For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I went to my MO today and it is time for me to start the next step in this process. He called in a script for Anastrolzole that I have to pick up tomorrow. I am not very thrilled with starting it but I told him I would at least give it 3 months and see how I do.
This topic of arthritis and joint pain is very timely for me since I already have signifigant arthritis, mostly in my thumb joints.
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Bren, stay feeling positive, I have not had any achies and coming up on the end
then again I am a gym junkie and just returned from my evening gym where my routine includes about 30 minutes of stretching....if worried, try a trainer and a gym!
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Here I go again - you shouldn't be taking supplements without checking with either your PCP or your onc first!
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Annie, You are such an important person on this list (community) to be sharing things you have discovered. Have you heard of the veg. form of calcium? I have just ordered it as ( though I am not a vegetarian) I think I will prefer it in a natural form . also hve you found the web site called "Save Our Bones? I have ordered the book as I am very concerned about osteoporosis and do not want to take the pharaceutical products with the scary side effects. Actually I have had the book for several years but NOW I really need it so am consulting it and the info. she shares on her website about exercises etc. I hope I can learn other things from you and others who post here.
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208Sandy, you are right and all supplements I take have been OK'd by my MO. The ones I mentioned above were actually recommended by him for neuropathy from chemo. The one exception is the L-Glutamine, which I asked him about and he approved. But everyone should check with their own doctor, of course.
And Cloudwatcher, no, I am not familiar with that website, but I'll check it out. I take Fosamax and calcium citrate and vitamin D3. I also do strength training. I've had no side effects from Fosamax after a year & a half and it has helped my bone density.
Actually I eat "mostly" vegetarian. I eat beef occaisionally and fish once or twice a week. I never eat pork and only eat chicken if I buy it from a farmer I know. I also limit dairy products. Some of this is because of my ethical concerns about the horrendous treatment of animals in the current factory farm system. Agriculture in America has changed drastically in my lifetime and I think the effects on human health and animal welfare are negative overall - just a personal opinion.
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Bren58: I'm your thumb arthritis sistah! I'm not quite 52 yo and have had trouble with my thumbs for years already. If you find the magic cure please let me know, k??
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Ladies I have had trigger thumbs for years, and I wear these splints while I sleep and they actually cured my trigger thumbs.
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My PCP suggested a book called "Fork over Knives" and yes it is promoting vegetarian diet. I do believe that we as a country eating too much meat and not enough vegetables, especially organic grown. I have been trying to buy organic; however, I am not too sure if we can trust those (who is watching the growing process?). I buy the beef from a friend I trust and it is grass fed. I have a full schedule and unfortunately I get busy and eat things I shouldn't. I am trying to improve every day.
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I havent been on for awhile, resting up. Was on Tamoxifen for a year but cried every day so I had Dr switch me to Armidex. My mental state is good, dont cry anymore but have been on armidex for 6 months and feel like my body is 100 instead of 67. So is this old age or pills. Decided to take a break and have been off for 5 days and the difference is amazing. Today I did housework and can walk more than 10 feet without sitting down. And the feet. Had the tingling in toes from chemo but it spread all over the bottom of my feet when on Armidex. My hips dont hurt anymore, legs dont hurt and fingers are better. The LE is also better (have it in both breasts). When the little holiday is over I will go back on it and know that some day it will be ok. I have about 2 1/2 years of this left unless they decide to go for 10. God forbid. The idea of going through bc again scares me more than the pills. My onco is a very nice man who has no clue to what women go through. He does his job well and leaves pain management to other doctors. Have new insurance coming in on Aug 1st and need to find a doctor to deal with the other issues. Right now at point where I take pills for the pills, just dont seem right.
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As sorry as I am to read about everyone's struggles it is so comforting to know that I am not alone. Well meaning friends give stupid advice ie just go off of the pills. It's so frustrating to be around people who have no idea what it's like. Another friend said "with age we have to get used to aches and pains". It boggles the mind and I can't help it, it upsets me. How can people be so insensitive and discount what is going on? One person I know compared it to an attack of gout. She said she took the pills for only a week and they made her feel bad so she gave them up. Implying that is the smart thing for me to do. I did call her on it and said "you're not comparing cancer to gout are you?" Anyway, I just so appreciate reading everyone's experience and thought process because it all makes perfect sense and validates my own thinking. It's nice to know I am not alone. Let us all get through this stage and on to the next, which, God willing, will be disease free, drug free life!
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Trigger thumb. After reading here, I discovered that's what's wrong with mine. So I was at PCP today and mentioned it. Said some say its an SE from Arimidex. He'd never heard that and pulled out his phone to took it up. He didn't pooh pooh it, but wasn't convinced either. So I got a shot in the base of my thumb, sucker hurts more than it did before!
SEs. I was having hot flashes and sweating, insomnia. MO put me on Effexor. Took care of that. Now I know if I wake up drenched my blood sugar is really low, like 40s.
And my MO said 10 years on Arimidex. Oh goodie.0 -
Timbuktu, I had that frustration during chemo from people who advised me not to do it and to try "natural" alternatives like laetrile or marijuana. As if the decision to have chemo and to persevere through it wasn't hard enough and as if I hadn't educated myself about it. You just want to scream, "Excuse me, but I'm fighting CANCER, here!"
If the scientifically proven treatments have risks and side effects, that doesn't mean they aren't our best and smartest choices. It just means sometimes you have to fight fire with fire.
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Spookiesmom Your PCP isn't looking hard enough. It's not as common as some of the other SE but it is mentioned all over the web.
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Lago, you know how it goes, try to cram everything in a 15 min visit. He was interested, and I think he's the kind that might try to find out more about it. And I could look around to find something. To print for him.
Timbuktu. Tell the alternative people to ask Steve Jobs how it worked.0 -
I asked one friend "how many books have you read about breast cancer? I've read a lot!"
The gaul some people have! Total ignorance. yesterday someone told me "stop the pills, it's all just a crap shoot!"
I should have said "wouldn't it be good to fix the dice?"
I recently read Steve Jobs book. As smart as he was he decided juice fasts were preferable to chemo and it cost him his life.
Anyone have any good ideas of what to say to put people in their place without being mean? I'm so tired of this nonsense. It's why, in the beginning, I told no one about my decision making process. Tried to avoid everyone, especially after one friend, when I told her I was going for chemo said "you always go for overkill". I wanted to scream! What do they think, we're doing this because it's fun?
I just thought of something. I have to stop complaining. Maybe they can't handle it. Although it's hard to not explain why you can't go to the museum, for a walk, etc. It's hard enough for me to understand!
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Spook, I just saw your post. That's a great comeback! I'll definitely try it next time!
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Timbuktu just tell them this is your life, your choice. They can choose what ever they want to choose if the are ever faced with the same choice… and say Hi to Steve Jobs for me
But seriously there is still a lot we don't know. My onc told me there was a 40% chance I didn't need chemo or hormone therapy. But there was no way of knowing for sure. With chemo & hormone therapy that 40% became 86% (bases on 10 years). So maybe its the treatment but maybe I would have been fine anyway. Haven't won the lottery yet. This was one time I wasn't willing to risk it all.
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I dont tell many people about the se's because they have no idea what having bc is like and their advice is "oh just dont take the pills". Well for me that is a bad option. I am taking a break but have been on meds for 2 1/2 years and I will tell my dr in Jan about break however if they could tell me I could have a break once a year I think I could endure this easier. Being 67 doesnt mean you are down for the count, I was an active person before and will be after, well maybe. Thanks for telling me about the shot in the thumb, will avoid that conversation, it hurts thinking about it. I can see from reading that I may do 10 years, oh well if they are cancer free, so be it. thanks everyone
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I have had basil arthritis in my thumbs for a few years now - I was getting cortisone shots every 4-6 months and that was helping.. doctor did say he could do surgery and that would end the pain, however, just when I was considering it I was diagnosed with bc.. I haven't had a shot for about 8 mths now but since taking this med, the pain is starting back again but worse than normal.. not sure if its the meds or if its just flairing up..
Don't want to blame everything on the meds and it has only been 2 weeks so it may be too soon to blame the meds for any ache or pain I have.
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Loral, thanks for the tip about the thumb splints. I developed trigger thumb -- plus trigger finger of ring finger -- about a year into Arimidex. The left thumb is pretty bad.
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I am a believer in the thumb support, mine is more in my wrist so not same but I do wear a support thing (doc gave me years ago and I replaced it last year with one from the drug store).
I wear it to bed and it makes a huge difference.
On telling folks, I am fairly open with the fact of my diagnosis but only rarely tell folks of the side effects of the dumb PILL...I am planning on retireing next spring so that hopefully, I can enjoy a little of life? I do need to do something part time to suppliment my savings. A pal keeps pushing me to start a business...as in what the**? I want to retire to reduce my stress! The side effects of this junk sort of eliminate anything standing and the mental thing....lord, I can't remember stuff now! But something will work out, I am sure as I got through all this junk~
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The way I look at it is that if I bring up the subject of SE's I've opened the door for people to give their advice, so I'm careful who I do that with. But during chemo, when people initiated the conversation to give me advice not to have it, I just said as graciously as I could, "I'm sure you'll understand if I tell you that I just don't want to have this particular conversation."
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Spook, I also love your comeback. I am sure we would all love to take something that is natural to keep the cancer from coming back but so far I am not willing to take that chance.
I also agree that when we talk about the SE's we are opening the door for others to comment. I find out that if I don't talk about things it bothers me more. Again so happy for this site.
My brother had medulary thyroid cancer 8 years ago and we just talked about it this morning that unless someone has faced cancer they don't know how it feels when something isn't going right with your body. To hear "you shouldn't always think it is cancer" makes you want to say REALLY!!!. I really don't want to wish cancer on anybody but it is funny how when one of them gets a bad test result that requires more tests their attitude changes.
I have dermatomyositis and my skin is really bad right now. It looks like someone has punched me in both eyes and my arms have a bad rash on them. I stopped trying to cover up the red marks under the eye. Really didn't do much good. Now people ask "what is wrong with your eyes" and I just say "it is my auto immune condition" and then most of them look funny and ask if they can't do something about it. Again I want to say "I never thought of that". Have an appointment with my dermatologist next week. I got a shot about two months ago and it really helped. I guess I will just have to wait and see. By the way this is a condition that can cause cancer; however, if you go over 5 years and cancer hasn't shown up then you usually don't have a problem. When I asked the question I got "I think it is been long enough (around 10 years) and we don't think you have to worry that your condition caused the cancer". I have stopped trying to figure it out and I just make sure I have all my tests (and there are enough of them).
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Boy do I hear you! I'm 63 and God willing I hope to live. But to do what? My spirit is full of ideas, part time job, travel, etc. But at the moment i'm lucky if I can clean my house. Have to face reality. Off to the onco now...
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Just got back from onco where I got an "all clear". He answered some of my questions so I thought I'd share them with you.
l. Spironolactone (my bp med) does not cause breast cancer. It's all over the net but he said there's a lot of nonsense on the net.
2. Arrimidex does not cause diabetes. Case closed.
3. I asked about heart disease. He said that by far the greatest risk to my life is a recurrence of BC.
4. He thinks the pains are caused by arthritis and referred me to a dr. He's giving me a month off of Arrimidex to be sure that it's not the pill causing the pain.
Gee, there was more but my brain cannot retain more than that! lol
he did say that excercize will help everything.
He's quite sure of what he says but I believe in doubt.
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Tim, that is great news! we all know the web is full of junk but when the info affects us...hard not to get stressed
I brought up family history of heart disease when I was set to start rads, they blew me off but last year I saw a cardiologist, he told me I am fine....keep my BP & cholesteral in line and keep on keeping on the exercise!
and he said a glass of wine...good for us, so let me raise my glass to you!
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Awww! Thanks proud! And heres to you and everyone else on this site!
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Funny, my blood sugar was super high on Arimidex and my onc and PCP both said it was from the Arimidex and if it stayed high I'd have to go on diabetes meds - after I stopped the Arimidex my blood sugar dropped to normal within three months - didn't change my diet or exercise either.
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I was dx'd diabetic waaaaaaaay before bc. When I started Arimidex I did not notice any change in my glucose.
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Arimidex (Anastrozole) & teeth/jaw pain... I think I posted this a few weeks ago but here's the scoop.
Had a cracked tooth pulled last month, 2 more broke off when they removed the bridge!!!! I have been taking Anastrozole since the beginning of April - 3 1/2 months & for the last month I have had a lot of pain in my upper and lower jaw. Dentist thought I needed a root canal, Onc said stop the Anastrazole for 2 weeks and see if the pain went away. I was sure the pain was from the tooth and not the meds so I continued the med and got a root canal yesterday (now I need a crown to go with it). Well jerk that I am - tonite I decided to read up on anastrazole and jaw pain - guess what, it can cause jaw pain!!! I am so upset that I have just gone through all this only to still have all the pain - even worse than before. It only hurt with cold (watermelon, ice water, etc) now it hurts all the time and when I eat...this sucks...Well, I got that off my chest and now I'll go take another Vicodin and go to sleep!!! Anyone else with jaw pain!!!!!
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