Arimidex - Coping with the SE's
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What a wonderful saying Ruthbru... Am going to try to remember that one.....
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Patoo
when I started taking it, I was told that I could STOP the chondroitin after the pain went away. That was about 3 months - now I jsut take the glucosamine. Wonder WHICH one caused the water retention? Or both? Well, I'm so, well, FAT, I wouldn't KNOW if I did have water retention
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I was on Arimidex for almost 9 years but had to stop recently due to deterioration of my bones. Can someone answer a question for me? My Onc says the Arimidex gives us another 5 years of protection after we stop. Does this mean we continue to have another 5 years of side affects too? I was using Replens to stop vaginal atrophy while on Arimidex and wonder if I will still be susceptible to the atrophy now that I have stopped taking the actual pills. Does anyone know how this works? I sure would love to give up the Replens but do not want to incur more gyn problems if I do. I was taking 50mg of Nitrofurantoin daily to stop pain but have stopped the pills recently to see what happens. Just wondering about stopping the Replens. Thanks for any advice.
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Hi, Medigal
I never used Replens - tried it once and HATED it. I alternate: making "suppositories" out of either pure cocoa butter, coconut oil, or a vitamin E capsule. Has worked ( well, I'm in my 5th year on the A Team) and probably have at least 4 more - muvh better than anything else.
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Thanks for feedback on the gluco/chondr.
When I talked to my MO about the SE of Arimidex, and she asked how I did thru regular menopause, my biggest complaint was the vaginal dryness. She gave me a rx for VagiFem which is a hormone insert. I thought if you had BC you could not do this. and she said since it is local it is OK. I gladly filled the rx and am 2 weeks in, already see a diff. I discussed it with my BC advocate at my hospital and she raved about he vagifem. So who knew.
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Ruthbru, claire in seattle and Mcgaffey, thank you for writing to tell of the good Armidex is doing for you, it helps to see that not everyone suffers so many SE. It made me feel better about trying it. I did not do Tamox well and am currently on Zoladex (3 months) and doing well with it. They suggested a hysterectomy so I dont have to take the shots anymore but Im debating about it. I dont mind the shots and combining it with Armadex, although it still scares me a bit. It made me feel better to know that not only does it help us but it does not have the same reaction to all. I cross my fingers and toes that i have the same as you with it. Much luck to you ladies, god bless.
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For those taking Glucosamine- this is well, interesting. My blood glucose has gone WAY UP since starting Arimidex. I thought it was the Slo-Niacin, now I don't know...
who was it who said, "Are we having fun yet???"
http://www.glucosamine.cc/Chondroitin_Glucosamine_Side_Effects.htm
Chondroitin glucosamine side effects: insulin resistance If you suffer from insulin resistance or diabetes, or are at risk of developing insulin resistance, you may experience serious chondroitin glucosamine side effects, because glucosamine is believed to affect insulin resistance in humans. There are currently no clinical trials with human participants to back this theory, but animal testing has showed that there might be a link between glucosamine and insuline resistance - at least for certain animals.
Until we know more, chondroitin glucosamine should be used with caution by those who suffer from insulin resistance or diabetes, or are at risk of developing insulin resistance. Consult your doctor before you start using chondroitin glucosamine. One way of avoiding potential chondroitin glucosamine side effects is to have your blood sugar checked regularly. Insulin resistance is serious, because it increases the risk of developing type 2 diabetes and metabolic syndrome.0 -
Ginger did you try Xanax while before you stopped the Arimidex? I found that helped. Now that I'm taking a break from generic Arimidex I realized how not only did it cause anxiety and dizziness but swollen hands and feet/ankles.
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Marybast,
I am on Femara, and didn't have Chemo. I have been on it for 4.5 years and have also been suffering problems with my toes. I suffer from cramping in my ankles, feet and toes, particularly when I lie down at night. It is not usual for me to have to jump out of bed during the night 8-10 times when the cramps start. Since this started, I now have the 2nd & 3rd toes on both my feet have started to feel numb all the time, so maybe it is caused by the AI. I have also had chronic lower back problems for the last 3 months also, I originally thought it might be from the AI, but now I am starting to worry about bone mets.
Ched
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Marybast,
I am on Femara, and didn't have Chemo. I have been on it for 4.5 years and have also been suffering problems with my toes. I suffer from cramping in my ankles, feet and toes, particularly when I lie down at night. It is not usual for me to have to jump out of bed during the night 8-10 times when the cramps start. Since this started, I now have the 2nd & 3rd toes on both my feet have started to feel numb all the time, so maybe it is caused by the AI. I have also had chronic lower back problems for the last 3 months also, I originally thought it might be from the AI, but now I am starting to worry about bone mets.
Ched
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medigal, I think when you stop the SEs go away because a friend of mine just finished and said to her doctor that she felt fine,that she really never had any bad SEs, and he said, "No matter how good you feel now, you will be suprised how much better you will feel once you are done." So, that it is pretty encouraging!
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Just a note to remind all that Arimidex is but one of the AI's. If one causes you distress that does not pass there are otehrs you can take. No need to beat yourself up like I did. I was reall y torn up because I thought I would have to quit AI's period to have any quality of life. I was wrong, aromasin works fine for me with minimal manageable SE's.
Loved the quote Ruth.
Ginger
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Bogie - I do have a Rx for Xanax but can't take it daily for depression, it makes me very sleepy and I still have to function, not to mention its addicting.
I do know that the AI is the reason for the depression/anxiety definately, because I am one week off and feel like my old self, no sad cloud hanging over me. I have to go back on because I need this med, so will talk to the onc about a antidepresent once I go back. I hope she believes that it is from the meds when I explain it to her (and my therapist said it is a definate from the meds) and is willing to give me something like Effexor everyone seems to use...Ginger M.
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I always like to mention Buspar - it is an anti-anxiety medicine that I take. It is non-addicting and does not cause drowsiness. It basically gave me my life back after I experienced so much anxiety my body physically trembled. Surprisingly, I only need to take a small dose for it to be effective, 7mg a day. I believe you can be prescribed up to 60 mg a day. Anyway, I had anxiety months before I began taking Arimidex. I tried numerous anti-depressants which only increased my anxiety, so I was greatful to finally find Buspar.
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Day one of Arimidex-fingers crossed.
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Kelly, Wishing you a side effect free Arimidex experience. Good luck!
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Medigal: I've been wondering the same thing. I stopped Aromasin about 6 weeks ago and still have bone and muscle pain and bad cramping in my toes. One of my toes is so sore I can barely walk in the mornings. I am not too concerned about mets because my surgeon told me breast cancer does not metastize to bones below the knee.
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Girls,wish all of you all day laugh!
Its good medicine!
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I learned something wonderful on the http://community.breastcancer.org/forum/8/topic/776318?page=15#idx_430 for treating vaginal atrophy - I used to make suppositories out of coconut oil, and I thought that was good UNTIL I followed a suggestion posted on this thread and used cocoa butter.
OH, MY - what a difference. My problem ( almost 5 years on the A team) can be so painful, it almost hurts to sit down, really, just have had some terrible "episodes" even WITH the coconut oil. SO, now I "chip" a piece of the cocoa butter, and use it as a suppository. BLISS. I've bee using cocoa butter on my face, for dryness, but then you have to put the jar in the microwave for a few minutes to soften it.
Anyhow - for all those who are using coconut oil, and are interested - ORGANIC COCOA BUTTER. I get it from the local health food store - it's made by Aura Cacia.
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Does it come in a b ar form? To chip it off? I didn't understand that others were having it hurt. Sometimes just wiping after urinating it hurts like the skin is pulling when I am being very careful. I honestly thought the oils were for having relations, not just every day. I need to get this.
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Ginger
Pure organic cocoa butter comes in a jar, inside lid, with a thin wax coating - it is VERY VERY solid, to use as a cream, the instructions say to melt it for a few minutes in the microwave, and it is FABULOUS as a skin moisturizer. Smells like chocolate.
Well, my vaginal atrophy is SO BAD, sometimes it would suddenly REALLY sting/hurt if I changed positions just sitting down. Or I'd be walking and suddenly STING like I'd been stung - which of course I wasn't. So, that's when I started using coconut oil.
Always looking for something, I noticed this other thread - and that's where I learned about the cocoa butter. So when I say "Chip" - I mean use a small knife, or sharp thingie to get a little piece out of the solid in the jar - and Voila, you have a small suppository. Don't have to put it in fridge or freezer, like you do the coconut oil, cuz it's already in very solid form.
EVEN MORE MOISTURIZING than coconut oil, so if somebody hears it's bad for E+ women, please don't tell me
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Aint that the truth!!!!!!!
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Sunflower does the organic butter sell at trader joes? Sounds better than the coconut oil.
Devinemrsm I keep forgetting to ask about Busbar, great suggestion. Can you still focus and concentrate? I work with numbers all day and can't afford to feel foggy or lose concentration.
Surgery scheduled For this week to replace TE and remove capsular contracture. Dang at this rate I'll be walking around with stupid expanders inside me for two years.
Happy positive thoughts
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Pure organic cocoa butter, okay. I had a small jar once and had no idea you had to melt it. I thought it was the worst thing ever even though it smelled like orange chocolate. Now I see the error of my ways.
Sunflowers your discription of stinging really rings true for me. I will give this a good try. Thanks all.
GIngerbrew
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Bogie, yes, I can focus and concentrate just fine on Buspar. Altho I seem to be very sensitive to medicines, this is one that agrees with me nicely. No fogginess at all, no drowsiness.
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The small (4 oz) jar of Organic Cocoa Butter I use is made by AURA CACIA. I don't know if TJ's sells it, I know Whole Food does, but it's less expensive at my Health Food Co-op. Cost's about $7. which is not much, as it lasts forever.
Just remembe to remove the thin wax cover whichis just under the plastic "sealer" cap under the lid. Says :light chocolate aroma" - it is light. Scent of chocolate.
Ginger - I haven't felt the "STINGING" once since I started using cocoa butter! Thank's to that thread on Stage IV, which was mostly about "scream cream" - but someone mentioned the cocoa butter for mositurizing - can't remember who, but I shall forever be grateful. Thread too long to go back & find out.....
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My Dr. gave me a perscription for the stinging at my one year checkup called Temovate. I was a little embarassed to ask for anything because I knew there wasn't much out there we could use. I even asked about the coconut stuff. He said give this a try for two weeks first. Dang...had I known this was out there I would have asked after my surgery. He was correct I used it twice a day for two weeks and was fine until recently. Which he said I might have to use it hear and there after the first two weeks. Maybe it will help somebody else.
If I ever see cocount stuff...I will buy it too.
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Kitty
I like the COCOA BUTTER even better now than the coconut oil
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Hi Ladies,
Ok, I'm ready to get on board with the cocoa butter, but call me a sissy! Has anyone checked with their Dr. about this since we're using it internally? Keep telling myself it's got to be better than a bunch of chemicals, but still I worry.
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