilitating. My MedOnc ordered bloodwork and, short story, in a quick 4 months I'd become post-menopausal and a candidate for AIs. I was jubilant to be able to change! I've been on Arimidex for a whopping 3 days. Have slept like a baby through the night (first time in 2 years, since dx), and have had more hot flashes than usual - similar to the first three months of tamoxifen. With hot flashes, I quickly learned that any time I had sugar (or alcohol), it immediately brought on a hot flash, so I've mostly eliminated them from my diet. That seems to be the case with arimidex also.
But today the fabled Arimidex bone pain definitely made itself known. Then I remembered what my nurses told me during chemo, when I'd get my Neulasta shot the day after the infusion: take a Claritin to alleviate bone pain. They didn't know why it worked, but it definitely worked.
So, I thought, what the heck. I took a Claritin today and for about 8 hours felt no bone pain! I'll try it again tomorrow and see if I get the same result. I thought I'd pass it on in case it offers anybody else any relief.
I used Penguin Cold Caps during chemo to prevent hair loss, so had a full head of hair throughout chemo and have even bigger hair post-chemo. But I'm distressed by the possibility of hair loss due to Arimidex. During the PCC regime, I learned that liver function is very tied to the success of retaining one's hair, and I took milk thistle throughout chemo to support my liver function. I'll take that again during Arimidex to help my liver detox all these chemicals and hormones and hopefully prevent any hair loss. Since I also coach new PCC users, I have a demo cap -- cold stimulates hair growth (this has always been true, not just during chemo but even during stress, male pattern baldness, etc.) -- so if my hair starts to shed I'll pop my demo cap in the freezer and wear it for an hour each night.
Anyway, it's nice to find y'all here on this list. I've got about 3.5 years go to on adjuvant therapy. Sometimes it seems the easy part was the cancer dx, and all these chemicals and their SEs are the real battle. I'm glad I've got a sympathetic MedOnc and a progressive cancer center, which offers services such as yoga, QiJong, and acupuncture to help alleviate fatigue and SEs of these many treatments.
Cheers and a healthy, happy new year to all!
Susan
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MostlySew, thanks for the info. I will increase my protein. I am trying to lose weight, tho, hard to get in the fiber, and all with low calorie diet. Thanks for the hint...I will concentrate on protein.
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Hi sebm9 and thanks for remiinding me about milk thistle. I took a shot of that every time I'd finish a chemo tx, but had forgotten...think myabe I'll make up a new batch of tincture. My hair, always thick my whole life, came in wonderfuly thick and curly (yea!) after chemo, then went straight, and now , about 3 yrs into Arimidex is so thinned I need special short chunky punky cuts to keep the scalp from showing, and mens' grooming clay, to make it DO something yikes! no hair falls off, none sheds on your pillow, it's like only one out of 5 follicles can be bothered to grow.....
There IS am oil infusion of some herb...forget now.....I did use that during & after chemo since I was bald...and my hair did shoot up like a rocket...got to remember that, too. Best of luck with it all
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Hey Arlene, how are you doing lady??
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Hello lovely ladies- I enjoyed reading through this thread. It was so nice to feel for a minute that I am not alone in having to peal off my clothes and find a fan! Thank you all for your input. Happy New Year, may 2012 be good to all of you ladies.
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Hi Shelly - I totally adore your pic with that great hat! makes me smile whenever I see it. I'd fogotten how similar our dx was. And thanks I'm doing fine - actually, ses of arimidex have lessened in every way -except the darned thinning hair - sheesh!
Arlene
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Ha Ha, that is my sister in the hat! I'm the one with really short hair (6 mos PFC then). My SE's from Arimidex are much better (one year down now) mostly because I'm exercising and taking Effexor. Still drinking that cabbage juice??
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Flanelette: Thanks for the advice. Cold also stimulates hair growth, so those of us that used the penguin cold caps during chemo actually had hair growth during our infusions (mine grew about two inches longer throughout chemo, 4TC@3). Amazing. If I start to thin, I'll use my spare demo cap to stimuluate growth. Maybe the cold caps will have a new, second use to help us as we go through all these treatments.
I can't believe how different my mood is on arimidex compared to tamoxifen. I knew I was under a cloud, but it's truly like getting my spirit back.
Susan
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Ladies - I need some encouragement. The SE of the Arimidex (dix?) have REALLY started to hit. It hurts to walk, but I'm still making myself do so. Even got back on the treadmill yesterday. The hot flashes are insane, but a teensy bit yesterday without the added sugar.
What is really doing me in is back pain. We initially thought it was SE from the Tamoxifen, so switched to Arimidex. Then had a spinal MRI. Discovered I have 2 herniated discs. Went to the back dr. Was told the pain is NOT from the discs (they're not compromising any nerves or anything, and there's a chance I've had them for years), but muscle spasms. So, went back to get shots in the muscle spasms to get them to relax. That was Thursday, and the pain is just as bad as ever.
I know I need to go back, they can do an epidural, but I'm just so tired of all of this, after ALL the treatments last year, and I'm so tired of being in pain (this has been going on pretty much since June). I think my doctors are awesome, it's just the waiting, the diagnosing, the waiting, and then the DRIVE! I live 90 minutes from where I can get treament, and we made that trip 35 times last year for the cancer stuff.
Okay, now I am just whining. Off to work!
Painful purrs,
Jenn
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