Arimidex 5 years or longer
I would like some input about the aromatase inhibitors and the length of prescription.
Yesterday was an awful day. My oncologist told me that I was now five years on Arimidex and the study on Arimidex had only gone on for a five year period of time so there are no more reviews as to whether continue using Arimidex after the five year time period.
I have had Breast Cancer two times. A primary tumor in each breast 11 years apart. 1992 and 2003. I had an estrogen receptor postitive tomour both times. So this drug Arimidex has knocked down a percentage of the estrogen and now the DR. wants to take me off the drug. One reason was osteoporosis. I take Fosamax and have for many years.
I am in the prime age for breast cancer, I have had breast cancer twice, I am estrogen positive and for the life of me I cannot understand why in the world the woman would take me off a drug that can help me.
All she said was that the study was done for only five years. And she would not give me a prescription for the Arimidex. I am lost. I was so upset and still am. I feel like hope was taken from me. What if this drug could save me from getting another tumor?
Do any of you have experience with what I am talking about??? Thanks.
Comments
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To emanresu who wrote:
I cannot understand why in the world the woman would take me off a drug that can help me.
I do understand your distress, of course. You feel that Arimidex has been helping you for 5 years, so naturally, you would rather keep that protection. However, the reason why the doctor took you off it is that she is really concerned about possible and potentially serious and yet still unknown side-effects from that powerful medicine. Not to mention that it is not believed to be able to protect you beyond these 5 years. Your doctor is probably trying to prevent it from actually turning on you at this point.
But you are hardly helpless: according to many studies, exercise and diet play a bigger part in preventing recurrences than most medicine. If you have already been taking care of that aspect of the problem, just keep on giving your body all of the nutrients and supplements it needs to remain strong and healthy, and you should be OK: from a statistical point of view, your risk drops dramatically at the 5 years line, so you are (statistically speaking) in good shape right now. Hang on.
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Arimidex 5 years more
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Hi I maybe i can help here. I finished my 5 years of threatment mostly of arimedex/femara and was told that was it. i gathered my information and presented my case to another dr. all my bone dnesity blood work is good. I was well informed and I got to stay on Femata until there are ome results of this clinical trials.The latests MA17r clinical trial looking at exteded adjuvant therapy with femara. i was offered a spot on the trial but because it was double randomized which meant i had a 50% of NOT being on Femara I went this other route.good luck in finding someone who willlisten to you.
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I am at the five year mark and have similar anxiety. Although I am also very concerned with how my body is reacting to the drug. Is there anyone who has experienced jitteriness, weight gain, hair loss? Do you find you are a bit more paranoid about life?? Are your feet deteriorating? I am an avid cross country skier and biker but I still seem to be off balance. I would love to hear your thoughts.
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Hi CBorden. I have only been on Arimidex for about 3 months and I even cut the pill. I now take it every other day because I just can't do it. Definite hair loss, swollen joints, no sleep (unless I take a sleep aid). I thought I was acclimating, but I'm not sure that I am. I hate to even talk like this, because I keep thinking it is my imagination. I don't think so, but I am going to stay on it until I see my med. onc on January 29.
e
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hi
i took arimidex for 5 and half years. i was stage 3c with 10 positive lymph nodes but 100 % ER positive. my oncologist pretty much told me the same thing; 5 years is all they know. she gave me the choice to stay on it which i did for 6 more months...but then decided i was sick of the side effects.(joint aches and pains, hair loss, no sex drive, etc) my bones are good; i did take fosamax during the arimidex treatment but am off the fosamax now. i am glad i stayed on it for an additional 6 months but ready to get off it when i did. I would suggest you get a second opinion and see what other oncologists say. but, because this is such a new drug; no one really knows long term effects and it makes sense they want to limit it to 5 years. hang in there and look for other information on current studies and maybe get a second opionion.. hang in there.
diana
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I asked my oncologist last spring if I could continue on aromasin beyond 5 years. He said no, I had had enough and walked out the door. I went to another oncologist for a second opinion and he said of course I could continue. If you check the web, there are several studies going on specifically about continuing AIs for ten years. The current study is a double blind study and I did not want to take the chance of getting the placebo. Recurrences for estrogen positive cancer is higher after five years than before five years. My oncologist said that taking AIs for five years will give protection for three more years. Research may show that being on AIs for ten years will give five more years of protection for a total of 15 years. My ex-oncologist is a member of a large treating group that is part of US Oncology. The oncologist I see now is in a privately owned practice and they do not have to please the corporate bosses or worry about the bottom line and pleasing insurance companies. I have had all the side effects which did lessen after three years. I have thinning hair, still aches and pains that come and go and I am estrogen depleted. But for me, this is what I want to do. I hope you can find an oncologist willing to prescribe an AI for you if you want to continue beyond five years. You must be your own advocate. This article discusses some of the studies and I think there were some updates at the San Antonio Symposium for Breast Cancer in December. http://jco.ascopubs.org/cgi/content/full/25/19/26390
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wow am I glad i found this post. i am supposed ot come off arimidex next month as i'm at 5 year treatment mark. i was 38 at diagnosis had ovaries removed and used arimidex as a first line therapy...never had tamoxifen. my onc told me the 5 year is a made up # but he also offered me the trial. 50% chance placebo.
i'm 44 years old...i hope to have lots of years left but that also means lots of years/chances of recurrence. I read some of the preliminary data for the 10 yr trial. The data is looking so encouraging as to preventing recurrence even more that they actually stated that in a few year putting women on placebo will be considered unethical. I have this printed out (from Mrs
and ready to go in with.i also have 100% bone density, am very active and fit. i will let you know what onc says.
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hi svlove and carmelle. Wow- you are strong, strong, women. I am having such a hard time with the Arimidex.
Svlove - I have a question for you. I was told that the chance of recurrence is most likely the first 3-5 years. I haven't heard that it is most likely to occur most after 5 years. Do you have any studies I could look at?
Thanks so much!! e
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I feel like hope was taken from me. What if this drug could save me from getting another tumor?
Might I just add my understanding of years 5-10 (some extend to 5-15) from diagnosis in ER+ breast cancer and recurrence risk. If you search around a little bit (key words, estrogen positive breast cancer, recurrence risk, years 5-10) you will find comments from breast cancer experts.
Having done this on more than one occasion, I share with you that most oncologists now express concern that a recurrence risk does exist during years 5-10 years from diagnosis, even with past hormonal treatment the first five years. For node negative ER+ patients, the 5 to 10 year risk I've seen is 2% per year, or 10% over 5 years. For someone like myself, who was node + with ER+ breast cancer, the risk of recurrence in years 5-10 post diagnosis is 4% per year or total 20% over the second 5 years. Please note that recurrence may be local, regional, contralateral or distant. Distant recurrence risk is 0.9% per year as I recall (MA-17 data, Paul E. Goss), which is greater than the risk for which Tamoxifen was approved in high risk women for the STAR trial (risk 0.6%). Hence, many oncologists and patients are aware that estrogen sensitive breast cancer poses a longer risk of recurrence than non-estrogen sensitive breast cancer. This is very unfortunate: the "long life of ER+ breast cancer" as I refer to it. While it is true that studies are pending on continued hormone use past the initial prescribed 5 years, I believe it reasonable to say many oncologists feel a patient should at least be given full disclosure of ongoing risk, so she or he may weigh in with their opinions and perhaps choice on continuing or not.
Emanresu, with two ER+ cancers in your history, you are being very reasonable in asking if continued hormone therapy against the cancers is valid, even in years 5 to 10. I surely would wish to continue on with some hormonal treatment, especially given that it's equally fair to say we don't know that continued treatment will harm you, the corollary being that suggestion and statistics show continuation may help keep the ER+ cancer at bay. We've had women in this situation here on this board before, some in the British National Health Service, and with second opinions and their own research, they have reported back success in receipt of a prescription. In the US, an oncologist would be hard pressed not to give a two time survivor of ER+ breast cancer a prescription for hormonal therapy for years 5 to 10 if desired.
If desired I will cite references for this. I know this was just written about in Cancer, Journal of the American Cancer Society. Many internists are not aware of these statistics, btw, so please take some time to mention them to your internists who increasingly will be faced with the main followup of breast cancer patients after the initial years, due to the inadequate numbers of US oncologists in light of the aging population.
Press on, should you wish.
Tender
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Oh, yeah!!! I am thinking about Rogaine for my very thin hair -- I used to have very thick hair.
I have been digging around, trying to find out what may be in store for me coming up -- five years of Tamoxifen and Aromasin -- one of the switch people at 2 years. I am hoping that there is another clinical trial at IU that might include me, with just a change from the the steroidal Aromasin to one that is non-steroidal, but I don't know what they might have. Could be they will say "No more pills." Hate to take my chances out there.
Is anyone out there in some sort of trial after the five years that wasn't a full five years of tamoxifen and would have this switcheroo combination. Would love to know.
Thanks, girls. I have not been logged on in quite awhile. Hardly recognized the place. It did not recognize me. I am the old M2, doing well, and enjoying retirement. Had to pick a new name. But, I do need the site as I progress through the changes. Never seems to end, does it?
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Oh, yeah!!! I am thinking about Rogaine for my very thin hair -- I used to have very thick hair.
I have been digging around, trying to find out what may be in store for me coming up -- five years of Tamoxifen and Aromasin -- one of the switch people at 2 years. I am hoping that there is another clinical trial at IU that might include me, with just a change from the the steroidal Aromasin to one that is non-steroidal, but I don't know what they might have. Could be they will say "No more pills." Hate to take my chances out there.
Is anyone out there in some sort of trial after the five years that wasn't a full five years of tamoxifen and would have this switcheroo combination. Would love to know.
Thanks, girls. I have not been logged on in quite awhile. Hardly recognized the place. It did not recognize me. I am the old M2, doing well, and enjoying retirement. Had to pick a new name. But, I do need the site as I progress through the changes. Never seems to end, does it?
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Hi Whosure. What has your experience been like on Aromasin? Also, do you have any info on why Aromasin is steroidal base and the other AIs aren't?
Thanks!!! E
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I am in UK and took tamoxifen for 2.5 years and then (at my request) switched to aromasin. When I got to 5 years total of endocrine therapy I was told 'no more'....however, the letter from the onc to the GP (PCP) got lost/wasn't looked at , so I got another 6 months of prescriptions that way. I asked my onc at the next consulation if I could at least have parity with those who took an AI from the outset, and have another 2 years of aromasin, but I got another frosty..NO MORE...and decided to take matters into my own hands.
I got a consultation with a private oncologist, who wrote a letter to my GP saying he felt I would benefit from continuing the aromasin.THe GP presented the letter to the local Primary Care Trust..who rejected it, and so my GP has agreed to prescribe it privately for me. This means I am now paying £260 for 2 months' supply of aromasin, compared with £7.20 before (this was NHS prescription charge).HOwever, to me , it is worth it. I am planning to stay on aromasin for another year approximately, and will review the guidelines and research then. I will then have had 2.5 years of tamoxifen and 5 years of aromasin.
I am aware that there are potential long-term side-effects that we may not be aware of,.....but I am not planning to stay on aromasin indefinitely.I pray that my decision will be beneficail - I want to feel that I am doing all I can, bearing in mind tha I had a grade 3 tumor, with 3 positive nodes.
Sam
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Wow - I'm more conflicted. I had decided adamantly that I was going to stop the drugs this month when I see my doctor and have a consultation next week for a preventive masectomy. Now I'm questioning my decision - many of you are fighting to remain on the preventive drugs. What a choice we have in life.
By the way - Barbara - are you reading these messages?
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CBorden: you are not alone in being conflicting. The extended use of hormonal treatments for ER+ breast cancer is a very "hot" topic amongst even the breast cancer research and clinical experts and patient advocates. I was upfront in my post above as I wish to spread the word that ER+ bc regrettably has been found to linger in some patients. Working out who is the onging task, and it appears that longer coverage may be considered while a means to know who is further studied. Ah, that it would be simpler for all.
It's been bugging me that I didn't post a citation to give more credibility to my post. There are quite a few out there, but I am posting at least one. If you look at the Journal of the American Society of Clinical Oncology there has been ongoing discussion of extended use of hormonal (meaning drugs like Tamoxifen and AI's, not Premarin or Estrace [which are hormones])therapy. Also, Paul Goss MD, Massachusetts General has commented widely on this issue due to his involvement in a large breast cancer hormone study called the MA-17 (you can google MA-17 too).
I don't mean to frighten us, but rather to empower you with knowledge to allow you to make an educated choice in ER+ breast cancer. No one but you and your doctor(s) can make that choice for you. Hormonal therapy has and continues to play a huge role in ER+ breast cancer. Our goal of course should be its prevention, as we all live day by day if we have this with the consequences of these potent medications.
My best to all,
Tender
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I don't doubt any of this, and I am going to go on an AI when I finish my 5 years of tamoxifen, but I do remember a study a few years ago that found an ongoing survival benefit years after women completed their five years of tamoxifen. It was billed as the gift that keeps on giving. I'm wondering how to square the two studies.
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MOTC,
Great question. Regarding Tamoxifen, the English have delved into benefit of continued Tamoxifen past 5 years in a well regarded clinical trial by bc experts. I posted a while back on this. Their conclusion was that 10 years of Tamoxifen was statistically beneficial, and that no heightened risk of harm (from Tamoxifen turning on the breast cancer cell). Then followed discussion of how US researchers/clinicians came to consensus on limiting Tamoxifen to 5 years, followed by how most felt US oncologists in the short term may change this 5 year limit advise. I haven't been as diligent in followup of this issue, yet certainly have not seen any Oncology or Cancer Society statements about extension past 5 years in the US either.
Best,Tender
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Here is my prior post regarding the ATLAS trial:
Jul 23, 2008 12:24 pmTenderIsOurMight wrote:
Tamoxifen's duration of use as a hormonal has been revisited, as part of the ATLAS (Adjuvant Tamoxifen, Longer Against Shorter) trial.ATLAS was a multinational trial whose English researchers concluded continued disease suppression benefit with continuation of Tamoxifen use. Currently in the U.S., Tamoxifen is pretty much limited to 4 to 6 years (average 5). The ATLAS trial will undoubtedly be reviewed, with comments and advice by oncologists and NCCN (National Comprehensive Cancer Network, a consortium of experts) and ASCO (the American Society of Clinical Oncology). They may well put out position papers on this.http://community.breastcancer.org/forum/78/topic/708947?page=1#post_994958
Hope this helps.
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Interesting you mention a preventative mastectomy. I was thinking that if I have to go off Arimidex I will have my ovaries and breasts removed. Talk about a decision!
Even though my ovaries may not be giving out very much estrogen, they are still there. And if my breasts are still on my body they might get cancer again. So why not just remove it all.
I would like scientists to test the efficacy of Arimidex by testing the adrenal glands enzyme aromatse to see of the drug is working after 5 years or if there is damage to the endocrine system.
The only way "they" are testing if Arimidex or one like it are any good anymore after 5 years, is how many of us have died and how many lived. That is the criteria for whether a drug does the job of preventing a return. And that's the truth.
Surely, there is some way to test this drug with sensitive testing of certain enzymes and whether there is less estrogen in the body from the adrenal glands.
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Thanks, this is interesting, but the study I remember found that the benefit from taking tamoxifen extended after the drug was stopped. In other words, women who took tamoxifen for five years had a benefit in terms of survival and lack of recurrences at 10 years. At the time it was thought that tamoxifen might actually kill cancer cells, not just put them on hold. This was what I was trying to square with the information you raised in this post.
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HI, there,
I don't know much just my experience. First surgery 1991. Took tamoxifen for five years and then five years of Evista. Got cancer in 2003 in other breast. The tamoxifen could have kept the cancer at bay for several years, who knows. Thanks. MG
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My onc is keeping me on Arimidex beyond 5 years. According to her, studies are being conducted showing that taking arimidex beyond 5 years can be beneficial for women with larger tumors, and since I was diag. at Stage 3 that would be me. I did have to start taking Boniva and and Vitamin D3, and increase my calcium as my latest bone density showed what is termed a "significant change".
Pat
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Hi, there
I am going to my primary internal med doctor Monday tomorrow. I will ask him for a second opinion since my oncologist told me I cannot have another prescription of Arimidex. Since I have been on it for five years. I will be interested in knowing where he will send me for a second opinion. MG
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Hi!! Elisabeth, I did better on Aromasin than tamoxifen. The pills are so darned tiny, though. I dropped several on a rug where they could easily get lost. Considering how much they cost, I had to crawl about to find each one. ha!
I found I had fewer aches and joint pains on Aromasin, and wondered if that was because it was a steroidal, just like people sometimes take with arthritic pain -- but, I confess -- I don't know. There are three side effects that I deal with. One is the bone issue of osteopenia. I am on Fosamax once per week, along with two calcium and four vitamin D pills twice a day. I am now building bone, so am very pleased with that. Another side effect is thinning hair. I am investigating women's rogaine, but have not tried it yet. I have just started dealing with a skin disorder that is like seborrhea ( I probably spelled that wrong) and found out it is a common side effect for women on this particular drug. I get this raised brown patches that are so ugly, but they do not itch or anything. I get them cryosurgery-ed off a couple times a year. I am now getting more this winter.
I think this drug works much the same way as the other AI's in how it just blocks the estrogen. Ah, the hot flashes are really vigorous, too.
Hope this helps. I think they are working with us the best they can with the information they have, but I do wonder if we would be better off with more years. I was stage 2, Grade 1, 95% Estrogen positive, no nodes involved. But the tumor was big -- had neoadjuvant and got it down to 2.5 centimeters.
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Thanks Whosure. Very interesting - you are the first person I have heard of that did better on Aromasin than Tamox. I still wonder why it is a steroidal base? Why aren't they all steroidal based and what difference does this make to our treatment?
Thanks again and I'm glad you are doing so well. I have moved to Boniva and have (and do)taken calcium and d for over 30 years. I still, however, have osteopenia. My scans are not good, but osteoporosis runs in my family.
Take care. E
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I am completing 5 years on Arimidex this month as well. I have given much thought as to what I will do. If the doctor recommends it, I will stay on the medication for a little longer. What I'm really getting interested in, if I decide to take matters into my own hands, is loosing weight and working out with weights and getting my body fat down pretty low. I read in my doctors office that every 11 lbs you loose reduces estrogen. I could safely and healthfully loose 10-15 lbs. It would be the same weight as when I was 16 and I'm 54, but if thats what it takes then I'll just have to try hard to do it. Its really bothers me not to have answers for how long we should take this medicine.
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My "5 years" is up in Feb. 09. I was 2 years on tomoxifen and now finishing the 3 years of Aromasin.
I'm really fed up with the side effects from Aromasin - thinning hair, weight gain, lack of libido. I am very eager to stop. My last bone scan showed some osteopenia - and I am not prone to that. I'm 170 pounds and 5 ft. 8 - okay 175......ha ha....
I fight my weight constantly - and try to be very active for age 53. I run 3 times per week - and try to do weights 2 times per week - (rarely succeed on that). Now I'm reading that every 10 pounds increases my risk! YIKES!
I have ramped up my vitamin D which has helped to return my hair to somewhat normal. I take 600 mg daily plus whatever is in my calcium tablets. I think it works out to be about 1000 per day.
I didn't realize that Aromasin is steroidal - Is that why i eat so much?
All this information is so scary - I hardly want to read it - I head for my appointment next month. You are also so knowledgeable - I really appreciate your research - but are we just getting the side of the story of those fighting to stay on - finding the research that supports that goal?
Should I fight to stay on it? I have no idea. I was er+ but don't know the %. Stage 2 b with 1 positive node.
I have the feeling that those admitted to the study are stage 3 but may be wrong on that.
I feel totally lost.
Janet
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I saw my primary internist and he saw no reason why I should not be allowed to stay on Arimidex.
Since I now have no oncologist because of the blow-up with her about taking me off Arimidex after five years, at least I will have a doctor. I am non-compliant with her orders.
My primary doctor took lab work and one of the tests is for Vitamin D. I will be interested to find out if I do have enough Vitamin D in my body.
I am feeling better about my situation about the Arimidex dilemma. I guess. Haven't solved anything but I know more than I did since Jan. 1. I am not crying at the drop of a hat but am frustrated at the system that should have more answers than they do right now.
Five years your done, bye and oh, we haven't anything for you after this, AND we have no answers for you either.
You know the human body has the most of anything to be discovered. More than the planets, or ocean put together.
Well, at least I have a doctor who will allow me to take Arimidex if there is not something better. MG
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Sunshine
Ask for your medical pathology records by calling the hospital where the surgery was done, they will give you records. I did have the percentage of estrogen and progesteron on a pathology report. Although, I do not know what the "a" or "b" means.
I am taking to heart the losing weight thing. I started today writing down what I eat, calories and fat. I would love to get on the tread mill every day but sometimes I am so tired I don't. And I stay at home!
Someone mentioned about taking Arimidex and feeling old.
I thought I just was old and this is the way an old person feels.
Well, maybe the Arimidex plus my weight gain are adding to my feeling so old. Trying to get this weight off is very hard and I do not eat that much at all. So I think I MUST exercise on the treadmill to help myself.
And with you saying the estrogen relationship to fat is really putting a fire under my feet. Thanks.
MG
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