Arimidex - Coping with the SE's
Comments
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Justina...I've been having the same problem with my hands, especially my right hand and went to see my MO today. She told me that it is a side effect of the Arimidex. I'm also starting to have problems with my ring finger on my left hand wanting to lock up sometimes. OUCH! That too is a side effect. She said that some women can have these problems just going through menopause but adding the AI can make it worse. I'm also more depressed so she is switching me to Femara in the hopes that I will tolerate that easier. She also gave me Effexor to help with the hot flashes and possibly the depression a little, though it's a small dose.
I was just really annoyed because when I asked what my chances of recurrence are without the AI she told me that everybody that stops has the cancer come back. I told her that wasn't possible! Stage 1 does not have 100% recurrence rate. She just always likes to scare me into everything. She said she doesn't have any patients who have stopped and are doing well. I told her she doesn't know because they probably don't come back to see her because they're fine. She said that even if my chance was only 2%, if it came back to me the numbers wouldn't matter. This is true, but I also told her that if the medication gives me a heart attack because my cholesterol goes up and I can't lose weight and I'm stressed out because I feel so lousy, the cancer coming back won't make any difference either. I am becoming very tempted to switch doctors...
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I know what you mean kim24; and vent all you want!! This is the place to do it! I'm frustrated because I can't lose weight either and I'm depressed. You can never have a break thinking about the cancer because you're constantly dealing with the side effects of the medication...a daily reminder. The mood swings are terrible for me too....last Friday, I was so upset that I cried most of the afternoon. My poor kids and husband! I'm worried too about the long-term effects of the medication. If I can't lose weight, my cholesterol goes up, and I'm stressed all the time, I'm afraid of having a heart attack.
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Justina, I want a doctor who only tells me facts and the truth. If I am in a position where I needed to make life changing decisions I want a doctor who I can trust by my side.
Effexor, 150 mg will begin to treat depression. I was on 225 mg a couple years before Cancer due to a deep depression. I am doing fine on 150 mg now. I started back on it because I started crying a lot and later the hot flashes.
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Loves Christmas barb I understand your frustration with loosing weight. For a month, I ate 1200 calories a day and managed to loose a pound or two...that was 400 a meal. Not much. When I complained tomy MO she said most women gain weight and I should be glad I haven't. When I got home, I ate a "normal" meal and have not eaten the restricted diet since because I was so angry at her lack of compassion. I have gained 4 pounds! Now I am going back to 1200 a day.
Sometimes I have to remember that my MO is a person too. One who treats people with very serious medical problems who sometimes don't survive. My not losing weight might have seemed trivial compared to other patients she saw that day. I still want her to be sympathetic to my issues and be honest with me about SEs etc. but I also need to understand that her goal is to have me survive and not have a recurrence. I should be glad she didn't ask me if I would rather have side effects or be like another patient who just found out there was no hope.
Sorry, didn't mean to depress everyone. -
Check out some of the threads on the Forum: Fitness and Getting Back in Shape. It can really be helpful to be encouraged by others who have 'been there/done that' and are working on their diets and exercise goals together. (My two favorite are 'Lets Post Our Daily Exercise' and 'Wednesday Weigh In'.)
The worry about recurrence is the universal fear of all survivors. For people not able to take an anti-hormonal it is even worse....at least we can take something that really, truly greatly increases our chances of remaining cancer-free. Hang in there, everybody!
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Just wanted to let you know I have been on Arimidex for 15 months now and I did have really bad SE with my hands . I had 2 fingers and a thumb that had trigger finger , now My thumb is OK and my middle and ring finger is not as bad. I was about ready to quit but just hung in there and things are much more tolerable now, Hang in there there is hope.
Nancy
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LovesChristmas-No doctor (or anyone else for that matter) should lie or mislead. I'm certain there's something in the Hippocratic oath about it, and if not, I'm sure it's implied. It makes me livid that she would speak to you like that.
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I must admit that I was so stunned that she was telling me that, that I wasn't sure what to say back to her! I did tell her that I didn't believe that there weren't people who were fine who hadn't taken the meds.
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Can I ask why some of you are unable to take Tamoxifen?
I have to start T or an AI and am doing my own research before discussing it with my oncologist. I am post menopausal, have high cholestrol contolled by diet and family history of osteoporosis. I am also on an antidepressant which is not compatible with T so would have to come off that and start Effexor if I was to start T. So am just trying to work out which would be best for me an AI or T.
Thanks
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gerrib, for good information go to the BCO home page, under 'Treatments and Side Effects' click 'More Topics'. 'Hormonal Therapy' will come up. You will find a lot of information there including a hormonal therapy side effects comparison chart.
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gerrib--a woman cannot take tamoxifen if sheis at high risk for blood clots or uterine cancer. Generally, if a woman is post menopausal one of the AIs is recommended rather than tamoxifen.
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ruthbru - thanks for all the navigating you do on here and posting, sometimes I find trying to locate something here is overwhelming... Ginger M.
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Back from my Oncologist visit. There was no change in my chest scan. Still showing a small dot but they think it may be scar tissue. So I get to repeat in six months this time. Still on the three month schedule with Oncologist office though.
Anybody have heel pain? I am not sure if the pill is causing it or if it's just a new problem.
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Hi there. I have terrible pain in my right heel. Podiatrist just fitted me for orthotics and sent me on my way. And they don't even fit in my shoes. We're still dealing with it 4 months and 2 sets of orthotics later. I can cope with a lot, but this joint and muscle pain is terrible!!
Carpal tunnel syndrom is my latest problem. After a year and a half of splints, cortizone injections, exercises, etc., I'm scheduled for bilateral carpal tunnel release in 2 weeks. Fun times!!
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Do the major drugstore chains charge roughly the same amount for Arimidex?
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Actually, a woman CAN take tamoxifen if she has not gone through menopause, I have been on it for 2 years. It's the AI's that you can't take until you are post menopausal! Just wanted to clear that up.
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My hand and wrist pain went away when I went onto Aromasin instead of Anastrozole
No my hands a little bit achy but not at all like before.
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I also have been post menopausal for 10 yrs (surgically induced) and took Tamoxifen for a yr. Then talked with my MO and we changed me to generic Arimidex which I have been on for the last yr. I also take Effexor 150mg for hot flashes and night sweats only even though it is an antidepressant. It works really well. I take it each night about 30 mins to 1 hr before bedtime.
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What's the best way to find out how much Walmart charges for Arimidex (not the generic.) Are they the same price everywhere? We have a new one nearby, although I vowed never to set foot in it. Self-interest may win out.
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Native Mainer echoed what my MO told me,no reason other than he simply stated that no menopause you get Tamox,after menopause you get Arimid at his office and thats just the way it is. Has anyone had weird side effects? I am getting sores all on the inside of my mouth and I have been sleepwalking and sleep-eating which is freaking me out a little,I worry that I might try to drive in my sleep. I found out this morning when there were leftovers all the kitchen and I was here by myself with the deadbolts on and there is no key to the deadbolts if you lock them from inside so I know the dog isnt smart enough to cook and the dog doesnt eat popcorn so it was me!! Cant believe I ate all that cause my mouth is so sore. No wonder I am gaining so much weight and exhausted all the time. I had to come home from work today to take a nap. I am gonna put the car keys up and away and leave myself a note for in the morning. I gotta talk to the psych about this when I finally get in. He is booked way in advance. Guess only cancer patient psychologist around.
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Keno is correct, I goofed when I posted before. I've edited my post so it is correct. Thanks Keno!
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Tamoxifen works by attaching to estrogen receptors in cell walls, but it does not "turn on" whatever estrogen turns on in that cell. In an ER+ bc cell estrogen turns on the message to make more bc cells. Tamoxifen binds to the estrogen receptor and keeps estrogen out. Tamoxifen also binds to the estrogren receptors in the cells in the uterus, but does not turn on the protective action that estrogen does, that's why uterine cancer is a risk of taking tamoxifen. Premenopausal women have lots of estrogen floating around, made by the ovaries, so tamoxifen is the drug of choice for premenopausal women.
After menopause, when the ovaries stop making estrogen what estrogen we have comes from the work of an enzyme, aromatase, that converts fat and cholesterol in fat cells to estrogen. This happens mostly in the belly fat, but can happen in any fat. The fatter you are, especially if you have belly fat, the more estrogen you will make this way, which may be why overweight women have a higher risk of ER+ bc recurrence. The aromatase inhibitors like arimidex attach to the aromatase enzyme and make it stop working. That way what little estrogen is made through the fat are nearly eliminated, starving the ER+ bc cell and killing it.
Because the ovaries make so much estrogen compared to the aromatase enzyme giving a pre-menopausal woman an AI like arimidex won't do any good. Tamoxifen is the only drug that blocks estrogen effects in pre-menopausal women. It also works in post-menopausal women since it doesnt' matter where the estrogen comes from, tamoxifen keeps it out of the cell receptors and blocks estrogen's action on the bc cell.
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Yikes Layla! That would freak me out too. Our daughter used to sleepwalk and I was always afraid she would leave the house too (she never did). Usually, she just did things like take a shower or move the furniture in her room around.
I do think I remember reading other people having problems with mouth sores. I would be tempted to call my doctor.
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Call them and ask. By law they have to have a price sheet. Do you have a Costco in your area? They have very competitive pricing. Also, the manufacturer of arimidex has a program for $40/mo including shipping. the link is here:
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LovesChristmas-Barb, sorry you are having same issues with your hands but glad i am not alone. What really upsets me is that i called the oncologist two days ago about these side effects and he or his nurse have not called back. I would love to know the statistics of recurrence of those who not not take estrogen inhibitors for five years. Sometimes i am tempted to toss all the medicines in the garbage. I might feel better.
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LovesChristmas-Barb, sorry you are having same issues with your hands but glad i am not alone. What really upsets me is that i called the oncologist two days ago about these side effects and he or his nurse have not called back. I would love to know the statistics of recurrence of those who not not take estrogen inhibitors for five years. Sometimes i am tempted to toss all the medicines in the garbage. I might feel better.
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Layla are you by chance taking ambien? I ask because that is exactly what my sister was doing while using it to help her sleep. She couldn't figure out why she was gaining weight. It wasn't until her roommate caught her that she figured it out.
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I called my Oncologist to tell him I was getting anxiety, hot flashes and dizzy spells on Arimidex (generic). He wants to be sure it's the Arimidex that is giving me the anxiety. He said he's not an expert on anxiety and that the side effects sounded awful. I'm having surgery on April 5 th so he told me to stop the Arimidex and call him after surgery is over to see if the anxiety got any better. He asked if I was depressed I said well I'm on Wellbutrin and yeah I guess I am, I have cancer...grrrrrr.
I'm also thinking of going for therapy to manage all the stress and work a full time demanding job, family,life is stressful! I also don't think PCP or MO are exactly up to speed on treating or knowing which antidepressants and anti anxiety meds are best and how to really treat the symptoms. So I'm looking into a psychiatrist who does know and has expertise with these drugs. -
P.S. Can I vent about one more thing...I have a mass 3.5 cm now on my thyroid, biopsy was benign but it's growing and Endocrinologist said cancer can still be right next to it when the nodule is large. Ok I feel better now, I had to get my last vent in for the night. I have to take baby steps, one day, one symptom and one surgery at a time...sigh, breathe and go for a walk.
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Chris 13 Astra Zeneca has a new program they started the end of last year. You can buy Arimidex from them directly - $40 for 30 tablets, includes shipping. You can enroll in their program at www.arimidex.com Just starting my second month with them. I've been on Arimidex since October 2009. My insurance would not cover brand name when it went generic, and the brand name cost increased again in January to $421/month.
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