Aromatase Inhibitor and just walking away.
Comments
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Ladies, the moderators had sent me a PM stating that videos were not appropriate to post here on this conventional thread, although they didn't specify a reason.
Please study up on various interesting video presentations shown on YouTube, especially Dr. Gershom Zajieck MD videos. Thank you and best wishes to all. Never stop believing.
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In the article I read last night and posted, Tamoxifen did not have the same effect in creating the mutation. That makes obvious sense in that Tam doesn't eliminate estrogen. Of course, Tam has its own evil side that rears its head in the form of other cancers. Grrrr
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Hello Ched,
Thank you - very helpful.
Best of luck trying to work out your next step...it's an awful disease.
::))
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Weareconnected
Association does not imply causation and is one of the greatest issues in interpreting trials.
I believe your confusion is over the temporal relationship of the events you are describing.
Simply put
- over the years the 'dormant' (concept still tricky to describe in full for scientists) acquire hormonal resistance - they escape
- they have now acquired higher metastatic potential
- you are quite correct if you have the mutation - you have greater metastatic potential - and you will probably do worse
In my knowledge of this what has not been elucidated is:
- is the mutation a direct result of prolonged AI use?
- what would be the prognosis in the same pool of cancer patients ( ie the one who do worse and develop endocrine resistance) if they did not use AIs
Thanks for posting above - good topic.
If you have data on those questions - would be very interested.
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Letrozole (brand name: Femara) is a third-generation AI and there is some evidence that it may be slightly more effective than anastrozole (brand name: Arimidex, first-generation) or exemestane (brand name: Aromasin, second-gen.). The reason one might have the misconception that anastrozole is the “first-line treatment” is that as an older-generation AI it is the cheapest; and therefore many insurers (and some countries NHSes) insist on “step therapy:” 90 days of using the cheapest drug in a particular class and either failing on it or being unable to tolerate it.
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Hello ChiSandy,
Thank you.
You probable know this work
http://www.thelancet.com/journals/lanonc/article/P...(17)30081-5/abstract
Price and country preference aside - my question is if one uses Letrozole as the first choice ( let's not call it a line:)) in early disease at high risk does that have implications for its further use should one have to deal with Stage 4.
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A point of reference, for NHS England, Letrozole is a NICE listed drug that is prescribed regularly (without any hindrance - inexpensive - cheap as chips) and a cancer diagnosis comes with a 5 year NHS exemption card (renewable after the 5 year mark) that when shown at the counter at the chemist, prescriptions are then free. Drugs for incurable secondary breast cancer are routinely rejected for being too expensive.
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Wildplaces, that's a good question. I'm not sure about how use early in treatment would affect later use of letrozole but I suspect that it might be possible to use it in tandem with another drug such as Ibrance if one experienced a distant recurrence. Or one might be switched to faslodex, then later back to letrozole. I'm sure some of the Stage IV women have a much, much better understanding of the strategies. I may raise the question with my MO the next time I see her.
Lilac Blue, are you saying that most of the newer drugs for secondary cancer are off the NICE list until they come down in price (if ever)? (I've always thought the 'NICE' acronym had a touch of New Speak about it.)
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Hello hopeful,
My simple way of wrapping this is:
- Letrozole probably marginally better - potential other mech of action besides the aromatase bit
- Anastrozole - most long term data
- exemestane - loved by Europeans and less osteoporosis
The thing that bugs me and why I read this thread is that we ALL get "my preferred drug", one dose, for x years (now looking like 10 plus) YET not only are we all widly different both in terms of ages, size, comorbidities, life plans and priorities so are our HR positive tumours.
Surely after 20 years or so the PHDs would come up with a more tailored approach.
Top that with a side effect profile not to be sniffed at and no wonder the compliance rates are quivering....but give a woman a dose adjusted to her personal history with options to open mindedly review this 10 year plus plan as her life and needs change and with good access to treating side effects - or at the very least acknowledgeing the damn things and I think most will play.
There will be some who will still choose it is not to for them - that is to be respected.
Dreamer ahhh?!
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Well, although most patients are started out according to the “party line” on either anastrazole or letrozole (and though letrozole is given to those with diverse BMIs, I’ve not yet encountered—either in real life or on these boards—obese women started out on anastrazole or exemestane. And there is some individualization, in that patients’ tolerance or intolerance to a particular AI’s SEs often leads to switching, at least temporarily. I’ve also not seen anastrazole as the AI of choice for ER+ Stage IV, though some ER+ Stage IV patients get a combo of exemestane & everolimus (Aromasin & Afinitor). I guess the difference may be in the organ in which mets are first detected. AFAIK, using letrozole in early-stage disease doesn’t preclude its use in Stage IV patients—in the latter it’s usually given in combination with newer drugs like Ibrance (and if the mets are to bone, monthly Xgeva shots are given instead of biennial Prolia or a bisphosphonate). Letrozole may have the advantage of being both initial therapy and one of the “big guns” trotted out when the cancer spreads. (AI resistance—more correctly, tumor cell mutation to become estrogen-independent or able to synthesize its own estrogen—does not seem to be caused by the early-stage use of any one particular AI, at least from what I’ve been able to read).
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Thank you ChiSandy,
That is the most comprehensive answer I have come across from anyone (three oncologists at university level included in three different hospital - yes I managed a bit of spread
over the past 6 months...And it was not for my not asking!
Brilliant
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I have not looked on BCO for discussion on Aromatase inhibitors for awhile. I checked out of one of the main threads a couple of years ago after reading lots, mainly because I knew I needed to be in Anastrozole at least for 5 years. This morning I decided to have another look and saw this thread. I have one more year to get to the 5 year mark and have been hearing from my MO for awhile that 10 years may be recommended. There is one woman who was on our Canadian thread until it disappeared by mistake and who I am on FB with, who is at 5 years and will discontinue as a matter of choice this week. This is what I hope I am brave enough to do in a year when my 5 years is up. The S/E are not unbearable but they are enough to make me want to see what life is like without the A/I. I am now on Prolia twice a year for osteopenia that had a rapid progression. Dry everything from lack of estrogen is annoying. Hot sweats were a big problem until I started on Venlifaxine 1.5 years ago for depression. My MO considers 150 mg to be a low dose but recently when I we lowered the does dose to 112.5 mg, within a a week, hot flashes returned. BTW, when I started on the antidepressant my MO said that 50% of women had fewer hot flashes. Bottom line, in a year I want to "walk away." Quality of life is probably what I am after.
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Hopeful8201 says: <Lilac Blue, are you saying that most of the newer drugs for secondary cancer are off the NICE list until they come down in price (if ever)? (I've always thought the 'NICE' acronym had a touch of New Speak about it.)>
Yes, that is what I am saying. I received the below at the end of last week from Breast Cancer Care (aka, BCC, sort of the equivalent to BCO, yet extendss further. BCC prints and distributes all literature for breast cancer after care that is given out by NHS, is incredibly mobilized on the ground, such as putting on workshops for moving on after treatment and the main voice for secondary breast cancer especially in parliament, they lobby heavily for bc funding - flag up to the public when, like the below happens and deeply grateful they do) and have circulated to all on my bc database.
Hello Pink Ribbon Pilates, We need your help to make our voice stronger for people with breast cancer.
NHS England and NICE have introduced significant changes to the way drugs are made available on the NHS. And we're extremely worried about what this means for people with breast cancer.
The new changes mean that even if a drug is given the 'thumbs up' from NICE (proven to be both clinically and cost effective for patients) and is approved for routine use, the NHS can still block access to the drug if it's unaffordable. Any drug that costs more than £20 million in any of its first three years of being available on the NHS will be regarded as unaffordable. It would mean that access to that drug could be blocked for up to three years.
Drugs for incurable secondary breast cancer are already routinely rejected for being too expensive, while the sheer number of patients with primary breast cancer means even a relatively cheap drug could end up above the £20 million threshold.
These changes were approved earlier this week and will come into effect from April 1st. However, there's still time to make your voice heard; sign the petition we're coordinating with a number of other charities and share amongst your family and friends. The more people that sign, the better.
I'm in- take me to the petition In other drug related news, two drugs for secondary breast cancer are being assessed by NICE soon: - Fulvestrant (brand name Faslodex) for treatment of women with untreated, HR positive, secondary breast cancer.
- Ribococlib (brand name Kisqali) for treatment of postmenopausal women with untreated, HER2 negative, HR positive secondary breast cancer.
We'd like to hear your views on the impact having access to this drug could have, both for people with secondary breast cancer and those around them. Feedback on the following areas would be especially helpful:
- Concerns you have about current NHS treatments in England (if any)
- The benefits of either Fulvestrant or Ribociclib (e.g. impact on physical symptoms, increased quality of life)
- Any disadvantages of either Fulvestrant or Ribociclib (e.g. side effects, travelling to/from hospital for treatments)
We'll submit your feedback to NICE as part of these drugs approval processes.
Please email campaigns@breastcancercare.org.uk to share your views and experiences, by Wednesday 22 March.
We know this email has asked a lot of many of you, but ALL your feedback and involvement is really helpful.
Thank you for your ongoing support.
Danni
Head of Campaigns
Breast Cancer Care -
Hi Barbe "the nice thing about Melatonin is that if you wake up in the middle of the night you can take another one without adverse effects" unless you happen to be one of those that is very sensitive to the amount you take. Actually recommended dose in the peer reviewed articles is about 10% of what's in most tabs. But most people can use much more with no problem. If you go too high it messes up your sleep cycle. It keeps me awake even at the low dose from the drug store (3 mg)!! I tried it (3 nights in a row to make sure I wasn't just having a lousy night) instead of valerian to see if it would help me get a half decent night's sleep while I go through the scans & biopsies & wait for all of my results (MRI is next week) and get ready for the surgery. Didn't help Went back to Valerian and doing better.
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Quay, I am very sensitive to Melatonin, so I cut a 3mg pill and take a quarter. Sometimes i cut the quarter and take 1/2 before bed and 1/2 if I wake up in the middle of the night.
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If you're uncomfortable with data, many medical study authors will respond to emails. But unfortunately, the hormonal stats referenced are substandard at best and very limited online. If you have access to more current & prudent "clinical endpoint & absolute data" to share, please post here.
Links to statistical data were originally provided so people can read for themselves to avoid misleading comments, misinterpretation and misrepresentation. Please kindly do not shoot the messengers. We are all united here as one sisterhood for help and support.
https://community.breastcancer.org/forum/78/topics...
Respectfully, I beg to differ, as I never stated that ESR1 mutations were the "cause" of mets; however, ESR1 is indeed only one contributing factor of many. "Cause" and "contribution" hold two distinct definitions which are not inter-changeable.
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TOPIC - Risk Reduction Stats. https://community.breastcancer.org/forum/78/topics...
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IBIS-II http://www.thelancet.com/pdfs/journals/lancet/PIIS...(13)62292-8.pdf
Research has shown that anastrozole is more effective than tamoxifen in preventing the return of cancer in post-menopausal women who have an early breast cancer removed. In these women it reduces their risk of developing a new cancer in the opposite (contralateral) breast by 53% compared to tamoxifen1
http://www.ibis-trials.org/thetrials/ibistrials/ib...
..................................................
Aromatase Inhibitors May Prevent Cancer
http://www.naturalmedicinejournal.com/journal/2014...
We must find and consider the bottom line. Eighteen deaths were reported in the anastrozole group and 17 in the placebo group. At this point 5 years into the experiment there is no difference in overall survival (OS), and the data do not yet support the assumption that there will be a fewer deaths from breast cancer in the anastrozole group with longer follow-up.
[Edited to add]
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I note that several of your posts were removed by the community.
What I object to is information presented out of context and thus misleading.
Still if it makes you happier to swing - no worries mate!! Go for it
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I would have like to have seen weareconnected posts. Not sure why they were deleted.
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Ms Meow, please feel free to conduct an intra-site search using my screen name, and you'll see why my video related posts (on hormonals by a M.D.) had been deleted by the mods. The videos contained additional medical study statistical results regarding hormonals, which I couldn't locate online myself. Valuable info is apparently being scrubbed and/or censored by someone with power & influence.
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WildPlaces, once again, your screen name appears to be a strong representation of your actions.
The March 17th re-posts are merely mirror images of my earlier ESR1 reposts because the mods were apparently censoring my posts for video content. Video reposts by YouTube user name also got censored by the mods & deleted.
There's no secret agenda on my part, as I fully respect the 1st Amendment of the US Constitution.
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SNIP
(Re-Post ) https://community.breastcancer.org/forum/78/topics...
"A summary of the evidence for therapy with A.I.s is provided in Table 1."
Table 1. Summary of evidence for therapy with the aromatase inhibitors anastrozole, exemestane, and letrozole for postmenopausal women with ER-positive breast cancer.
source: Www.BCMJ.org Vol 48 no 3 April 2006
Report entitled : "New Guidelines For Treatment of Early Hormone-Positive Breast Cancer With Tamoxifen and Aromatase Inhibitors
[Edited to add] Table 2. Risk of breast cancer death and breast cancer occurrence 6 to 10 years after diagnosis if disease-free after 5 years of tamoxifen.
http://www.bcmj.org/article/new-guidelines-treatme...
NOTE: PLEASE READ ARTICLE AT LINK PROVIDED
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Our disease must be treated with sensitivity
Do not personalise comments
please respect everybody
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Moderators: Please kindly close out my account and login/password. Thanks.
Ms Bright, thank you. Amen
Does anybody have any medical trial study data links to add pertaining to Aromatase Inhibitors?
If not, see 03/21/17 topic by Opale referenced above. Thank you & best wishes. (edited to add)
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Dear VioletKali, Thank you for sharing! I too am bipolar. Just had a mastectomy and now my surgeon and medical oncologist want me to take Arimidex for 5 to 10 years. Your post made alot of sense to me. I also am doing great on my bipolar meds and am leading a mentally very healthy life. I am scared to take Arimidex, because it will upset my body chemistry. I have copied your post and am going to show it to the surgeon this coming Wednesday and to the medical oncologist a few days after that. Am also looking into a homeopathic clinic in Mexico. Hoping to make the right decision. All the best. Thanks so much again for your post!!
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After 5 long weeks on Letrozole, I'm back on Tamox starting tomorrow. Stopped on Fri and my head and joints feel better already. Almost tempted to forget about Tamox too since it was bad but not as bad at Letro- but with 95% ER I'd be issued my death certificate sooner than I'd like I'm sure if I do nothing. I'm 52. I also have major depression/anxiety pre-cancer. It's worth a try at least if that's what's recommended. I couldn't do it anymore, and am not looking forward to popping Tamox tomorrow night.
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I'm not sure if this is quite the right place to post this question or not but I am interested in your opinions. I'm wondering why a MO prescribes one AI over another for those of us who are postmenopausal with no signs of osteoporosis? My MO put me on Arimidex right away, even before I started radiation, and I am curious why this particular drug as opposed to Femara?
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When Humana pulled out of the Georgia market last year, I had to change insurers. I went yesterday to refill my exemestane script or the first time under my new coverage. $514 for 30 days? No thanks. Thinking about what I'd have to give up in order to pay this every month has me ready to walk away, too. I started HRT in October, 2012, so I've been on them for almost 5 years (2+ of tamox, a brief & horrible stint on letrozole, and 2 of exemestane).
I'm fine with stopping, as long as my family doesn't find out.
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Look up the price for your AI on goodrx.com. Much much cheaper there than using your insurance.
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Juniper Cat, I think some MOs just have their knee-jerk preferences - they start patients off on the same one all the time and don't think to make a change unless the patient complains about it. Then it's off to another.
Others will use a more nuanced approach and give more consideration to the specific patient. It would certainly be interesting to see a poll of MOs on the issue, wouldn't it?
I personally prefer Femara because, having taken it neoadjuvantly, I KNOW it works with my pathology. I also appreciate that it's a tiny bit more effective than the other two. That slight edge may be why some MOs choose it.
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Dear Hopeful, thank you so much for responding to my post! I wasn't sure if this was the correct place for posting my inquiry. It's funny, I never even thought to ask my MO about the different types of AIs because, quite frankly, I was still in the "deer in the headlights" mode and had no clue about these things. My sister was also automatically placed on Arimidex. On another tangent, I have noticed on this website that many people don't start on an AI until they are completely finished with radiation; I began it before and continued with it concurrently. It's interesting how treatment strategies can differ from one doctor to the next. I'm so glad to hear that Femara worked well for you!!
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