Arimidex
Comments
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I know.... I had read the SEs many times but just skimmed over "asthenia". I don't know what I thought it meant. Duh!!!
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Good joke if it wasn't so sad! :-)
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Notself, - how does one know if the inner labia has disappeared or been absorbed.
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Molly,
I was very dry and in real pain at night when I slept on my side. I thought it was just dryness which is one of the SEs. This kept up for months until finally it occurred to me to use a hand mirror and look at what was going on. My inner labia were almost half gone. In another month, they were completely gone. The dryness is even worse because the moisture of your labia comes from the inner one.
I have to use cream every night or I can't sleep. It hurts to sit too long in one position. I went to my PCP and she said that Arimidex had given me the genitals of a 90 year old woman. She had to be very careful with my pelvic exam. This isn't listed as a side effect, perhaps because AZ doesn't want to list such a bizarre side effect. It is either very rare, or women are thinking like I did that what they are feeling is just dryness. I hope it is an extremely rare occurrence because I wouldn't wish this on any woman.
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I have a 4 inch memory foam on my bed and love it.
As for getting up and down. forget it! If i get down i just do whatever i can while down there.
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Thanks JO. I'll probably first try a cheaper one. I do get the 20% Bed, Bath and Beyond coupons already so if I like the cheaper one will spring for the, ouch, higher priced one.
Hi to everybody!
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Wow Notself, it hurts just reading about it. It sounds like something people could have and not know unless their doctor told them - or like you, did some investigating. I am sorry you have this, it really does sound awful. Does your PCP say it will repair itself when you stop taking Arimidex?
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It's permanent. After many different creams, I find Lubriderm with Vitamin E works the best. Now it is just another irritation (pun) that I live with. I am lucky to have so few irritations that this is the worst.
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I think some of the above reported %'s of side effects reported by the Arimidex company is inaccurate. For example, my oncologist told me that at least 30% of his patients could not tolerate Arimidex because of the severe debilating bone pain, and according to the above it's only a small percentage. He also tells all his patients "to watch the weight" as weight gain is very common. Another comment he made was that patients can switch to another AI as sometimes, the rest from one drug and then changing to another can sometimes have a completely different effect on the body and often lessens the bone pain to a tolerable level and one that the patient can manage without the use of pain killers (as those two drugs: pain killers and AI can seriously put stress on the liver).
Talking about liver support: Dr. Lee mentions in his book ( "What your doctor may or may not tell you about breast cancer") that certain veges are good for the liver: one is spinach and there are others but I don't have the list in front of me at the moment.
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Yes, use the cream on the very inner edge of the remaining labia. Do not put any cream in the vagina. And I agree, do not use anything but a good quality body cream or Vitamin E.
It appears that there may be something to report here.
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Hi Joycek,
Side effects for Arimidex don't show up for 4-6 months for most people (according to my onc,) so if you still have relatively none or few side effects by that time, consider yourself home free!
About lymphedema: Two little ladies of 70 ish in age that I recently met who had breast cancer about 20 years ago tell me that they have always been very careful not to lift anything heavy with the affected arm. Also, they added, it is better not to gain weight as too much blubber in the affected arm will cause circulation problems. They have never had lymphedema at all! And both ladies had significant number of nodes removed.
These two ladies had their breast cancer before Arimidex was available and their cancer never came back. That was wonderful news, I thought.
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I am soooo sorry ya'll...I left you hanging...I went on vacation the next day after my post to spend my son's 21st B-day with him. My desk was so piled when I got back, I had only a little time to catch up here....geez. (Had a GREAT time with my son).
To explain - 6 month PET scans showed some complete resolution in a couple areas, no progression in all but one area. The one area is right at my worst degenerative disc and I know it lit up from inflamation as dummy me was up on a ladder and twisted just that wrong way...so I am continuing on the Arimidex with the Aredia and we will do scans again in 6 months. May hit that one area with some rads if it lights up again on the PET. May do an interium MRI to be sure.
Thanks to all of you and good going notself....a toast to many, many more clean mamo's!
Walking and Water have seemed the best for me to resolve the cramping and joint pain - hadn't considered the quinine...humm.
Hugs
Sharon
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I had eight lymph nodes removed and was very careful about lifting and reaching over my head to get things from shelves. I kept this up for about six months and then slowly started to lift and reach.
I can now move rock around my garden that weight between 10lb - 25 lb. without any signs of lymphedema. I seem to have slight swelling when I do the least such as spending hours on the computer.
I think that lymphedema is dependent more on what lymph nodes were taken and how the lymph can re channel through other areas. I have a spot under my arm that acts like a little well. It gets swollen and when I message it gently, the swelling goes away.
Here is a video about lymphedema message that was posted quite some time ago. It is good information about how the lymph system works but I don't know enough about message to know if the techniques presented are useful. Please check the techniques with your doctor before trying them.
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My doctor said doing some weighs (light of course, and build up if you want to) is actually good for you and builds up your lymph system. I make sure I lift some weighs at least 3 sessions a week. I find when I DON'T lift for a few days my arm starts feeling heavy and achy.
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I find I suffer very little now with cramping since adding the quinine - really appreciate that tip.
Re Dove, some of the Dove liquid soaps have soy, so check when buying if you are watching soy.
Re lymphedema, it can rear it's ugly head even many years later, so take care. JO had recommended a very good resource Lymphedema, A Breast Cancer Patient's Guide to Prevention and Healing by Jeannie Burt and Gwen White. It has good information as well as massage techniques that we all might want to do occasionally anyway.
I find my hands swell a little after a long walk so I use some of the suggestions for moving the lymph fluid that I learned from the book.
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I join the Arimidex crowd in a few days, and am convinced I will be just fine. But there are other options if I'm not.
A couple of other things I would add:
- Ruthbru: you might want to try my mattress selection process. I needed one quickly when I moved to Seattle three years ago. So searched Craigslist where I found an almost brand new one as part of a divorce sale. So met an unknown guy at People's Storage in Ballard to test a mattress prior to purchasing. Collected two days later and brought to apartment on roof rack. Best one I have ever had (Seeley pillow top).
- Weight gain isn't inevitable as we get older. But we have to exercise more and maintain muscle tone. That is why I do weights and crunches every week day on top of significant aerobic.
I have been warned about bone loss with Arimidex, so will keep an eye on that on top of making sure I do tons of weight bearing exercise. I expect to be just fine.
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Weight bearing exercise and plenty of calcium.
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... and Vitamin D, so you'll absorb the calcium and your bones can use it.
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On the Vit D. So glad to be taking 3000 ius as opposed to swallowing 10 of those capsules daily as I was back in October/November. Fine now, but still needs to come up a bit more.
I eat a ton of dairy products so not worried about calcium. Have been through milk, yogurt, and cheese today. Not to mention the brussels sprouts with dinner.
Dragged a new container of milk and other groceries back from supermarket one half mile on evening walk.
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Came back from vacation and my 83 yo mother broke her hand so things have been busy and I've not checked in.
First off, thanks Molly for your reply. I hadn't thought about checking for a brick and mortar location but it makes absolute sense. Thanks for your input.
Second - For those watching processed sugar intake but still with sweet cravings, I have 2 favorite quickie recipes - (1) Banana Ice Cream - freeze very ripe peeled bananas, break up, blend in a shallow blender (Oster makes one) with a little skim milk, honey/maple syrup/splenda / whatever, add almonds if you like or ribbons of more honey - its fantastic soft serve ice cream. to vary the flavor I'll add frozen strawberries or mango as well. (2) Quick "baked" apples - dice apples , toss with maple syrup and cinnamon put in microwave for about 4-5 minutes - its really nice.
Night all !
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Lots of posts to catch up on! As usual, some good discussion. Knock on wood, I'm continuing to be among those experiencing tolerable SEs from taking Arimidex. Some joint stiffness. Occasional mild hot flashes. I've managed to drop 3 to 4 lbs and am hoping to drop 6 to 8 more lbs to get back to pre-bc goal weight. Life is good most of the time.
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Hi
has been a while but I have a few questions. My onco wants to switch me from tamoxifen to arimidex. I have been on the tamoxifen for 2.5 years, had side effects, but they have pretty much subsided. A little weight gain, no sex drive, but other than that, tolorate it pretty well. My questions are:
1. Do you go through and have a new batch of side effects from the arimidex, like hot flashes again?
2. If so, how long before they appear, and subside? He wants to see me in 3 weeks to check how I am doing.
3. Do you finish out your five years of hormone therapy or will they keep you on it longer? I have been looking forward to being drug free in another 2.5 years, don't think I can stand it much longer.
4.. Is there any hope for the sex drive on arimidex?
thanks
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garetann..IF you go back back to around the first of the year on these posts You will hopefully see my experiment to jump start my libido...It worked !!! ... I am on arimidex and that WAS my major compaint...There a a few hilarious repsonses to my posts also ...Feel free to ask any questions....
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Lakewoman, if garnetann clicks on your name, she will go to your home page with info about you and below that will be your posts. Or, you could pm her by clicking on her name. Or...you could explain your "experiment" with a post here. Lots of options! 0
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Back to food for a minute. The banana ice cream sounds great, thanks! Here's a smoothie I make and really enjoy. In a blender, dump in a cartoon of any flavor low fat yogart, then put in some fresh (or canned) fruit; a banana, peach, pinneapple, berries, whatever. Then throw in a big hand full of frozen fruit of any kind and splash in some low calorie fruit juice (any kind again; cranberry, grape, orange etc. etc.). Blend up and you have a yummy, totally healthy frozen drink. 0
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garnetann - I just made the switch from Tamoxifen to Arimidex. (Actually, my med onc had me take 2 weeks off so that the T cleared my system before I started Arimidex.) My Hot flushes prretty much picked up immediately. For the most part, they're exactly where they left off - often every 2 hours at night but just for a minute or two. I had only been on T for a few months so my situation isn't quite the same as yours. Now, here's the wierd part: while on T, my hot flushes started with my feet and worked their way up. Now, for whatever reason, they start with my head and face - almost feels like I'm getting a fever but lo and behold, it's a hot flush.
By the way, for those of you also suffering from hot flashes/flushes, I've found that a frozen water bottle near my bed works super well - I just put it on the back of my neck for a few seconds and I feel much better. Best of all, it stays pretty frozen all night, unlike an ice pack which thaws pretty quickly and it's lots less expensive than a Chillow.
Oh and thanks ruthbru for the smoothie tip - I do a simpler version with skim milk, splenda and frozen fruit (or frozen skim milk ice cubes and fresh fruit, depending) but yours sounds way tastier. I'm on a yogurt kick and the idea of a yogurt smoothie is making me salivate.
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Women who go through menopause without HRT say that the hot flashes eventually stop. I wonder if it's the same with the AIs. My mild hot flashes are mainly at night. I push the cover off and after a while the warmth goes away. I pull the cover back on. This may happen only once or twice. Usually when I get up to go to the bathroom, it happens after I get back into bed.
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For me the hot flashes evetually tapered way off; like to almost nothing. Another thing if you do get a hot flash; if you can cool off your wrists the rest of your body cools off too. So even having a cold bottle of water or pop and rubbing your wrists across it will make you feel cooler (if you are in an situation where you can rub an ice cube across your wrists that REALLY helps). I slept with a fan right next to the bed for awhile too.
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Well, no arimidex for me, my onco and I talked it out, both the cost and side effects scared me off. And he is giving me 2 months off the tamoxifen to give my body a break. It has been a long time since I have been drug free, I am looking forward to it.
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Sunflowers - Yep ! Odd, I know. Of course, I'm not suggesting laying it over one's face...a bit too cumbersome for that. LOL ! And keep in mind, this is just for overnight. When I get clammy at night, I'll either put it on the back of my neck or even lay it next to my side or chest. (Even more effective if there's no cloth in between the skin and bottle.) Because of the size - I've been using a 1 liter bottle but will experiment with a 20 oz bottle tonight - it stays at least partially frozen all night long. The problem I've found with any ice pack or small container is that they dont stay frozen thru the night and so I'm back and forth to the freezer. The bonus advantage is that I also have ice cold water to sip when I want it.0
