How Many are doing 10 years on Aromatase Inhibitors
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Chloesmom Anastrozole is older and went generic before letrozole. Also I heard that letrozole might work better on women over 60. I started with Anastrozole but switched to Exemestane after 3 years due to SE. Doing much better now. They all essentially do the same thing.
hopelives I ended up with terrible depression on Anastrozole. I switched to Exemestane and got anxiety. I now take meds to treat the anxiety. Best thing I did. First time since about 6 months after I started the AIs that I have felt like myself again. Don't let this go untreated. I too blamed it on chemopause. I have since learned that others have had the same issues due to the AIs
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I have been on Arimidex for 21/2 and just got diagnosed with osteoporosis of the lumbar spine plus a lot of low back pain and sciatica which ended up being a herniated bulging disc. I definitely feel that the Arimidex is aging my bones and creating a lot of this pain. I am achey all over constantly. tired and feel as if I do not think as clearly. depression too.I am considering going off it and looking at alternatives such a iodine treatment.
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You should also review the literature about overall survival rates from being on these drugs and look at alternatives like iodine supplementation. I am beginning this research for myself.
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I told my doctor about the lumbar osteoporosis and all the joint bone pain. Her nurse called me back and said to take calcium and vitamin D and do weight bearing exercising. Not good enough for me.
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cynathianw if you oncologist won't treat your osteoporosis talk to your primary care. If you have been diagnosed and remain on the AI it will get worse. I was on plenty of calcium, D and doing weight bearing exercise and still got it.
or you can tell your MO that if s/he doesn't treat this now before it gets worse you will not continue with the AI. That might get him/her to prescribe or send you to a rhematologist or endocrinologist. For all you know that bone loss could be from some other issue.
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Thanks Ruth ! That is encouraging!
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Thanks Lago !
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Back in October (page 16, I think), I said I'd read a report that claimed BC recurrence risk was even higher in years 5 to 10 post-dx than it was in the first 5 years, for tumors that were strongly ER positive but HER2 neg. I said my med onc had used that report as one argument favoring extending treatment with an AI past 5 years.
Someone asked me to cite the reference for that report. I apologize for not getting back to you more quickly. I don't come to BCO very often anymore, so I didn't see the request for a citation until this morning, and then I had to find the article in my folder. (A part of me didn't want to continue that discussion, because I know first-hand how distressing it is.)
Lest anyone think I was passing along misinformation or making things up, the source of my statement about recurrence risk in years 5 to 10 is at the link at the top of this post. (That's where my mischievous iPad wants it to be.) I've also summarized below the key statements in the article. Please note that the article I'm citing is a discussion about a paper that was presented at the European Breast Cancer Conference last March. I've not been able to track down a peer-reviewed, published version of the study yet, but this research group is at the forefront of investigations on estrogen receptors, tumor markers, etc., so I doubt we'll have to wait much longer for the official version.
Begin quote:
"Recurrence rates were highest in the first 5 years for women with HER2-positive breast cancer, compared with the subsequent 5 years. For women with HER2-negative breast cancer, the recurrence rates were higher between 5 and 10 years.
" 'When we looked at the women with HER2-negative breast cancer and defined them according to their E-module score, which indicated how sensitive to estrogen their tumors were, we found that there was a striking difference,' said Dr. Dowsett. 'Among women with tumors most sensitive to estrogen, with a high E-module score, the recurrence rate more than doubled from 5.7% in the first 5 years to 13.6% in the subsequent 5 years. However, if they had a low E-module score, there was little difference in recurrence rates between the first 5 years and the next 5 years: 10.3% vs 12.3%.' "
End quote.
The "E-module score" is the component of the Oncotype DX Recurrence Score that's made up of gene expression by the estrogen receptor (and related) genes. That's the best I can do right now, because it's been quite awhile since I've looked at the Oncotype DX formula.
otter
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otter, I am sure many will thank you for your organization and thoughtfulness in finding this info, thanks
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Yes, thanks Otter for all your efforts, that is very valuable information and there is lots to consider.
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Thanks so very much, Otter. It's great to have both your precis and the link to the ASCO Post as well.
Reading this I can see why we're talking about 10 years on Femara. That's fine with me - I'd rather do that than face an increased risk of recurrence. The fact that there is any risk of it is deeply unsettling to me.
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Again, this is an interesting thread. I just had a DEXA two weeks ago and saw my onc last week. I am now 10 years and two months out. I have been taking an AI for over nine years. I had not had the DEXA in two years so I was pretty concerned about what it would show. I was pleasantly surprised! My onc said my bones were better than they were two years go. My hip is 6% over normal and my L-spine is 4% above normal. I was in complete shock.I do not take supplements of any kind. I do a very intense cardio workout on the treadmill, five times a week. My gyn told me that is considered an excellent weight bearing exercise since we are bearing our own weight. She also told me that is more important than any supplement we can take when trying to maintain good density or reverse not so good density. With that being said, I am supposed to take calcium, magnesium and D3 but I don't. I just get so tired of swallowing pills.
I will continue taking the Femara for at least another year. At this point I figure if it isn't broke don't "fix" it!
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Hi, Jillian - it's great to hear you're doing so well at 10+ years out. Am I correct in assuming you've been on Femara for about 9 years? I find it exciting to know that your bones have improved during the years on Femara. Perhaps that means there's hope that I won't lose any more ground to osteopenia
Thanks so much for sharing your experience. I will say that the D,Calcium & Magnesium combination is just about the most beneficial group of supplements you can take; after my Femara those are the pills I'd fight hardest to keep.
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Otter, that must be the study my onc used in recommending that I continue arimidex. I was 100% er/pr positive and stage III so it seemed logical to me too.
For the record, I had far worse side effects on tamoxifen.
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Yes, this is the study that oncs are using in recommending continuing Arimidex. I was 100% er/pr positive and stage II. Trying to stay on for 10 years. Also, had the BCI which proved that I would have benefits of continuing.0 -
Hi Aug242007
Just wondering how long ago you had the BCI done, as I was thinking about the test but thought it would be too late at this stage and the doctors would say just say on it, as I have already done 7 years of Femara. Actually I don't think the test if probably available in Australia anyway.
Does anyone know if the BCI is available in Australia, or do we have to send it to USA, the same as we have to do for OncotypeDX.
thanks Ched
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Just had the BCI done and I am 7 years after diagnosis. Test is now covered by some insurances here in the US and it is being offered free now. it gives information as to the benefits of continuing AI therapy.
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Sorry, what is the BCI. Test? Also, does anyone know how the time on AIs is counted? Does time on tamoxifen first count? I did 2.5 years on tamoxifen first, then had ooph and switched to AI. Have been on Femara for almost 2.5 years. Does that mean another 2.5 years of Femara or will I have done 5 years of combined hormonal therapy by this summer, and that's it? Sorry, maybe not fair question, and of course will ask MO, just wondered if anyone in similar situation. Thanks0
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sgreen...when I was diagnosed back in 2010, my medical oncologist said to me at the time, "Ten years of endocrine therapy pending future studies." Initially, I did 2 years of Tamoxifen while taking Lupron and then placed on an AI. He had told me that I could switch back to Tamoxifen at any point if the AI side effects were too rough. He did imply though, that his preference was for me to be on the AI going forward toward the completion of 10 years. The AI caused me to have stiff joints early on, but exercise has improved my stiffness. Other than that, I guess I could say that I'm doing well and FEEL well. The first five years following diagnosis have really flown by for me. My only regret about the next five years is that time is passing by too quickly!
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Is the BCI test useful in predicting recurrence risk for her2+ breast cancer? My tumor was er+/pr-/her2+. I was 5 years out from diagnosis in November and will complete 5 years of arimidex in April. Going for my regular visit with onc next month and will be discussing the benefit of staying on AI for another 5 years. So far I don't have horrible issues with arimidex, but have concerns about the risk of bone and heart health if continuing another 5 years! Haven't really found any info on how useful the test is for us her2+ gals.
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Hello- I found this tread as I am looking for other ladies that are taking - Leuprolide Injections (Elegard, Lupron) and Exemestane (Aromasin), I've got 5 years on these drugs, just getting used to the SE of the Lupron Injection, was wondering if anyone could provide me some suggestions to manage them and do they get less over time?
Thank you for your support and insight.
Raindeer1217
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raindeer it might help to list the SE you are having. Everyone is different.
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My oncologist said that if I showed any signs of osteoporosis while on the AI that he would immediately start me on IV bisphosphinates (sp)
Has anyone found studies for recurrence risk of HER positive and ER/PR +++ between 5-10 years? I'm coming up on 5 years, my MO thought that by this fall when I reach that point there should be more research available on whether or not I should stay on the AI for another 5 years. Any info you guys have would be awesome.
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The additional 5 years should help fight after 10 years, at least that's my understanding. This article might give you something to consider. I know it's getting me to reconsider quitting after 5 years. My oncologist says I'm high risk for recurrence and I had no nodes. linky
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Here is a link posted on another thread. It is from thr European Breast Cancer Conference held in March of last year. It addresses who may benefit from the additional 5 years on an AI and who may not need it (her2+). I'll be interested to see what my MO feels is right for me, There seem to be a lot of conflicting opinions among oncologists on this one!
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We were talking about what percentage of women would actually benefit from extended endocrine therapy on another thread. One of the gal's oncologist told her she would only have a 2-3% benefit of extending her time on Tamoxifin. The company that advertises the new BCI (Breast Cancer Index) test states that 3-4% of women would benefit from extending beyond 5 years. So I was looking around at some of the clinical trials and this is a short summary of what I came up with (the bolding is mine):
"In pre-menopausal patients, tamoxifen in association with a longer use of LHRH is the gold standard especially for patients that continue to menstruate after chemotherapy, although it is actually not possible to identify subgroups in which the hormonal therapy has a little benefit."
and
"In post-menopausal patients we are waiting for more data to identify the better strategy to use AIs, upfront or switching strategy, actually both results valid. We need more data to extended therapy with AIs after 5 years and if we decide to prolong therapy we must outweigh benefit and risk of toxicities. Thus, methods for improving the use of endocrine therapy, such as exploring new classes of agents, dosing, scheduling, combinations, and the addition of targeted agents to reduce the development of resistance, are crucial for the next future."
and to sum up:
"Women with estrogen receptor (ER)+ early breast cancer (BC) are at continuing risk of relapse up to at least 15 years after diagnosis, despite being on adjuvant endocrine therapy for approximately 5 years. Extended adjuvant endocrine therapy with an aromatase inhibitor (AI) after 5 years of tamoxifen further reduces the risk of recurrence in postmenopausal women. More recently, continuing tamoxifen for 10 years has also been shown to further reduce the risk of recurrence compared with 5 years. There are no direct comparative data on the relative merits of extended tamoxifen compared with an AI; indirect evidence suggests that an AI may have increased efficacy but a greater adverse effect on quality of life. Results are awaited on the need for continuing front-line adjuvant AIs for more than 5 years. The next challenge is to determine which patients will benefit from this long-term treatment. "
No kidding!!!!!!!
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jacksnana thanks for posting that. My MO was pushing for 10 last spring. Her specialty is HER2+. Will be questioning her in April about this!
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I've been following this thread even though I'm not on an AI YET. I automatically assumed I'd need to continue on Tamoxifen (1yr)then AI for 10-15 yrs because I'm 90% ER/PR+. This is the first time I've read anywhere that ER/ Her2+ didn't have a higher risk down the road. Thanks jacksnana!
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Mommato3 I'm not sure it's because we don't have a high risk. I could be because more HER2+ recur early than those that are just ER+/PR+. N ow that HER2+ is treated with Herceptin and all these other agents it will be interesting to see. I'm not sure if the study considers that.
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lago - would love to hear what your MO says when you see her. I'm in the same boat. I have a lot of side effects with the AI's, but really, really, really do not want my cancer to recur.
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