FEMARA
Comments
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Ellelou, I checked it out a while back at Silverscript and United Healthcare Medicare RX's and it was way way way more than $250 a month. $11K plus a year for 75mg, 1 pill a day. I would have a lot of trouble paying thousands a year for a drug and doubt I would qualify for assistance. So here's hoping I never need it.... or I'll take a low priced alternative : (. Xeloda is another one. Just thinking ahead.
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Artist, I wouldn't be surprised if you could try an aromatase inhibitor again in the future. Maybe at that point your liver will be in a different mood.
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Thanks Shetland, I sure hope so although this Onc says no.... I will push for it later on or get a third opinion. Happy News for all for 2016!
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Just started the Accord brand of letrozole and hoping that it is kinder to me than exemestane was. Happy New Year to all and hoping you do well with this drug or at least tolerate it.
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Yikes night leg cramps - wake me up every night both legs and feet. Tried increasing magnesium.
Is this anotherSE?
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You might want to get your K (potassium) level checked. Also check the Zn (zinc) and Mg (magnesiim) levels checked to be sure the ratio between all 3 are in the right ratio. It is important that all 3 are in the right ratio for them to work correctly which is very important.
1/2 way through 12 weekly Taxol, I started having issues with keeping K (potassium) up to close to 'normal' - still do so on daily K suppliment are necessary but sometimes need to increase them for a day or 2 when night foot/ankle/leg cramps happen, I take another K pill and within 20 minutes cramps are gone. If I do nothing - cramps don't go away. My Zn and Mg numbers are always within normal range and ratios.
It is important to be careful for over all health to have the right levels and proportions as all are important together but imbalances can cause major problems. I have been dealing with my K issues for 6 years that is well document medically - not 'something' 'somebody' said to do.
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RE. Endocrine resistance...
Surprised to see so many mets members here and wonder if my Femara story might be helpful. It's very long and includes a bit of my advanced breast cancer history.
Though I haven't wanted to share my story at bco, I will share it here, because it's unusual...unique in the extreme and irreproducible.
My advanced breast cancer has changed ER, PR and even HER2 status during the past 25 years.
I've always pursued unconventional use of conventional treatments, as well as CAM and holistic approaches. Additionally, I've had lots of surgery and am not including that here.
Was originally diagnosed at age 34 and around 1993, I tried tamoxifen for advanced ER+ breast cancer. Since the cancer was growing on my breastless chest, I could see that it wasn't working and feel the unwanted effects of the drug, so I quit after some months. Same thing happened with Megace. This was pre-AIs and I was pre-menopausal, though didn't choose to have ovaries removed or take ovary suppressing drugs.
Radiation in 1995 got rid of many of the tumors, but they began to regrow within months. My next conventional approach was chemotherapy, Adriamycin, but same thing - tumors grew, I felt ill, so stopped. Iscador and anthroposophic medicine came to my rescue and though I still grew tumors, it was at a slower rate and my overall health and well-being have steadily improved. I've engaged this medicine for nearly 20 years and it's worked miracles for me.
Around the time AIs came on the scene, my tumors were ER-.
In 1999 I got my first lung tumor, but chose to wait until it caused a problem to act on it. It didn't until I developed pleural mets and effusion in early 2008.
I was post-menopausal then and chose to try Femara. The unwanted effects were relieved with holistic measures. Had great response for about 3 years before big progression in pleura/lung. I then quickly ran through Aromasin, Faslodex and even Herceptin (pleural fluid was HER2+ for about a minute). Nothing doing. In 2011 had a VATS pleurodesis that controlled the symptoms, though tumors remain.
This is where things get interesting.
I next tried estrogen, estradiol pills that I dissolved under my tongue. This got me to stable for about 2 years. In early 2014 diagnosed with a dozen tumors in my liver (never had biopsied, so don't know their nature). I next tried topical testosterone for the cancer which seemed to help control it somewhat. In early 2015 developed ascites and tumors in belly and outside of liver. So, I retried Femara four years after it had stopped working.
And it's worked somewhat - at least to control the pleural mets. The liver & ascites, not so much.
I'm now on hospice and continue to take Femara (with no unwanted effects this time around).
This is more of my story than I ever meant to tell at bco, but I think it may be helpful for someone who's really willing to push the envelope of hormonal and anti-hormonal treatments. Also, to understand that cancer nature changes and there are even variations within a single tumor. I think of it like mosquito abatement or antibiotic resistance. Cancer is a life form that develops resistance and sensitivity to different agents. I've been fortunate to have found combinations of various treatments that have served me well giving me both quantity and quality of life.
I hope this is helpful to others on this topic - now and in the future.
Healing regards always, Stephanie
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Stephanie, Thank you for sharing your story. You have endured a lot. I hope the current meds are keeping you comfortable.
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Stephanie, yes, thank you for sharing. All knowledge is good and your journey is inspiring
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Stephanie, Amazing story! Goes to show that things are way beyond what the average person thinks they know about breast cancer. I am impressed with your feistiness and amazing resiliency, and found your story very inspiring. It meant a lot to us that you shared it. Enjoy today, that is what we all must do, no matter what stage in this beast and for that matter those without cancer should do as well..
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Thank you so much for sharing your story Stephanie!
We know it will be helpful to others and we're glad to hear that your quality of life has improved through the treatment you received.
Sending big hugs your way
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Thank you for the warm welcome. I'm glad my story isn't too "out there" for the forum. And I hope it's helpful to those who are looking for this sort of information.
One note about the estradiol - I dissolved the tablets under my tongue (1-2 ml daily) to by-pass the liver and get the most benefit. It's a trick I learned from a MTF transgender forum. Maybe superstition, but there are lots of us doing it for different reasons.
Best healing wishes, Stephanie
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Manythanks! Ate a banana yesterday and slept like a baby!
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So yesterday I started getting really bad cramps in my feet and calves. I quickly took a magnesium and drank about 20 ounces of water as fast as I could and that averted the worse of it. The cramps were coming on so bad I was pacing the floor trying to stop them. Cramps have been more frequent since Femara.
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Hi ladies, I said I would keep you updated on changing to the brand name (Femara).......The first two months were amazing!!!!!....I had sooo much energy and was practically pain free. Half way through the third month however, I started to have excruciating bone and muscle pain in my legs to the point I could hardly walk. I am back on Letrozole, as it gave me mostly joint pain and nausea, which still beats what I was going through on Femara. I have an appointment with my MO on the 19th and together we will come up with another plan. He was encouraging me to take a couple of months off so I might indeed do this, although it scares me a lot the thought of not having my "security blanket".
Wishing everyone a Happy New Year with minimal aide effects
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HI Scottiee,
You're making me rethink my assumptions.
My first round from 2008-2011 of name brand Femara came with numerous unwanted effects, most noticeably arthritis-like pain in my hands and other joints, sciatic and bone pain. Holistic helpers like vitamin D, glucosamine sulfate, movement and massage with warm oil were very helpful for those effects.
In early 2015 I began taking the generic letrazole and have had none of the unwanted effects. I just figured that my body is doing something different now.
Your story made me think that it might be the difference between formulations.
Thanks for the new idea.
healing regards, Stephanie
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Now this makes me think could brand name Femara be stronger than the generic
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Longterm, I think if you go back some pages the ladies were talking about the extreme differences in manufacturers of Femara and the generic counterparts. They had the companies complete list of fillers in each formulation and many women said they tried one with extreme SE's then switched and found major improvement. Wish I could tell you how far back but I am thinking mid Nov? I was on Letrozole and my liver enzymes sky rocketed. I had wondered if changing to another company would improve this situation but my Onc wouldn't even consider the possibility?
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artistatheart - I don't know how a tiny little pill can cause so much havoc but if my liver enzymes had skyrocketed I would be concerned because that would be an indication of liver damage. But AST and ALT can be indicative of other problems. If you got to rxlist.com you will get a list of what each test covers - sometimes it's a bone or heart problem.
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Artistattheheart all I could say is that we've been in big Cancer Centers, Medium Cancer Center, and now in a smaller one, and in all of them even having so called good doctors, I always pre knew something was wrong, or the next tx Dani would be put on, or I asked for it. that's why I don't sleep, and I always feel I have to know more, because we do. And these docs have to take in consideration your inputs and instincts. It's so frustrating.
Marijen it's unimaginable that they won't pay for good care and ppl to have long and productive lives. I know they are charging 10K for my daughter, thank the Lrd Insurance is picking up most of it, she is paying tons of $ for Ins. - but I cannot think how anyone in this situation has to deal with ONE more annoying and time consuming thing.
Ellelou you put it together so well. She already had back when Faslodex and Femara, she really was on everything already. I wonder which would be the best mixture for Ibrance. She is going with Letrozole, so let's hope.
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After reading all the posts about how Teva was the only generic letrozole that had as low a SE profile as Femara (due to its short inactive ingredient list), I tried to get several pharmacies to order it, but none of them were able to (distributors set the mfrs. available to pharmacies). I ordered 3 mos.’ worth of Novartis UK’s Femara from CanadaDrugs (pricey, but 1/4 the price charged by pharmacies--even Costco and OptumRx mail-order) and have confirmed they are on their way across the pond. Meanwhile my neighborhood indie pharmacy, which tried to get Teva, was able to get Roxane (Boehringer Ingleheim) instead--dirt cheap--and to my surprise, it has the shortest inactive ingredient list (no dyes, few fillers) of any letrozole, even Femara. Going on 10 days now, so far, so good. (2 night sweats, some morning stiffness and a partridge in a pear tree). Was even able to lose 2 lbs., with prudent eating and increased exercise. Beginning to second-guess my investment in the brand name Femara--but I do have 11 refills available on the Roxane version.
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Artist at heart, thanks for the tip about earlier conversations here about different versions of Femara/letrazole. I'll flip backward in time, should I need advice about other formulations. Just now, I'm so very grateful to not be suffering unwanted effects from the drug.
Very best healing wishes for you as you sort out the rising liver markers. Can be confusing, scary and frustrating. Then to have an oncologist you can't quite trust...a double whammy.
warm healing regards, Stephanie
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Wow, Roxane (Columbus, Ohio) Letrozole has hardly any inactive ingredients. Hmmm, wonder why??? And does it even matter--I mean are these amounts so tiny that they don't matter. I started this here because in the stage iv bone mets thread several members discussed Teva as better than SunPharma regarding SEs due to inactive ingredients.
Anyone have a smart pharmacist to ask?
inactive ingredients for Letrozole by Roxane:
1. ANHYDROUS LACTOSE
2. CELLULOSE
3. SILICON DIOXIDE
4. MAGNESIUM STEARATE
5. SODIUM STARCH GLYCOLATE TYPE A POTATO
7. STARCH,CORN
Here is my older post about ingredients. At the bottom is the link to the site when I got all this, so you could go there and look up a formulation if yours is different. It's a very interesting site. Dec 8, 2015 06:20PM - edited Dec 8, 2015 06:21PM by Ellelou
Inactive ingredients in Femara by Novartis:
- SILICON DIOXIDE
- FERRIC OXIDE RED )
- HYPROMELLOSES
- LACTOSE MONOHYDRATE
- MAGNESIUM STEARATE
- STARCH, CORN
- CELLULOSE, MICROCRYSTALLINE
- POLYETHYLENE GLYCOLS
- SODIUM STARCH GLYCOLATE TYPE A POTATO
- TALC
- TITANIUM DIOXIDE
Inactive ingredients in Letrozole by Teva:
- SILICON DIOXIDE
- FD&C BLUE NO. 2
- INDIGOTINDISULFONATE SODIUM
- ALUMINUM OXIDE
- FD&C YELLOW NO. 5
- FERRIC OXIDE YELLOW
- LACTOSE MONOHYDRATE
- MAGNESIUM STEARATE
- CELLULOSE, MICROCRYSTALLINE
- POLYETHYLENE GLYCOL 3350
- POLYETHYLENE GLYCOL 4000
- POLYVINYL ALCOHOL
- SODIUM STARCH GLYCOLATE TYPE A POTATO
- STARCH, CORN
- TALC
- TITANIUM DIOXIDE
Inactive ingredients in Letrozole by Sun Pharma
- LACTOSE MONOHYDRATE
- CELLULOSE, MICROCRYSTALLINE
- STARCH, CORN
- POVIDONE K30
- SODIUM STARCH GLYCOLATE TYPE A POTATO
- SILICON DIOXIDE
- MAGNESIUM STEARATE
- HYPROMELLOSES
- FERRIC OXIDE YELLOW
- TITANIUM DIOXIDE
- POLYETHYLENE GLYCOLS
- TALC
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CVS only had the Accord generic, which has a fairly long list of inactive ingredients compared to Teva or Roxane. Didn’t check with my neighborhood Walgreen’s. OptumRx, which was my mail-order pharmacy when I had United Healthcare PPO, refused to cover any part of the brand-name Femara and also refused to reveal which generic letrozole they would ship, as they change mfrs. at will depending on their wholesale cost (they’re kind of partial right now to Mylan--which I’m not sure makes letrozole)--and Roxane for montelukast. Roxane’s letrozole ingredient list is striking for its absence of talc--to which some are sensitive, glycols (an alcohol), or dyes (such as FD&C blue) & pigments (such as red or yellow ferric oxide and white titanium dioxide). Because it has fewer binders, it probably dissolves faster and is a smaller pill.
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When I looked up the active ingredients in the Accord brand, it was very similar to the brand name drug of FEMARA. So far, am finding some serious hot flashes but joint pain is on par with my age...but then again, it has only been 10 days on this drug so we shall see. I am thinking that this is going to be another rough ride as it was for the 2.5 years I took exemestane. Ugh!
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april485--I'm 60 and I have been on Letrozole since June. I find that the hot flashes diminish over time. Good luck!
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I have Letrozole from Roxanne - I get it at Safeway Pharmacy. Just got lucky for once. Sides are minimal.
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Thanks Ellelou - from your lips to God's ears..LOL. I did my time with hot flashes during menopause 10 years ago. I am 60 also. Exemestane made me feel 90! Hoping that letrozole is kinder on the joints and bones...we shall see!
Marijen, am hoping that this is the case for me too.
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When you call to refill your letrozole prescription ask for Roxane. They might have to order it of course so don't wait till the last minute. I always ask for Teva but maybe I'll try the Roxane.
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In this weather a hot flash or two might not be a bad idea--I could peel off the long-johns and turn down the thermostat to save some $$$!
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