How Many are doing 10 years on Aromatase Inhibitors
Comments
-
But, just to be the devil's advocate, many, many things are used before they are FDA "approved" for that use,including drugs. However this probably means insurance won't pay for it!
0 -
I continued due to the number of women with ERpositive breast cancer like mine that have mets at 15 - 20 years. Also, I had the BCI test.
0 -
Aug242007 - that is exactly the reason I continued on AI for 10 years too. When I was dx 2006, I was not allowed to have Oncotype testing due to one positive node.
0 -
can someone tell me how much the BCI test is?
0 -
TwoHobbies My MO said there have been tests like BCI before. She said right now the medical science isn't supporting its accuracy. Remember my MO is the one who supported Herceptin from the start and broke the double blind study back in the 90's when her patient was dying because she knew she wasn't getting Herceptin and was going to die without it. (One of the last chapters in the book:
Her-2: The making of Herceptin, a revolutionary treatment for breast cancerBy Robert Bazell. 214 pp. New York, Random House, 1998
0 -
lago....Bazell's book is excellent and so is the film based on the book.
Regarding the BCI test, again, I had it and the results, which calculated my 10 years, was almost identical to the info I garnered from the CancerMath.net website which charted my 15 year chances with respect to protocol therapy as well. As far as I was concerned, BCI was accurate, but no more accurate than other calculations, which included SEER.
That brings me back to the original question to answer, once again, do all Stage 1 patients risk visiting a 30% chance of metastising? No. If that was true, then it would nullify the statistical results of all of the leading genetic tests that derive their significance and credibility that is based on biological events and statistical analysis.
What is also clear is that thanks to the digital revolution, we are now able to crunch numbers from all parts of the world which should then have the potential to validate what statistics we already have in our databases. Furthermore, with new protocols being developed every few years, those differences in mortality will be seen, hopefully, earlier than in the traditional time periods that we have seen in the past.
For a more in-depth understanding of what I am trying to explain, read Eric Topol, MD's, The Creative Destruction of Medicine.
0 -
I had the BCI test and when my insurance turned down paying they allowed me to have the test free. It did show that I would benefit from continuing the AIs for 10 years.
0 -
Question: Oncotype RS score indicates recurrence in the breast tissue or distally? Or is it not specific? If one had a DMX and no node involvement but there were 4 tumors in one breast... stage 2A....we know it can't come back in the breast, if they are removed, but what is the RS in other parts of the body. Are there no studies for this?
0 -
Can someone tell me what the BCI test is? TY
0 -
There's a description at http://www.breastcancer.org/symptoms/testing/types/breast-cancer-index-test
0 -
s...local occurrence can reoccur in the breast even if you have a mastectomy. Most genetic tests are giving you the chances of metastising, that is called "distant recurrence.". BCI refers to Breast Cancer Index.
0 -
You can even get a new breast cancer after BMX. There's about a 3% chance. It happened to a friend of mine (who I met here but is local). We lost her 1.5 years ago. She was diagnosed about the same time as me. Just a year younger, same stage but no HER2+. I miss her.
0 -
I guess I have not been following the latest trends and views... only whether I will be doing Aromasin for 5 or 10 years. I bet my onc will say 10 if my bones are OK.
Can someone tell me what BCI test is?
0 -
-
Well, I spoke to soon. Four and a half years out, I asked my onc today about 5 years HT vs 10. With my oncotype score I assumed it would be five years. She feels that given my family history of BC and cancers in general I should do ten years. Ugh. Anyone else ever hear anything like that?I love my onc but I wasn't expecting that. She does not do the BCI test but may once it is FDA approved.
0 -
My insurance did pay for my BCI test with no co-pay for me - $5,400 is listed as their payment on the EOB.
0 -
My joint pain was bad at the start, then I started on Cymbalta and it really helped with that. Suddenly In The last couple months, I have a huge amount of pain. My right knee, my hips, my right little toe (seriously, how does that happen) and my right side ribs. I still have de quervains in my right thumb and two trigger fingers.
I have no idea if this is menopause or arimidex, but I had none of this before I started arimidex and was extremely flexible. That has changed dramatically.
I can't even decide which doc to go to first, lol. I see my onc in October and have a bone density test in September. I completed my five years of treatment ESD in July but am continuing until I see my oncologist.
I'm going to ask about the BCI test but I feel like I already know his answer
0 -
I quit in April, after just a little over 5 years. I discussed it with my oncologist, tho. Had my cancer been a higher stage (I was Stage 1b, Grade 2) or had I had a larger tumor (it was 9 mm.) she said she would advise me to stay on longer, but I felt the risks of being on the drug were higher than the risk of recurrence for me and she was perfectly ok with me going off it. Besides, when I started taking it, 5 years was the recommendation and I did what I was told then!
Suzanne
0 -
Just as a general aside - the Breast Cancer Index (BCI) genetic assay test is done on the original tumor sample after taking anti-hormonals for five years. The purpose of the test is to determine whether continuing beyond 5 years is beneficial by looking at both the aggressiveness of the tumor to determine risk of recurrence, and benefit that the drugs provide to prevent recurrence or new primary. I had this test done in December and it showed a combo that happens with less than 10% of patients who have had the test - which is high risk of recurrence and low benefit from the drugs. Insurance did not cover the test for me, but I did confer with the lab, Biotheranostics, and they do not pursue the patient as an individual for payment if you have insurance coverage but are denied. They have their own insurance appeals folks and will work on getting insurance payment until they exhaust that process. They do have patient assistance programs if you have no insurance, or are underinsured. Six years ago I also had a Mammaprint, which insurance denied as "experimental" but is now considered a mainstream genetic assay test, and often used as the tie breaker for those who have an intermediate score on Oncotype Dx. I am hopeful that the BCI test gains some traction because I think, if accurate, it provides useful information. The number of people who benefit from continuing past 5 years is smaller than one would think - I believe 6% or less, and I think a lot of MO are just doing a knee jerk reaction and keeping patients on, potentially causing more harm than good. Because I have been compliant with taking anti-hormonals and not recurred yet - they have either provided some benefit or I have just been lucky - my MO has indicated that he would like to see me continue if I can handle it since low benefit is not the same as zero benefit, and I appear to be high risk. If I had come back low risk I believe that my MO would have indicated it is time to stop anti-hormonals, as I have had many of the issues that fluffqueen describes above.
fluff - have you changed manufacturers to see if you can get some of your arthralgic symptoms to ease up? This works for me - I have changed from one maker of Femara to Armidex, back to a different maker of Femara, then I changed makers again - all to alleviate triggers in thumb, finger, toes and ankles, and an inflamed knee that required a cortisone injection.
Edited to add after reading golden's post - For anyone who is taking Femara and having issues, I started on Mylan brand of generic letrozole (Femara), then switched to Accord generic anastrazole (Arimidex), then went back to the Teva brand of letrozole for a couple of years until I developed triggers again, and just recently switched to Roxane generic letrozole, which is supposed to have even fewer fillers/additives than name brand Femara from Novartis.
0 -
Special K - Great summary, thank you. My MO agrees with yours, low benefit is not the same as zero benefit. One of the reasons my MO recommended going with the BCI test now (in addition to me being five years out) is that if you wait too long, the lab may no longer have your original tissue sample.
Fluff - Special K is right on about the manufacturers on making a difference. My drug store recently substituted the Accord brand of Arimidex and I didn't notice. I developed bad joint pain over about six weeks (this had happened once before). Two weeks back on the Teva generic for me and the pain was gone. I'll check the labels more carefully down the road.
0 -
I've been on Anastrazole for 5 years and just was advised by my ONC that it would be best if I stayed on it another 5 years. She was citing the most recent studies and with the number of lymph nodes I had removed (9) and my stage and Her2 status, and since I tolerate the drug fairly well, it would raise me a percentage point to beat re-occurrence. She did say the studies do show from the 5 to 10 year period the drug affects the bones even more and there is a record of more falls and breakage of bones so I need to take more calcium, do weight bearing exercises, the usual. So, with that info I agreed to go for another 5 years and then see what the studies show at that time. Meanwhile, as long as I continue to tolerate the Arimidex with the arthritis, weight gain, joint pain, I'll stay on it. I don't see it as having much choice.
0 -
farmerlucy I was told at the beginning 5 years. Then after 3 years when I was having issues she hinted at 10 due to my high risk for recurrence due to tumor size.
This May was the 5 year mark. I walked into my appointment with a broken metacarpal. I was on Prolia. My oncologist said that shouldn't happen on Prolia and said I'm done with AIs…unless in the future the studies say I will benefit. She said no to Tamoxifen too. Doesn't do the BCI test because it's not recommended. She said these kinds of tests come out all the time. Not all of them are that reliable.
Fitz33 I'm HER2+ as well
0 -
Thanks lago. I guess I just need to get my mind around it. As long as I don't have any more uterine issues I could do it.
0 -
I went into the MOs office yesterday armed with print outs of reports ready to fight about staying on aromasin another 5 years. And right off the bat, he said "the studies show about a 2% benefit; if you want to quit taking it, I'm fine with that." I jumped up and hugged him and said I love you! I just knew he'd be strongly on the side of 10 years therapy because he treats aggressively. I'm so relieved to be able to stop this stuff.
Those who have stopped, how long did it take for you to notice a change in how you feel? Joint pain, fatigue and monster hot flashes have been my pain s/e. Did you lose any weight? I lost some weight about a year ago, but I haven't been able to lose anything since. I'm hoping and praying that my s/e's will resolve. Some I guess could just be that I'm menopausal now and not get much better.
0 -
special k....I am on the the a brand. When I started I was generic whatever. When I started to have joint pain, I was reading on here a lot about the a, so,switched to Walgreens for it.
I saw my internal med doc, who ordered X-rays of all four places. Nothing showed for my rib or knee. Osteoarthritis showed for hip and foot.
If my onc recommends 10, it will only be after I take a 3-6 month break to see if anything changes and improves
0 -
&%#@*$ - I started a new thread on this, but just to update this thread as well - I'm back on AIs after 3 wonderful years off. At the time I finished my 5 years,there were no studies indicating benefit to going to 10 years for me, and genomic tests were not available for node-positives like me. I'm a data driven person,and with no data available at that time to support staying on, I was glad to get off of that stuff.
At my last annual MO appointment a few weeks ago, my MO said that the BCI test was now available for me and she suggested we get it. Just got the results back this week, and it shows I'm at a high risk for recurrence. On a scale of 1-10 with 10 being the highest risk, I'm an 8.8. My MO has recommended that I resume AIs. I've been doing frantic research this week, and unfortunately after everything I've read, I'm forced to agree with her recommendation. I'm not happy as I had every s/e in the book. My MO is calling in my scrip today. Yuk.
0 -
Sorry Natsfan, it sucks. My onc want me to do 10 years too, but at this point I doubt I will. My onc doesn't do the BCI, and I'm thinking I may not want to know anyway. I wish you no SE this time around.
0 -
fluff - interestingly I am on the Roxane brand of Femara and it has less fillers and additives than the name brand from Novartis.
nats - if you develop SEs try switching brands or drugs - it has worked for me. I have been on three different generic brands of Femara and one of Arimidex over five years. I did a 3 week washout between brands. Some SE lessened, some went away completely.
lady - I was off Femara for six weeks in May/June of this year due to a trigger thumb and surgery - I could feel the difference after about 3 weeks, and it improved the longer I was off. It was hard to start taking it again! Congrats on being able to stop!
0 -
SpecialK - I'm reading more and more here about how switching generics can help if s/e get too bad. How do you get different brands of the generics? I just thought you got whatever the drugstore stocked. Does your MO have to specify or can you just ask the pharmacist?
0 -
Nats, yes you usually get just what your pharmacy stocks, but different pharmacies carry different generics. Call around and ask. I have at least four different chain pharmacies near me, and others, plus mail order all available. I use the one that carries my insurance and the generic I have taken since they came out.
0
