Does Arimidex prevent mets at all?
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Fearless_One Early stage is stage I, II up to stage IIIA so yes you are early stage.
Also remember that 50% reduction for means different things depending on the individual. It's 50% of your actual risk. So if you have a 20% chance of the cancer returning then Arimidex will reduce it by 10%.
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From what I have been reading about the stats, it seems that Arimidex is quite effective in preventing recurrence and think it is wise to use it unless their are medical contra-indications such as history of blood clots, or the side effects make QOL very bad. The question is, how do we know if it is effective for us personally? Can they test for the effectiveness? My family doctor, who has a background in endocrinology, said that Arimidex does not work for everyone, it depends on your estrogen receptors. I have read that experiencing side effects is a sign that it is working, but many people, including me, do not experience much in the way of SEs.
I will my med onc when I see him next month about testing for the effectivenss of Arimidex, but in the meantime, does anyone here know about that?
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The nurse at my onc office said that when you are having SE then they know it is working, the women that don't have any SE they are not sure.
Nancy
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Interesting! My side effects are lack of libido and depression. I have no pain (from the Arimidex). Does that mean it's not working if I have no bone/joint pain? I will have to talk to onc about this.
What do they consider significant side effects?
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Nancy, it is wonderful that you have an oncologist that gave you absolute risk statistics. That would mean to me he/she is trustworthy and didn't have to stoop to relative risk statistic manipulation to push you into it. Good for you!
I wish there was a way to tell from a piece of the tumor exactly which drugs/supplements, etc., help which people. I wonder if that's in the research pipeline.
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Fearless I too have read they do feel it is working if you have SE but I have not read anything that says if you aren't having SE that it isn't working. I would think if that were the case they wouldn't keep women on the drugs for 5 years if it wasn't going to work… nor would the insurance companies be willing to pay for it. Right now they just don't know because there is no test to tell if you are a good metabolizer.0
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Chemo is meant to kill whatever cancer cells may have escaped into your system. Once you are done with chemo; it's job is done. Either it had worked or it hasn't. Anti-hormonals are the biggest guns in an estrogen positive woman's ongoing fight against recurrence.
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Um, I don't think that oncs are "stooping to relative risk statistic manipulation" to "push" their patients into anything.
Instead, I think they don't typically know off the top of their heads exactly what the risk of recurrence is for each of their patients. It varies for each patient based on their age, tumor size, tumor grade, lymph node involvement, receptors, therapy etc. Oncs go over all this on their first consultation with us - and then move on to the details of treatment. When we go back to them with questions about how hormonal therapy will affect our recurrence risk, it's quicker and easier for them to tell us that it reduces it by 50 percent (or by half) than figure out what exactly that is. If you push for it, they can and should figure it out for you.
Rather than confuse everyone with "absolute" vs. "relative" risk terminology, just ask the doc...how many women out of 100 who have a cancer/treatment history like mine will this help? You could also figure this out for yourself using Adjuvant Online.0 -
According to adjuvant online I would not get any benefits from AI after oophorectomy. I had 25% chance of reccurence without TX,went down to 16% with chemo and then to 8% after oophorectomy. Oophorectomy plus HT my percentage stayed at 8%. I got prescription for Femara which I did not start yet, just had my surgery 10 days ago. I am seeing my onc on Tuesday and ask him about that.
My spelling check is not working, sorry.
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I hate dereailing this topic but not sure where to put this. It seems that many of the ladies here are taking vitamin D. I have been taking 2,000 IU a day for the last year. Not because I tested low but, due to the region I'm in I know we tend to be lacking in vitamin D. Everyone I know who has been tested has been dreadfully low...is it better to go see the doctor, get officially tested? I know some of my friends who ended up just taking supplements and others who ended up getting shots at their doctors.
I guess I'm wondering where do you fall? Are you getting shots for it? Just taking Nature Care vitamins D3? Or whatever the store bought vitamin D is?
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Emaline.....I elected not to do shots for low Vit D. 10,000 IUs daily for about three months worked wonders for me. I buy whatever is on sale. I now need 3000-4000 daily.
My Vit D level is now somewhere around 60 which is where it needs to be.
As for the original question, it's really about improving my overall chances of being here for the long term. I exercise and eat real food. My libido is just fine BTW. I hope to never know if anastrazole works or not, because I would only know if I got mets.
I do know that one of my friends would be DEAD if she didn't take it. Stage IV held in check with hormonal therapy.
Statistically, my chances of being her in 10 years time are something like 75% if I don't take anastrazole vs 85% if I do. (I am using round numbers here.) You don't have to ask me twice to take it. (Or to exercise, as almost as important.) I intend to complete the five years. - Claire
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I had Stage 1 breast cancer and my onco score was 9. I had a lumpectomy, rads and Tamoxifen. After 4 years I had a recurrence to the same breast. All the experts said I only had a 6% chance of getting it back after the first time but it happened to me. I eat and live healthy and never felt sick before either diagnosis. I had a bilateral mastectomy and I'm taking Armidex now and hope it works better than the Tamoxifen did. I also took the test while on Tamoxifen to make sure I was metabolizing it properly and I was. My doctors tell me I still have a good prognosis but I will never feel comfortable again. Breast cancer can come back on any of us at any time no matter what we do. I wish they would figure out what is causing it. Also, have any of you heard about a new vacine that is supposed to prevent women from ever getting BC?
Thanks,
Nancy
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LittleMelons - I've heard that AIs are more effective for some types of cancer than others. I don't have all the details but am sure your MO will be able to tell you how this relates to your situation.
There are many variables that come into play. One of them is the strength of ER+. Did your pathology report include a % score for ER+? I think the higher % ER+ you are, the more effective they are. But, that's just one of many factors that all need to be considered together.
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I read an article stating that side effects are not an indicator of whether or not the AI is working, I'll see if I can find that link again. So even if you have no side effects it's still working.
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LindaKR here are a few that state that no SE doesn't mean it isn't working… in general Arimidex/Anastrozole seems to have fewer SE that Tamoxifen*.
http://www.chemocare.com/bio/arimidex.asp
http://breast-cancer.emedtv.com/arimidex/arimidex-side-effects.html* one of many sources. See comments at bottom of page
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Thanks once again, ladies, for all this great information.
GabbyCal - Yes, my pathology reports states ER+ 100%, PR+ 50%. And from what Beeb75 was saying about progesterone positivity, the anti-hormone therapy should be very effective. Let's hope.
"There is no relationship between the presence or severity of side effects and the effectiveness of Arimidex." Thanks, lago, this statement in the link you provided was very reassuring.
As Illinois Nancy points out, stats don't predict what will happen with individuals, so the challenge is to learn to live well with the uncertainty.
Illinois Nancy - I have read your story. It sounds like you have an excellent BS and medical team. I'm sure you will be monitored like a hawk now and will get very good care. All the best and hope you are feeling better.
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Gabby, good point - my ER & PR numbers with both "3+" which I believe is the highest possible score (I think 3 = 95% or something like that); can anyone confirm this?
Claire, very interesting you have no libido loss. Mine is shot. I am only 46 and having no libido is very depressing.
Also, how long has your stage IV friend been on Arimidex?
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Fearless..... I am not sure about my friend. She was found to have lung mets about 12 years ago when she went in to have her feet fixed. So lung surgery, and then tamoxifen.
With tamoxifen, the remaining tumors shrank and she has been NED for at least 10 years. (She was not initially given hormonal therapy.) Her bloodwork is normal too. Tammi gave her major joint pain and major hot flashes. I am not sure when she switched over to Arimidex, but think roughly 5-6 years ago. She finds it so much easier on her body.
She will need to take some sort of AI for the rest of her life.
But a dramatic example supporting the value of hormonal therapy.
Funny story with the "no libido loss". During radiation, I would use that post O calm as a way to lie perfectly still while they zapped me. So I would take myself there mentally. But a couple of times, this backfired and I had to lie there when I was climbing the walls from horniness.
And it wasn't like I wasn't getting "action" either. Good luck on that one Fearless. I think that exercise has been what made the difference in my case. Also that my bone density is still normal.
Good luck with this one. I think that those of us who were post menopausal when starting down this road have an easier time of things. But on the other hand, perimenopause is no bargain either. Just wanted to point that one out. Much easier when hormones don't spike and then tank on a monthly basis. - Claire
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I don't know if it's worse if your're peri. I was peri when I started. Had my last period 2 weeks prior to chemo in mid Sept. Can't say my libido changes with chemo. Did have some pain but that's all gone. I might be done with hot flashes too. They seem to go away slowly after chemo even though I started Anastrozole March 1st. My sister has been having an issue with hot flashes for over a year and she's doesn't have breast cancer… just plain old menopause. Go figure.
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I am not getting any "action", either, but I still have no drive. Maybe if I had some drive I would be more inclined to want to date, lol! I jest, but it is rather depressing. But beats getting cancer again.
Does the libido ever come back? Maybe after our bodies adjust to being on the drug?
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Or maybe it's just because I have a hot DH. Sounds like you need some eye candy Fearless
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Lago, good point! It's been awhile since I have met anyone, so maybe if I met someone I was very attracted to, I would feel more.
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Iago (or is it Lago, sorry) Thanks for the links I knew I'd seen the info somewhere. I don't have hot flashs, and my libido is ok (except a lot of the time I am too tired or in too much pain), my issue with all three AI's has been pain. I've been on Aromasin for about a month now, and the pain may be a little less, or maybe it's just wishful thinking because my onc wants me to try tamoxifen next, and I don't want to because it's not quite as effective and I don't like the risk of blood clots.
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Linda from what I read Als are only slightly more effective than Tamoxifen… but they are still investigating. I'm not sure if it's even statistically significant. Is your onc going to put you on baby aspirin to prevent blood clots?
It's Lago with a small "l" everyone gets confused. I'm not into Shakespeare
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Thanks Lago for the info on the baby aspirin, some one else had mentioned that to me recently. I see my onc in a couple of weeks and we talk about it again - it will also be my last herceptin. I read your post about it giving you nosebleeds, I've had them ever since I started, thought it was the chemo, but I've still been having them, though not as frequently, nice to know that it may be the herceptin, so maybe they will go away soon. Also, have headaches from it.
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I guess one thing that bothers me is it's effects are not measurable. I mean, when you take meds for any other illness - diabetes, high blood pressure, whatever - you can measure it's effects on the body, on whether it is working or not. With Arimidex, we are just putting our trust in a few studies (or was it just the one?) - which were done (if I am not mistaken), by the pharm company.
I am continuing taking them, but just kind of leary about it.
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Fearless- I just had this conversation with my MO. She tried to explain that even hormone testing isn't needed often. She said, "it doesn't matter how much we lower the estrogen, we consider it enough, we don't know whether low, medium or higher levels make a difference." She even admitted that she wished there was more scientific proof that she could provide me (bloodtests etc) but they are to a great degree going on "belief". Doesn't give me a lot of confidence, I don't like being a guinea pig...especially when there are significant SE. By this time, shouldn't there be absolute scientific proof that a certain dosage reduces estrogen a certain amount that is optimal for BC reduction, but not too much so it causes heart and other SE?
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DesignerMom, exactly. I would hate to beat cancer only to drop dead of a heart attack, but at the same time - I would RATHER have the heart attack than death by cancer. But still - there are indeed serious side effects and seems to be a lack of studies on the efficacy of this drug.
I will discuss more with my onc when I see her. But I don't want to take any chances, so I continue with the meds.
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There is plenty of evidence that ALs do significantly help. Our doctors wouldn't prescribe and insurance certainly wouldn't pay for them if there was no evidence… what they can't tell us is if they will specifically work for us as an individual. They don't have all the answers for breast cancer. Given the information I'm taking them. Also not everyone gets these SE. So far I have no SE from what I can tell. I don't even have hot flashes anymore. My bones are being watched. I never had heart problems and my 73 YO mom doesn't either. Dad didn't develop issues till he was 70. I think I'm going to be OK on this drug. (Anastrozole since March 1st).
Granted I will admit they may find some issue with it in the future, but then again they may not. This the best information we have to date and it says that it helps.
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I question that there is "plenty of evidence". I have only seen one published study (supported by Astra Zeneca), but then again, I am not a medical professional. I will discuss it further with my onc; for now I continue to take it.
Lago, how long have you been on it? When did your flashes go away? I never sleep anymore. I just lay in bed and sweat.
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