Aromatase Inhibitor and just walking away.
Comments
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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.
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