How Many are doing 10 years on Aromatase Inhibitors
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I just started Anastrazole about a month and a half ago. I will be on it for 10 years. So far it's not horrible, but I do have arthritic knees which are complaining a little. I'm starting an exercise program soon so I hope that will help!
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I've just celebrated the five year mark since I was diagnosed with BC. Just about done with 2.5 years on Tamoxifen and 2.5 years on Arimidex. Will continue on Arimidex for at least two more years and my MO just ordered the Breast Index Test to see if I am likely to benefit from longer therapy. I have osteopenia and due for my second Prolia shot next month so weighing the bone issues with benefit is important to me. He said it was important to do while the "tissue was still available" at the hospital where my surgeries were done. They are working on the insurance approvals now so don't know when I will have results. Would love to hear from others who have had this test done.
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golden - I will be at 6 years next month and had the BCI test done last December - it took about 2-3 weeks for results. My insurance denied payment but the folks at Biotheranostics do not bill the patient if insurance denies. They have a department that will appeal insurance denial and when they exhaust their internal process, if still not paid, the company absorbs the cost of the test. BCI is a two pronged test - prognostic and predictive - it shows your recurrence risk and the benefit you receive from continuing on anti-hormonal therapy. Unfortunately for me I fell into the 10% of people tested who have both a high recurrence risk and a low drug benefit. Since they were testing my original tumor I asked my MO whether I had received benefit from the five years of aromatase inhibitors I had already taken and he said other than not having recurred there is no way to know if that was the drugs, or luck, or something else. His advice at that point was to stay on them if I could tolerate it, as low benefit is not necessarily zero benefit. I too have bone density issues, pre-existing but worsened by Femara and Arimidex, so have been on Prolia since 2012. Also, important to note that according to the data complied so far by Biotheranostics, less than 6% of patients derive benefit from continuing on anti-hormonal therapy. It worries me a little when oncologists are advising 10 years of a drug that could do harm long term without knowing if their patient is low or high risk, or low or high benefit.
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Deaconlady, feel free to join us on the exercise thread: https://community.breastcancer.org/forum/58/topics...
It's great for motivation from wonderful friends, to keep ourselves healthy through movement. Even if you don't need the motivation it's a great place.
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deaconlady - also, the YMCA has a free 12-week program for cancer survivors of all types, sponsored by Livestrong. Their personal trainers will assess you and get you going - then you are eligible for membership at the Y with the initiation fee waived. I have done this program - interrupted by several surgeries - they always stopped the clock when I could not be there and re-started it when I returned - it is a great program and available in several areas of N. Carolina - check to see if they offer it near you.
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Thanks, patoo and SpecialK! I work for a university that has a free program for employees. I checked into Livestrong, then found out about our work program. I had a gastric bypass 20 momths ago and I've gained some back. This program ought to help with everything given my past history. I'm ready to feel better!
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Well I have 5 pills left and I am done with my 10 years of Femara, and I just got a message from my PCP with my bone density results. I was hoping to escape the 10 years of hormone therapy without getting osteoporosis but I didn't quite make it. I had been slowly getting closer and closer to that -2.5, and my test yesterday put me at -2.7 in spine, -2.6 in femoral neck, and -2.5 in hip, and a diagnosis of osteoporosis. Needless to say I am not taking my last 5 pills and now need to concentrate on getting my BMD reversed. I have no regrets on taking Femara for 10 years because I feel like I did everything I could.
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Special K - Thank you so much for the info. It really helps to know about the two types of scores. Got my next Prolia shot and bone density test scheduled so am sticking with the plan. My insurance has been pretty good at paying for the genetic tests so we'll see if they come through this time. Really good to know about the payment info from the lab company. Thanks again!!
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Farmer Lucy, wow! Yes, we are surgery sisters. I can't figure out it if feels like long ago or a short time. 4 yrs.Kind of like labor. Blocked out a lot of it.Still have very few eyelashes and eyebrows, probably from the Taxotere I've heard. However, I learned how to use eyeliner pencil and eyeshadow to create facsimiles. Not noticeable then. My Lexapro is not for hot flashes, it is for anxiety. Seems to do the trick. I am 61 now.....
Did you know that my sister had HER BMX exactly 2 weeks before me- Feb 15? Hers was preventative... she had already had cancer -lumpectomy, chemo, rads, 5 years previously. When we found out about the BRCA1 pos, she decided to do the surgery to try to ensure that she never have to deal with it again. Her labs were fine on the breasts when they were removed, so no cancer at that time. So far so good! She is 11 years out.
PS just got back from the gym- I'm not an athete but trying to keep up on the elliptical, bike, weights, stretching.
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Lisa - that is so scary. Good thing your docs were at least giving you surveillance MRI's. Not all docs do that.
I'm curious about your experience with Lexapro. I started with Arimidex but had horrible joint pain. I've been on Aromasin now for over 3 years and just recently started having joint pain. A few months ago I was diagnosed with Fibro, but since I've had all these symptoms and others, my new MO wants to do a PET scan. That's fine with me because I've never had any other scans besides MRIs and with all the misc. pain, I'm one big bundle of nerves. I'm thinking if my scan is clear and all's well on the cancer front, I may explore stopping then switching AI's to see if that helps with the pain. Not sure I can handle this for 5 more years, if that's what's decided.
Hugs to all!!
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Hi All, Im still in chemo and researching use of AI's. Due to Hx of clots I cannot do Tamoxafin. Im a bit confused when you all refer to RS and ESRI? I have my pathology report and my oncotype test and for some reason I do not see those referred to.
My Path report was PR+ 90%, ER+ 10%, HER2- 1+, KI67 30% ( On biopsy KI67 was 50%)
Oncotype was 26
I had 4 IDC tumors and 8 cm of undetected DCIS post op in left breast, no node involvement
MO's tell me 10 years of AI's.
Is their someone on this thread that can explain the risk of not taking them based on the numbers above and what RS and ESRI refer to?
Thanks
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SBB - here is some info from BCO regarding RS (Recurrence Score on Oncotype Dx - the 26 you posted above for you), and ESR1 (Estrogen Receptor 1) that should help clarify:
http://www.breastcancer.org/research-news/oncotype-dx-predicts-late-distant-recurrence
As far as calculating risk extrapolating your RS without taking anti-hormonals, my understanding is that it roughly doubles your score, but is somewhat interdependent on how strongly ER+ you are. This is something your oncologist should address with you - he/she has calculators that can incorporate your individual stats and info, factor in different treatment options, and give you some specific info and percentages.
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Yesterday, I got a notice from the Breast Cancer Index company that my "sample" had been received and I'd be hearing from my doctor. Then, in the early evening, I got a call from my MO with the results. I am at low risk for recurrence (don't have the full report but he said 3.5%) and low for benefiting from continued AIs. I haven't been on quite a full five years so will continue the Arimidex until after my next bone density test this fall and when I see him again in January. My next Prolia shot is in September. His sense is to continue it out until a total of 7-7.5 years and see what the research says at that point unless my bones are worse, I have increased side effects, or I just want to stop. He is an "experienced" MO and one of his reasons for continuing is a Tamoxifen study for the prevention of BC that has been going on for 22 years with good reductions in BC incidence (but no change in overall survival). I appreciate an MO that calls me when he should be home having dinner and takes the time for thoughtful consideration and discussion of my test results. Must admit, the idea of not taking anything scares me more than I hate taking the medicine. The bone density test will be the deciding factor for me.
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golden - congrats for being in the low recurrence risk group! Yay! I am in your camp as far as the not taking the med being more scary than continuing it - that is why I am still on it past the 5 years. Due to my BCI results (high recurrence risk/low benefit) my MO said stay on if you can - but gave me the out if I wanted it.
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Hi all,
Looking for some helpful advice as I struggle to make the decision to stop taking Femara before the recommended timeframe of 10 years. I was diagnosed in 2009 at age 44 and started Tamoxifen that August for 5 years and was switched to Femara in August 2014 due to postmenopausal status. I was diagnosed with osteopenia which has me freaked out since it is not reversible so I am deciding between Reclast and Prolia, as well as deciding on whether or not to stop taking the Femara since this has clearly contributed to my bone loss. I have minimal side effects with low to intermediate risk of recurrence based on Oncotype dx in 2009. I feel like you always hear about the "new studies showing positive results for taking AI for longer periods of time" but never hear about the people who have stopped taking them and having positive results without them. Thanks!
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Thanks Special K, I see now the score is called RS. Since I am a 26 I fall in between and low risk and high risk. Was wondering if there are any studies on the intermediate range for RS scores that are intermediate?
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SBB - Oncotype Dx and your RS score assumes that you will take an anti-hormonal, and the purpose of the test is to determine whether there is benefit of adding chemo, I don't think there are any studies regarding RS and not taking an anti-hormonal. Off the top of my head I don't know if there are any studies looking at chemo and no anti-hormonals, but it was one reason I recommended having your oncologist run some of the calculators for you that would factor in your receptors, Her2 status, nodal status, tumor size, etc. Here are a couple that you can do yourself - the PREDICT site is UK so put your tumor size in with mm, not cm. The cancermath site has a pictogram choice for the display - I like it for its clarity. It also has a therapy calculator so you can determine with and without chemo, and with and without anti-hormonals on it.
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Thank you SpecialK....I will look at these.
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I've often heard hear that women with osteopenia or osteoporosis are doomed for it to only get worse. This is simply not true for everyone and I fear it may stop some of you from being proactive in building or stemming bone mass. Certainly this is very difficult while on AIs, but mass can be sustained or rebuilt during and after finishing treatment. Obvious treatments like Prolia, Zometa, etc help. Density can improve after AIs.
Though not cancer patients both my sister and a friend, both very small and fine boned, changed their exercise routines to more weight bearing ones and were able to avoid or stop bone meds. My density only dipped in my 4th year probably because I stopped weight lifting and exercised less than the three previous years.
So don't give up on your bones. You aren't necessarily doomed to decreasing density.
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I guess I'm one of the ones you never hear about, who stopped taking Arimidex after 5 years. When the 5 years came (I think it was Jan 2015) I was expecting to have a chat with my onc about whether to continue but there was no decision to be made. According to her, there was nothing - at that time - that showed the 10 years was helpful. So now I'm 8 years out from my MX, stage 2B, without a recurrence, or so it seems. I also recently had a bone density test, which should have happened during that 5 years but somehow never did. I have normal bone density, just as I did before beginning arimidex. Though I sure did have a lot of side effects including all the stiffness, aches, feeling like I was suddenly 90, and carpal tunnel. Those all disappeared. I used to post as Flannelette but the tech gremlins got me & I couldn't get back on as that so now I'm Zucchini.
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Flannelette! Welcome home! Howlong did it take for the SE to go away for you?
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dimc I had osteopenia before I started treatment at age 49. I went into chemopause but still did 5 years of ESDs (Anastrozole then Exemestane). After 2 years I was diagnosed with osteoporosis (just over the border in my spine). I went on prolia. My hips got better and so far my spine was just a little worse after only being on the drug for 1 year. I will be tested again in October. I did stop after the 5 years due to a number of issues (like broken metatarsal in my foot when just walking) etc.
But if the research does show that it will be beneficial my oncologist will insist that I go back on it. Right now the research shows benefit for those who had a lumpectomy or still have on breast. I did the bilateral.
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I have just had a double mastectomy in July. I am ER+. I am going to get Anastrozole today to start taking it. Kinda scared about the side effects but you gotta do what you gotta do. My doctor told me he would like me to stay on it for 10 years. He said it is because of my age. I am 60.
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Hi Iago, Your comment is the first I've read that ties taking the AI 10 years to lumpectomy vs. bmx. I've got to have this conversation with my doctor in a couple weeks, and am looking for backup for my position of coming off these drugs after 5 years. I'm osteopenic and have had all the side effects you can have (monster hot flashes, weight gain, joint pain, thinning hair, bone loss). Where did you see the info on it not benefiting if you'd had bmx? Thanks.
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It's not that it doesn't benefit BMX. We don't know that yet.
The research says it benefits those with breasts, lowering risk for a new breast cancer to form. The studies have not been going on long enough to prove those of us who have had a BMX will not receive benefit.
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LadyinBama, I'm right at the end of my five years of Arimidex so I'm also in information gathering mode before I see my MO in a few weeks.
https://community.breastcancer.org/forum/73/topics...
Here's the thread about the study that was delivered at ASCO in June. There are multiple links in that thread that are all worth following.
The one I found particularly interesting is a conversation among MO's about how the information coming from the study would be presented to their patients.
My MO would have to provide me with some pretty clear numbers about my personal risk reduction to make me consider continuing on. I've already left a note with his assistant that, if he is considering it, then I'd want to have the BCI test before making a decision, even if I have to pay for it myself. I have had a BMX and have been miserable on the AI. I've stuck it out for 5 years with many side effects that have significantly reduced my QOL and, frankly, I don't want to do that any longer. Also, I'm very concerned about the drug's toxicity in longer term usage - especially on cognitive ability. All my maternal female relatives developed dementia as they aged and that is something I don't want to hurry along.
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Wow, interesting. I didn't even know about the BCI test. I did have Oncotype but that just determined whether I would have chemo or not. With a 31 or 32 (can't recall) it was obvious I would have chemo despite the clear nodes.
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Hi Famerlucy - I can't remember! LOL. ok - the carpal tunnel came & went during my 5 years, but i'd worn wrist braces at night from the get-go thanks to some advice here. About 2 & 1/2 years in I so wanted to stop! But knew I couldn't. Hair loss a big thing - I'd say I have about 1/2 or 2/3 my former head of hair. Not that it FELL out. Just that it stopped sprouting. So, I have very short, super-chopped hair & use men's grooming clay so I don't look like I have a Beatle cut. The hair never regrew but I've got the same amount of hair as when I stopped Arimidex.
The feeling like 90? stiff legs? can hardly move out of bed? I'm now 68 and arthritic so these are hard to tell considering I also aged 5 years, but over the months it all kinda just faded away -nothing abrupt. I'd say it was the worst around year 3 then no new se's made themselves known. When I think back, it was pretty darned awful at times & I know I'm way more limber again now, despite the arthritis. I have no aches or pains at all except after lifting heavy things too long.
it's nice to see some faces I remember! like lago! still with such clear advice. I do have 1 breast but i guess that was of no concern to my onc. It's very, very rare that a woman will develop a new bc in the other breast, but it can happen, my surgeon told me. VERY glad she cut me off at 5 years. Knock on wood, of course.
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Says she on her way to do her weekday lifting......
The big thing I noticed about this study was that the headlines were designed to garner attention for the writers as opposed to being informative for patients. Contralateral breast cancer is much more of a risk than risk of distant metastases (which is much more my concern). Overall survival is the same for both groups.
This suggests that they had to lump together two different data sets to obtain significant findings. I really think that exercise and aspirin therapy hold a lot more potential benefit for me at this stage, 1.25 years after finishing 5 years of anastrazole. True, I tolerated it well, but I don't see a major benefit in getting tested and then potentially doing 10 years.
No information at all on the subset of patients who get tons of exercise. True, only 3 miles of walking today, but I am cycling to Vancouver BC this coming weekend, or 184 miles over 2 days.
Dr. Eric Weiner of Dana Farber cautions about "over treating" in the face of significant side effects.
I will discuss all this tomorrow when I do my annual oncologist visit, but it would take more like a 5% benefit in distant metastasis to convince me than the 1% benefit from this study.
My weights...and then a trout dinner...await. - Claire
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BCI test…my oncologist said it is not currently not recommended by the community:
"This test was developed and its performance characteristics determined by Biotheranostics, Inc. lt has not been cleared or approved by the U.S. Food and Drug Administration. This test is used for clinical purposes. lt should not be regarded as investigational or for research. How this information is used to guide patient care is the responsibility of the physician. Biotheranostics is certified under the Clinical Laboratory lmprovement Amendments of 1988 to perform high complexity clinical laboratory testing." source: http://www.answersbeyond5.com/
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