Aromatase Inhibitor and just walking away.
Comments
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Juniper Cat, I think there are a lot of questions we'd all raise if we could go back to the beginning, minus the shell shock and knowing what we know now!
(PS - like you, I was on an AI prior to radiation and stayed on it throughout. I asked my RO whether RT would be more effective if I went off it - her response was that there were 2 schools of thought on that question and she was perfectly comfortable keeping me on it. You're right that there aren't many of us going that route.) I hope both you and your sister do very well on Arim. and that it does well by you!
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My MO started me on anastrozole. I had horrible SE's. I had panic attacks, flu like symptoms and my legs felt like sludge. After nearly 4 months of trying I emailed my MO out of desperation. Two weeks break and he wanted to start me on Tamoxifen. I called his nurse and told her I have a STRONG family hx of blood clots and stroke. No thank you. He sent an rx in for exemestane. I have been on it for 11 months. I am doing great. Occasional hot flashes and some morning aches but overall I can do this. If the vaginal dryness wasn't so bad I would feel pretty normal.
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Hi JuniperCat:
I have links to a couple of head-to-head studies of aromatase inhibitors in the adjuvant setting of early (invasive) breast cancer, which may be of interest to you and others above.
(1) "FACE" - Letrozole versus Anastrozole
Smith (2017): "Comparative Efficacy and Safety of Adjuvant Letrozole Versus Anastrozole in Postmenopausal Patients With Hormone Receptor–Positive, Node-Positive Early Breast Cancer: Final Results of the Randomized Phase III Femara Versus Anastrozole Clinical Evaluation (FACE) Trial"
FACE Trial Results (2017): http://ascopubs.org/doi/full/10.1200/JCO.2016.69.2871
(Free pdf version available for downloading under PDF tab)
Note: Patients in this study had node-positive disease.
This much older (2007) article provides an explanation of the background and rationale of the FACE trial:
O'Shaugnessy (2007): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2001225/pdf/10549_2007_Article_9702.pdf
(2) NCIC CTG "MA.27" - Anastrozole versus Exemestane
Goss (2013): "Exemestane Versus Anastrozole in Postmenopausal Women With Early Breast Cancer: NCIC CTG MA.27—A Randomized Controlled Phase III Trial"
MA.27 Trial Results (2013): http://ascopubs.org/doi/full/10.1200/jco.2012.44.7805
(Free pdf version available for downloading under PDF tab)
See also, this more recent 2016 ASCO Meeting Abstract looking at ductal versus lobular histology:
Strasser-Weippl (2016): "Outcomes of invasive ductal (ID) or invasive lobular (IL) early stage breast cancer in women treated with anastrozole or exemestane in the Canadian cancer trials Group MA.27"
http://meetinglibrary.asco.org/content/165026-176
[See also: Strasser-Weippl (2018): "Outcomes in women with invasive ductal or invasive lobular early stage breast cancer treated with anastrozole or exemestane in CCTG (NCIC CTG) MA.27"
http://www.ejcancer.com/article/S0959-8049(17)31411-9/pdf
Please don't ask me any questions, because I read the 2007 paper a while back, and only skimmed selected sections of the trial publications.
BarredOwl
[EDIT: 2018 link added]
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Thank you Hopeful and Molly! And you, too, BarredOwl (I'll check out the links you've provided. As always, your posts are immensely informative!) 😺
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Thanks, Artista, for the GoodRX heads up!
Junipercat - my MO told me she would prescribe letrozole first because it'd most likely be the cheapest option for me (no small consideration when you're going to be buying it for the next 5 to 10 years). She made it clear, though, that I didn't need to put up with any bad side effects because there were other options available. I felt absolutely horrible on letrozole, but tolerate exemestane very well - it only hurts my wallet!
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Georgia, my MO prefers exemestane, but it's just not affordable for most. It runs about $200/mo. here. So we went with anastrazole when switching from tamoxifen to AI. They say letrozole is basically the same thing.
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Georgia, thank you for your response. My insurance is so arbitrary in that it covers some things and is terrible about others. I'm fortunate in that my Arimidex is only $5 a month. Who knows what it will be if the ACA gets changed.
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Those rx rates are bewildering to me - I've been on both letrozole and exemestane and in neither case has the monthly cost (after insurance) been more than about $5. The randomness of it all is pretty mind-boggling to me.
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Wow. Just checked what Exemestane TAB 25MG would be since Letro was horrible for me and seems Arimidex would be the same as they are both using the same mechanism. Yikes! My Medicare part D would be $460 a mo! GoodRx lowest would be $150 a mo! So that's out. I guess Tamox is it. I don't see cutting the Letro in 1/2 wouldn't cause my hair loss to increase. It's ok now on Tamox, and that's big for me at 52 to not look like I'm 72 yet. Can't control how I feel but can do something about how I look.
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Prices are about the same for me, Artista. $505/mo. through my insurance or $190/mo. through GoodRX. (Up until 1/1/17, I paid $118 for 90 day supply).
I'm one of those that did much better before the ACA - I had great coverage throughout diagnosis & treatment, but it's all been downhill since (policies cancelled every year, premiums doubled, higher deductible, and - obviously- no break on this particular prescription). I'm not poor but am certainly not rich; $200 a month would take more sacrificing and scraping than I'm willing to do.
Maybe going back on Tamoxifen is an option (buy my MO won't like it!)
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It's up to you, not your MO. My MO had been telling me all along how I need every possible benefit % increase but when she saw me last visit in absolute misery, she said she's fine with Tamox. If generic Aromasin wasn't so expensive I would have tried it since they say it's different mechanism and hair loss isn't up at the top if at all on the se experience list. But I am very strapped. Letro and Tamox are free with my insur, thankfully. But I won't go back to Letro, even if it was reported to help with all cancers and not just bc.
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Update on the dental problems related to the meds. & bone thinning.... I had a broken tooth concern in my last post. Now I frequently awaken in the morning and my teeth are out of alignment. I can't make my molars meet and my TMJ hurts when I try to make my jaws meet correctly. (I have NEVER had a problem like this before!) Eventually throughout the day they mostly move back. This is crazy!
I started out on Letrozol and it messed with my mind so very badly that I said I'd rather die of cancer than live like that. I threw it away. Next Dr. visit I was put on Exemestane. I have gained SOOO much weight and my joints ache, hair is thinning, teeth as noted above etc. I take L-Theanine which really does help the depression. But after one year of treatment and feeling like I do - I don't know what I will do if the 5 years is extended to 10 or more. Could the 10 or more be dictated by the drug companies???
Artista - I am on Part D too. My Letrozol was only $20 but I couldn't tolerate it. The Exemestane WOULD be over $1000 for 90 days but I called and filed for an exemption and they approved it - so the cost now is $115 for 90 days! You might look into this.
Ade
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Hi Ade:
Please inform your Medical Oncologist about all of your dental and jaw concerns and symptoms.
In parallel, please see your dentist to discuss all these concerns and other possible causes for tooth breakage. For example, stress can cause teeth grinding at night, although you may not be aware you are even doing it. If that may have contributed to your broken tooth, a guard might be a simple solution to that at least.
As far as continuing endocrine therapy beyond five years, this would be re-evaluated at the five-year point. This will be a discussion between you and your medical oncologist, in light of what the totality of available clinical evidence indicates at that point in time. You would always have the right to decline extended treatment if you don't feel the estimated risk reduction benefit is worth the quality of life impact.
From what we know today, the benefit of extended treatment is not as large as it is in earlier time-frames, so risk/benefit must be weighed carefully. Certain biomarker tests (e.g., Breast Cancer Index) are now being used to help inform decisions about continued treatment. Perhaps in a few years, we will also have the results of any translational "biomarker" studies from recent clinical trials of extended therapy, and we may have a better idea of which patients are likely to benefit from extended therapy and by how much.
BarredOwl
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Ade,
My dentist gave me a set of simple exercises to help with the pain I was having in my jaw and ear. They helped considerably, and saved me from having to use a mouth guard at night. I'm not sleeping well as it is with this TE in and hot flashes waking me up, so I didn't want to add another thing to my already challenged good night's sleep!
And BarredOwl is spot on about the ten year factor, so don't sweat about that. You may not be a candidate for extended therapy. -
Thanks Ade! Did not know of such a way. You call Medicare or the drug company to get the reduction in price? I think I"m going to pass on it generic aromasin. Not sure my MO would want me back on any AI after hearing I have been dx'd with osteopenia since last visit with her.
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Thank you, Falconer & BarredOwl - I appreciate the advice.
Artista - I called the number on the medicare part D I.D. card and they directed me. You also should have a number on the statements they send you. I got 2 of my 3 meds lowered substantially this way! I think you have to reapply once a year for this exemption.
Ade
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Meow: If you're still on the site, would you be willing to expand on this a little? I am struggling with exemestane side effects now, after having horrible SEs with anastrozole. Any insight appreciated.
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I took Tamoxifen for a year, then Femara and Zoladex for another year. I would cry all night and it made me super bitchy/intolerant so I quit in Sept 2016. On 4/1/17 I was diagnosed with mets to the pleura. Could be because I stopped taking it or it may have been there from the beginning. Getting my first PET scan tomorrow. Hugs out.
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BeAlive, I hope that it can be said to have been from beginning so you don't have to second guess your decision. I know in 11 months I am quitting Anastrozole. QOL is my reason and of course I will not know anymore than you, what is ahead. Keep us posted though and hugs from me.
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For me, Arimedex sure brought on anxiety and lack of sleep, crazy dreams and who knows what caused which? I think its the messing around with hormones in the body that gives us these terrible SE's. Drs deny that but we women are not crazy! And I immediately get a good night's sleep if I forget to take my daily dose; although I've been very compliant for 3 years. I've had 2 recurrences so I know radiation didn't work, not so sure I'd say the same of my chemo in 09 as the 2014 diagnosis was totally different than 07 and 09. And having to take a hormone inhibitor is a lot easier than the chemo SE in 09-10. I've seen grand babies born and children married and really enjoy serving my Lord even if the cancer treatment thing is a crap shoot! Praying that you will be have peace about your decision and good health in the years ahead.
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Been a while since anyone's posted so I may be talking to air...but I have an onc appt. next week and will discuss going off of Exemestane. However my DH has ordered a supplement he found in an online article that just may dim the se's enough that I wouldn't HAVE to stop the meds. Should get it tomorrow & will have one week's trial before the appointment - so we shall see. I am hopeful & have put much prayer into this. (If it works as many testify to I will share it with you!)
Have a great week!
Ade
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You might also try switching to another AI. For some it helps.
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My quality of life on these drug were so poor that I had to stop about 2 months ago. I am hitting my 2 year mark and now I am feeling anxious. I had my blood work yesterday and next Friday is my mammogram. I feel like no one understands how anxious I feel. What have others experienced when they have had to say no to drugs?
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Butersmom did you try tamoxafin as well as the Als? I ended up using it rather than the Als. I'm now back on Arimidex because I have been diagnosed with cancer again in the same breast.
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That was suggested. I haven't decided yet. I was so wiped out after about 9 months of little sleep, anxiety attacks etc. I put everything on the back burner until after my Mamogram, blood work, and visit with the surgeon.
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I would rather have a decent qol than suffer just so I may get 3-4% added benefit v Tamoxifen. So despite my profile which doesn't show 95% ER 50% PR and Ki67 75%, I am doing much better on T all around.
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Artisa928 I'm glad you're doing okay with tamoxafin. It was much easier for me too. Unfortunately my relapse occurred while on it. I'm hoping for an easier reaction this time around on Aromasin.
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You might also try switching to another AI. For some it helps.
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Brutersmom- I went through Tam, Femara, Arimidex, Tam over four years. I quit about a month ago. I feel like I am gradually recovering - HF are improving, as are joint/ligament issues. Sometimes I feel a little guilty, but not guilty enough to go back on. If my oncotype dx score can be relied on, the benefit is probably only a couple points at most. If not, it would suck, but what will be will be.
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I have been thinking about how many women struggle with this drug. I was wondering if any studies have been done to determine it the strength of the drug is to much for some women. Just a thought. I would like to do what I can to stop a recurrence but I am not willing to stop living my life to do it.
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