For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Arrimidex was ruining my life. The pain was really something. Just walking around the house or even reading a book was painful because turning a page with my fingers hurt so! My relationship with my husband deteriorated too. If I took them at night, I'd feel the anxiety build and I couldn't sleep.
Anyway, I've been off of them for 2 weeks now and it's unbelievable. The pain is almost gone.
But what is so shocking to me is my thoughts are different. Being on it was like have PMS squared.
Now I actually feel kindness and sympathy for the human race, including my husband! It's hard to understand how chemical we are!
I was eating compulsively and gaining and gaining. Now it's gone.
I feel a whole lot calmer, maybe in part because I'm not in constant pain.
I have to start aromisin tomorrow and boy am i worried! But being on nothing is worrisome too.
I met someone at the hospital who was very happy with tamoxifin. She felt fine. That will be my last option if the aromisin isn't good.
BTW, my blood pressure has dropped since I went off of the arrimidex. I can see why they say that arrimidex does not extend life as it increased heart disease.
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Thank you all for the warm welcome! I realize I had my DX and treatment private, have changed it so hopefull it will show now.
Okay, lago, I'll call my hemotologist oncologist MO in future.
I asked MO about the soy milk, he said it was a "weak" estrogen thus okay but would object to soy suppliments. Blessings, (I love your ID) I was diagnosed with fibromyalgia in the early 90's, not as severe as some but has worsened over the last three years due challanges with husbands health and disability. I went from 135 to 155 lbs at 5'6" small frame and that didn't help. My mastecomy was outpatient with an On-Q pump (fantastic invention!) with RX for Vicodin 500-500. The pump kept the breast numb but I had a lot of axillary pain. RX instructions were 1-2 every 4-6 hours. Apparently there should have been a warning of no more then 8 per 24 hours. The safe liver dose is 3500 mg. There were a few days I did take 2 every 4 hours. Ironically, I'm aware of the dangers of acetaminophen and wanted off it asap and stopped after 6 days. November 6th I woke up very, very sick and ended up hopitalized 3 days with liver damage. The liver is a very forgiving organ and all my liver enzymes have returned to normal or close to but I lost 10 pounds. The weight loss has motivated me to loose the other 10 to minimize the SE of Arimidex. I'm also going to look into Yoga and other local programs available free to BC patients that exist in the Phoenix area.
I've often been told that I'm a very strong person. Strength will be my mantra.
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9redheadaz my husband's endocrinologist name is Dr. Hor. I think it's pronounced "Hoe". Not sure if that's any better. Yes she is Asian I believe Chinese… in that context is sound quite normal but I did get a laugh when my husband first told me her name.
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lago they need a 'like' button here! LOL.
Welcome 9redheadaz. You found a great place to gain a lot of really good information. Plus having fun helps too. Humor is my lifesaver I swear. I can complain, but feel lots better when I laugh! It sounds like you have been through a lot and hopefully now things will smooth out for you. Awesome about the weight loss!
I forgot to mention hair loss. Mine is bad, hair is thinning terribly. I am not amused one bit about this. I have been taking biotin for well over a year. It grows fast, it just falls out equally fast.
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I too have almost no side effects and I take either Arimidex or Anastrozole - whatever the pharmacy has. I get it for free as a CA patient- that's the law here. I started in July and I really don't see a difference between them, but then, maybe I can't because I keep on switching. My only problem is stiff knees sometimes, and it's so slight. I guess I am one of the lucky ones, and I sure hope it'll continue. I do get hot flashes, but not too often and they pass quickly. Not too different from Tamoxifen that I took for 5 years. I do have issues with osteoporosis, and next month I am due for my bi-annual bone density test. My feeling is that it is probably getting worse. My mom also had osteoporosis but she never broke anything thank G-d! Mine is probably inherited coupled with early menopause thanks to CA. I love cottage cheese which I eat every day but I am not a milk drinker. And i hate my calcium+D pills because they are so huge. Still better than all those horrible SEs so many people have.
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dassi--I, too, was unhappy with the size/swallow factor for the calcium... and then discovered "gummy" calcium/vit d3. They are a wonderful alternative! A little more expensive, but worth conquering my resentment of here-i-go-again with the monster pills. Might be worth a try.
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dassi52 - Before I was taken off all my meds (medically-supervised weight loss program) I got my calcium through chocolate chews. (There are many different brands.) They were sooo good, I didn't mind taking them at all!
Now that I'm cleared to take vitamins and supplements again, I'll have to find some more and check out the other ingredients.
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I use the Viactiv calcium chews (plus vitamin D). I like them because they are like eating candy (which I like very much!). 20 calories per chew. Directions say to take two a day, but I take 3 (which my doctor knows about), plus get in two servings of dairy a day. My vitamin D is nice and high and my bone density stayed in the normal range (also eat a serving of prunes every day and do weight bearing exercises like crazy).
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Thanks everyone for your ideas. Well, first I got to see what's available in Israel, but that would not be a bad idea to chew something nice as long as it's low on calories. Chocolate drfinitely sounds yummie! I just might want to overdose on that:)
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janis...I can sympathize about the hair thinning....I am at my wits end. I am going to get 10 months worth of hair hacked off this week. I am wondering about colouring it again. I swore I wouldn't because at some point dyed hair has to end. I am 69 and thought gray hair was OK and I kind of like it but it's the texture that is weird. Other than that, Armidex has been kind to me...hopefully my bones as well!
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Does anyone here take Claritin for joint pain? I have been taking it and it helps me keep moving. I read on one of the boards that this is good for joint pain. I forgot to take it yesterday and my left knee is killing me this morning. I haven't started the prunes yet (forgot about them) but I love them so it shouldn't be a problem. I am having my first bone density scan on 12/20. I have never had one.
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bethu...yup I took Claritin for months but the MO said he wasn't too pleased. My joint pain finally went away so I stopped Claritin but if it starts again, I will take it again!
Good luck for the DEXA
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DEXAs do not hurt, AND you get to leave your clothes on
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Hi Ruthbru, when you say "prunes" you are referring to the dried ones, right?
Mena
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Undried prunes are called plums
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I was on Arimedex for about 3 months. Stiff, aches, the difficulties bending, getting out of bed started at 2 mos. MO had me go off for 2 weeks and then put me on Aromasin. It's been 2 weeks. Ok first week, now my hands are doing the numbness on and off at night, hands seem a bit puffy, soles of feet hurt,hit flashes (didn't ave with Arimedex) general achiness returning. I am furious.
I had no expectation of problems. My sister did tamoxifen and Aromasin with very few issues.
I see my MO in 2 weeks. Arimedex didn't have the hand SEs. I guess I'll see how they go for 2 more weeks. Now that I know that many people have the SEs (50%he said) maybe I'll switch back.. Rather have achiness just in body and have hands OK. Sigh....now I am feeling very discouraged. Only started these AIs July 20! 4 mos!!0 -
Is anyone taking Arimidex with a low ER+ percentage.....like 1% for instance???
I am seriously thinking of getting off it because of hair thinning...other than the loss of bone density, I have had few SEs but really...male pattern baldness???? Gimme a break!
At what percentage would an Al really help? My MO is insistant that I continue...I am really confused as to what to do. Bet he would hate to be bald for a lousy 1% .
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Wow Schatzi--your ER staining was only 1%??? What did your oncotype tell you? My staining was 100% for both est.& prog. -- maybe it has more to do with beig Grade 3 than the tumor staining??
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I didn't have oncotype testing because I was node positive and for sure needed chemo. Yeah the grade 3 could be the reason. I am about ready to play the odds! just one little microcell in one node...jeeze.
Talk about frustration.
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schatzi14 I'm only 30% ER and 5% PR. From what my understanding of being hormone positive is you can't be a little bit pregnant. If you have cancer cells fueled by hormones you want to starve them even it it's only 5%.
That said I'm not sure if they consider 1% as postive. Are you sure you're not 10%?
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lago...looked at my path report this morning...it says ER+...> 1%..PR- < 1% My MO said I was 5% but he didn't have my path report when he said it.
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It is probably because you are grade 3 and it was in a node; you know the horse was out of the barn. Ask the doctor for the risk reduction percentages for your own particular case. That might give you a clearer picture of what to do. For me, anti-hormonals gave me a 40% risk reduction (the chemo I did was half that, 20% risk reduction). So to me, it was HUGE to be able to take it.
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The talk of percentages is like playing the odds....it's all numbers. I could see taking Al's for 2 yrs maybe, but I dunno about anything after that. I guess I should be grateful my SEs are slight. Not even too worried about the bones more the hair loss. My MO won't talk percentages. He just quotes studies.
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schatzi my chance of getting breast cancer at my age of diagnosis with all my "known" risk factor was less than 2%. I'm not saying you should or shouldn't continue with AI's but if your SE are minimal I would give serious thought to continuing.
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i'd be happier with 2% like yours is Lago but i'll be fine with my 8%. there was no logical reason to have chemo which would bring it down to 4%, not since Oncotype was 12.
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Galsal you misunderstood. My chances of getting it in the first place was less than 2%.
With all the treatment I did my chances of being NED and alive in 10 years post treatment is 84% (14% chance of recurrence)
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I get it! How long have you been doing it- oh, since March?? wow. 9 mos. What confuses me is they say that it can not only stop tumors from forming but also eliminate (starve) any that do show up. Question: is that assuming it would for sure be an estrogen-positive tumor?? I just wish I could find something that I can ignore for 5 years more or less. Do SEs ever subside as you go along? 2 weeks till I see my doc.
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ahhh, I did misunderstand. thanks. i get it now. have a 92% chance myself, for which I feel blessed.
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Lisa this is only for hormone positive.Triple negative and HER2+/hormone negative do not get this therapy. It's in-effective on their tumors.
From what I have observed, once you pass 3 months or so your SE are what they are. It's not like the drug keeps building up in your system. The problem though is the SE might increase as you naturally would produce less estrogen as you age. I don't think the AIs can block all of it.
Also if your hair does thin it won't do it all at once. So it might seem like its getting worse but it's only because the new hair doesn't grow back. But this is all my observation.
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Hi Iago- thanks for checking in with me. My original little bad boy tumor was 30% estrogen positive. I know the AIs are for folks like me. (have a cousin with triple negative) I just wondered if you only gained protective benefits for estrogen positive new or mets from the first one. What if I got another tumor that was triple negative? Well, a lot of it seems like voodoo and playing the odds, we just have to hope. Talk to my sister today, I realized that I was discouraged because I thought after all the chemo and 3 surgeries in 10 mos I was DONE feeling bad for a while! With crummy sleep, stiff back and hands, aches and pains, etc, plus some stomach SEs (thanks for prevacid!) these AIs are turning out to be a project I neither expected nor wanted.
I'd much rather be in the 50% that my doc says do fine! I'll see how I do over the next 2 weeks before I see him. And Ativan was very helpful today....thanks to you ladies, it's great how we can say to each other what I at least have a hard time saying to others.
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