FEMARA
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18 lbs in 18 months. Pain walking due to chemo induced neuropathy didn't help any!
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Chloesmom: Any success with relief from CIPN?
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adavis - join us in the Stage V fitness group. It's quite difficult to stay fit between the cancer and the winter. However, we have a bunch of canadians on there who get it done. There are some good videos to check out.
I take metformin for its anti-cancer activity. I am not diabetic and I actually have low blood sugar. I've realized that it is also what is keeping my weight stable. I gain about 5 pounds every time I forget to take it for a week. It can be hard to get a doctor to prescribe it off label for cancer, but there is a lot support in the literature for this.
>Z<
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I was worried that I would gain some weight while taking the femara, and I did not need to gain any weight. I have been taking femara since the middle of December, and I decided to join a weight loss group at Cancer Wellness center in Northbrook, a Northern suburb of Chicago. The class started on 1/10, and so far I have lost 6 pounds. I wish I lost more, but I am happy with the 6 pounds though. I have been exercising more, including more walking and an exercise video. I also cut out the frozen yogurt I had every evening, and quit helping myself to most of the free samples at the grocery store. I still help myself to fruit samples, but I swore off chip samples. The last class we had on Tuesday, we met at Mariano's grocery store, and there was somebody giving out free samples of Eli's cheese cake, which I decided to pass up on. I also went to a mayoral candidate debate that took place last evening in Evanston, and there was lots of food there, including some miniature bundt cakes, and some chips, and I just stuck to the fruit. I used to go to McDonald's too for Senior coffee too every couple of weeks, and while I was there I would have something else to eat, and I have not visited McDonald's in almost two months. I would like to lose another 20 pounds
For anybody that might be interested, they are having another weigh loss class starting in July at the Cancer Wellness Center, and Kellogg cancer center in Evanston is starting a group in a few months, and I heard Lutheran General in Park Ridge is also starting a class this Spring.
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Hi Zarovka,
Can you post the link to the fitness group? Maybe it's the Femara
, but I can't find it! Thanks!0 -
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I have been on Femara for two years now. I see my oncologist in three days. She is going to want to switch me to Tamoxifen because my osteopororis has worsened, but in my view, bone density decreased at the same rate it has since menopause, no change (I am 66)
Exercise helps with pain but it has to be more than 20 minutes, I find (and others, according to my doc). The first 20 are agonizing and then it gets better and after 45-60 minutes, pain is much improved. I do Tai Chi a few times/week and walk. Warmer temps help too.
I have developed atrial fibrillation on this medication, the adrenal type I believe. Dry and thin skin with little purpura (red) spots especially with very minor rubbing as with carrying a box. I have age spots that have multiplied a lot lately (light brown spots). And the immune system of my skin must be weak because I suffered an unusual mite infestation (don't want to go into detail). I don't think my memory is getting any better. I am fatigued.
I was a polyanna who came on here in the first year and did rah rah posts about how exercise helps, stick with it etc. but I do think there is a cumulative aging effect and I know I feel older than I should, despite my Tai Chi. People say I look young but I don't know....or care. I just want to feel my age.
Tamoxifen would be a problem I believe since I have afib and tests show sticky blood. Also always had thickened uterine lining and many cysts.
I was going to stick with this as long as possible but have some doubts now. Oncologist on Monday, welcome any comments.
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adavis; I posted something about this a little while back. I gained about 25 pounds during radiation and lost half of it after radiation finished. Since starting on the letrozole, I have gained it all back and cannot loose it. I am walking every day 20-30 minutes but nothing seems to help. I also have muscle & joint pain in both my legs, my hands and my right arm. I sometimes think the treatment is as bad as the disease. I am not scheduled to see my MO until April, but if the pain continues, I may call & ask to see him earlier. Maybe he can help with the pain and suggest a kick start to get me on my way to losing again.
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Thanks, Zarovka. I'll soak in all the advice of the "Stage V" (love that!) exercise group. Have a great weekend, everyone,
M
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Also got the thin red skin with red spots. The seat belt made by shoulder a mess.
Exercise helps but will second the report that it is lousy the first 15 min warming up my feet. Any resting and they are like blocks of wood like the metatarsals are fused together. Swimming and massage help. What has improved are the shooting pains and the sudden cramping when i walk any distance. They went from numb 3/4 of the length of my foot to 1/2 the length in the 2nd year but no improvement beyond that. Balance still lousy so i keep my cane with me as am unsteady like walkin on a matter
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Zarokva- Faslodex sounds like a better option than Letrozole. Why not go with knocking out the receptors instead of hoping your blood estrogen levels remain low enough not to help any cancer cells that may be left?
Also, I had pre-existing hair loss before bc. Chemo made me near bald, was surprised I wasn't totally bald since both parents have a lot of hair loss going on. Hair grew back and on Tamox it wasn't increasing hair loss. Now it's like on full blast! I'm tempted to go back on Tamox for 3-4% possible improvement still seems small to me even though my MO says I'm high risk, need to do AIs. Anyone else in this boat?
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The current thinking in dealing with breast cancer is to hold the faslodex as second line treatment if letrozol fails. Since all MBC treatments ultimately fail at the moment, you have to plot your course through them carefully.
>Z<
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I see. Keeping as many weapons available in your arsenol.
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Exactly. The way I understand it, the estrogen receptors eventually learn to trigger cell growth in the absence of estrogen. So we wait for that to happen and THEN knock out the estrogen receptor. Then the cells have to learn to grow without receptors. You get more time if you force the cells to take two steps.
>Z<
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Thanks for the education, zarovka!
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I have been on Femara since March of 2016, so almost 1 year now. No significant side effects, yet, other than maybe being a bit more forgetful. I did get my estrogen levels checked after the first 6 weeks and found that they were still in the "normal" range, so switched from generic letrozole to brand name Femara. After 2 weeks on Femara, the level of E2 dropped to below detection. I had a bone density scan last fall that showed that I had lost about 6% of my bone mass in 2 years, but was still well within the normal range. My doctor wants me to go on Prolia as a preventative, but my insurance won't cover it. Looking into other options...
I rapidly dropped about 25 pounds after my MX in January, 2016 and have not put it back on with Femara. I tell people that the cancer was making me fat
I do try to stay active and walk on a tread mill for 30 minutes after dinner every night, and also fast 12-13 hours a day (no night-time snacking). Other than that, I try to eat mostly fruits and veggies and nuts. Best wishes to everyone! If you are contemplating taking Femara, please give it a try - not everyone has side effects or, if you are like me, at least the first year may not be bad. I figure I'll keep taking it and can switch to Tamoxifen when and if the side effects kick in.
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Grandma3x, I am on Letrozole and I had my estradiol level checked and it was 78. I would like to try the brand name Femera and wanted to know if you had any problems with insurance switching?
Robin
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Been Letrozole for 3 years turning 40 this year. I can't wait to get off it. For the hot flashes at night I take Effexor the minimum dosage and it helps. Also might want to check out cool jams, they help when you get sweaty.
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According to my understanding - Femara/legrozole is only given those who are post menopausal (natural or medically induced) so the hot flashes and other post menopausal issues that you would experience will still exist even after off of it.0 -
My understanding is that when you are in menopause, your ovaries are no longer producing estrogen but the conversion of androgen/testosterone in the fat that is triggered by the pituitary gland can continue to occur. IOW you have a low level of estrogen in menopause. Letrozol stops the process that would still occur after menopause and completely dries up the estrogen. As a result hot flashes will be more severe on Letrozol.
Is that true? Ready to be corrected here.
>Z<
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What's the difference between Femara and Letrozole other than the price. If it's the same thing, why is Letro cheaper (or is it?). With Medicare part D I pay $12 a mo for Letro. Have no clue what Femara would be.
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Femara is the brand name and was developed by Novartis, letrozole is the generic name and after the patent ran out is now made by several different pharmacies.
When I started on Femara in Feb. 2010 the patent was still in effect so it was Femara only available. The patent expired in June, 2011 when it became available in it's generic form - letrozole and I went to the generic letrozole. Letrozole is now offered by several other manufacturers. There are some differences with the other ingredients used by different ones and some have had issues with the different ones but I haven't.
When I started on Femara it was $800 a month. Thankfully my care is through VA so I paid $8 a month.
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I can't see what Femara cost would be at my pharmacy since I'm not on it, but Letrozole cash is $366 a month! Ikes! What do people do who can't afford it?
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I am on letrozole, and I am on medicare, and I purchase it for $4 a month at Sam's Club through my Humana part D. You can also look at goodrx.com, and I am sure you can get it for a lot less than $366 a month by using one of their coupons.
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Oh I don't pay $366 a mo. I was just sharing the shock when I picked up my first bottle of Letro a couple weeks ago. I pay $12.
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Even without insurance generic letrozol is like $20 per month. It's powerful cheap drug.
>Z<
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So the cost they put ($366) is what they think it should be? I'm confused.
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A given pharmacy can ask for whatever $$$ they want, but you can get letrozol for $20 per month.
>Z<
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Do you know if Femara would have less side effects, or work better- and how much you can get for it? Just curious if Letro gets worse on me.
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For some people, Femara has fewer side effects. However, it is very individual. Most people try different brands of generics first. It is just as likely to solve the problem. Teva is a favorite, but there are others. If you scroll back on this thread I think Shetland had some fascinating data on what fillers they use in each brand. That is what changes between brands. You may have a reaction to some of them.
>Z<
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