How Many are doing 10 years on Aromatase Inhibitors
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I felt that way too..patoo, plus it makes me nervous about taking a break.
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if you research breast cancer and drug resistance there is quite a lot of information about it, seems our bodies become resistant to the drug and the cancer finds a way around and sets up shop again. This can often happen whether you stop the drug or not.
I have had a number of breaks in femara over the last 8 years because of side affects. Once the side affect abates I start on it again and this has been at the suggestion of my oncologist, he thinks better to have a break and then go back on it rather than toquit all together.
Ched
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There is a test called the Breast Cancer Index Test that shows if one needs to remain on meds for an additional 5 years. This test is to Tamoxifen and AIs what the Oncotype DX test is to chemo.
I've had the test done (it is done on the original pathology specimen) and I won't need the additional 5 years.
You can learn about it here:
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aussieched - thanks for that info, I think that my MO finally said he would work with me on taking a break because he was afraid I would quit all together. He said 4-5 weeks and if I insisted until after my daughters wedding on January 2nd. How long were your breaks, and did the SE's come back as they were before the break?
radgal We talked briefly about the BCI, but he said that I don't need to take the test for him to know that I fall in to the group that should take it, because of aggressiveness of cancer, size of tumor and lymph involvement - no gray area for me.
Also was not given the Oncotype DX test for the same reason. Both my MO and BS are always glad to see me, they've both said they really never expected to see me NED this far out. So yippppeee for that, just wish I wasn't left with so many side effects from all the treatments. 0 -
Linda I believe it's the size of my tumor that puts me in that 10 year category too. No nodes though
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Hi LindaKR, as mentioned above I have had a number of breaks during the 8 years, but particularly in the last 4 years as the side affects really took hold after about 4-5 years.
The biggest problem was that I developed vertigo, and after numerous visits to GP and ear nose and throat specialist, they could not find what was causing it. I kept saying to my medical team that I thought it was the Femara, and finally my oncologist listened to me and confirmed that it was a very rare side affect of Femara and the only way to know was to have a break and see if it was the cause. He initially told me to have a 4-6 week break and see if there was any difference. At the end of the 6 weeks I was not better however I thought that I was starting to feel a bit better and was not having as many episodes of vertigo or as severe as originally.
I went back on Femara and the symptoms started to get worse again. Without further consultation from the oncologist (as I live almost 500 kilometres away from him) I took myself off the Femara and had a total of 9 weeks of it. At this stage the vertigo went away and I felt like my old self again.
I then went back on the Femara and haven't had a bad episode since then. I occasionally start to fell it coming on a bit, but I am still working full time and have coped, and it is certainly not an issue at the moment. I proved it was definitely the Femara.
I had a further 4 weeks off Femara a couple of years after that, as the pain in my hips when I walk had got so bad I had to give up my daily walk and can no longer walk along the beach for exercise. The 4 weeks break did not make any difference to the hip pain ,and I was reluctant to have any further time off the drug, so I just battle on with the pain when I walk. My bone density loss has been quite substantial in the last 2 years so not sure if the pain is from that or from the Femara.
We did not have the Onco DX available to us in Australia when I was diagnosed, so I have been flying blind with my treatment somewhat, and not having had chemotherapy I feel I need to push on with the drug for 10 years if I can. Because of the hip pain they have suggested I might go on Tamoxifen for the last couple of years to complete a total of 10 years. The main reason for me to change would not be for the pain issues, but because the Femara is causing a lot of bone density issues.
Ched
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aussieched Thanks for the info. My bone density has been ok so far, but my osteoarthritis has increased a ton. I know that AI's do not cause osteoarthritis, but I think that they fail to address the fact that estrogen can slow OA, and if that is the case, I believe that AI's can accelerate existing OA, just like it accelerates wrinkling, vaginal dryness, etc... Once, a while back, my nurse practitioner told me that if I hadn't had hormone positive breast cancer that all of my symptoms, joint pain, etc... would be helped by HRT. So if that is the case, then the opposite should be true also, correct? And there is a new test available that can help the MO's decide whether or not taking the AI longer would be of benefit - http://www.answersbeyond5.com/. I would think it's available in Australia now too. My MO said that I would definitely fall in the group that would benefit. The video on that website was really informative on risk factors.
lago - sounds like you are in the same boat that I am, figured you would be.
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My PCP is a little concerned because bone density recently showed early signs of osteoporosis(sp?) so will discuss with my MO in 2 weeks if I should switch from anastrozole to Tamoxifen (or another?). But Tamox may have issues with blood clots? Wonder what other SE's are people dealing with on Tamox and what are the alternatives to Tamox and their SE's as well. Frustrating.
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patoo I was diagnosed with osteoperosis 2 years ago. I'm on Prolia. My MO doesn't want me to switch to Tamoxifen.
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Interesting, thanks lago.
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How often do they check your bone density? I've been on arimidex a little over one her. I have an appointment with my MO soon. Should I expect a DEXA yet?
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Debiann, it is best to get a base line DEXA when beginning an AI. Then most women get tested every two years after. However, my onc has me get the DEXA every year since I have been taking an AI for over 10 years.
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My MO was testing me every year till I was diagnosed. Now that I am being treated for osteoporosis she tests me every 2 years. Not sure if that was because I was osteopenic from the start. IMO I should have started with treatment before I was officially diagnosed with Osteoporosis. My spine was close enough in osteopenia
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I get tested every 2 years, so far I've had 3 dexa's, one at the beginning of taking the AI and 2 more, they've remained stable.
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I think the usual 'standard of care' for Dexa scans is every 2 years (or that's what my last MO said). I had one sometime during my first year on Arimidex, another 2 years later. My new PCP just had me do one and my spine shows signs of osteoporosis so will discuss with my MO whether to switch to Tamox/another AI or stay on Anastrozole and take bone strenthening meds. Not sure when they will suggest another Dexa.
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I am so thankful for this great thread and the sharing of information. I am now finishing my 8 years on the AIs. I had the BCI test which did show benefit of remaining on the AIs for 10 years. I see so many women on this website that are ER/PR + and who now are mets after 10 years. Thanks for the info about the SOLE study. I had no idea. Good luck to all.
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BTW, aussieched, I too had vertigo from Arimidex. I frequently have the feeling of just coming off a ship. I have seen others on this website who state they have the same symptom.
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I have been on Arimidex and Femara over the years and I still get occasional dizziness. Even when I am sitting down the room will take a very brief spin.
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Somewhere on this discussion board I remember a journal article that a member posted that claimed taking a break from anti-hormonals for a few weeks from time to time actually avoids the resistance possibility....but I can't remember where I read that.
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Morning ladies. I'm lurking this site right now as I'm coming to the end of taking my medication - 5 years up in February 2016. I need to be informed on this topic. My oncologist is an expert on Als (Femara) so I need some knowledge.
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JudiH my 5 years is in April. Will be discussing again then. You might get a pass since you are node negative and have such a small tumor. My MO considers me high risk due to tumor size.
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Thanks lago. Actually, last year my oncologist spoke about take Femara for 10 years. I was really surprised since she initially said "5 years". Last year she backtracked and recommended 10 years but then said "oh maybe not, we will talk next year". TBH, if it's another 10 years I'm o.k. with it but I'm always afraid of "c" coming back.
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FYI, the San Antonio Breast Cancer Symposium will have a discussion of continuing the AIs and at what cost. "
Over the past several years, new data has emerged which shows the added benefit of more aggressive endocrine therapy for both pre- and post- menopausal women. With increasing use of ovarian suppression in pre-menopausal women and extended adjuvant endocrine therapy across the board, we are seeing subsequent increased toxicity. While these more intensive treatments do offer benefit in certain high-risk populations, they can also significantly decrease quality of life for many women. This talk will discuss how to carefully weigh the risks and benefits of an increasingly aggressive endocrine therapy approach for each patient. We will also discuss how to tailor treatment options to the individual patient and her cancer.
"
Tuesday, December 8, 2015 6:30 PM0 -
Yup and that will be the discussion I will have with my Oncologist in April when I finish 5 years. So far she considers me high risk due to tumor size and wants me to continue
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Thanks Aug242007. Looking forward to any information you can bring back to us.
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Weighing in...I just finished 5 years, the first 2.5 on tamoxifen, and the next 2.5 on an AI, Femara, after becoming post-menopausal (oopherectomy.) My onc wants another 2 years on Femara for a total of 7 years of hormone therapy. I'm ok with this, not loving the SE's, especially the high cholesterol, but overall really ok. I'm curious how many of you are considering the BCI test. This is the first I hear of it. Is it widely used, like the oncotype test? Do most oncologists recommend it? Reliable? Thanks!
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How long do they save the original tumor tissue for sampling? I’m wondering how I could be BCI-tested 5 yrs. down the line, since it requires the original tumor tissue sample, and I don’t know how much of it remains after OncotypeDX testing. I am also seriously considering raloxifene rather than Femara, if I am not at greater risk for blood clots and might be able to get a hysterectomy to lessen the chance of a uterine sarcoma (although sarcomas can still occur in retroperitoneal tissue absent a uterus). I’m already osteopenic in both hips (-2.1 in my left hip, which is on the cusp of osteoporosis); and have arthritis in both my cervical and lumbar spine. I cannot take the side effects of bisphosphonates (the esophagitis they cause might turn my preexisting GERD into Barrett’s esophagitis and then esophageal cancer--a horrible way to go; and I already have some oral bone loss due to long-term gingival disease despite careful care). And I’m afraid of the immunosuppressive effects of biologics/monoclonal antibodies like Prolia, due to my multiple antibiotic allergies and asthma (which turns most of my colds into bronchitis). The latter comorbidity was why my MO was reluctant to recommend chemo even before my OncotypeDX score came back low-ish.
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green...my cholesterol numbers are creeping higher, so my internist/cardiologist did a sono of my carotid artery. The results were beyond excellent, so he told me to forget about my cholesterol numbers! He said because my blood pressure, glucose numbers, weight and the fact that I exercise every day, he thought I was low risk of having a heart or stroke issue. Glad he is not treating me by numbers! He is looking at the individual! Yay!
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Very good to hear, thank you!
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yes, re cholesterol: no one in my family has high #, I'm thin, don't smoke, am an exercise fiend, and mostly vegan. My good cholesterol #s are high, but so is my bad. But my PCP said not to worry about it because my good cholesterol is so high. I also think that stress can cause #s to rise. AT any rate, I'm already kind of sick of taking aromasin-mostly because it seems to cause me to be a hyper-managed patient by my health care team overall--and I'm so over someone hyperventilating at any shift in any # or test of mine, away from the norm, a bit.
Since chemo my white count has fluctuated--better in the summers when I don't teach, lower during the semesters when I do. And I've had to switch primary care (third new doc) in three years, so each new person freaks out about something they see on my record. And I'm so over it.
Well, I have 2 more years before I hit the 5-year mark, and maybe by that time there will be research that claims 5 years is really all we need. It seems to change all the time. My MO did claim because I'm high risk (see my status below) I should plan on 10. That doesn't mean I'll take her word for it, depending on where I am in 2 years. Till then, I'll be here, bitching on this board
Ladies, we are all amazing women who are persevering post-b.c. Remarkable that any of us can even do 3 months on any AI. Speaks to our strength. Way to go; I'm grateful for all of you, knowing you are all out there and that I'm not the only one going through all this.
Hugs
Claire in sunny but COLD AZ: 23 degrees as I type
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