Arimidex - Coping with the SE's
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Hi, beau
I was so depressed during the last days because of all SE's from AI. It's getting worse every day. One day I couldn't walk because of knee, the other my hips were so painful, I was on the couch the most of day. I took a lot of painkiller, drank Schweppes tonic, read through your posts and suggestions of BS org. saying how effective the pains are against recurrence...My MO suggested me not to take D3 and calcium at sunny weather .(?) I'm not young any more, should I my last years spent in pain because of AI?
greetings Usha
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Usha Sorry you are in so much pain. I would ask MO more questions regarding no D3/calcium during sunny weather. If you have low vitamin D then it shouldn't matter. If you have osteopenia or osteoporosis then it shouldn't matter about the Calcium either. Only way they would know about either is a blood test for the D and a bone density scan for the later.
But they should give you something for the pain no matter how old you are. BTW sometimes these side effects can go away or reduce after being on the drug for 3 months. Some can go away if you take a month break from the drug then try again. I would discuss this with your MO as well.
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My Dr. has also suggested I try another AL because I might not have so many SE's from another one. So far I am staying with Femara at least i know what to expect from it. I've been on it 6 months, and so far they aren't reducing for me, but not getting worse either.
He has suggested Amiridex has less joint pain. Would love to know what you all think about that.
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I have strange dreams but I had them before bc. I take a benedryl knockoff at night as a sleep aid and this type of med can cause strange dreams and even nightmares. I didn't realize this until a dermatologist prescribed an antihistamine for my mother to help with rashes and cautioned her that the med could cause nightmares. My mother had this reaction and stopped the med. Melatonin can also cause bizarre dreams and nightmares. What puzzles me is that my bizarre dreams seldom have any basis in reality. I can't figure out why such scenarios and places should exist in my subconscious.
I've been taking celebrex for bursitis in my right shoulder. The pain had disappeared. This morning I got up and the pain was back. It's not intense but it's there. Very odd.
I agree that all of us with bc have been shocked into a realization of our mortality. In my case, this realization has affected my weight. I tend to indulge myself when I eat out. Consequently I'm about 8 to 10 lbs higher than my goal weight and seen to lack the discipline to drop these extra lbs.
Happy Sunday to all.
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Hi Sloucha,
I am sorry to hear that you are so down. If you are really struggling,please talk to your onc about taking a break or switching to another AI or tamoxifen. My onc said that 55% of folks who take a break or switch have much more manageable side effects. Also, tamoxifen can be taken by post-menapausal women (it is only pre-menapausal women who can't take AIs). Tamoxifen often is much easier on the bones and has much less arthritis. One of my closest friends had breast cancer a couple of years before me and she tolerated Tamoxifen really well, but couldn't take the AIs.
Are you taking any NSAIDs like ibuprofen or aleve? They target inflammation and can really help. I take some as well as the pain killers. Yoga and meditation are also hugely helpful. I have to do some yoga every night or I wake up with cramps, pains, etc.
Please hang in there, but don't suffer needlessly. It sounds like you need to help from your onc or PCP to help at this point. I hope that you feel better soon! Best, Beau
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I posted this on the after rads forum but then came to this one and some of you ladies seem to have the same problem I am now experiencing.
Not doing so good today, had a terrible night with deep dark thoughts. DH stayed awake almost all night because of me. It's two weeks since I started the Arimidex and I know depression is a side effect but I have been so positive all through the last six months the horrible thoughts just came out of the blue. I am going to take the pill lunchtime instead of morning and then tomorrow at night and see if that helps. I'm not giving up this easy. Have a good Sunday ladies.
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Lestwin, yes, that is a side effect - give yourself some time - two weeks is very new. Glad your DH is there for you....
I have some depression, too. But mostly sleep issues and HOT all the time - which REALLY sucks considering I live in the tropics. It's already in the high 80's, 90's here....
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Emell, Enjoyful,
I think MASSAGE is the activity that gives me the most LASTING relief from joint & muscle pain.
Also Acupuncture - I do both once a month. The effect is cumulative - and really long lasting. As for the fatigue - when Arimidex was brand - the company listed the side effects - starting with
ASTHENIA - I had to google it - and googled and giggled when I read the Wikipedia definition ;-))
See what you think - after you've looked up ASTHENIA
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Emell -
To me, the fatigue feels like I'm walking through thigh-deep mud. When I first started with the Arimidex it was difficult to just walk around the block (and I'd have to take a nap afterward!). After about 6 months I started to feel better but haven't returned to normal yet. If it weren't for my morning pot of coffee I wouldn't be able to do anything at all!
E
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Isn't Asthenia Greek for "feels like crap"?
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Caerus -
I love getting massages and they do help with the pain. Unfortunately, I can't afford them too often!
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Hi lago, beau and other dear ladies,
Sorry, I was so down, as I wrote my last post
My PDr. gave me ibuprofen and zaldiar and said I should take till 8 tablets a day. I'm afraid doing this for a longer time because of stomach issues. I'm asking why to take so much painkillers being in stage II. I should understand this if I would be in stage IV. Meaning, why to take toxins to bear other toxins??
After my abdominal cancer surgery stage I - two years ago - I got thrombosis and cannot go with tamoxifen. I have to stay with AI. Above a year I'm coping with SE's, doing all suggested matters, mostly efficiently, but sometimes....
thank you
Usha
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slousha I'm taking ibuprofen myself right now to help with the shingles pain. I take 2 every 6 hours. I make sure I don't take the bills on an empty stomach. Even people who don't have cancer get pain. I took ibuprofen every menstrual cycle since the product was on the market in the 80's. Before that I was in so much pain I would pass out. Of course chemo took care of my menstrual cramps. I don't have to worry about that any more.
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Since we have been talking about shingles; there was something really interesting about the shingles vaccine in a medical advice column in the paper this week. The columnist, Dr. Gott says that anyone who has been treated with drugs that affect the immune system (ie radiation or chemotherapy) should NOT get the vaccine because it is formulated with live viruses. He listed many sources for his recommendation including the Center for Disease Control and Prevention, Food & Drug Administration, the Mayo Clinic etc. something to keep in mind anyway.
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Ruth I just posted on the shingles thread regarding the live virus and not sure when you can actually get it about 2 hours ago.
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Which forum is the shingles thread in? I will see if I can find this article online, if I can find it, I will copy it over. It sounds like one should NEVER get the vaccine in it's present (live virus) form.
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One I started: Shingles >:-(
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OK, I found the article and posted it there.
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Hello all. I've been struggling lately with dripping wet hair - back of my head - and I could literally wring the water out of it. I've always assumed it was lack of hormones due to the AI, but would like to be sure. Humid days and changing weather patterns are the worst. Anyone else have this problem?
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Nancy, no wet hair, but that's because I crank my AC as low as it will go. I am hot ALL the time. And I live in the tropics, too. I wish I was a** deep in snow right now.
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Carolehalston,
What is in Smart water that makes it helpful for leg cramps? Tonic works great but it is loaded with sugar...the sugar free gives me "digestive distress" as do most diet sodas. There have been huge changes in my body since starting the generic Arimidex. I battle everyday to fight off all the side effects i talked to my insurance company and they informed me that unless I was allergic they would not cover one penny of it. Really wish the doctors and companies producing this drug would admit there are side effects so that the medical community would start helping everyone more.
Hope all have a blessed week.
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People with depressed immune systems need to be careful around children, too. The MMR vaccine is a live virus vaccine and the Flu Mist nasal spay flu vaccine is a live virus vaccine, too. Need to stay away from people after these vaccines for 21 days minimum. I find it odd that I was told to avoid children having had the flu mist vaccine, but the same doc told me it was ok for me to take the flu mist vaccine after I refused to get the shot due to needle phobia.
I have more trouble with hot flashes when I'm in a very warm or very humid place. I have a ceiling fan in the bedroom that runs year round no matter how cold the room is. If I can't feel air moving, I will have a hot flash. Very annoying.
I had a round of horrible dreams when I started taking Prozac many years ago. That tapered off, then I started having nightmares again about the time I was diagnosed and all through treatment, but they all had to do with needles and pain. Those tapered off, but over the last couple of weeks they've started up again. Not sure why, no changes in meds, no procedures or anything coming up. Hope it stops soon.
I think it's criminal how insurance companies dictate what we can and cannot do and take. The people making these decisions often are not medically trained at all, they look only at the $$ end of things. It really makes me mad, especially when there is no way to get around it other than to pay out of pocket; Sometimes it's not worth it to have insurance.
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Caerus-Sunflowers, good to see your name again...... just back from my acupuncture treatment. That and yoga keep my joints going. Last week,after a particulary difficult week as far as SE's go: ankle pain, knee pain, flu like symptoms, low stamina, I decided to bite the bullet and go gluten free. I guess gluten light is more accurate, since I sometimes will eat 1/2 a piece of toast. But the difference! I have gone a whole week with far less pain and have needed far less NSaids. I sure hope it lasts. Thanks for the advice.
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TokyoSing
Gluten light - great description. I went "whole hog" gluten free, also in hope of getting rid of some of this excess weight! Now dairy free too - and my body feels so much better lighter, no matter what the scale says. I have strong Spring ( tree pollen) allergies - and the lessening of mucus in my body since going dairy free feels like a real gift. Not even a sniffle! YEAH!!!!
Re: Shingles Vaccine. I was told ( by my docs at Dana Farber)) that it was safe to take it after waiting 6 months after chemptherapy. That was about 3 ish years ago - have felt fine.
Don't want to "jinx" myself - bu also get Flu Vaccine - and haven't been sick since chemptherapy.
Well, except for Asthenia....Enjoyful, you really made me laugh!!!! So much WORSE than "crap" I've described it as Chronic Fatigue Syndrome ( which I've never had) times a zillion! And the weirdest part for me, is, some mornings I wake up feeling FINE - and have no idea why, what I did differently? Just strange...
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Gluten free does work for most and you don't have to get rid of all of it - just as much as you can - it really helps with the joints.
Dairy free? Humm - with the new Xgeva shot, it recommends more calcium and I am already taking so many supplements and I love cheese - I wonder if a partial dairy cut back is possible and have a similar effect?
The fatigue is brutal. I get Vitamin D tests all the time and the 2000 units a day seem to have leveled that out. Some days I pop up like a pop tart and other days, I don't even hear the alarm - this with no changes in routine or meds or supplements or food. I do know that at stage iv and all the se's - there are some that just are not going to change - the fatigue is one of them. So, the time has come for living with the energy I have instead of using it up working. Yep, I am getting ready to 'retire'. I have acheived stable and would like to enjoy life in hopes of continuing to remain stable and having the energy to keep fighting and living rather than fighting, working and then trying to have a life too.
Super Woman has left the building...
LowRider
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LowRider, You will always be a super woman to me. You have always given such good advice with such a great attitude. Now put all that energy towards staying stable and enjoying your life, you deserve it.
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Caerus -
:-D
Aren't the side effects odd? Every day is a fatigue/pain adventure and I just can't find the pattern. It sure makes it difficult to plan and accomplish anything.
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I agree with kira1234! LowRider, you have helped more people than you will ever realize with your sound advice, sence of humor, and "glass half full" attitude. Enjoy, enjoy, enjoy, and stay stable so we can all "hang out" for years to come. You are a super woman.
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(((LowRider)))!!
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Lowrider-congrats on the pending retirement. You definitely deserve it :-)
I'm sorry for those of you experiencing ongoing aches and pains-mine are intermittent. And I started it one week exactly since having the flu, so I can't say if my flu-like symptoms were lingering, or from the Arimidex.
My biggest complaint is the hot flashes! Horrible
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