Aromatase Inhibitor and just walking away.
Comments
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This might sound funny, but what I don't get about hormone therapy is, is it supposed to only protect you only whilst on it or is it supposed to protect into the future when you are not on it anymore..whether that's in 5 or 10 years? Because when people come off it, obviously estrogen is going to start to circulating again..whether that's from your ovaries or what goes in your body in general..so if you're ER/PR positive, does that mean any amount of estrogen can now set off recurrence or is it only when estrogen dominant? Excuse the ignorance 😀
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Meeting with my MO today to make a decision about hormone therapy. I am still confused and don't know what to do.....
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hi beach kate
Consider starting the AI ..this seems to be recommened protocol world wide
Did you have lymph node involvement?
Tocombat osteoporisis keep fit follow info from this site lots of fitness and nutrition info
Loose weight reduce carbs and alcohol
Im 9 months on letrozole still active no side effects
For me it is reducing the size of my lung mets
Good luck
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Lottemarine - my understanding is that the longer you cancer free the better your chances are for non-recurrence. I wondered about that too.
Chi - sounds like you have a good handle on it!
BeachKate - I'm praying your MO has wisdom for the very best treatment for you. Remember - if the first treatment meds don't work out for you (too many se's) there are usually others that can be tried. You're not 'doomed' with a hard one.
You all have a great day!
Ade
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I had a tooth break in half - a molar - a week ago and now I can't get any of my molars to meet to chew! If I try I get TMJ pain on the opposite side. My question is - can an aromatase inhibitor, which thins bones, cause dental problems? Anyone ever heard of this?
Ade
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Ade....yes there are women on this board who have had extensive dental problems from As. It effects the bones which causes a lot of problems. Good luck and keep us posted.
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Hello Ladies (and Gents?)....I have not posted in a long while because I have been happily enjoying a holiday from breast cancer surgeries, treatments, drugs, hospitals and doctors! I left the office of my medical oncologist in May of 2016 and did NOT see another cancer doctor until yesterday. AND IT WAS LOVELY (overall)!!! FYI – I don't include my cancer information because frankly, I am far too sensitive to receive any insensitive commentary. It doesn't even matter if comments are unintentionally icky...for me, small (even teensy!!) things can trigger huge cry-baby moments for me!! lol So I post details as they are relevant to my writing. I'm writing today because I wanted to update you folks on my particular ordeal with estrogen blockers. Maybe it will help someone out there. I've done some "ground work" and these are my results (for whatever its worth). First of all, I was on Tamoxifen from May 2015 to January 2016....hated it!! I mean, SERIOUSLY hated it!! I ached, head to toe....I lost "me" entirely. I threatened to kill myself more than once.....just to end the tears, the pain and feeling of gloom and doom. Then I had a complete hysterectomy! NO MORE TAMOX!! Yippeeeeeeeee! For 2 weeks, I literally felt as though "clouds had parted" and I was me again!! Albeit, ashamed and guilt ridden for imposing so much pain upon my entire little family!!!! Saying "I'm sorry" only works for soooooooo long!!! My med onc recommended Arimidex and scared me into taking it.....advising that it would reduce my risk of recurrence by 50%. I took it for 3 months and GAVE UP because once again, I was a babbling, blubbering, CURSING!!!!-DID I MENTION CURSING????...HOT MESS OF A MOMMA!!! And physically? Don't even get me started on the pain and suffering and swelling and overall crap-of-a-life I was left to "enjoy"????? Seriously? Words like "enjoy" and "grateful" and "survivor" started to piss me off even if someone used them outside of bc context!!! Oh, the anger. I QUIT IT ALL and I walked away. And here is what happened......I continued to feel pain....head to toe and I continued to gain weight/swell/heat flash/sweat/nightmare. Although, emotionally, I felt MUCH, MUCH, MUCH calmer and more like myself again!! I joined a gym with my husband and my kids...sometimes I did participate and other times (if my body ached – which it STILL does, with or without the estrogen blockers!!), I just watched and smiled and LOVED to be there with them!! I went on a DIET – several diets – and failed miserably 3X!!! Then, I bit the bullet and purchased Jenny Craig – lost 20 pounds and I've managed to maintain the weight loss ever since!!! I will NEVER go back to the estrogen blockers because my quality of life SUCKS when I take them! Depression is an inadequate/insufficient word to describe the HELL that becomes my world, on ANY of those drugs. All of my aches, pains, etcetera are likely now due to the chemically induced menopause, followed by true menopause (surgical). I can handle the physical pain – I don't enjoy it – but I can tolerate it!! I'm in love with my family again and vice versa!! I am thin again and my hair is soooooo lovely - now that it has had a chance to grow!! My lymphadema is not nearly as noticeable with the weight gone either! I've signed up for blood work and scans to monitor/check for recurrence. I haven't actually completed a check yet....but soon!!! All in all, I'm hanging in there ladies (and gents) and I thought I should come online and tell it all!!! I care about all of my cancer sisters and brothers out there!!! If any part of this post helped even one of you – PERFECT!!! PM me if you need some one-on-one encouragement or support!!! And btw....I eat NO SUGAR, DRINK NO ALCOHOL, NO BREAD, NO SALT....lots of leafy greens and proteins!! Green tea helps loads, as well!!! These are the things that helped me.....again, for what it's worth!!
Be well and I hope you find happy today - my wish is that you find a truckload of it....but even a smile would be a good start!!! -
PerAngusta - It's good to 'see' you again! I'm really glad you're enjoying your break from all things bc and getting your self back. Thanks for sharing your insights as well as your good news. Enjoy your weekend!
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It seems, from all the stories I read on these threads, that the earlier your menarche, the later your menopause—and the milder your menopause symptoms are. And the further out from an “easy menopause," the milder the AI SEs. I menstruated from ages 10-54, went through “the change" for a year, and I had no idea what a hot flash was (still don't, really—I just get warm and turn on the fan). I was diagnosed nearly 10 years after finishing menopause. So I guess that explains the mildness of my symptoms. Today, though, my muscles ache and I'm a bit headachy and while not feverish, running about a degree higher than I usually do. Is it the change of mfr. of letrozole (my pharmacy couldn't get Teva or Roxane this month and so I got stuck with Accord); the hard workout I had at my initial fitness training eval. at the gym, the Prolia shot I got Tuesday or the sudden plunge in barometric pressure ahead of the snowstorm arriving tomorrow? Who knows? (Doubt it's the letrozole, as it's not my joints that hurt, but rather the muscles we stressed yesterday). I am ready to go back to low-carb (no sugar or high-glycemic starches), but I’m not giving up my 15 oz. of wine per week—nor my meat, cheese or occasional cappuccino. (Yeah, I’ve tried almond milk—but it needs a little half-and-half in the steaming pitcher in order to taste decent atop my espresso).
Life is depressing—not just about cancer, but this is not a thread on which I am allowed to elaborate—and it’s not getting any longer. Can’t spend all my time online as a distraction. Retail therapy is getting too expensive. Not about to start denying myself a few small pleasures in moderation. AFAIK, nobody ever said on their deathbed, "Damn….wish I'd never eaten that!" (unless "that" was tainted or poisoned or tasted awful).
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Lottemarine, good question! Some docs have started recommending using hormonals for lifetime. I'm now on the 10 year plan, 5 more to go. I am tolerating the drug, so I believe I could go longer than 10 yrs, if recommended. And, yes, one is only on hormonal drugs if estrogen positive.
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"Absolute" Benefit for Early Hormone-Positive BC
5 yr Anastrozole = 3% Absolute Risk Reduction
5 yr Letrozole = 3% Absolute Risk Reduction
2-3 yr Tamoxifen & 2-3 yr Anastrozole or Exemestane
3% – 5% Absolute Risk Reduction
5 yr Tamoxifen & 2-3 yr Letrozole
6% Absolute Risk Reduction
April 2006 (Table 1)
http://www.bcmj.org/article/new-guidelines-treatme...
….......................................................
IBIS-I – High Risk Women
5 yr Placebo = 350 out of 3575 = 10% failure
5 yr Tamoxifen = 251 out of 3579 = 7% failure
= 3% Benefit (Absolute)
(Click on SUMMARY OF RESULTS)
http://www.thelancet.com/journals/lanonc/article/P...(14)71171-4/abstract
…........................................................
IBIS-II – High Risk Post-Menopausal Women
5 yr Placebo = 85 out of 1944 = 4% failure
5 yr Anastrozole = 40 out of 1920 = 2% failure
= 2% Benefit (Absolute)
http://www.thelancet.com/journals/lancet/article/P...(13)62292-8/abstract
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These benefits seem extremely low, am I missing something? For all the side effects we go through, I thought the benefits would be much higher. Can anyone explain this in another way?
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What frustrates me is that we have no way of measuring how well our AI therapy is working until and unless we develop mets. If we die of something else first, that is considered a success.
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That's why I wish research would set aside this cure for cancer stuff for I doubt there ever will be one and figure out a test that tells us if the hormonal therapy is working or not.
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A friend of mine is an Oncology nurse who also had Stage 3 BC. She just wrote me the other day to tell me that she has been keeping a close watch on AI patients. She said 90% of women who had a recurrence had stopped their AIs 2 to 3 years previously. This is obviously unofficial, but she has a personal interest in it and watches this carefully.
Also, I hear from a lot of breast cancer patients - thousands through the years. Many times I've gotten regret letters from women who stopped their AIs or Tamoxifen. Since myself and my sister are such high risk, our MO said be prepared to take them forever.
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Wait, I'm confused about the list of benefits based on having early hormone positive breast cancer. The list posted said that with tamoxifen the benefit is only 3-5%? My MO told me taking it reduced my risk by 50%. Was he wrong to tell me that?
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The Oncotype report says risk is reduced 50% with tamoxifen, and I was told even more with AI's.
I have osteoporosis (preexisting, now worse) and atrial fibrillation which seems to have developed while on Femara. My oncologist originally wanted to switch me to tamoxifen due to bones but now due to atrial fibrillation, with increased risk of clots, is keeping me on Femara.
She said that after 5 years, with both breasts gone, Femara will only reduce my risk by 1.3% so she suggests going off.
I was okay with this med the first summer, partly, I believe, because I had already gone through menopause 10 whole years before. Over the fall and winter, had horrible joint pain and addressed it with exercise every day. Second summer felt fine. But now, in the second winter, I am really feeling the effects. I have new age spots all over- don't know what that means? Dry skin, tired, joints hurt. Most importantly I am concerned about the effects on my heart.
I have an autoimmune disorder and don't mean to blame it all on Femara.
I have 3 kids 24-30. One has serious health issues and one has a serious psych. issue. No matter how I feel, or what side effects occur, I will do whatever keeps me around the longest. My kids need me. Staying on for another year but am going to discuss heart and bone issues with the relevant specialists.
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hello artista928,
The trials posted have some caveats associated with them which make them misleading at first glance....
The first trial compares the benefits of AI over Tamoxifen NOT over taking nothing ie placebo.
So AI are marginally better then Tamoxifen is the conclusion of the trial if you have breast cancer.
The IBIS 1 and 2 trials randomised AI versus placebo in high risk for breast cancer but NOT actually having breast cancer at the time they were taking the drug. The primary endpoint was developing breast cancer not recurrence
So if you are high risk for DEVELOPING breast cancer and take Tamoxifen for 5 years will give you a decrease in that risk of 3 per cent.
My understanding is that high risk FOR breast cancer women are not being recommended hormonal therapy at present.
Having said I am on AI, I get moderate joint pain but I am hormone positive and plan on taking the drugs for as LONGas I can manage the side effects with lifestyle modifications techniques.
There is robust evidence that when you HAVE breast cancer and particularly node positive disease AI work and do so well.
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Ohh and you are spot on there cure for cancer wil not not be a SINGLE approach - it is too tricky - it moves and changes - but a collection of targeted and immune modifications/drugs that move with it
I agree - evil evil thing - I so so wish for on/off button! Turn it all off...
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Lottemarine..... I am no doctor, but the idea, as it was explained to me, is that, if there are any sneaky little cancer cells left after all the treatments, then you deprive them of their food (estrogen) and they starve to death. It was thought that 5 years was plenty long enough to kill them all.
But then they found a slight increase in effectiveness with 10 years. I don't think anyone is quite sure why that is, or if it's even right.
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this is for MT1: I took tamoxifen for 18 months, switched to Arimex for another two or so years. Hated the side effects. Stopped the hormone inhibitors in 2006 and was fine until I received my a stage IV diagnosis in 2016. But those ten years I lived it up and did not hurt. For me, I am glad I went off the inhibitors. I am ok with knowing my time is limited, but I am older than most on this site. I just turned 67. Good thoughts on your decision. I will keep you in prayer
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ESTRADIOL CONVERSION CHART
http://www.endmemo.com/medical/unitconvert/Estradi...
Min. 45-46 graph "1/2 of Recurrences & 2/3 BC Deaths Occur After Completing 5 Years Tamoxifen"
Min.38-40 Estrogen *** bar-graph on "picamoles per liter" Aromatase Inhibitor in Post-Menopause
*** denotes E2 (Estradiol) expressed in pmol/m2
[1 pg/mL = 0.272405 pmol/L] to [40 pg/mL = 10.896314 pmol/L]
Patients in the lowest quartile of E2 (Estradiol) levels are at increased risk of osteoporitic fractures, typically <5pg/mL.
A.I. Drugs aim for complete E2 and E1 suppression.
(source: MayoClinic Test ID ESTF)
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SNIP
SOURCE https://community.breastcancer.org/forum/73/topics...
Jan 20, 2017 11:06AM JohnSmith wrote:
Study Finds ESR1 Mutations Drive Metastasis in ER+ Breast Cancer
http://www.cancernetwork.com/videos-breast-cancer/study-finds-esr1-mutations-drive-metastasis-er-positive-breast-cancer
In this short 2 minute video, Suzanne A. W. Fuqua, PhD, of the Baylor College of Medicine, discusses a new study that found that in addition to conferring resistance to hormone therapies, estrogen receptor (ESR1) mutations can cause cancer cells to metastasize.
The researchers generated ESR1 Y537S homozygous mutations using CRISPR technology and found that the mutation drove distant metastasis in estrogen receptor (ER)-positive breast cancer cell xenografts. Using the METABRIC database, the researchers also found that this gene expression signature predicted poor disease-free survival and distant lung metastasis in ER-positive patients.
Fuqua presented results of the study at last months 2016 San Antonio Breast Cancer Symposium (SABCS)................................................................................
"Memorial Sloan Kettering Cancer Center (MSKCC) and the University of Michigan (U-M), separately made an intriguing discovery about relapses in hormone-positive breast cancer. Many such relapses may be associated with mutations in ESR1 arising after estrogen deprivation, prompted by prolonged aromatase inhibitor exposure.......Both studies found "ESR1 mutations are relatively frequent events in advanced ER+ hormone-resistant breast cancer, particularly in metastatic lesions from women who took estrogen-lowering drugs such as aromatase inhibitors,".... "Thus, ESR1 mutations are rare in newly diagnosed, untreated breast cancers but appear to be frequently acquired during progression to hormone resistance, especially in the context of estrogen-deprivation therapy,"
she wrote. ….as an important finding in terms of resistance to hormonal therapy, The work fingers estrogen-deprivation resistance as the culprit, as aromatase inhibitors prevent estrogen production." http://www.biosciencetechnology.com/articles/2014/...
therapy-resistance?et_cid=4282668&et_rid=45516029&type=ct (old link).................................................................................
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Moderators, please publicly advise why BCO.org removed above posted links to (2) medical studies regarding ESR1 mutations resulting from prolonged use of aromatase inhibitors and thereby contributing to metastatic BC. Please kindly advise. Thank you.
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WeAReConnected
Thanks for putting up that very interesting video where Dr Paul Goss discussed endocrine treatment and aromatase inhibitors. It was very informative particularly as I have just completed 9 years of an AI and have to decide where I go to next, continue or go on to Tamoxifen. Seems it has now just disappeared off the site and it has been deleted. Unfortunate, as this could be very helpful to a lot of women out there needing to make decisions with their treatment.
Ched
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weareconnected,
It would help all of us to understand your perspective if you filled up details of your history in the profile section.
ESR1 mutations are part of Aromatase inhibitors resistance seen in metastatic disease NOT the cause of metastatic disease - it is good to have knowledge but important to come across Clearly when posting data on trials.
Your previous post on AI trials referred to women without breast cancer.
That was not clear in your post. Some women misread that - see the following few posts.
I agree AI have some awful side effects - I suffer from severe muscle and joint pain.
But at the moment all the available data (and yes I am aware there is commercial component to any pharmaceutical product with such a large audience) supports use of AI in hormone positive breast cancer at high risk of recurrence for at least 5 years and maybe more - whether a woman chooses to take them or not is a choice to be respected.
post trials - I think is great - but please check your context
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Hello ched,
I see you are from Australia.
I am from the Gold Coast.
May I ask why Femara? The first line is Arimidex.
I am on Arimidex - but without giving me a good reason (I asked) my second opinion oncologist suggested Aromasin?
Any information you can share would be greatly valued.
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Knowledge is Power.
Thanks, WeAreConnected
"ESR1 mutations found prognostic but not predictive in metastatic breast cancer"
Publish date: August 8, 2016
http://www.mdedge.com/oncologypractice/article/111684/breast-cancer/esr1-mutations-found-prognostic-not-predictive
Key clinical point: An ESR1 mutation in circulating DNA after progression on endocrine therapy was a marker for poor prognosis but did not predict benefit from subsequent therapy.
Major finding: Women with ESR1 mutations had poorer progression-free and overall survival (hazard ratios, 1.7 and 1.9). Adding palbociclib to fulvestrant halved the risk of progression-free survival events, regardless of the presence of an ESR1 mutation.
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Spot on Falconer - thank you for posting
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Hi Wildplaces,
I am on the Mid North Coast NSW. My oncologist said that Arimidex and Femara are equal, and they try either one or the other initially, and often switch between the two depending on side affects. Although I have had terrible side affects along the way I have stuck with Femara for the last 9 years. Bone density has now dropped dramatically over the last 3 years, so having to think about stopping Femara or going onto Tamoxifen to get a total of 10 years endocrine therapy.
Maybe the oncologist thought Femara was the better option for me, as I did not do chemo with 1 positive node. They suggested that having the ovaries out was an option equal to having chemo, for luminal A, Grade 1 IDC. One will never know if it was the correct decision or not.
Ched
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https://www.youtube.com/user/gzajicek20/videos
Dr Gzajicek MD on many cancer topics, including Tamoxifen & aromatase inhibitors
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"Memorial Sloan Kettering Cancer Center (MSKCC) and the University of Michigan (U-M), separately made an intriguing discovery about relapses in hormone-positive breast cancer. Many such relapses may be associated with mutations in ESR1 arising after estrogen deprivation, prompted by prolonged aromatase inhibitor exposure.......Both studies found "ESR1 mutations are relatively frequent events in advanced ER+ hormone-resistant breast cancer, particularly in metastatic lesions from women who took estrogen-lowering drugs such as aromatase inhibitors,".... "Thus, ESR1 mutations are rare in newly diagnosed, untreated breast cancers but appear to be frequently acquired during progression to hormone resistance, especially in the context of estrogen-deprivation therapy," she wrote. ….as an important finding in terms of resistance to hormonal therapy, The work fingers prevent estrogen production."
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https://community.breastcancer.org/forum/73/topics...
SNIP
Jan 20, 2017 11:06AM JohnSmith wrote:
Study Finds ESR1 Mutations Drive Metastasis in ER+ Breast Cancer
http://www.cancernetwork.com/videos-breast-cancer/study-finds-esr1-mutations-drive-metastasis-er-positive-breast-cancer
In this short 2 minute video, Suzanne A. W. Fuqua, PhD, of the Baylor College of Medicine, discusses a new study that found that in addition to conferring resistance to hormone therapies, estrogen receptor (ESR1) mutations can cause cancer cells to metastasize.
The researchers generated ESR1 Y537S homozygous mutations using CRISPR technology and found that the mutation drove distant metastasis in estrogen receptor (ER)-positive breast cancer cell xenografts. Using the METABRIC database, the researchers also found that this gene expression signature predicted poor disease-free survival and distant lung metastasis in ER-positive patients.
Fuqua presented results of the study at last months 2016 San Antonio Breast Cancer Symposium (SABCS)…...............................................................
SNIP
https://community.breastcancer.org/forum/73/topics...
Aug 20, 2016 02:05PM JohnSmith wrote:
More "ESR1" news released recently.
According to this recent Abstract in JAMA Oncology, mutations in the estrogen receptor (ESR1) are associated with worse outcomes. -
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.
................................
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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