FEMARA
Comments
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Marijen, that table is presented rather confusingly and involves some complex statistical concepts. First, it is not a study of the use of letrazole versus placebo for initial treatment of BC. That table begins after completion of five years of *tamoxifen*. They started the study with 5100 women split into treatment with letrazole versus placebo. When they did their mid-point analysis to see how the results were shaking out, the result between the two groups was very dramatic with a decrease in cancer recurrence of 42%. That is so dramatic that they interrupted and unblinded the study to offer all women in the placebo arm the option to switch to letrazole: it would be unethical to continue the study and not offer those women an effective treatment. 1550 (about 60%) of the placebo group chose to switch to letrazole. In a weird thing that scientists do with statistics, when someone switches groups after initially being placed in a different group, they are not moved to the new group for statistical analysis. It is called "intention to treat" analysis. That means that there are 1550 women who received letrazole who are being counted in the placebo group at the end of the study, though not at the midpoint analysis. The outcome of the study is that women who complete five years of tamoxifen benefit from switching to letrazole rather than just stopping the tamoxifen. There is also disease reduction in continuing tamox to ten years - I don't have that study in front of me right now, but remember seeing it.
About reducing cancer recurrence by 42%: if your chance of cancer recurrence is low to begin with, reduction by 42% may not be worth it. If you are like me (relatively young, stage III, grade 3, multiple positive nodes) with a fairly high recurrence potential, 42% reduction is pretty awesome. That is why I switched from tamoxifen to letrazole as soon as I was confirmed to be in menopause.0 -
Thank you Susan I'll buy that. I'm not good at readig these studies and charts. But where does that leave me? I had one node with three mm of macromets and an occult primary. I would love to know what my reoccurance % rate is but I got no Ki67, no oncotype (no chemo) LX to remove less than 1cm of DCIS and ANLD and 33 days of rads. Staged down to 2A after all that. How do I figure it out? Thanks.
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Bosum Blues, send aletter to your former MO. That is unacceptable. I have a local friend who was taken off Tamoxifen. After a few days on it, she was suicidal. Thankfully her MO immediately switched her.
Stephilosophy, I do have acne from letrozole. Yuk
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Marijen, have you seen this calculator? http://www.lifemath.net/cancer/breastcancer/therap... You put in your data and it and get percent survival with and without treatment. Be sure before you start entering it that you are on the TREATMENT graph, not the SURVIVAL graph. Also, be aware that seeing those numbers can be very upsetting for some people. This calculator will ask you about tamox vs AI, but it doesn't calculate them differently, so you can't use it to tell if you should do one vs the other, but you can use it to show you a survival curve with chemo and a random hormonal therapy or without.
Using myself as an example, the overall survival difference with an AI is 6%. That means that if 100 people just like me take an AI, 76 of them were not going to die of cancer anyhow so there was no difference, 18 of them will die of cancer with or without an AI so again no difference (though the AI could delay the relapse), and the last 6% would have died of cancer without the AI but with it, did not. The rest of the chart tells me that with all treatments, my 15 year survival improves by 30% from 52% chance of being alive in 15 years to 82%. Obviously someone like me needs a full-court press for treatment, so an AI makes sense. For someone without positive nodes and/or with a less aggressive cancer, it might make only a 1-2% difference or less. In that case especially if the person is having SE, it may not make sense to take.0 -
So mine is 6% with therapy and 9% with non therapy after 15 years. It doesn't say how long the therapy is for AI and it doesn't say anything about recurrance. Like right now two years out from DX I'm supposedly NED (they never said that) but they can't find anything. But if I recurr than wouldn't that change the 15 year end results? Where did you get the 30%, 52% and 82%? Thanks for the graph I saved it.
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I don't like that calculator. For one do you put in your age at dx or current age. And it doesn't go past 5 cm tumour..
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Thanks, again my survival increase with letrozole is 3%. So 80% at ten years.
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Bossomblues...I'm so sorry you had to go through that. So unfair, so unempathetic, and I will go as far to say unethical! I know first hand how drugs can drastically affect our mental status. For you not to get that validated is horrific. Maybe if these docs worked with us the compliance rate would be higher than 50 percent! Good luck to all
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Marijen, the 30, 52, and 82 are numbers I got from entering my own personal data. You won't get the same numbers. I'm just using myself as an example.
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I'm sorry Susan, that's a long way from my 3%. I see the MO end of July. I will ask her to tell me what she thinks my % improvement is.
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Mortality: 6.9% expected 15-year Cancer Death Rate.
7% 15-year Kaplan-Meier cancer death rateLife Expectancy: Without therapy, this cancer shortens the life expectancy of a 44-year-old woman by 3.3 years. (from 38.3 years to 35 years Therapy benefit: The therapy selected would improve average life expectancy by 1 years, or
378 days over expectancy without therapy.
32% fewer cancer deaths after 15 yearsThis is what it said when I put my information into that calculator. Can anyone tell me what this means? Thanks
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BosumBlues: I am so saddened to hear your tale of horror. No one should ever be subject to such ill treatment. I wouldn't wish that experience on my worst enemy. What a shame that you have to heal from the abuse of those who were supposed to provide care. Our healthcare providers are supposed to... well... provide CARE. Clearly your original MO has failed you. It sounds as though you have had to pull yourself out of the depths on your own, and that you have done so with the help of your new MO. What beautiful inner strength you must have. I wish you well with your decisions on Femera and Amromasin. QOL is so very important. We all have a finite amount of time on this earth. You deserve many years ahead, and those years should be good ones filled with family, friends, and some beautifully quiet moments. ((( hugs )))
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ndgrrl, the best way to understand the chart is to change the information you put in and see how it affects the results.
The yellow line is your chance of dying from something other than cancer - for someone your age, that will not be a very high risk. The lighter blue is your chance of dying of anything if you have no treatment and the lighter red is your chance of dying of cancer with no treatment. The darker versions of each of those colors are your chances of dying with treatment. A good way of understanding it is to look at your numbers with and without treatment. The farther apart those lines are, the greater benefit you are likely to derive from treatment.
Keep in mind that these numbers are for a population of women like you. You are not a population. You are one person, so your chance of dying is not really X%. It is either 0 or 100%. Still, it does help to understand if you are deriving a large or not-so-large benefit from treatment. That can guide you in a conversation with your doctor about whether continued treatment is right for you.
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Thank you Susan for explaining it to me. I had to wait until I could see it on a computer screen as my phone was far to small.
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Wanted to share my personal experience so far with the use of Femera. Please note I was stage 1, node negative, triple positive. I elected to have a bi-lateral with immediate reconstruction. At the conclusion of chemo which was July 2016, I began taking Femera in August. So, I have been on it approximately 10 months. Please note I concluded my year of Herceptin on March 30th of this year. My most prominent complaint.....aches, both muscle and joint. Most days I was feeling like I had been dragged through the mud. I will also note a weigh gain...but that can be better managed by me. Felt I hit a road block with oncologist so I sought out my best line of defense...that being my Pharmacist. After a very serious and informative conversation, we agreed to change the brand of Femera I was taking. This was just about three weeks ago. Now this is my own personal experience and please don't take it for the gospel, but it is amazing how much better I feel. For me, I am speculating just by changing the brand, thus changing the fillers, it has made a difference for me. I felt that I had nothing to lose and now feel that it was a very good decision. Just my two cents worth, a discussion with a pharmacist cost you nothing and it might help. My very best thoughts to all of you....we all know this is not easy. Stay strong....remember we all have each other.
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Hello, ladies, what a great thread! I am a caregiver for my mother who has been taking Femara for year and a half, and her side effects were hair loss in the beginning, but she is taking Biotin (Natrol brand) for that, and it helps, plus I bought her Nioxin shampoo, and a couple of anti-hairloss serums, altogether hair thinning somehow stopped. But now she is suffering from numb hands at night. I can't yet classify it as carpal tunnel syndrome or trigger fingers, she will see a neurologist soon. But it seems Femara causes issues with hands. Mom experiences numbness, tingling, and she is unable to flex her fingers at night. That only happens at night, and more or less her hands are OK during the day. If anyone is willing to share similar stories and ways to handle this, I'd be very grateful. I want to be prepared at her doctor's appointment, don't want her to be dismissed by the neurologist. Because that already happened once, she was sent home with recommendations of self-massage. No tests, no MRI, no injections or physiotherapy, nothing. Thanks a lot for any help you can provide!
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Yes I was waking up with numb hands, especially my right hand, and joint pain in my hands too but it went away in about 5 min. Now I'm stressed because there is a connection with Letrozole (Femara) vision problems, such as PVD - Poster Vitreous Detachment, where the vitreous part of the eye detaches from the retina. And also bleeding into the vitreous causing clouding. I was ok with the joint pain but not the eye problems. Seeing the opthamologist soon.
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hi, I also had numb hands at night since I had been on an A1. My right hand I went so far as to have carpel tunnel surgery but did not work. EMG test says I have no carpel tunnel but fingers still numb with no medical readon. My MO thinks it coukd be the A1,s I was on.I am now back on Tamoxifen as I coykd not tolerate the side effects of f Arimedex and Femara.
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My hands aren't numb, but I do have trouble with pain in my fingers at night and early morning. MO has me on Glucosamine Chondroitin (I take the triple strength GNC brand) and Vitamin D3 (I,000 IU). It isn't perfect, but does help.
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hi, I also had numb hands at night since I had been on an A1. My right hand I went so far as to have carpel tunnel surgery but did not work. EMG test says I have no carpel tunnel but fingers still numb with no medical readon. My MO thinks it coukd be the A1,s I was on.I am now back on Tamoxifen as I coud not tolerate the side effects of f Arimedex and Femara.
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After 14 months on Letrozole from Roxane Labs I got trigger thumb - hurt so bad there was a lot of things I couldn't do. I needed a wrench to open my water bottles. Got a brace at Walmart for $15 and wore it around the clock from June to November, then one day it just went away. Of course the MO denied it could be from Letrozole.
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I also have trouble with numbness in my fingers, sometimes when I wake up and other times especially in the mornings when I'm holding a spoon to eat my oatmeal for breakfast. Most times it eventually goes away when I move them or do a little massage on them. I do take Krill oil and vitamin D3 along with turmeric so I'm not sure what helps.
Chapagonzo, would you share with us what brand of femara you were on and what you switched to. Is it the brandname Femara or is it the generic letrozole? I have found the Teva brand of letrozole to be easier to tolerate as have others so I'm sure we'd all like to know what you are using now.
Thanks!
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I used the calculator and this is what I got: Life Expectancy:
Without therapy, this cancer shortens the life expectancy of a 66-year-old woman by 0.9years. (from 19.1 years to 18.2 yearsTherapy benefit:
The therapy selected would improve average life expectancy by 0.3 years, or
99 days over expectancy without therapy.
32% fewer cancer deaths after 15 yearsIt hardly seems worth the SEs to continue with the AIs to save me 3 months!
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marijen: Oddly enough, my trigger thumb,which I was unable to bend at all at one point, got better on Letrozole. I've been off of it for 3 weeks and on anatrozole for 1 week, and it's starting to snap again.
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Nancy, it's avery strange thing. I just woke up with it one day. Babied it for 5 months. I think it snapped one time since then.
I think I get an extra 143 days with AI. You're right it's not worth it. I would rather feel good in the years I have left. I do wonder how many get recurrance while on AI?
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marijen: Mine came on when I was in Florida...thought maybe it was the way I was holding my Kindle reading for several hours every day. But it just never improved. In fact, it got worse and I had a cortisone injection in the knuckle...not at the base of the thumb where the swelling was, don't know why...anyway that did absolutely nothing. Then, suddenly, I started moving it again and then had full mobility back, but with some pain yet. Now, it seems to be getting worse again.
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Well you changed drugs. Maybe it will go away again. Do you have a brace? It really helps.
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I tried a brace and it made it worse. It was pressing right on the tendon.
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Ok maybe you could wrap it to keep it from moving around
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I didn't know numb hands was a SE of Letrozole..... I've been taking it for just 2 weeks but for the past week my right hand gets numb at night and during the day if I use my mouse and type a lot or knit. Better call my PDN.....
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