How Many are doing 10 years on Aromatase Inhibitors
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Miso - why arimidex at 43? We're you post menopausal then or unable to take Tamoxifen?
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My onc has never discussed if I am Luminal A or B. Good question to ask.
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Aug - probably unlikely you are luminal B, being Grade 1. Not saying it couldn't happen, but it is defined by Er+ and high Ki-67. I've seen correlations between high (>12%) Ki-67 with intermediate to mostly high oncotype scores and I've seen high correlations to high oncotype scores with grade 3 and some grade 2s. So via the transitive property......
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I've been reading through this thread for a couple days...Yes with all the interruptions and kids' schedules, not to mention concentration issues, it has taken me this long! Haha! But I'm so glad to have found it.
Here's the scoop-I have been on Femara for a little over 4 years with my 5 year mark being July 2014-and you can bet I'm counting the days! I hate it. I am 35 but easily feel like I'm 95. I'm would go through the list of side effects but they've pretty much all been covered so I won't bore you;) My onc that I've been with since day 1 has moved on to another cancer institute (my worst fear ever, and yes I was devastated). So last month I had my first appt with my new onc. I almost walked out the door when he said that he wanted me to stay on the Femara for 10 years...kidding, but still... The look of shock and depression must have shown on my face because then he said, 'well, we could switch you to Tamox at the five year mark if you'd like, but we can make these decisions as it gets closer.' UGH! Are you kidding me?! I was SO looking forward to being DONE next July!
I don't know what to think, really. Of course, I want to do what's best, I was just so disappointed:( So I was thankful to find this thread and read all your thoughts and opinions on the matter. It's always so nice to know that we're not alone.
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RunnerMom, welcome to our discussions on 10 years of AI. You are not alone in being blown away by the latest news we are being told about extended treatment. You are so young, so even though you need to make your own decisions, however if it were me, I would be doing the 10 years. You need to give yourself every chance to keep recurrence free.
I am 24 years older than you, and I am seriously considering the 10 years of at least something. I will have completed 6 years of Femara in December, and I will then need to decide if I continue, or as offered by my doctor, switch to tamoxifin. I didn't do chemo as my docs didn't feel it was necessary, however hindsight is a wonderful thing, and I now feel after doing lots of reading in the last 5 years, that I should have done the chemo. Yes the side affects of AI's are terrible, however nothing in comparison to when you read the posts from the ladies in our stage 4 group. They are true warriors and I am in awe of their strength and courage. I don't want to end up in that group, so for the time being, I will do what I have to do, if it means it gives me more time to put back recurrence.
Even if you do 6 or 7 years of AI, and maybe by then there will be more information out on the true benefit of extending past the 5 years of hormonal treatment. Best wishes
Ched
Did you get a benchmark of your bone density when starting Femara, so if your bones are olding up, I would be considering continuing the Femara.
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Oh I'm sure I will do it, I am just bummed! Haha! And yes, any side effects pale in comparison to those I know who are dealing with stage iv. What a perspective-changer, huh?
My onc has been watching my bone density since beginning Femara. It has always been good, but I still have bone issues. Four broken ribs (on non-radiated side) and stress fractures in femurs and fibula. Now I am a runner, but I've been running less and less over the years (doing my cross-training, less impact exercise) and still have these issues. He has no doubt that it is due to the treatments, but bone density is the only way they have to measure, and it's still looking good. He had me see a bone specialist earlier this year and every blood test she ran to check on the health of my bones came back perfect, so she wanted to do a bone biopsy to check on my bone characteristics and see if something showed there. However, I can't am not a candidate for the meds for it since I am a breast cancer patient. So I opted to wait and just see how things go, and if I have more issues.
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I started femara 14 months ago....oh boy lots of muscle and bone pain. However, if it keeps recurrence away..I will do my best to deal with the side effects. If it works ten years for me..if it helps me get to ten years..I will be grateful. My best friend, st2, some nodes involved has just finished femara after ten years. She's eleven years out. So...I'd feel blessed to have a drug help me see ten more years.0 -
Hi Theresanne,
I am interested where you quoted above that your friend took femara for 10 years. Obviously her Onc was very progressive in allowing her to take it for 10 years back then. Was she very high risk for recurrence, or was it her own decision to take it for 10 years. I am interested as I am in my 6th year and there appears to be mostly negative information on taking Femara for more than 5 years, even now. Most information is saying that "they just don't know at this stage, and think it could cause other potential medical issues".
thanks for keeping this thread going.
Ched0 -
Hi, everyone!! I am taking aromasin! My onc in Chicago told me that I could stop after being on it for 61/2 years! That was in November of 2011! Since moving to CA in 2011, my new onc put me back on it, after an 8 month respite!! She is suggesting a total of ten years!! After stopping and staring the aromasin again, th side effects have been much easier0 -
Runnermom, I'm curious, excuse me if you've said this already and I missed it:
why are you on Femera if you are /were premenopausal at diagnosis? Were you unable to take T or did you switch after surgery0 -
Hi Kindergarten, thanks for posting to advise that your new Onc put you back on the Aromasin for a total of 10 years. Did she say her reasons for doing so, or the main benefit of continuing on. I haven't been able to find any clinical trials to say that they think there is a benefit of the AI's for 10 years, only for Tamoxifen. Have you found that your bone density has dropped much on the Aromasin? I don't know if my bone density will hold out for me to do the 10 years of Femara.
thanks Ched0 -
I would be interested too, because as far as I know, studies are not complete and no recommendation for 10 years of Als has been made based on research.
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Perhaps my experience is similar to Runnermom's. I too was premenopausal when dx so was initially put on tamoxifen. I entered a chemo induced menopause and also had my ovaries removed and was then switched to Armidex.0 -
pip57-just your ovaries removed, or your uterus too? Because I was put on T, premenopausal at diagnosis. I had a hysterectomy and oopherectomy but my MO is keeping me on Tamoxifen.0 -
hysterectomy too. I was changed over to arimidex then. I did not tolerate the tamoxifen very well.0 -
Jessica - sorry it has taken almost a month to reply to your question! I had Arimidex at 43 because I insisted on having an oopherectomy to push me into menopause. I didn't want to take Tamoxifen having read about how poor metabolization can affect its efficacy in some patients.
So it is now crunch time for me - the moment I have been dreading for 5 years. I am 6 weeks away from finishing Arimidex. I am due to have Dexa scan next week and then meet oncologist to discuss options for continuing beyond 5 years. I am really reluctant to stop just because there are no hard and fast answers yet.
Has anyone acquired any more info on this Arimidex duration thing yet?!0 -
jessica749, I was premenopausal at diagnosis so until I had my hyst/ooph, my onc put me zoladex shots (to suppress ovaries) and gave me the Femara. After my surgery, I didn't have to do the shots anymore.
Sorry it took me so long to reply!0 -
thanks for above responses/clarifications. I was curious because, as I've mentioned, my MO has kept me on T even though I had hysterectomy/oopherectomy about a year ago. I didn't as why re no change from T.
I suppose MO would have switched me had I been having bad side effects, but it's all been pretty tolerable. Maybe the thinking is 10 yrs on T, then switch? (My wishful thinking). I suppose I could ASK as to the thinking behind it at my next appt...but I figure it's of the "if it ain't broke, don't try and fix it" variety.0 -
I just saw an onc today, and it turned out to be my last visit........in Jan my 5 yrs on arimidex is up and she had no intention of having me continue. as ruthbru said a bit back, there is no research to conclude that 10 yrs is better than 5. I was expecting a lengthy discussion of pros & cons & to be given an option. Nope. After 5 she says she begins to be concerned with long-term ses such as osteoporosis, high cholesterol, heart stuff. I started out my question by saying something like "I understand there is controversy........" and she said there is no controversy at all. She was interesting because I'd never met her in my 5 yrs at that cancer centre and that's because she's mainly a researcher, and does clinics for the overflow of patients like me who are just there to be followed up. she said it's a very exciting time for research - they have discovered at least 10 breast cancers each with its own personality and modus operendi (sp) such as mine, the giant slug that doesn't go anywhere, vs the teensy monster that loves to travel, and so on - anyways she thinks in 10 years we'll have a much clearer idea of how each should be treated, so we are not giving unecessary chemos etc. So she suggested that on New yr's i have a goodby arimidex bonfire and burn any remaining packaging (but not the pills as they might be toxic to inhale lol). I walked out of there quite happy. Maybe (except for the arthritis) I'll become limber again, soon!0 -
Awesome, flannel!
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I see my onc tomorrow. My latest bone density results will probably be the deciding factor. I will let you all know what she has to say.0 -
Hi Flannelette, thanks for posting the outcome of your Onc visit today, and what she said regarding continuing further than the 5 year mark. Food for thought for me, seeing I am about to complete 6 years in December. I have been so undecided as to what to do, as the decision has been left up to me by my Oncs. The only concern I have for me is the positive gland and no chemo. Looks like I have a bit of serious thinking to do on how I move forward.
Ched0 -
I think continuing on the AIs also has to do with age. My onc also is a researcher at Vanderbilt and states that the AI should be offered. My dx was at 51 yrs of age.0 -
I too, though relieved, am not entirely easy. I mean, I'm fat! and fat produces estrogen, esp round the middle where I am fattest of all. so, she suggested, I might limber up and lose weight by excercising. huh? I muttered. In a way, I'm glad I've met the oncs I have. I never once had to make a decision. they just did everything, thoroughly. By the way, I think that australia is probably farther ahead in cancer treatment & research than Canada & you have excellent health care. I had no nodes and only 10% ER so maybe that makes it a bit easier for me to walk away from AIs (knocking on wood at the same time).0 -
Well there is no way they are going to convince me to stay on it. 52 and now have osteoporosis in-spite of all the calcium, D and exercise. Screw that.0 -
So interesting, Flannelette. Ten years from now sounds exciting. I'm only seven months into arimidex, and just a hair away from osteoporosis, so newly looking forward to being kicked off in about 4 1/2 years!
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My onco had told me at my last visit in June that I could end after 5 years...been counting the months! Course, she wants to sneak one month into it end in Jan instead of Dec which is when I started
I am stopping, I want to see if the dang feet will improve0 -
I like that Flannel's onc took a "whole body" view, thinking about the risks of long-term SEs from AI use like osteoporosis, high cholesterol, etc. Oncs are trained to fight cancer, and I think some of them get tunnel vision and focus solely on the risk from cancer recurrence, without weighing the other risks that treatments could pose to the patient. I like that instead of just doing a risk/benefit analysis just on cancer, the onc looked at her overall risk/benefit from the continued use of AIs.
Hey Flannel - will we see you over on the Let's Post Our Daily Exercise thread in the Fitness section soon? We'd love to see you there!
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the only exercise i love is swimming. In real water. so I did that this summer in the St. Lawrence River at my swimmin hole & joined you guys for a few weeks, running & jumping, diving, standing on my hands. ah, the lovely release of water which buoys you up & allows you to bend. So, i hate the gym, will waste $ on an elliptical, hate the grey of November. the ONLY thing I can think of is robbing a bank then flying to the Turks & Caicos where I can just fall into the ocean..........oh, i wish....0 -
Just saw my own onc and another visiting onc. My last bone scan was excellent. My cholesterol is excellent. My side effects are manageable. And...I am still here almost seven years after dx even with a questionable prognosis. (See below). So the decision to continue with arimidex was an easy one for me.0
