Arimidex 5 years or longer
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I had breast cancer in 1995 had a mastectomy put on tamoxafin this stopped working after 4 years on it allowing i think cancer to develop again in other breast,mastectomy in 1999.I was put on arimidex then and am at this moment am still taking it.This is ten years approx.My doctor at the time thoroghly looked into wether it has a life span and could not find any information that it would not continue to work, so he strongly advised me to continue with arimidex for life.I have moved and have registered with a new dr .This dr is wanting to stop my prescription for arimidex despite my previous dr recommendations.I had a few problems with hot flushes many years back with arimidex and slight joint pain .I feel that to come off arimidex leaves you open to a possible re occurance of cancer , the choice should be for the patient and not for the dr to decide possibly as a cost cutting exercise .I have done well with this and would say to those that are ok with arimidex to stay with it and to fight any dr who wants to stop the prescription if it is not your choice.
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Hi sjharri, and welcome. Congratulations on ten years on an Arimidex without recurrence and major problems. You are in an elite group of women, leading the way so to speak on the unknown. Too bad there is not a registry for ten year AI women being kept.
I can't answer your question of continuing on, not being your doctor or in your position. I am on year seven of an aromatase inhibitor (AI), btw. I do follow expert commentary on breast cancer and would say that without prospective clinical studies on extended use of an AI past ten years, it seems most do not recommend their use due to lack of clear knowledge on safety (some questions of late on AI's and heart-MI occurrence, bone fractures, cognition) and effect on ER+ cancer cells.
It appears however that ER+ breast cancer lingers around, in the form of a dormant state, or in bone marrow stem cells and hence runs a risk of recurrence decade(s) out. Quoted often is a 2% risk per year for node negative ER+ individuals and up to 4% per year for node positive ER+ individuals, with recurrence including local, regional, contralateral and distant. I've seen no numbers beyound the ten year mark, but read some expert voices who say potentially chronic hormonal suppression of ER+ breast cancer is necessary to avoid recurrence. These voices are few in number, academic types who use mathematical models to project cancer recurrences, as well as scientists who study hormonal positive breast cancer.
You say you think it should be a patient's choice, and I pretty much agree with this. It's our body, it's our fear, it's our willingness to contemplate the risk to benefit, so it should be our choice. There's an old saying "don't get off a winning horse" which I like to think of when considering switches to or from new oncology medicines. Arimidex has worked for you so it gives you pause.
Surely you must way your original cancer findings (was there node involvement or grade three findings) and your current health of your bones, heart, mentation to help guide you. I don't know if you will find an oncologist who is willing to continue on Arimidex but I certainly understand the reason behind your thinking.
Surely now some others here will further discuss this matter with you. I wish you good fortune and am glad you found bc.org.
Best,
Tender
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Many thanks for the reply ,not having a computer in the past i have been unable to be aware of what the latest thinking is.I had mixed papillary cribiform cancer which is a rarish one so i was told .I had radiotherapy treatment.Then a grade 2 adenocarcinoma lobular type with 2 of 23 lymph nodes contained tumour deposits er positive in both cases.I had 6 courses chemotherapy as treatment and arimidex.Just over a year after treatment i no longer went for any check ups as the oncologist left the hospital and we had appointments to be seen by a consultant who was not a oncologist.I have not had any check ups by a oncologist since and have not even been under anybodies care except that of my previous doctor.Many women at the time were left without proper care.I think i am going to have to fight to continue to get the arimidex as this doctor wants me off it ,i am hoping to convince him against this.
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Hi Sharri I am entering my almost 7 year of bc and have fought to stay on AI's I got lots of goods info and approached my Dr who after we looked at my pathology and the increasing evidence that us Er positive girls will always be at risk(i had 2 micro mets to 2 nodes) she felt as a well informed adult i should,d have the choice. I follow the protocol for the for the MA17r clinical trials. my bone density( I have been on Actonel for 3 years now) is normal as is my blood work, mammogram in January.You will likely have to do what i id find another DR who will listen to your concerns
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Bumping this great thread for those who will make choice on AI continuance in 2010
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I posted way back here about approaching 5 years on Arimidex. My onc did not allow me to continue. I am on the MA17R study which is either a placebo or femara. Pretty sure it's a placebo for many reasons.He was firm. Wanted to clarify that I had no tamoxifen prior to AI. Just had ovaries removed and arimidex at age 39 from the get go. You are allowed to use tamoxifen for many years and then add another Ai (arimidex, femara, aromasin) for an additional 5 years. AI's are not yet indicated for longer.
Things are going very well for me off the drug. I was very scared to come off. I went in armed with all sorts of goodies and studies and told him it was a chronic disease and therefore should be treated chronically. He disagreed entirely said our disease is mislabelled.That as far as my risk of BC returning he is equally wary of keeping me on a drug that will possible cause alzheimers or heart disease.That in his opinion I am healthy and he doesn't want to jeapordize any aspect of my health.(Never been called healthy since 03/2003 so this was a highlight) thing is they just do not know risks or benefits. I would have been happy to continue and anticipate that we will all be continuing at some point.Would prefer to be on it as I had little issues.But I'm not afraid anymore either.
I have been doing rituals that I feel help just as much for the past 7 years. 10 cups of organic green tea everyday since diagnosis, 9mg melatonin every night, 5000 vitamin D everyday in winter, less in summer and good exercise, maintained body weight, lots of fruit & veggies and little meat, drink only red wine and keep happy etc.
Goal is to stay healthy and strong till they release the study info and then he said I would be the first to get a call. So let us know how it goes. Michelle
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Michelle,
Thanks so much for posting an update and thanks for participating in the trial that will provide the answers we all want! I just decided to go off Arimidex after 5 years since I felt my risk reduction from Arimidex (1-2%) was no longer worth the side effects. But of course I am still scouring the internet and looking for a morsel of info to make me feel better about my decision. And of course the right choice is likely different for each of us.
If it makes you feel any better about possibly getting the placebo, Johns Hopkins Breast Center has an "Ask the Expert" Q&A on their website. I came across this philosophy, which I have never heard before:
Q: We take chemo to kill cancer cells that may have traveled somewhere but cannot be seen, then we take hormonal to stop what may still exist from growing, and after five years we do not do any thing?
A: Chemo and hormonal therapy are designed to kill it or stop it. If there were still cancer cells surviving after 5 years of treatment then the cancer was aggressive from the beginning and some would say it was destined to continue to be a problem. I like to compare it to antibiotics. you take antibiotics for a specific period of time to kill infection. you don't take them forever--- if you did, you would build up immunity to them and if you got an infection again they wouldn't work.
Who knows if this philosophy is correct or not, but it's an interesting thought...at least something to help you if you have second thoughts. And once the trials are done, we'll know a better answer. Keep us posted on your progress. Good luck!
Moissy
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Congratultions.....Can you tell me what side effects you had during your 5 year period and how long it took to get rid of each side effect or if any side effects still linger, even a little bit. I'm at 3 1/2 years on Arimidex and the joints had started to act up last year and had gotten more and more painful.
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Sueanne,
I just sent you a private message. You may want to delete your email address from your post to avoid getting unwanted spam.
Moissy
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Just saw this thread had reawakened, so I thought I'd post what my med onco told me 2 weeks ago. I'm 2 years into my 5 years on Arimidex, and I asked her at my latest recheck visit whether she had an opinion about staying on an AI longer than 5 years.
She said, 1) nobody really knows (yet) what the long-term effects of the AI's are going to be (extreme estrogen suppression leading to bone loss etc.). The AI's just haven't been around long enough to have that information. So, 2) for her patients who had early-stage BC with a low risk of recurrence, she's taking them off the AI after 5 years. She said her threshold for "low risk" was typically Stage I disease with a tumor that was less than 1 cm in diameter. But, 3) for those patients with more advanced BC (positive nodes etc.) or with tumors greater than 2 cm in diameter, she's suggesting that they continue taking the AI longer than 5 years.
Wouldn't you know it: I'm right in the middle. I had Stage I BC with a tumor that was 1.8 cm in diameter. My onco said there are studies going on right now that are supposed to answer the question of whether staying on an AI longer than 5 years is beneficial, and which women would benefit the most (or the least) from extending the treatment. By the time my 5 years are up, she expects to be able to tell me whether I should stay on or go off.
So, she concluded, she was glad that she did not have to answer my question yet. I'm okay with that.
otter
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I too am at Dana Farber. My 5 years on arimidex was up in February but at my last appointment (October) they allowed me to stay on an additional 6 months past February because my case was "aggressive". My onc's assistant said they would see if anything new was reported between appointments and make a decision at my appointment in June. I am going to BEG my onc to let me continue on arimidex - they are conservative at Dana Farber so I don't know what she'll say - and if she says no I will find a way to get it. I have a brother in Houston who is an Ob-Gyn and I think he would be willing to prescribe it for me. If not I'll find a way to bootleg it! If it within my power at all I am NOT going off arimidex. Fingers crossed.0
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Trisha I felt like you feel too. I did the begging. Here at our centre the oncologist I met with Canadian lead of the trial I am on. I am either taking Femara now or a placebo but I'm pretty sure placebo. A year after I began this trial and finished my last Arimidex had him sit with me and talk about it in great depth. While I would prefer to be on it (let me stress that i really really want it) with a "high" risk categor 5+ lumphnodes and 6cm cancer...he at least eased my mind. The good news story was that they are seeing lots and lots of women who are going 15+ years out and have previously had bad stats continuing on without recurrence after 5 years AI therapy. They are "discharging".
He said that as of to date they have no indication or trend of any benefit past 5 years. if they do he will let me know. being "youngish" still after 7 years at 45 he wants to preserve my health to the best of ability and feels they are doing so. So even though i still would like the option to continue it at least made me feel good that he has such confidence in me.That is a complete switch from past years.
who knows if i'm getting femara or not. about 2 months after starting big patch of crazy hair on my neck? i feel fabulous and full of energy but this year notice my legs don't cooperate as much in tennis or swimming or my energetic walks. i dont have flashes anymore but hey it's been 7 years since ovary removal and the drugs.
to feel better I still do my own rituals. 1pot + organic green tea every day with 6-7000 Vitamin D dropped in, tablespoon raw cocoa and coffee in a shake, 9mg melatonin every night, red wine in good quanitities
, little meat, lots of exercise.Living well.good luck to us all. Michelle
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I see that BCO is having an "Ask An Expert" conference on June 10, where the discussion will be on the Annual Meeting of ASCO. I won't be available that night; but if one of you ladies could take part (7pm EDT), ask a question of them about the latest recommendations at the national level.
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I think what you all are hearing is correct. There is no answer as of yet. My previous onc told me that after five years of arimidex, he would only allow me to go into the Femara/placebo clinical trial. That was even though I had two large tumors that were treated as stage 2B/3A. I wanted a second opinion and saw a new oncologist who deals only with breast cancer and is much more knowledgeable as to latest info. He also said no new info is available at present.
He has patients who stop at five years and those who want to stay on longer although he does not support going longer than 7 yrs. because there have not been enough long-term studies as to other potential side effects that we may not know of yet. He is also OK with patients taking a holiday from arimidex for a year and going back on. So I decided to go off for now. One reason was my hair was thinning so badly and I felt the additional benefit he cited to me for arimidex at this point in treatment was not that great (1-2%). Of course your mileage may vary. I thought I would be really worried about not taking the little white pill each morning. But then I developed low thyroid, so now I have another little pill to replace arimidex - LOL. I don't mind being off of it at all, but if studies come out saying it has a great benefit and no additional side effects we're unaware of, I would certainly consider going back on it. We all have questions, and not so many answers right now. Good luck in your own decisions.
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Gosh, I wish there were better answers than that!
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I have been on Arimidex for 6 years--and miserable the entire time. I was 2A, node neg'Er+/PR+ Her2 neg, but with lymphatic invasion at the tumor site. I am 56 this week, and would rather die than continue with this lousy quality of life. I mean it. And I used to be a positive, bubbly, happy person! In fact i was a breast cancer research nurse during the ATAC trials, & looking back I realize I thot I knew so much about cancer, but I now i realize I knew nothing of what some women suffered with this drug. BTW: I was 49 at diagnosis, NOT menopausal, and my Onc told me the women who have the worst side effects and the hardest time are those like me, who did not have the benefit of natural menopause prior to the insult of surgery, chemo, and AI. Seriously--I am miserable and do not think i can continue. The fibromyalgia is 24/7, nothing helps, & my quality of ACTIVE life is nil. I used to surf, ski, ride bikes--now I can't b/c I hurt sooo much. If men had boobs they'd figure out how to diagnose and treat without squashing both our boobs and our spirits!
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Swede, since it is debatable as to whether or not it helps after 5 years, why are you staying on it?
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B/c my Med Onc told me I should. Today is my Birthday....
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Happy Birthday!!! Did the onco give you really good reasons for his/her recommendations knowing that you have had such a tough time with it; and if he/she wants you on something, could you try one of the other inhibitors to see if you would have less SE with the same results?
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HI. It'll be five years on for me in August.... I'm trying to decide what to do... had stage 3 fast growing type that was multifocal with invasion. I don't love taking Arimidex... but I believe it was been beneficial... awaiting more info as it becomes available. I'm thinking of taking a break from it but not sure if I should or just keep going.
Wendy
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Well I got the go ahead for at least another year! YAY!!! My five years was up in February so next year at this time I will have been on arimidex for about 6.5 years. My onc said they are going to be starting a study and that it is possible that going off for a year and then getting back on could be more beneficial than staying on continually. She said that is just one thing that is being postulated and they are not sure about it. But we will re-evaluate next year at this time. She also wants me to have another bone density (last one done in 2008) so I better start getting serious about taking my Boniva!
I told her that either I have no side effects or they have become so much a part of the norm that I don't even notice them anymore!
(Wendy - I was also stage 3 with multifocal invasion)
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Hi ladies, just had a 6th month recheck. I still have 2 years left of the 5, but asked my onc what he thought about going more than 5 years. He said that each case is different, of course, but studies are showing that it is probably a good thing for many women. As there is always a risk of estrogen postive cancers returning, he said if a woman is young(ish) and her bones are doing OK, he is starting to recommend that she continue on an AL beyond the 5 years.
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I have a bright green sticker on Aug 9th, I will be thru my five years on Arimidex. My onc is going to consult with another oncologist to see whether I can truly stop. I'm 52 now, was diagnosed at 46. ER +/PR- HER2- 32/42 nodes positive for cancer. Worse side effects bad knee arthitis, osteopenia, vaginal dryness and I still have slight problems with memory. I'm hoping that stopping the med will lessen these. But one does worry about cancer returning.
This has been a great site to share info and gain hope and insight.
Deb
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Report back on what they say!
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I just had a consultation with an oncologist at Memorial Slone Kettering in NYC yesterday. The advice I got was to stay on Arimidex for 10 years.
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susand: Thank you so much for sharing what your consultation with your Onc at Slone said. My Onc here is determined to keep me on Arimidex for at "least" 10 years and frankly after reading in some of the posts that other doctors were taking their patients off after only 5, I was getting nervous about whether or not to keep taking it. I started on my second 5 years some months ago.
Sure, I have to warn my partner not to come around me when I am having my crying spells or some pains but at least I am still here to come out later and fix supper! It's NOT a fun med to take but the alternative is not what I want to consider. So I guess I will not have that talk with my Onc next visit after all. I think the Oncs at Slone Kettering in NYC should know what they are talking about. I was very relieved to read your post tonight. Much appreciation!
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Medigal: I am glad that you found my post helpful. I too am not thrilled with some of the side effects of Arimidex. I personally feel that it does lessen my quality of life somewhat. However, if it is providing protection against a reccurance I have no problem dealing with the side effects. I have two young children and I would do anything to stick around and watch them grow up. The oncologist at MSKCC yesterday was very clear that I should speak to my local oncologist about staying on it for 10 years and possibly longer (when the time comes) as more information will be out at that time. I was advised to do everything possible to keep up my bone denstiy so this was a viable option. I hope this helps!
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Thanks Susand.
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I was told that 5 years of Arimidex would be the time for me. That there is ongoing studies but nothing to recommend more than 5 yrs of AI's here in B.C. yet. So that's it I'm done and happy to say good bye to treatments. I'll try to live healthily and positively.
Deb
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my oncologist told me that stopping at 5 years depended on a few things such as nodes, I did not ask for more info as I still have 1 year 1/2 to go, don't know what I will decide
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