How Many are doing 10 years on Aromatase Inhibitors
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I am a bit concerned. My onc said flat out no, there is no scientific evidence for more than 5. Yet other, good, oncs are scientists too, and suggesting 10. HM. I wonder, is there any pattern? Like for instance do Canadian oncs tend to follow the Brits whereas the Americans tend to follow - themselves? lol or what? like, I seem to notice more FEC in Canada than the US. or maybe I'm just making that up! I feel kinda scared, going off into no care land, while relieved. ambivalent i guess. Looking at Indole 3 carbinole, for instance.0 -
Flannelette, perhaps your node negative status doesn't warrant the risk of continuing on AIs.
You are correct about more FEC being used in Canada and UK. I have heard many different reasons but our govt tend to follow tx that are well documented. I have also heard that FEC does not allow for profit centres to make as high a margin. That may be the deciding factor since our govt also negotiates with the drug company for the lowest prices.0 -
pip57 when my NP told me that I might be doing 10 years she said although I had no nodes the issue was having such a larger tumor (5.5cm). She didn't say I would be doing it but by the time 5 years is up they would know. Last April she said it looked like the research would eventually confirm but at this point it has not. So flannelette, because we have such large tumors it might be an option but I don't think my onc will recommend it unless the research supports it.0 -
I was told the same thing. It really is frustrating that they don't have the results in yet. I would agree with you about the large tumour size. They do put a lot of diagnostic significance on the nodes even though we all know that the cells have other ways of travelling. I don't envy the position you are in.0 -
Ched, so sorry for my late response, I just pm'd you!!!!0 -
Hi Kindergarten, thanks for your message, much appreciated.0 -
I would imagine that for those of us going off now, after a few years there will be studies finished, and if it looks like 10 yrs is better in certain cases we can always go back on. Maybe they could measure our estrogen levels & see what's what then use that as a guide? In the meantime, there's indole-3 carbinol, available in Canada in what I believe is a high-quality Canadian product called Fem-Med - high in I3C. I began to use it (was recommended by my gyn who had a private practice using bioidentical hormones rather than HRT) as soon as it appeared I might have cancer but stopped once I got into active treatment, or maybe i even used it up to starting arimidex - can't remember now.0 -
Yes, we could go back on at any point if we wanted to. But I must say now that I have been off for over a year; my cholesterol is back to normal, my blood pressure is nice and low, & I think my bone density is going to come in as actually improved (DEXA in January), it would take some pretty convincing stats for my own personal benefit to make me go back on again.
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HI everyone - some very interesting comments and experiences.
The decision to continue Arimidex seems to depend on staging ... and the personality of individual oncs! Some are very evidence driven others are mavericks.
I was stage 1b and node neg but was grade 3 and had a lot of LVI. And it was my second time around with cancer.
The news about the osteoporosis has hit me very hard indeed - I am not yet 50. We already have osteoporosis in our family and I watched my grandmother die of a broken spine. I have also watched my mother lose 5 inches in height. (They both had hysterectomies in their 40s). How much of the bone depletion is caused by AI and how much by the oopherectomy I will never know.
I would dearly love to stop taking Arimidex - it has been a long and difficult 5 years. But I am terrified of going solo.
Perhaps in years to come they might find that there is efficacy in taking the drug say for 6 months on and off. True, there is always the opportunity to go back on it if the findings are compelling - and there is always the faint hope of a total cure someday. It has to come eventually.0 -
Does anyone know of any clinical trials either in progress or in the pipeline for those who continue Arimidex (or other AI) beyond the 5 year mark?
I am now seeing a NP instead of my onco and she never has any opinions or answers to questions I have regarding studies on whether we should continue the AI after 5 years.
I am hitting the 4 year mark, so I really appreciate the info sharing on this thread.
I am very favorably disposed to continuing because I have maintained strong bones, (up til now) and almost no side effects from the AI, except for some memeory loss.0 -
Does anyone know of any clinical trials either in progress or in the pipeline for those who continue Arimidex (or other AI) beyond the 5 year mark?
I am now seeing a NP instead of my onco and she never has any opinions or answers to questions I have regarding studies on whether we should continue the AI after 5 years.
I am hitting the 4 year mark, so I really appreciate the info sharing on this thread.
I am very favorably disposed to continuing because I have maintained strong bones, (up til now) and almost no side effects from the AI, except for some memeory loss.0 -
Hi all!
I just got back from seeing my onc, and reminded her that I am now on my last 90 day bottle of Arimidex. I was really excited, as she had just cleared me on my latest blood tests and dexa. Then she informed me that I would need to stay on it for 2 more years, possibly 5, if the research indicated. I am really upset, as I was sooo looking forward to getting a few of my hormones back! My SEs are not horrible, but my memory seems to suffer the most, while the other normal SEs such as hair loss, joint pain, dryness everywhere, are always present. I don't even know if they'll get better, since I had an oophorectomy and am 51 now. But I sure was ready to find out!j
Guess I'm just ranting, but thanks for the articles, I really have to make a decision on this.
Deen0 -
TxBadBoob - I just saw that you are brca2+ with a grade 1 BC - that's unusual. Did you ever have an oncotype test done?
Saw my MO yesterday and I'm not sure if she was kidding me, or not, but she said "With your Oncotype score, you need to stay on Aromosin (exemestane) the rest of your life." This isn't the first time she told me she would recommend me staying on it for more than 5 years, once "the studies" are in (in for Tamoxifen). I'm 4 years away from that decision, though.
Edited to add - she did caveat a bit because my highest risk of recurrence is year 2-5. I didn't pursue that much.0 -
Badboob - yes, you have to make the decision, unfortunately. Mine was made for me by my onc. No. No evidence yet to indicate 7 or 10 years better than 5, and she's primarily a researcher. Gotta think of heart, cholesterol, bones etc. Boy was i suprised! but then I' was also only 10% ER+...maybe that comes in? anyways, am now looking into indole 3 carbinol, green tea, sulphoraphanes in the cabbage family, turmeric with black pepper, and so on. Too weird & a bit scary doing nothing. You have to wonder what all these different oncs are reading. we seem to have a lot of drs from different parts of the former British Commomwealth in Canada - I wonder if they tend to follow some sort of alliance - the brits, canucks, ozzies & new zealanders tend to go one way and the americans the other?? just something i wonder about...not many US trained drs would work here, they all go the other way where there's more money.....0 -
""With your Oncotype score, you need to stay on Aromosin (exemestane) the rest of your life."
My Oncologists words to me exactly.
Do the side effects ever get any easier?
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erinm216, did you have chemo?
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No chemo my Oncotype was 4. No radiation either.
That's probably why I guess.
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I have lost 3 inches in height at age 77. No idea how long I had osteoporosis until I was diagnosed at age 70 as "having the bones of an 85 year old!" Nice!0 -
erinm216 - I just can't figure the statement from your oncologist "with your oncotype score you need to stay on Aromosin for the rest of your life", I would have thought a score of 4 to be a good score. Unfortunately I don't even have the oncotype score to help me made a decision on whether I continue on femara, as in Australia I didn't have the option of the test. I see my oncologist in a few weeks, so I need to decide whether I continue on after completing 6 years of femara. Bone density falling dramatically now. It held up well the first 4 years, but the last 2 years has seem quite a drop, however oophorectomy would also be contributing to that decline.
Ched0 -
Aussie - I was confused about erinm's statement too, but perhaps the thinking is that low oncotype scores have recurrences many years later - 10, 15, 20 years if there will be a recurrence at all? I don't know; one possibility.0 -
I do not understand why oncologists would be encouraging stage 1 women to stay on for more than 5 years without any studies saying that it is effective after that point!!
What your doctor said about staying on because of a low oncotype score doesn't make sense. The lower the score, the lower the risk that you will have a recurrence, which is why people can skip chemo in the first place.
Also, osteoporosis is an extremely serious disease in itself. How your bones are holding up should be an important part of the conversation with your doctor: "If osteoporosis is not prevented, or if it is left untreated, it can progress without causing any pain until a bone breaks - most likely the hip bone, a bone in the spine, or the wrist. A hip fracture invariably requires hospitalization and major surgery. Hip fractures generally lead to serious walking disability and sometimes death if left untreated. Fractures of the spine or vertebrae can sometimes result in loss of height, severe back pain, and deformity."
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flannelette if my math is correct 10% of a 6.5cm ER+ tumor is the same as a 6.5mm tumor that is 100%. I'm 30% but my (invasive part) was 5.5cm. Size does matter.0 -
Absolutely Ruth! I have broken a wrist, a hip, 3 vertebrae and an arm - all in the last 5 years. I also have a dowager's hump in my spine from collapsed vertebrae. Luckily I am still able to jog and have no pain; for which I am really grateful.0 -
I don't know why some doctors are saying 5 or 10 years. I am entering year 7 and will take it a year at a time. It will depend on bone density, manageable side effects and, of course, whether or not it appears to be working.0 -
Pip, being stage III, that makes total sense.
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it's my understanding that my being being low just informed the dr that the risks of chemo outweigh the benefits.
I consider aromasin to be my chemo0 -
I read somewhere that the hormonals are considered a type of chemo.0 -
Yesterday, my MO said it has nothing to do with Stage - it's how aggressive the tumor biology is. If you've had the oncotype test, you will know. If you are Grade 3 and/or have your Ki67, you might extrapolate. If you are Triple Positive or ER+ PR-, your tumor is more aggressive than the Luminal A ER+ PR+ subtype. Ofcourse TN is aggressive, but they don't take hormone blockers. I suppose one should also consider other risk factors - age, if overweight/obese, cholesterol issues, etc..
As my other MO/Gyn said, "Chemo gives you this much," holding her thumb and index fingers about 2 inches apart, BUT "Hormone blockers give you this much," holding her 2 hands 2 feet apart.0 -
Hi Kam170
Thanks for your post regarding what your oncologist told you. I am interested to hear her comments, as my oncologists (both men) never give any information on the reasons why I should continue the femara only to say they have had many women with better prognosis than I do, still have recurrences. So that frightens me into staying on it a bit longer. Just finished 6 years and will be seeing the onc in a few weeks.
I always go to the appointment armed with many questions, but they seem evasive with their answers, and seem to sit on the fence, saying it is basically my decision, but it is hard to make that decision without their input, after all they are the experts. They haven't really discussed the biology of my tumour and being in Australia, I couldn't have the oncotype test. I do know that it was a Luminal A ( I found that on my pathology results ) and basically have done my own research, but that information can also be conflicting at times.
Ched0 -
Ched- Its so weird when doctors are evasive or just don't give you straight answers- here is a tactic that might work when you see them next.
Ask them what does the latest research say about recurrence and long term use of aromitase inhibitors. Its nice to know what they are seeing in their practice but its much nicer to know what studies are out there and what the preliminary research shows
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