For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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B123,
Sorry about your osteoporosis. I would also be upset about that at your age. I have only been on Arimidex for 4 months.
I had a IV infusion of Zometa in April. My dexa scan was normal. I asked to get 2 infusions a year for 3 years. The San Antonio Breast Cancer Symposium wrote a report ( Jan. 28, 2014 ) that stated it gave us another 3% survival for ladies with ER + cancer.
My MO said it was not standard protocol yet. But she approved it. It is not uncommon, lots of ladies are getting this. The report is on this website, you can do a search on it, in the articles section.
I have never heard of Fareston....
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B123 yes BMD you described me to a tee only I was diagnosed with the osteoporosis at 52 (which is still too young). I'm still waiting for them to schedule my infusion of Prolia but I did try Fosamx first. It gave me heartburn. I would ask your MD why infusion and not one of the orals? Granted Reclast is supposed to help with preventing bone mets so maybe that's why.
I'm doing Prolia because they will only infuse Reclast in my arm. I have LE in one and other at risk. Prolia is a 2X a year shot I think in the tummy for me. We did go through hell getting my insurance to approve though.
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B123, I have never heard of Farestan either. I was scared of osteoperosis, so MO changed me to Tomozofin. I am so much happier.
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Isn't Fareston only for post menopausal women with metastatic breast cancer?
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hi Lago, so you were not able to take the fusion doss max because of your LE? No other SE from it? My NO would rather not do reclassified because it's 2x a year rather then 1x. But not sure if they carry it anymore.. Still checking.
Stage 1 and checkers.. Fareston is a sub for tamoxifen, it is less the Cy ... That tamoxifen carrys and some can not tolerate. It has been out since 1995.
My thought is if I continue on arimidex then how can an infusion help? And what if something more happens to me from it? Kidney failure, other bone issues? I would love to take an injection like the prolia!!
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My MO offered me Zometa. I don't know why as I am osteopenia, not osteoporosis. I refused Zometa....going on Tamox, I felt that would protect me from further bone loss.
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B123 The place I go to said they only infuse in the arm. Their nurses don't do it in the foot. Personally I think I would feel better about Reclast but Reclast and Prolia both are a form of Zometa I believe. But just because Prolia may "build bone" it doesn't mean it's building good bone. We are both right over the border. Hopefully by the time you're my age they will have something better for us. BTW I forgot. Where are you in MA. I'm headed "home" to visit my parents next month down the Cape.
My onc really doesn't like Tamoxifen. She seems to use it if there isn't any other option.
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Called the MO about the nausea---nurse spoke to him and said I could try a couple of things---
a prescription for compazine-I don't really like to take meds in the first place OR
go off the drug for 2 weeks and see if I feel better---that way we know its the drug....DUHHHH
Told the nurse since I haven't hurled, I'd try to tough it out. and If I did need the pill, id let them know.
Now my one ear is burning.....intermittently.....
Maybe I should scarf something down at 9:00 when I take my pill..
Lago--I think my Onc has the same attitude about the Tamoxifin. That study that came out about the AI being better really convinced him......
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Hi everyone,
This is my first time on this site, so please excuse me if I am asking questions that have already been asked or discussed. It has been a little over a month since I was diagnosed, so I'm still trying to absorb everything! Fortunately, I live 15 mins from MD Anderson in Houston and have qualified for a phase 3 trial study. My team of doctors seem to think that I will respond positively to my treatment plan, but reading about the side effects makes me really nervous/scared. One of the meds that I am taking is Anastrozole, and of course I'm hoping and praying that I don't have to deal with SEs, but my question is - for those that did experience them, how long did it take before they (SEs) started? I began treatment yesterday.
Thanks so much!
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I found a couple interesting things. Here's a link to some study results for an AI.
http://bcaction.org/wp-content/uploads/2011/03/AI-...
I've been having some bladder discomfort and I have to go ALL the time. Just started a week ago. I did a little research and apparently the bladder wall can thing and cause those issues. I'm going to call my urologist tomorrow just to have a chat.
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REadhead don't wait to take the pill for nausea. It's much hard to get rid of once you start hurling. Once you start hurling you will get dehydrated and your throat could burn. I didn't take drugs either before chmeo. You'll get off this stuff when you're done. Right now the only drugs I take is my ESD (estrogen sucking drug) and a small amount of diuretic. SO TAKE THE PILL
Aida101 the first 3 months I had no SE (side effects ). Then after that for about a year my fingers, toes and legs were stiff in the morning for about a minute or stiff if I had sat in a chair for an hour or more. Would shake out once I started moving again. I didn't have depression issues till about year 3. Now I'm on a different drug in the same class. So far no issues. Most people have very minor issues. Just try it. If you have problems there are other drugs they can try.
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Sounds kinda like a bladder infection, Fluffqueen. Of course our aging bladders get cranky in a number of ways, so it's great that you have a urologist to, well, confirm that your bladder is getting on in years. Believe me, I have my own issues there, so I greatly emphasize.
Welcome, Aida, and any other newbies. I don't recall when symptoms started, but the process was very, very slow, so it took a while before i even noticed. I'm at the end of a two-week drug onc-approved drug holiday. "Happened" to see my PCP a few days ago, and he thinks I should take four weeks. Me too! The drug as a 50-hour half life, so there's probably just a teeny bit in my system, and I have so much energy. I need another week or so to see if this is truly an un-drug response.
Those of you who've taken a few weeks off, how long before you figured you were about as normal as you were gonna get?
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Lago, I'm in the metrowest area, wayland!
Did you grow up in the cape?? So nice there..
I wonder if I can fight for prolia? I don't want Ivs I feel like it's going to cause more harm then good?! I am also going to ask to go on Fareston again. No SE and no bone loss.. I just hope it's safe enough as the arimidex!? Glad to hear your MO doesn't like Tamoxifen, seems like everyone wants us to go that route as first choice?? Hated it!!
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Glad I found a thread on Arimidex.IT'S UNBEARABLE! I'm quitting it. Literally I'm hunched over and can bearly move. With adding in cerebral palsy, a fulltime job, and being a single mom, I can't keep taking this. My mobility is GREATLY affected. I went to the ONC and they mentioned switching to Tamoxifen.
My fear is that Tamoxifen isn't as effective. Onc's response was "Well, you can't keep going like you are now." She's right, but that doesn't change the fear.
Has anyone else had to stop taking Arimidex due to pain?
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Aida, My SE's started right away. My BMX was Jan. 7 and my exchange 3/24/14. I started AI's right away but can no longer take them. The stiffness and pain is overwhelming. It got to where I couldn't even get out of bed. I had to roll off the bed and fall on the floor. I tried climbing a ladder to get into our backyard pool the other day and couldn't lift my legs to go to the 3rd step. The onc asked if I needed a wheelchair to go from the office down to where my car would be brought.I do have cerebral palsy to begin with, so I'm sure that's a factor, but this is ridiculous. My advice. DON'T WAIT TO TELL THE ONC. WHEN YOU'RE HAVING SYMPTOMS. Mine flat out said " Why did you wait this long ! Don't do that." So let them know when you start feeling your symptoms.
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B123 I grew up in Randolph… not as nice at the Cape but so close to Boston. The way insurance works is you really have to try one of the pills first. I had heart burn so the next step would be Reclast but I didn't want to use my at risk arm and the other arm has LE so I had a reason to go straight to Prolia. Thing is we are just over the border so the pills would be best. The thought is the pills slow down the break down of bone. Some people actually build bone because the thought is when the pill slows down breakdown it gives the building a chance to build. Hope that makes sense. That's how it was explained to me. I really wish Fosamax didn't give me heartburn or I would stay on it.
TessaW I am taking Generic Aromasin now. It's been a few weeks and so far better but initially I didn't have too many problems on Anastrozole. It took a few years. Tamoxifen is effective just not quite as effective. Ask your MO to tell you what the stats are.
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Aida it been since Sept for me and no SE. Each of us is different, so take it as it comes.
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Aida, I just started Anastrozole three weeks ago. I had a mild hot flash about a week ago. Since I haven't had one in about 4 years, I assume the Anastrozole caused it. That's it so far though. I know it's early but I'm hopeful!
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Lago, yes makes sense.. Unfortunately.. I was told by my MO that the pills cause heartburn and fosomax has no SE? I don't know now? You took the pill form of fosomax? You say you switched from arimidex to aromasin? What's the difference? Do you feel better on it and does it not effect bone loss?
Yes we seem to be borderline, thank god but this arimidex will keep taking it away..
TessaW I feel with you my friend and understand.. Have they mentioned Fareston to you? It's equivalent to tamoxifen but less SE. I'm not sure why there is no generic so maybe why it's not up there on the list?
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Thanks so much, everyone! Your input really helped at calming my nerves. I'm so glad I found this site, family and friends are great at offering love and support; but it really makes a difference when you hear/read it from others that have (or are currently) going through the same experience!
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B123 I think you are mixing up Fosamax with Femara. Fosamax is a the pill I took for a month for my osteoporosis. Yes it gave me heartburn (as I knew it would) but I had to "prove it" to the insurance company so I could go onto an injectable. Many women stay on Fosamax and take something for the heartburn and do just fine.
Femara is one of the aromatase inhibitors. I have not taken that.
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B123, just wondering why you hated tomoxfin? I am doing okay on it. Maybe I missed a post.
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stage 1 it made me feel irritable, moody, and stomach irritation, I honestly did not wait to long to see if it subsided., I just refused to go on it again.
I wish it worked for me.. But Fareston did, it was easy.. But I'm told that they don't have a long term outlook at how well it works since it's only about 20yrs old.
Lago, you mentioned aromasin? That is what I was asking about not femera? Sorry., I type fast at work and I don't make sense sometimes.. Lol
I just don't understand how one can go on arimidex post men knowing that it causes bone loss? Then to have to take an infusion for the bone lost, to then lose more and do it again?? It's crazy to me? There has to be another med that works besides tamoxifen? Sigh..,.
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B123 Actually there isn't another med that doesn't have risk. It's much easier to treat Osteoporosis than it is Metastatic Cancer. You have to look at the risk/benefit. All drugs have SE. You'll live longer with osteoporosis than you will with metastatic cancer.
And yes I am now on the generic form of Aromasin. It has side effects too but many women find it's not as bad. It still sucks the estrogen out of you so I'm sure I'll still have the osteoporosis get worse if I don't treat it. So far though I feel much better on it than I did on theis last year of Anastrozole but it's still soon. I been on it almost 2 weeks.
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B123, we also all react differently to the meds. I'm post-meno and have been on Arimidex for 5-1/2 years with no bone loss. I've had minor SE's, currently my right thumb is trying to trigger but I'm exercising and massaging it often. Had almost gotten carpal tunnel in same hand but wrist splints 24/7 then only at night resolved that and I no longer need them. There's just no way to tell what, if any, SE's we will experience individually.
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Aida - welcome to another MDA in Houston! I've actually had all my treatment at the regional center in the Woodlands north of town. I haven't posted much on this site but read it since I started Arimidex (generic) on June 1. I take it first thing in the morning and the first three nights, woke up at about 3:00 for an hour or so (which isn't entirely unusual for me) but since then I haven't had any problems or noticed any SE. I've started running (very slow, worked up to 2-1/2 miles, 3 times a week) after I read the article about exercising helping with aches and pains. Sure hope I'm like some of the other ladies (thanks, Patoo, for your good report!) with no SE for years and years!
Good luck -
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Lago I know your right, no doubt! But it still stinks! Thank you for tha perspective!
Patoo, how do you have no bone loss?? That's amazing, good for you!! I am walking all day and run 2x/week, I just don't get it?
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B123 some of us are more prone to osteoporosis. I know I would get it because my mother had it, I was osteopenic even before chemo (had my onc test me because I was worried), I have a small frame, I'm Caucasian, low D, etc. link. I even exercise but I'm sure if I didn't do all that I do the bone lose would have been worse.
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I got through the 5 years with no bad SEs, and without bone lose which I contribute to good genes and the combination of lots and lots of weight bearing exercise, eating at least 2 servings of dairy a day, taking calcium plus vitamin D supplements, and eating a serving of prunes (which build bones) every day. You can't do anything about the genes, but you can about the rest of the stuff.
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B123, I grew up in Wellesley......
Lago, where on the Cape do your parents live? We went there every year from the time I was a baby until just a few years ago. Now we go to RI because we used to live there and actually prefer the Narragansett area to the Cape since it is so overpopulated now
Martha
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