FEMARA
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So glad that it is getting better. Isn't is awesome to have such a friend and enjoy their company so much that you don't notice the time??
MsP
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I hate Femara. I have decided that quality of life matters too. I am not going to take it. I had a very low Oncotype score (6) which is part of the determination regarding likelihood of recurrence. I also had a small tumor, early diagnosis, no lymph involvement and no vascular involvement.
I had 34 radiation treatments after surgery with 8 boosts. I have thrown everything at this, but I am not going to take the Femara. Has anyone else made this decision, and if so, what does your MO say about it? MY MO just sits and smiles and nods her head. God help me.
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Hi Randi,
As someone living with advanced breast cancer for many years, someone who was helped by Femara for three years (2008-2011) and helped again during the past year, I totally understand why you'd want to stop.
And I support you in that.
Treatment must improve as well as possibly extend our lives.
It doesn't seem to be doing the former for you and who knows about the latter?
Breast cancer puts a spotlight on our mortality, bringing up existential anxiety and fear.
Femara doesn't dim that light, just makes us feel more in-control of our lives and deaths.
There are so many ways we can improve our odds by reducing risk factors that are within our control. Have you seen the Radical Remission thread yet? https://community.breastcancer.org/forum/79/topics...
I encourage you to accept the things you cannot change and address those you can.
If Femara isn't your friend and you can't find ways to live well together, maybe you need some distance from this not-so-helpful helper.
Not giving medical advice, just confirming your right to choose what's right for you!
warmest healing wishes, Stephanie
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I posted last fall that exercise for more than 20 minutes really helped me with joint/back pain (and the first 20 can be discouraging, it gets better). I have been doing Tai Chi five mornings a week for a few months and that always helps: I feel better afterward.
Other new issues on Femara include urinary urgency (and sometimes dribbling), thin skin that bleeds with minor trauma from breakage of little capillaries (purpura, purple spots, sometimes quite large), and I developed atrial fibrillation last fall with a sudden onset, severe episode requiring emergency rescue. I am not saying Femara causes these things, but health has in some ways taken a hit.
I also had a very rare autoimmune reaction to cancer, which caused some issues, neuro and mainly a lot of nystagmus while reading. So who knows what causes what.
I am sensitive to meds, and have trouble with all the osteoporosis meds tried so far. I already had pretty bad osteoporosis when I went on Femara. My oncologist said she was going to take me off if I don't get on something, so I need to try one more time on Forteo and then maybe Prolia, if I can tolerate it. So far Forteo at 10% dose gives me respiratory problems.
I have researched manufacturers. Sun is terrible for me, immediate reaction. I always do well with Teva drugs even when the ingredient list is longer. Roxane sounds possible, and maybe Accord. Right now I have a two year formulary exception for t3h brand name with my Medicare Advantage Plan with BC/BS. I just went on Medicare. I won't pay full tier 3 price until January. That will be $95 so I will again try a generic then, but purchasing privately, just a few pills. I don't want purchase of a generic to throw off my approval for the brand name (which also has a list of ingredients that looks worse than some. I believe it may be the quality and purity of ingredients that makes a difference, and Teva may be good with those too.)
I had grade 3 with LVI (focal, lymphatic was seen in pathology), but low Oncotype at 8 (a mystery) and two mastectomies. I will do just about anything to stay on Femara even though I sometimes wake up feeling like a cripple. I want to be around for my children, who are now mid to late 20's, as long as I can. I had them relatively late in life but still hope to see how they fare with family and work and life and be there to support them as long as I possibly can.
My biggest fear is that no oncologist will keep me on Femara due to bone issues and inability to treat them.
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Hello all, I broke up with tamoxifen about two months ago ish after a year of suffering. I had the ovaries out so I could start femara, had some side effects starting but now using coffee enemas to help my liver process. It's been great and feeling more like myself again! So happy!
Thought I'd share for those adventurous ones...I'm a month out, first two weeks was tough, turned a corner 2 was ago.
I totally get the quality over quantity, made that decision when I quit tamoxifen, Drs freaked, wanted to up my other meds, lol, nope, quit them all!! Guess what happened? We worked together to find a treatment that works for me...don't give up, each med is different.
Xo
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Before bc, I got a custom-made mouth guard for a “crowded airway." It gave me awful TMJ pain, to the point where I had to have it remade twice. I used it up until just before my dx, rationalizing that the sleep lab didn’t say “apnea,” but just “multiple small awakenings” as I had to roll from side to side when one side of my nose got stuffy. I figured I don’t sleep on my back, either. Well, I just got back from a music conference where my roomie--who is a CPAP user--said I definitely had some episodes of apnea when I was on my back. I resolved to resume using the night guard....but over the past couple of weeks I have found that when I’ve had my mouth partially open for awhile and then try to close it, my jaw has dislocated!!! It usually lasts only till I open and my mouth again, but now I’m afraid that if I start using the night guard, I might get TMJ on top of the dislocation. (The TMJ predated, but the dislocation postdated, letrozole). So let’s see: sore hips, trigger thumb (worst and very painful on arising), night sweats, occasional achy joints, and sloooow metabolism (not to mention my pre-AI osteopenia must have progressed. Gee, thanks, letrozole. (And now I can’t donate blood--even if NED--for at least two years after my last pill).
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So far I've had minimal SE's on Letrozole. The most noticeable is slight hair thinning (I'm the only one that can tell). A few aches in the morning and the occasional restless night. Just had my checkup and was told I would definitely be on Letrozole for 5 years....then my tumor sample would be tested (BCI) to see if I would benefit from another 5 years. I do have osteoporosis but not sure if that began before Letrozole because I was taking it about nine months before I had my fist bone density test. I am scheduled for another bone density test in December. I have been going to OsteoSrong since October 2015.....hoping to see improvement in bone density. I've also added fish oil to diet....can't hurt and I read on one of the threads that it helped with joint pain. My problem is consistency....I start something but don't see immediate improvement and stop.
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I am now almost 6 months in on letrozole and I have to say that it is far better for me than exemestane (Aromasin) was. I still have joint pain, I still wish I did not have to take this but I am definitely tolerating it much more than the 2.5 years of exemestane. Thanks goodness. I understand that sometimes the side effects get worse after 6 months so we shall see. One thing that IS worse on this drug is the hot flashes! Yikes!! Those I could definitely do without!
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I have been on Leterozole (Sun Pharma) for 3.5 months. No adverse SE's, which is good, but I just had my estrogen levels checked and they are all within the normal range for postmenopausal women. Total estrogen was actually higher than normal!! WTF! I take it religiously, using an alarm on my phone so that I don't forget and take it at exactly the same time each day. My BMI is 20, I don't drink alcohol, I exercise every day, and I have been in menopause for 5 years! My conclusion is that Sun Pharma is selling us placebos. I have a call into my MO to get my prescription changed to Femara. I plan to contact the FDA hotline 1-800-535-4555 to report this as well. I have a few pills left from my first batch (keep them in my purse in case I'm not at home) and a second batch that I hope they can test to tell me if there is the right amount of letrozole in each pill.
EDITED - see my comments on the next page
Turns out my PCP put the wrong code in for the blood work and the test they used is not sensitive enough for people on anti-estrogen therapy. I'll have it tested again, but the generic is probably working fine.0 -
I also wanted to post this paper, which shows that after a single dose of letrozole, the serum estrone and estradiol levels fall to near the limit of detection and stay there for several months:
http://onlinelibrary.wiley.com/doi/10.1002/bdd.273...
My levels are still even higher than shown in Fig. 2 at the initial time point (before taking the pill).
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Wow grandmaX3, that is really odd. I take the Accord brand and I don't think my doctor has tested my estrogen levels but will bring that up next time I speak to her. Let us know what comes of this!
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grandma3X, of all the things I've read on these boards, your post is probably the most chilling! How could this have happened? Great that you are contacting the FDA hotline. Great that you're a biochemist, hopefully you will be taken very seriously, although anyone finding out about this should be taken seriously no matter what. It raises so many questions not only about that brand of letrozole, but all other medication.
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Chilling is a good word for this. I'm trying to tell myself how lucky I am that I found out now, but I'm so mad I'm "spitting nails" as my mother would say. I have little faith in the whole medical industry at this point, and just when I need them the most.0
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I tried to get Roxane Letrozole today and was told by the pharmacist that there was a shortage, it was posted at their website. She could have cared less. For a year I had Roxane with very low side effects, mostly joint pain. Then the last batch turned out to be Teva with more supposed inactive ingredients. And I've had more joint pain coinciding with the change. I will be calling around to see if any pharmacy has Roxane. Apparently the pharmacies contract with the manufacturer. I just can't imagine how there could be a shortage of a little tiny pill.
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Marijen - I literally picked up a pre-pack bottle of Roxane letrozole from my pharmacy today. The other in town pharmacy could not get it anymore but this one has had no problem. I think the pharmacies contract with a distributor. I am just outside of the Dallas-Ft. Worth metroplex. Guess there must be several distribution companies.
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luvmygoats, what is the name of your pharmacy - maybe it's national? You know like Costco, Walgreens, Walmart.
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The FDA requires all generic drugs to contain *at least 75% of the active ingredient of the patented brand name version.” You can read that as “as little as 3/4 of the active ingredient in the brand name.” I will move heaven and earth not to take Sun Pharma’s version. But one thing you need to do is to ask to see the stock bottle--could very well be more than a few months past expiration date. (It’s not unheard-of: a UK wholesale druggist was caught selling fake Chinese-manufactured Avastin, as well as genuine Indian-made Avastin that was past expiration and stored under too-hot conditions for months).
I did beautifully on Roxane, except the night sweats were a bit worse. On Teva (which my pharmacy can still get), the night sweats are milder (maybe it’s the A/C) but the joint issues are more intense--though still not crippling--and my cataracts’ ripening accelerated. Over the past few days I’ve noticed my left wrist aching--either arthritis or carpal tunnel (both of which are aggravated by estrogen withdrawal). I did read something disturbing about another Teva generic, though. I have been on bupropion XL for 17 years now, usually on Wellbutrin samples when my shrink has them and they’re getting close to pull date. The first time I had to fill a prescription, and he checked “may substitute generic,” what Walgreen’s gave me was Budeprion XL, which was an uncoated dull yellow football-shaped tablet (as opposed to the Wellbutrin round coated white tablet configuration that other mfrs. use). It didn’t go down as easily and sometimes began to dissolve while I was swallowing it. Next time I saw him, he gave me a “dispense as written” scrip for Wellbutrin--apparently that Teva version was not only weaker, but implicated in an increased number of cases of seizure (a rare but known SE).
Good luck getting your insurance to cover brand-name Femara. Neither my United drug plan (pre-Medicare) nor my Humana Enhanced Part D will. (And the latter won’t even cover generic letrozole unless my MO certifies in writing that I have first “failed” 3 mos. of generic anastrozole)!
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so MO's can check estogen levels to see if the drug is working?? I am on accord brand of Letrozole. I also had both my ovaries removed. I actually thought this pill stopped the production of estrogen?? With the removal of my ovaries I thought I was pretty safe from estogen!!
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No, I've been told and have read there's no way to know for sure if it's working or has stopped working, shrinkage of the tumor is the only cue.
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When I was on letrozole, I had my estrogen checked after about 6 months. Estrogen was basically zero. Also, I've had my ovaries out as well, but was told the adrenal gland and your fat cells both produce estrogen.
Randi.....have you ever thought of going to a half dose? I chose to after about 6 months due to severe side effects. I was able to complete my 5 years. My oncologist wasn't happy, but said it was better than stopping altogether. He said a half pill every day was better than a whole pill every other day. Also, the Novartis trials showed there was complete estrogen suppression with a half dose ( actually less than that ) . Just a suggestion
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Ovaries make actual estrogen, until they’re removed, chemically-suppressed or have dried up due to menopause (actually, that is the cause of menopause). Your adrenals and fat cells, OTOH, make an androgen--androstenedione, which is what Mark McGwire and Sammy Sosa got called on for “juicing” with it. Your liver makes an enzyme called aromatase, which converts that androgen into a kind of estrogen. AIs (such as letrozole) inhibit the production of and impair the action of aromatase, so estrogen no longer gets made. If you’re premenopausal, they won’t act on the estrogen your ovaries still make--which comes out as estrogen and doesn’t need to be converted by aromatase, so that’s why AIs are given only to women past menopause (natural, surgically or chemically induced). If you have functioning ovaries and are not yet close to menopause, you’re given tamoxifen instead, which clogs up the estrogen receptors on the tumor cells so they can’t access the estrogen. Think of estrogen as the food in the fridge and you as the tumor cell. Tamoxifen is like putting a padlock on the fridge or wiring your jaw shut so you can’t access that food. Aromatase inhibitors remove the food from the fridge, render it inedible and run it through the In-Sink-Er-Ator so it no longer exists.
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That was a great explanation ChiSandy! Thanks. Now I think I understand why they want us to lose that fat - it's cranking out that androgen causing the liver to work harder and consequently the AI's have more aromatase to contend with.
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Hip line - exactly what you said! Which is why I've dropped 23 pounds since January, going from 146 to 123 on a 5'7" frame. I also don't drink any alcohol (which is somewhat estrogenic) and my FSH levels are 122, a sign that I'm really in menopause.
So why is my total estrogen so freaking high? Even if I were not on AIs, it's still two times higher than the normal upper limit for postmenopausal women! My testosterone levels, which feed into the estrogen synthesis pathway, are in the normal range. I think my next step is to see an endocrinologist. There are other pathways to estrogen production, primarily through steroid sulfatase (STS). I'm pretty sure I'm deficient in this enzyme, though, since I'm a carrier of X-linked ichthyosis- a genetic mutation that renders STS inactive. Women who are carriers of this mutation still have one normal gene, since it's located on the X chromosome, but the levels of the enzyme are greatly reduced.
Marijen - you are right that there is no way of telling if any therapy is working until it actually stops working and you have a recurrence. But with AIs, we can test to see if it is doing what it's supposed to be doing - which is to lower estrogen levels - and hope that the lowered estrogen will stop the growth of any cancer cells that are left after surgery.
Chisandy - I checked with my insurance and they said my MO just has to order the brand name as a "change of therapy" and it would be covered, no co-pay, and even though I have 48 days left before I am supposed to get a refill. I have to say, my insurance has been very good through all of this. i think I've racked up more than 100 grand in medical bills since all this started in November and the only thing they refused was when I wanted to be tested for BRCA.
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OK guys. This is probably the single most issue that makes me furious! Of course docs can test our estrogen levels. They should be checked before, during and after treatment! Its not rocket science! Why don't they? IMO its because MOs know very little about female hormones. I think there needs to be an endocrinologist or at least a gynocologist on the team. This is a huge gap in our care. The idea that we only know if its working is whether we have a recurrence or not is absurd! So many women are having SE on these drugs and we are not even sure their estrogen levels have been affected by them ? IMO this is insanity and we need to speak up about it! Sorry for the rant but as you can see this infuriates me! Good luck to all. We have to stick together....
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Sorry Marijen these are both small local drugstores (one a small chain and the other E Texas grocery store) confined to Texas, esp. North Texas. Best bet is let your fingers do the walking lol. But if this pretty small chain here in town can get it indicates to me it's not so hard to get.
I think I had both Sun and Accord brands early on plus one other. The 2nd year on letrozole I went thru terrible shoulder pain, bone scan, ortho, PT and then it magically got better only to return again in early 2015. Comes and goes but then I do abuse it some carrying water buckets. I'm not sure at what point I insisted on the Roxane brand. I'm just not one to change generics if it has no problems. They can change my eyedrops and metoprolol all they want but keep your hands off my letrozole.
Hmm on the estrogen levels. Due late July for MO appt and actually need yearly gyn too. Maybe I could get one of them to try estrogen level. Gyn probably not - he's pretty much of the don't check if if you can't treat it bunch. He'll punt to MO.
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So. (I'm going to rant a little here). My MO does not think that my estrogen levels are anything to be concerned about. This was after he told me (reprimanded me) that he does not monitor blood levels in patients on letrozole (and kind of implied that I went behind his back by asking my PCP to run the tests....). I felt like saying F---you, I'm the one with breast cancer and if I want my PCP to run blood tests I'm going to ask for them! I should mention as well that my MO told me during my first visit that he does not monitor bone health, cholesterol, or any of the other medical side effects that may pop up while I'm on letrozole - that this is in the realm of my PCP. Anyway, I am in the market for a new MO since this relationship is going nowhere.
In the meantime, I have done a little research on blood plasma levels of estrogen while on letrozole. I found about 8-10 studies showing that estrogen levels are reduced by 75-95%. One paper monitored estrogen levels in "postmenopausal" women on letrozole and determined that some members of this population may still be pumping out estrogen in significant amounts from their ovaries, which of course is not going to be affected by AIs. I have an appointment with an endocrinologist next, but may try to get in to see my gynecologist as well.
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Grandma 3X, not all insurance plans are the same, and the same company can vary state-to-state. Mine is Humana Enhanced Medicare Part D, which has proved to be far stingier than my old pre-Medicare United Health Choice Plus PPO. Both United and then Humana utterly, categorically refused to issue “prior approval” for brand-name Femara ($900/mo in the US, a bit less than $200/mo from CanadaDrugs.com) despite my MO’s letter. And while United didn’t require anything other than a scrip from my MO for letrozole, Humana will not cover ANY letrozole--Femara or generic--without written evidence from my MO that three months on generic anastrozole have “failed” me. Of course, how do they define “failed?” Must it be inadequate therapeutic results (which apparently can only be determined by suffering a recurrence), or do unbearable SEs count???? I am now out of pocket 100% for generic--had been $9-17 for Roxane, now $29 for Teva. This bites big-time.
And now Humana keeps calling me every few days trying to get me to switch to its mail-order pharmacy for “maintenance meds” (any drugs I take longer than three months in a row). United actually shook me down, demanding I either get ALL my maintenance meds via mail order or none of them...and then hinted if I bought them via brick-and-mortar pharmacy it would jack up my co-pay. At this point, I am fully out-of-pocket with every brand name drug (all unique within their class, but Humana insists that other older & cheaper classes--e.g., generic ACE inhibitor lisinopril rather than my brand-name 3rd gen. angiotensin receptor blocker Benicar, which has been more effective in lowering my BP w/o an uncontrollable dry cough than even any other ARB in its class--are the only ones they’ll cover). I go out of pocket for Dexilant, because they think I should be buying an older formulation of lansoprazole OTC...out of my own pocket too. The only reason they’re paying ANYTHING for my asthma inhaler, Ventolin, is that generic albuterol inhalers are no longer being made--their more effective CFC propellant has been outlawed worldwide and no other company will even make an albuterol inhaler. And because the newer, required eco-friendly propellant is so much weaker, I have to take more puffs for the same dose and spend more money to buy inhalers more frequently......an extra one or two per year, which are of course.....100% out-of-pocket. (I literally buy those in Europe at $7 a pop and smuggle them in).
I don’t know whom to hate more--insurers or pharma companies.
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Chisandy - I think that's awful that you have to buy your own medications when you are covered by Medicare! I work at a university that offers BCBS on the state of Delaware plan. I have the lowest cost basic coverage but when I had a chance this year to change, I found that the more expensive plans really didn't offer much more benefit than the one I'm on. Our new coverage year starts today, July 1. I'll be back to paying my deductible for a while, but I am scheduling my exchange surgery for October, so I'm pretty sure I'll get my money's worth again this year!
My MO's office is calling in a prescription for brand name Femara today. I should have asked for it from the beginning.0 -
What is the difference between the brand name and the generic? My MO says there is no difference? I am pretty sure that my insurance company either would not discount the cost or not even pay for it since there is a generic available. I have a pretty high deductible at 3k and then it goes to 50/50for another 3.5k. But if there is some proof it's better I would consider switching.
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hmmm...I looked at the fine print on my lab report and did a little digging. Labcorp used the ECLIA method to measure estrogens in my blood sample. If you look at their website, it says that this method may not be sensitive enough for people who are on anti-estrogen therapy (such as AIs) and that the LC/MS method is more appropriate:
So the generic probably is working fine - my PCP just put the wrong code in for the blood work.
In other news, my MO told me today that I should not worry my pretty little head about blood tests (not those words exactly), but he went ahead and (grudgingly) ordered the name brand Femara for me. The pharmacy will have it on Tues. I've been assured by my insurance that there will be no copay - we'll see what happens when I go to pick it up.
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