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Arimidex 5 years or longer

24

Comments

  • Yazmin
    Yazmin Member Posts: 218
    edited January 2009

    I am doing 1 hour of very high impact aerobics every two days. Taking 1 day to rest between workouts has literally worked very well for me, because I then feel very well rested on my workout day, and have no problem whatsover doing that 1 hour of very intense aerobic exercise (I don't even get really tired at the end of my 1 hour!!). I have also been making sure I get my 5-13 fruits/vegeables daily, and I am taking well-researched supplements (not too many, though).

    Three years after my diagnosis, I am feeling much better than I did when I was 15 years younger but paying absolutely no attention to diet and exercise. I also sleep like a baby. I did go through chemotherapy, and the hormonal treatment I have chosen is an oophorectomy (removal of the ovaries to induce menopause, i.e, reduce estrogen). If this is any indication, I am currently feeling the best that I have felt since I was in my early twenties. Alas, I am 52 years old. Nevertheless, I have been building muscle on this regimen, and steadily reducing my weight (which I can tell by the stares that I have been getting from guys).

  • rumoret
    rumoret Member Posts: 45
    edited January 2009

    American Cancer Society 2005 Guidlines

    Premenopausal: Tamoxifen 2-3 years with or without ovarian supression or ablation.  If the woman becomes postmenopausal, the tamoxifen should be continued for a total of 5 years and followed by 5 years of letrozole. 

    For postmenopausal women take tamoxifen for 4.5 to 6 years and then take exemestane for 5 years.

    Just some of their choices.

    Terry 

  • Joy232
    Joy232 Member Posts: 16
    edited January 2009

    Yazmin,

    Thats really great!  If you don't mind me asking what supplements are you taking? I would like to have your energy! 

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
    edited January 2009

    I'm heartened to hear your primary care doctor is willing to prescribe continued Arimidex, MG. If he needs any references regarding its continuation I will post them (much discussion is on a physician site called breastcancerupdate.com who have been showing the studies supporting its continuation past five years for a year or longer). This is constantly discussed amongst oncologists. Nancy Davidson, MD breast cancer oncologist, who is a best evidence studier in breast cancer, if I recall correctly gives her patients the evidence and then they work through choice. So here you are correct: it is not a five years, your done situation with ER+ breast cancer anymore. Informed discussion and consent to options is necessary. 

    As to feeling "old" on the AI's, well I read once that cancer itself ages you. I do admit that the durability of the SE's on Arimidex and Femara does indeed make me feel less spry than I wish to mid fities.

    My best to all,

    Tender 

  • emanresu
    emanresu Member Posts: 13
    edited January 2009
    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. At least I have a doctor who will allow me to take it if there is not something better. Thanks. MG

    I am going to post a new topic about Vitamin D lab test. I would like to know what others have experienced in how much Vitamin D they had or did not have. And someone said that a Dexa Scan every year on Arimidex. I am so dumb I thought I would have to wait years before I could ask for one. Sure do learn alot from this site. MG

    Dx 10/21/1991, RBr, IDC, 2.5cm, mod diff, Stage II, Grade 2/3, 0/18 nodes, ER+/PR+, lumpectomy, rad, CM5FU Dx 5/22/2003, LBr. IDC, 1.7cm, well diff, Stage 1,Grade2/3, Sent.NodeBiop 0/1, DCIS ER+PR+,HER2-, lumpectomy, rad, Adriamycin/Cytox..
  • carmelle
    carmelle Member Posts: 134
    edited January 2009

    Janet...you should be able to stay on aromasin 5 years. It's five years from the onset of the Aromasin not the tamox and AI combined. My prob was having no tamox to start which shortened me down in the end. Are you still running?

    Michelle

  • sunshine2003
    sunshine2003 Member Posts: 4
    edited January 2009

    Hi Michelle:

    I thought that was what I was told originally when switched to aromasin.  At my 5 year appt. saw the "other doctor"  can't remember her name - extordinarily thin - with extreme long hair.  Told me it was a total of 5 years between the 2  - I said that's not what I understood....etc. etc.....

    I now have mixed feeling about it - I don't love the drug - and most of the effects are irreversible - ie. bone loss, libido loss, vaginal effect.....I'm now working on the hair and the stomach fat (back at weight watchers - 10 pounds to go...) issues.  Pumped up my vitamin D - - hair is improving - it's not all over the bathroom counter when I brush it!   I could live with the ongoing other issues but don't want to develop osteoperosis.

    By the way - I have a feeling things are not good with Judy - when I was in there in June - they let it slip that she was "off" - then saw the worried faces - then....as I was leaving she was in visiting Dr. T. in a clinic room with spouse (presuming) Do you know anything - she was so wonderful for me - I feel helpless and would like to do something for her.

    How often do you see Dr. T. now?

    You're just about at 6 years - so did you have no tomox. -and just started Aromasin - once in menopause?

    Yes, still running - but not doing the long distance - sticking to 5 or 10 per time.  Ran into some leg soreness that wouldn't let up - and also found the committment to marathon training very time consuming.

    Nice to hear from you.

    J.

  • carmelle
    carmelle Member Posts: 134
    edited February 2009

    Oh I am sorry about Judy. Damn. That's my worry...recurrence. With my er+ and #/size positive nodes my odds of recurrence are as high as 100% within 20 years. As I was 38...I'll likely recurr at some point but hope that treatment may stave that off.

    I have appt with dr. t on the 17th but i think he thinks i am going straight into trial. i'm not comfy with placebo arm at all.

    i don't have any side effects from my arimidex that have been problematic. same weight, bone density 100% still etc. I started straight on arimidex as they took my ovaries out right after chemo.no tamoxifen. this trial is for femara but only 50% get the drug....50% placebo.

    sorry about the running. you were quite inspirational. still are.

  • Joy232
    Joy232 Member Posts: 16
    edited February 2009

    I have completed 5 yrs on Arimidex and was given the option of continuing it on a year to year basis.  But I want a break. I would like to find out if I can keep my estrogen level low myself.  I have been off it for two weeks and honestly I don't feel any differently.  My joints still ache (but I do exercise alot) and I still have bouts of insomina and the vaginal dryness is still there.  I am going to get levels tested after a month.  I'm not sure how long it takes to get it out of your system or when the levels return to normal post menopausal levels.  Does anyone know anything about that?

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
    edited February 2009

    Hi Tweeti,

    There's a difference of course between the length of time it takes for the Arimidex to exit your system ( seem to recall Arimidex has a half life of around 60 hours, so in about 120 hours or a week a blood value should register it as low) and how long it takes the low estrogen symptoms to reverse themselves. I imagine the later can be very variable and take quite some time; this may depend on your age, number of years into menopause, weight, proclivity to arthritis, joint pain etc...Two weeks is a short time in hormonal land-perhaps in six to eight weeks you might have a better idea of where your natural estrogen level may trend towards.

    Wish you well,

    Tender 

  • sam52
    sam52 Member Posts: 431
    edited February 2009

    BUMP

  • carmelle
    carmelle Member Posts: 134
    edited February 2009

    Unfortunately I wasn't allowed to decide to stay on arimidex. I have this clinical trial or nothing.

    I enrolled because I really hope I get put in the 1/2 that get the AI (Femara) and not the other half with placebo. Onc did tell me that if the data is promising along the way they will stop trial and put all of us on the drug right away.

    As to the 7-9 year spike. I certainly brought that up. He said not that was based upon women who were taking tamox for 5 years and stopping old data. The AI's apparently have a much stronger carry over effect even after stopping. Or as he put it not carryover but cure. 

    Michelle

  • Joy232
    Joy232 Member Posts: 16
    edited March 2009

    Carmelle, thanks for the encouraging news about the clinical trial you are in.  I have had alot of anxiety about stopping arimidex after finishing the 5 years. 

  • SueTacoma
    SueTacoma Member Posts: 3
    edited March 2009

    I have been taking Arimidex on and off  for about 4 yeras.  when I am off Arimidex, I am on Tamoxifen.  My onc told me he will put me on Arimidex for more than 5 years, possible 10 years. I was diagnosed Dec. 2004, stage 1, grade 3.  ER+/PR+, HER2 -.

  • socallisa
    socallisa Member Posts: 10,184
    edited March 2009

    I took Tamoxifen for one year and arimidex for four years...so five years total..

    I finished up three years ago..and I was finally able to  lose some weight on the

    same diet I tried on arimidex...lo fat

    More is not necessarily better ... according to one of my oncologists

  • NancyNY
    NancyNY Member Posts: 5
    edited March 2009

    bump

  • sam52
    sam52 Member Posts: 431
    edited March 2009

    SoCalLisa......could I ask what was your original dx (ie, size, grade, nodes,etc)?

    I am wondering how much of this is pertinent to our recurrence risk once we stop endocrine therapy.You seem to be doing well.

    Thank you,

    Sam

  • survivor98
    survivor98 Member Posts: 3
    edited March 2009

    I am finishing my tenth year on Arimidex. My oncologist - at a major cancer center - has supported my continuing on it beyond the arbitrary 5 year mark. I believe I am one of the very first to take Arimidex as adjuvant therapy. In 1999 when I started taking it, the FDA had only just recently approved it for mets. My onc was incredibly excited about the intial results with it and felt I was a perfect candidate to use it. I had already tried Tamoxifen and raloxifene (Evista) and was unable to tolerate either. Since I had a high chance of recurrence, my onc believed Arimidex was a prudent choice.

     I have had a relatively easy time with it. Over the last ten years I have experienced some joint stiffness, a brief stint with 'trigger finger' and loss of bone density. Since I already had arthritic issues and had  some trigger finger on occasion, those things were minor to me. I have been receiving annual infusions of Zometa for five years now with fabulous results! My bone density has improved to high normal. I receive a 4mg infusion once a year that takes around 15 minutes.

     JO-5, my original diagnosis was the same as yours. I chose CMF for chemo (with my onc's blessing) and completed 35 rad treatments. After completing chemo and rads and adding an additional 5 years of Tamoxifen, my chance of recurrence was still 20%. I was reluctant to do nothing once we realized I wouldn't be able to take Tamoxifen, which was when my onc suggested trying Arimidex. At the time, he said he truly believed the aromatase inhibitors/inactivators would become the gold standard and treatment of choice for postmenopausal women doing adjuvant therapy. He was right.

     We had a long discussion about continuing once I finished 5 years. Since I was, in his words, a pioneer, we ventured into unknown territory by contining. Once I decided to stay on it, he told me that if he were faced with the decision, he would continue to take it, too. I would have liked to be part of a trial, but there wasn't anything available at the time. However, I have absolutely no regrets and would do it again in a heartbeat! I trust his advice without reserve. He was right on target with his recommendation to do Zometa infusions, too. Now women have the option of doing Reclast infusions specifically to treat osteoporosis.

    I understand that many folks have major problems with AIs, and I am extremely fortunate to have sailed through all these years. I am almost 11 years out from dx and remain cancer free. I don't know that I could say that if it had not been for Arimidex. We will revisit the issue once my tenth year is completed. I'm honestly not sure what will happen. I'm inclined to stay on it indefinitely. There is a piece of me that is reluctant to fly solo, even after all this time.

  • Blundin2005
    Blundin2005 Member Posts: 27
    edited March 2009

    Sigh...interesting comments all.  I'm 3 yrs. 3 months on Arimidex.  I hope that by the time I reach 5 yrs there will be a clearer picture.  It's never easy any of this.

    Best wishes to all 

  • survivor98
    survivor98 Member Posts: 3
    edited March 2009

    JO - I was diagnosed with a Stage I, Grade 3 IDC, ER+/PR+, HER2-, 0/15 nodes. My tumor was 8mm. I was 50 at diagnosis, but had been menopausal for 21 years. I took HRT for 16 of them. I was told that although my tumor was small, it was extremely aggressive and chemo was recommended. It was my choice which protocol to use - either CMF or AC/T. Since I had such a high chance of recurrence after treatment, I chose to do CMF, saving AC/T in the arsenal should I need it. The overall survival rates for CMF and AC/T are virtually identical for post menopausal women.

     There are several characteristics that are observed in grading a tumor. They use a combination of all those things to arrive at a grade. I think it's possible to have a low Grade 3 and a high Grade 3. Each oncologist uses his best judgement and experience to help make treatment recommendations. Now docs have Oncotype testing results to help them. When I was diagnosed that was still a dream...

     One of the frustrating chores we have though all of this is weeding through the information, listening to the advice we are given, making a decision and then moving forward and not looking back. Each of us has to do exactly what we believe is the right thing for us - not any easy task.

     In all of the discussions I've had with my oncologist over the years, potential problems with adrenal glands has never been raised. We've talked about the bone density issue and keep close tabs on my liver function. It's my understanding that Arimidex inhibits the production of aromatase which is produced in the adrenal glands. I am not familiar with any direct effect on the glands themselves. I'm due for another checkup and Zometa infusion next month. I'll ask about potential adrenal problems then and let you know what I learn.

  • NancyNY
    NancyNY Member Posts: 5
    edited August 2009

    Gotta keep bumping this up. My five years on arimidex are up in December.  My oncologist said the official recommendation is to stop at five years, but, I can opt to continue.  She also said that her gut feeling is longer will be better, but that she could be wrong.  Another option she gave me is stopping for a few months in December, and then going back on it if the results of a study show it is worth it.  Too many options, I don't know what to do??  If anybody hears of any study results, please post it.....           thanks, Nancy

  • slyguppy
    slyguppy Member Posts: 1
    edited September 2009

    2% per year, recurrence after 5 years? hmmm. I see so many conflicting graphs and stats. some show increase during first three years, then decline, then very slight increase and then decline. My oncologist told me at my first visit that the risk was 1% a year if I took no AIs; and that Femara would cut that by more than half, and that the effect continues even after you stop taking it (yes). I don't know why, but at my last visit he said "We can talk about stopping when you get to two years." Did he say that because I have been sick and miserable? He didn't clarify. Was it because of the kind of tumor I had (surely not) or my age (also surely not). Was it because he doesn't think I'll live more than a year or two more anyway? Was it because I have osteopenia already? I don't know. I have never taken arimidex, only Femara, the gold standard nowadays. Have you seen the new studies identifying stroma and other factors showing chance of recurrence? Better than oncotype testing, maybe.

    I have been so sick. I don't know if it is the Femara or not, because I keep taking it.
  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
    edited September 2009

    slyguppy-maybe because of your tumor profile (stage 1, highly differentiated, no nodes) your oncologist is mentioning coming off at two years because recurrences in ER+ are highest during the first two years (out of five) AND because of your side effects. Best to clarify that with him.

     The breast cancer research on the stroma (the background connective tissue on which breast cancer cells rest and receive support as well as that in the tumor tissue itself) is very timely. While early in research, it seems stromal cells can put out chemicals which "call" a bc cell to adhere, imbed, grow etc. Metalloproteins (MMP's) from tumors can degrade collagen or make more amenable for cancer cells to implant. Their role in invasion of breast cancer is just beginning to be defined, there are many proteins in this family (at least MMP1 to 9). Femara has been found to inhibit MMP 2 and 9, which in themselves are collagen degraders (collagen forms the back ground in many tissues, particularly joints, ring a bell?). My own opinion, not scientifically supported, why aromatase inhibitors are related to joint problems is perhaps their effect as inhibitors of MMP's in some manner. Letrozole, in the presence of estradiol in breast cancer cells MCF-7, also was found to inhibit MMP's.

     Here's a link to MMP's and Femara. There are lots of newer articles on stromal cells and bc. It's exciting to see research into stroma: a siren beckoning within?

    http://www.ncbi.nlm.nih.gov:pubmed:12569569.

    sorry, computer acting up today, apparently direct link not accessible. 

  • EWB
    EWB Member Posts: 592
    edited September 2009

    This is all so interesting! I am on Femara and Lupron as first line therapy for stage 4 with the plan to take the AIs for as long as they work - its almost 3 yrs and so far so good regarding the cancer. The SEs have been difficult but I manage. It is a little scarey not knowing the long term effects/concerns of theis treatment but since I am highly er+ & pr+ and Her2neu+ I feel like I don't have any other choices for the long term.

    Best wishes to all

  • SueTacoma
    SueTacoma Member Posts: 3
    edited September 2009

    Welcome back, Tender!!  I miss your posts!

  • otter
    otter Member Posts: 757
    edited September 2009

    Tender, here's the link to that abstract: Note that it has slashes instead of periods:  http://www.ncbi.nlm.nih.gov/pubmed/12569569

    This is the title of the article:  "Letrozole as a potent inhibitor of cell proliferation and expression of metalloproteinases (MMP-2 and MMP-9) by human epithelial breast cancer cells."  The paper was published in 2003. It was a report of "in vitro" (tissue culture) experiments on the biochemical behavior of MCF-7 cells (that's a cell line derived from human breast cancer tissue) in the presence of letrozole.

    The role of metalloproteinases in the malignant behavior of cancer cells is a hugely important research topic. Here's a recent paper on the subject.  If you go to the PubMed page, there's a link to the entire article (free):  http://www.ncbi.nlm.nih.gov/pubmed/19531263

    otter
  • otter
    otter Member Posts: 757
    edited September 2009

    This is off-topic and TMI, but it's a follow-up to a comment that was posted earlier in this thread. I was surprised to read ihere that Femara is now considered the "gold standard" among aromatase inhibitors.  I don’t think that’s the case – at least, not yet. 

    According to the 2009 NCCN (National Comprehensive Cancer Network) Clinical Practice Guidelines for BC treatment, the 3 aromatase inhibitors (Arimidex, Femara, Aromasin) have "similar antitumor efficacy and similar toxicity profiles."  Here's the NCCN website: http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

    There is in vitro data comparing Femara with Arimidex in which Femara does a better job of inhibiting aromatase activity.  I think there also might be a study done in women that shows lower estradiol levels in women taking Femara compared with Arimidex.

    I did find an international study reported at the 2002 ASCO meeting (in abstract form) in which women with "advanced" BC had a better "response rate" if they were given Femara than if they were given Arimidex. The "response rate" refers to measurement of the size of their tumors. However, other outcomes of that study, including "median time to progression," "median time to treatment failure," and "median overall survival" were no better with one of the drugs than with the other. Here is a link to the abstract from the ASCO meeting: http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=16&abstractID=131

    That report received a lot of attention, because it was international in scope and was the first time the benefits of Arimidex and Femara had been compared "head-to-head" in actual BC patients. Novartis liked the results a lot.  Of course they would -- they make Femara and they sponsored the study.  Here's a press release from Novartis about the study:  http://www.pslgroup.com/dg/215672.htm

    On the other hand, the study was criticized because it was "open-label", neaning that everyone (patients, doctors, nurses) knew which women were on which drug.  Results of a "blinded" study are considered more reliable.  Also, the women in the study had advanced BC and had already failed on another treatment, so the results might not be applicable to early-stage BC.  The results did end up getting published in a journal, but they were embedded in a review article -- not submitted as a stand-alone, peer-reviewed research paper: http://www.ncbi.nlm.nih.gov/pubmed/12902872 

    Because of all that, some oncologists were still skeptical, and many still consider Arimidex and Femara to be equivalent in effectiveness.  I guess Novartis wasn't convinced, either, because they sponsored another clinical trial to compare Femara and Arimidex in women with ER+ node-positive BC:  http://clinicaltrials.gov/ct2/show/NCT00248170 

    According to the NCI website, that "FACE" study has been completed; but I haven't seen any results yet.

    otter 

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 55
    edited September 2009

    Yes, studies have not concluded one aromatase inhibitor (AI) is better than another. Like the limbo, oncologists don't know how "low" is low enough (perhaps mid range is better), nor whether too low might make potential left over bc cells to change to over the long hall increase resistance to hormone therapy. As Otter says, trials are ongoing. I do take Femara and found Arimidex easier on my joints and more.

    I did read a recent summary paper from the 2009 Aromatase Conference. Clinical trials have begun on interval alternatives in AI therapy: studies where you're on for a period than off for some time, then on again. Paul Goss MD (one lead researcher of CA MA-17, now at Mass General) is heading one such study. Wouldn't that be great for those who follow, having some free time from these drugs wo undoing benefit? 

    The Aromatase Conference did not mention CYP450-19 polymorphisms, varying genetic profiles of the aromatase gene which impedes conversion of testosterone to estrogen. I said in months past that I would post if I saw anything, and so far I've read only one small abstract reflecting such polymorphisms (and would be hard pressed to find it).

    Thanks for your help Otter. I appreciate your keen insight and hope you and others will also feel free to correct any mis-words I make.  I'm struggling a bit more with thinking processes than I like, and don't want to lead anyone astray. 

    Thank you too Sue for your kind words.

    My best to you all,

    Tender

    PS: Just saw the 2009 San Antonio Breast Conference is to gear up December 10 or so. One of the best breast cancer conferences in the US, and wouldn't we all like to gather and enjoy listening to these remarkable bench and bedside researchers, nurses, physicians and more. I can just imagine the group interest and enjoyment we would have, and the knowledge and hope gained. Well, I'm sure many will post on it here with equal sincerity and reflection.

  • kajSS
    kajSS Member Posts: 1
    edited October 2009

    Dear Tender and others who are keeping up on this research,

     I am wondering what you thought of the study on sequencing AI/Tamoxifen that was reported at the last San Antonio Conference (I think) and reported on this website. Although the headline coming from the study was something like "sequencing does not improve outcome," to me the most interesting and somewhat surprising finding was that two years of Femara followed by three years of Tamoxifen was just as effective as FIVE YEARS of Femara. (Two years of Tamox followed by three years of Femara was NOT as good). The study was looking at distant recurrences about 7 years out, so differences might show up later. But given the damage that AIs have done to me (bone destruction, vaginal atrophy, pain in every joint, brain fog worsening every year) I wish I had seen this study three years ago. I might be in better shape now.

    I just finished 5 years of Arimidex and have finally decided to quit it for now (at my onc's urging) as I head off for a one-month research trip, hoping to get my brain back and some joint relief. Not sure yet if this is a "drug holiday" or quits for good.

    As I am stage II (ILC 2 cm, 1/26 nodes) I have thought about now taking Tamoxifen for few years but there is no clinical support for taking tamoxifen after five years of an AI (and I know the speculation about ILC and tamox). My bone doctor says Evista/Zoledronic acid is also something I might/should consider (on Arimidex I have developed osteoporosis despite regular bone-pounding/strength training exercise for 30 years) with demonstrated side benefits for BC. I'll have to think about all this when I return next month. Maybe by then my brain will be functioning well enough for me to figure something out! In the meantime any thoughts you folks have on the implications of the sequencing study would be appreciated. 

    Thank you for all your posts here on these boards.

    Kay 

  • Lindissima
    Lindissima Member Posts: 37
    edited October 2009

    Tender, Otter,Survivor, Jo and all you other wonderful women,,,,

    Thank you for all your terrific research. I am only four months into the Arimidix adventure, but will probably need 5 years to decide whether to stay on it or not. ( I tend to be indecisive...SIGH)

    Just wanted to say thank you for your research and bump up this very informative thread. 

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