How Many are doing 10 years on Aromatase Inhibitors
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Very interesting articles on this whole issue. My 5 years was up 3 years ago, and I stopped Femara at that time.
From everything I've seen so far, especially given that I had a BMX, these results are not showing enough additional benefit to convince me to start up again, given the issues I had while on Femara (bone loss, nasty s/e and QOL issues, etc.). Also the studies aren't showing any survival benefit thus far which is an important factor in my personal risk/benefit calculation.
At this point, I am still comfortable with my decision to stop after 5 years, but of course will discuss thoroughly with my MO at my annual appointment next month. Like so many other treatment decisions, I think that the decision to stay for 10 years or quit sooner will come down to how much of a personal comfort we and our MOs have with the potential risks v. the potential benefits.
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Hi, Mary! It is a big decision! I see that you and I had a similar diagnosis!! I did have bi-lateral breast cancer, the right breast a Stage One! My onc in Chicago took me off the Aromasin after 7 years! When I moved here to California , my new onc put me back on it! Just completed 10 1/2 years.
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I came on today looking for exactly this topic. Thanks! I have an appointment in August with my doctor. My 5 years on this beast are up. I'm sure he'll recommend 5 more years (especially with the new study just released). I'm like NatsFan, didn't seem to be much of a benefit to me, but it's getting a lot of attention! I'm both a breast and ovarian cancer survivor (ovarian diagnosed right after the breast), so my ovaries were removed and I ended up in overnight menopause. It's hard to determine what is medicine related and what is just "regular" menopause related.
For those of you who are no longer on an AI, do the QOL issues get better, and if so, how long did it take until you felt better? If I'm not going to feel appreciably better, may as well stay on the meds. But I've also had major s/e: hot flashes, bone loss, weight gain, fatigue, hair loss...you know the drill!
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lady - I am right at five years and took a Femara break because I had upcoming surgery and am making a switch of manufacturers. I too had the same list of symptoms that you do, and I found that at the 3 week point in the break I felt a lot better. Sharper, hard to tell about fatigue because I just had surgery and also traveled to a funeral at the two week point, I am less achy, far less joint pain. My hot flashes are unchanged - I had a total hyst/ooph 9 years prior to breast cancer, and have had many hot flashes a day since - anti-hormonals and chemo did not alter the frequency or intensity. Clearly, can't tell about bone density or hair yet. I do plan to re-start, even though testing indicates low benefit for me, my MO would like me to continue if I can handle the SE. I currently have a trigger thumb right now and this is one reason I changed makers, so am re-starting on Monday. If I have too much resumption of symptoms I will probably discontinue.
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Hi, LadyinBama! I weaned off the Aromasin, so my last pill was last Monday!! I have lost 2 lbs already!! I do not have the urge to eat all the time! Could be psychological, but I just feel better, knowing I did the ten years and now I am done! However, I see my onc in October, and I will ask her about the15 year study!
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Thanks for the input. Was the decision to extend therapy based on just studies, or did anyone do the BCI testing or other testing to help decide. When my tumor was tested 6 years ago, the path report just said "ER/PR positive." It didn't say if it was highly positive or low ... which I think is automatically included on today's path reports (it should be anyway). I told my NP that I want my tumor re-tested for more details.
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I had the BCI test and it proved that I would get benefit from extending the AIs. Now the research is proving some of us will benefit.
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LadyinBama I've been of Exemestane for a little over a month. Eyebrows have thickened and hair on head is getting thicker. I was told the 1/2 life is a bit longer than Anastrozole. When I took a month break from that it was within a week I felt much better.
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Hi LadyinBama - I was on Femara from age 52-57, and have been off of it for 3 years. The s/e started to diminish within a few weeks, and gradually over a period of months, they resolved more and more. Today, I have a few aches and pains which of course are to be expected at 60, but nothing like when I was on Femara. My bone density has returned to normal (hooray!), I can actually get up from a chair and walk away smoothly - on Femara I'd stagger for several steps when I stood up because my joints were so tight and achy. I still have hot flashes but they are much diminished, and I no longer wake up at night with painful joint and muscles. Even the little bald spot I had on the top of my head has filled in. I've lost some weight - I could lose more but I enjoy eating too much! But I work out regularly, including running 5K and 10K races. Bottom line, three years later, I feel like a normal 60 year old or at least what I think a normal 60 year old feels like. It's been kind of fun to age-reverse a bit, going from an 85 year old to a 60 year old.
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From what I saw with the research, it all looks like small sample statistics. Largest benefit appears to be preventing a new primary. No survival benefit. You will notice that BCO hasn't posted this as yet.
I am more than comfortable with my decision to stop after 5 years and concentrate on exercise which I think is much more the magic bullet. I will being doing my TENTH Seattle-to-Portland cycling event in one month's time. Training to be able to do the 204 miles in 2 days.
Agree with NatsFan that eating less would most likely provide some benefit. But who wants to forego wonderful local mushrooms and amazing spring vegetables with their pork chop??? NEXT!!! (Dinner tonight was 3 Star restaurant-worthy.)
I am also enjoying thicker eyebrows one year later. - Claire
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Natsfan...was it your decision to stop after 5 years or the recommendation of your ONC? I just had my checkup and was told I would definitely be on Letrozole for 5 years. After that time my tumor sample would be tested to see if i would benefit from another 5 years (BCI test). I have minimal SE's but hoping I get to stop after 5 years.
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Nash - like all treatment decisions, it was my decision to stop after 5 years, but I made it in consultation with my onc. She agreed that it was a reasonable decision given that there were simply no studies at that time to show any benefits one way or the other of continuing for another 5 years, and given that I was already experiencing s/e that could prove detrimental to health if they continued, like bone loss. She also felt that if there had been a big "smoking gun" showing large benefits to more than 5 years, some preliminary info about the studies would have been released by that time, and nothing had come out. I think that had I been distressed at the thought of stopping AIs and wanted to continue, she most likely would have supported that decision as well given that there was just no evidence one way or the other at the time. Mental health is important too.
Now that some results are out, I will of course revisit the discussion when I see her for my annual appointment next month, but from what I've read so far, there's minimal benefit to me in going back on AIs. I have to remind myself to step back and look at my overall health picture, and to not focus solely on cancer risk. AIs come with their own set of potential health issues, like fractures from bone loss, weight gain, inability to exercise due to muscle and joint pain, etc. Will the minimal benefit of going back on AIs outweigh those very real health risks to me? At this point it looks like the answer, for me, is no.
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In looking at the recent research on the benefit of 10 years of AIs, the benefit is 4% approximately. Isn't 4% what chemo gives most women? Something to consider.
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My understanding is that the benefits of chemo vary depending on the specific dx - what stage, what grade, etc. For instance, a quick of check of lifemath for my dx showed a 22.4% 15 year cancer death rate without chemo and a 12.3 percent cancer death rate with chemo. That's a significant survival benefit. Despite the risks of chemo, I judged that the benefit absolutely outweighed the risks, so I agreed to my MO's recommendation and did 6*TAC. On the other hand, rads gave me no survival benefit and only a limited recurrence benefit, and the rad oncs I consulted were split in their recommendations. I ended up declining rads as I was comfortable with the level of risk I was accepting. Others in my exact situation may not have been comfortable with that level of risk and done rads, and it would have been the right decision for each of us. That's the trouble with all these "grey area" recommendations when there's no clear right or wrong answer!
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Nats is correct that it is all so individualized. That 4% does not apply to me as I didn't have chemo (low Oncotype) and I'll be staying on for the long haul, 10 years at least, due to high ER as well as ILC, the sneaky BC.
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NATS I too stopped after 5 years 5 weeks ago. My MO Initially said 10 years a few years ago but do to bone issues she was all on board to stop. Did say that could change if more info came out I future.
Chemo benefit is based on your diagnosis and age of diagnosis. Not everyone gets chemo. If I was told chemo was only going to give me 4% benefit I would have told my oncologist to shove it. My benefit with ESD was 44%. If I did only chemo without ESD the it would have been 28%. That was based on my age, diagnosis and type of treatments.
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You can get the information on the benefit of chemo on the Oncotype website. As I stated, many women take chemo with 4% benefit. In 2007, my first onco stated that he gave chemo with a 4-5% benefit. The information is well presented on the Oncotype website. They can explain it much clearer than I can.
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Not sure if this is the best thread to share my story, but here goes....
I've been on Aromasin for a little over 3 years now and was doing just fine. Of course there are side effects to being estrogen deprived, but nothing I couldn't handle - minor joint pain and stiffness, memory issues, the usual things we all experience. That being said, over the past few years I've been to the docs countless times with issues like abdominal pain, urinary issues, acid reflux, vaginal atrophy, this, that and the other thing...Every test was always normal, thank goodness. About 6 months ago I developed more severe muscular and joint pain, increasing stiffness, in addition to profound fatigue. Plus my memory issues became so worrisome I had my NP order a brain MRI. Everything looked good. The final straw was vulvodynia and burning tongue - both of which seemed to appear at the same time. I knew something was wrong. After many tests, several doctors and much persistence on my part, I was diagnosed with fibromyalgia. I was prescribed Cymbalta and surprisingly it took away all my pain and stiffness - within 5 days! It was amazing how fast it worked! But unfortunately my insomnia returned, and it doesn't help with the fatigue and the other things, of course, so I may not continue.
It seems the many symptoms I tended to attribute to the AI wasn't entirely the culprit. I am more sensitive to pain, which I've always suspected. After my BMX and exchange surgeries I swapped war stories with other survivors and my experiences seemed so much worse as far as pain. Now I have an explanation. Finally.
The point of my story is that I will choose to continue on the AI for 10 years, if I'm given the choice. Now that I know I have fibro, I'm not sure I would feel better if I stopped the Aromasin. I was stage 2b, node positive and did not have chemo or rads, so despite all the side effects I'm experiencing, I am committed to staying on this drug as long as possible in the hopes that it will prevent a recurrence. It truly is my security blanket and I'm grateful for it. That being said, I hope they come up with something better within the next 5 years!!
Thanks for listening!
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Hi bc101, it was serendipity that I read your story this morning. I follow this thread and others related to AI's because I have experienced side effects. The side effects I have are a stiffness in my left hip/groin/femur and pain expecially when I moved laterally...also crazy cramps in my feet and ankles, and the 90 year old woman gait. This started about 3 months after starting Letrozole. With so much support from BCO sisters, I did a lot of things...made sure I didn't dose the letrozole at the same time as my statin (that helped), exercised (that helped). But intermittently, I would get what I called flares. I would back off exercise for a while and it would "simma down". About two months ago, I started having strange tingling in my lower legs and burning knee caps and shins. Not every night but annoying. I thought....RLS?? Then while I was on a business trip, everything flared at once and when I returned, I was a miserable wreck....I had the tightness and pain in the groin/hip/thigh, the tingling, burning, felt like I was sitting on a rock. I went to my PCP and the tests started. Blood work was excellent, Knee, femur and lumbar X Rays showed nothing serious that would be causing the pain. Dr ordered an MRI with and without contrast. I really appreciated that my PCP wanted to rule out BC mets, however anxious that made me. As it turned out, I have been diagnosed with Tarlov cyst disease which are cysts at the end of nerve roots in the sacrum that are usually incidental findings, but can cause pain (and all kinds of other neurological symptoms) when they get >1 cm (I have 2 that are 2CM ea) I will be having a consultation with a neurosurgeon next week. The reason I am posting is I feel so silly for attributing my symptoms to the AI and trying to be so tough!!
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I have always believed in serendipity! Thanks for sharing your story and don't feel silly. Attributing our SE's to the AI is easy to do. There are sites filled with bc survivors who are taking AIs and suffer from similar symptoms. But sometimes you just know something's up! It takes a lot of work to pursue a cause and not assume you're just supposed to feel this way. Personally I think having a diagnosis is great progress and plus it gives you the confidence you need to continue with the hormone blocker, which is great!
Best of luck to you next week during your consult! I hope you get some answers!
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Have gone from size 10 to 14 pants in the 12 months on this stuff. Hope things have peaked. Thank goodness for consignment shops and Goodwill or I'd be in trouble
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Chloesmon, it may have peaked but this med is known for weight gain especially around the middle. Be certain to increase your activity level, even a little at a time will help, because it's way easier to put on the weight than to take it back off. Also be careful with what you eat. Cut back on carbs especially, potato, bread, pasta, etc.
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The study as presented in -- June 5, 2016 by the New England Journal of Medicine and presented at the 2016 American Society of Clinical Oncology Annual Meeting on June 6, 2016 -- examining early stage bc and taking Femura for 10 years versus 5 years, only seems to look at ER+ PR+, not ER+ PR-. There doesn't seem to be any stratifications beyond "early stage"-- not even between Stage 1A to Stage 3A. How do they not know if all recurrences are due to being Stage 3 versus stage 1? How does this apply to Luminal B's? (ER+PR-). Has anybody researched BCI enough to know if the risk reward takes "early stage" down to a more granular level?
My MO told me last year she was waiting for more studies (from San Antonio) on BCI before saying I would get that test. Saw her last April, and she said still not enough information for her to Rx. I was so not in the mood to quiz her like I usually do that day, or maybe I would have more to say on the matter. My 5 years are up, though, fall of next year.
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the ignoring of PR drives me crazy! They treat it all alike and assume it is the same, but I think they are finding out more and more that it's not
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Kbeee--- your point reminds me of "junk" DNA...which we are now discovering is anything but "junk." Kind of arrogant for researchers to have previously called it that!
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and in my case my PR was only 5% and ER 30% with HER2+ (luminal
. Will be interesting to see how this works out but for now I'm off it.0 -
Kbeee, Im exactly like you except my tumor was bigger.
(IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2-)
Can someone please tell me what actually IS Luminal B. I've read bits and pieces previously but nothing has been definite.0 -
Here is a graphic that shows the subtypes:
http://ww5.komen.org/BreastCancer/SubtypesofBreastCancer.html
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Very low PR positivity is often considered to effectively be negative. I've seen ranges of as low as 1% to 20%. Mine was 5%
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