FEMARA
Comments
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I went off curcumin over xmas and muscle aches came back in spades. I went back on it earlier this week and I am getting better every day. I take 2000mg of liposomal curcumin per day so that could be worth trying for anyone with muscle aches. I don't have joint pain so I can't speak to that.
>Z<
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susanrachael, I have been on letrozole for a year now. No joint pain. Hair thinning (which has stabilized), and urinary frequency issues, but no pain. Good luck
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SusanRachel, after 7 mos. on Anastrozole, I had very achy knees that were getting worse and I was very fatigued; worse than during chemo. I already had arthritis in my knees, but this pain was much worse. My onc switched me to Letrozole and within a week, the severe knee aches went away, I was sleeping better and so was not as fatigued. I do have worse hot flashes than on Anastrozole and periods of feeling cold, but I don't have any hair thinning and none of the other SEs adversely affect my QOL. I think it really is up to each individual how they'll react, but I've also read on this thread and others, that the generic brand makes a difference because of the different fillers they use. The Anastrozole I took was by ZyGenerics, I think, but I had read the TEVA brand was the way to go. The Femara I take now is by TEVA and maybe that is a lot of the difference in SEs. Good luck to you!
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I went on Letrozole/Zolodex 12/12 and about a week later noticed a rash on the inside of my knees when I shower. About 10 minutes after shower the skin returns to normal. My pharmacy paperwork says to contact Dr if rash, but in order to make sure it is the med, I stopped taking it this Wed. (I mentioned this to a nurse when I went in for Zometa IV on Thurs.) Now, 4 days without med the rash appeared, but much less intensely. I'll call MO on Monday, but I'm guessing he'll tell me to stay off med, which upsets me because this is 2nd AI my body has not tolerated.
Mostly this is a vent, but I'm wondering if anyone out there also reacted this way and stayed on Femara?0 -
Has anyone experienced recurring bladder infections plus just plain painful urinary tract sensations since taking Femara? I am on a generic brand of letrozole and for the past 7 months have recurring pain and sometimes infections. I have read where low estrogen levels may be a contributing factor to this problem. I would welcome any response as well as your solution to this ongoing miserable condition.
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Honeybair.
Yes I have had almost constant UTI's . My story and others helpful suggestions are on this thread, On the topic Hormonal therapy - before during and after. Sorry don't know how to link it.Perhaps Mod's can do that?
It's been pretty miserable for me.
Topic: UTI's
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honeybair....so sorry you are suffering. I know how miserable those symptoms can be. Sounds like you could have interstitial cystitis. It's a chronic urinary tract condition. The symptoms are pelvic pressure and pain, urgency, frequency, and even burning. It mimics a UTI but its not an infection. There are various drugs and supplements you can take to ease the symptoms. Also see it is often caused by the lack of estrogen from either natural menopause or anti hormone treatment, Hope that helps...
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wintersocks and dtad, thanks for your response. I am learning that what I eat or drink has a dramatic impact on me. I have learned that high potassium foods worsen this condition and possibly vitamin c supplements. i do not want to visit a urologist and got prodded and poked in a very uncomfortable area of my body. i just do not understand the why of recurring infections-well for 3 or 4 weeks-then another infection. Or is the case, no infection-just discomfort. if we could only have some estrogen cream in our Ladygarden, I am certain that would help/. I will research drugs and supplements for interstitial cystitis.
Wintersocks, a big hug to you. I know you are suffering.
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Honeybair,
Yes I am and it sounds like you are too -It;s really horrid isn't it? . The urologist I saw said I did have Interstitial cystitis (yes prodded and poked a lot!). I am now on prophylactic abx and will be for the foreseeable. I have Replens too that i have to use every 3 days. Still feel like I need the loo all the time tho. But it has kept the raging infections at arm's length.
I was offered Vagifem (to give some oestrogen locally). But I said no as I am 100% er + . but I understand that it is safe to use. but psychologocally I just couldn't. I hope you find something that helps as have. I don't like the abx, but on one occasion I ended up in casualty with pyelonephritis as as result of constant infections and got very seriously unwell. So do be vigilant.
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Google interstitial cystitis. There's a discussion group for it as well as lists of foods that aggravate it
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TarheelMichelle - thanks for that bit of info re Cymbalta. I have been doing further reading, and I'm now considering NOT taking it. I've taken it for two days, and have had terrible chills (?) and nausea. If the results of the study are about even with the placebo, I don't think it's worth it. The withdrawal sounds horrific as well.
Honeybair and wintersocks - sorry to hear about the urinary issues. I am having issues with pain, but no infection. Hugs to both of you.
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Honeybair, I have had urinary frequency and urgency issues since April. I started on femara in December 2015. I mentioned it to my MO and he told me to see a virologist, in his opinion it isn't the femara. But it is listed as a SE, and gee whiz, never had this issue before. I still work, and need a referral from my GP to see the specialist, so I have been living with it. It is starting to get to me though. Good luck
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stellamaris...here we go again. Another MO denying the SEs of anti hormone treatment! It infuriates me! Urinary tract issues are absolutely a SE stemming from the lack of estrogen. How can a doc prescribe a medication without knowing what the SEs are?? Its bad enough that we have to endure the SEs without getting validation from the person prescribing it!
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Respond to the doctor with the following (or something of this sort): I understand that many of your patients on this medication may not be experiencing this side effect, but it is listed as a side effect in the literature I received, and I did not have it prior to starting this medication. I therefore would appreciate you make this referral for me and avoid me having to make yet another appointment.
Your MO can absolutely make that referral. Mine referred me to a urologist following blood in my urine.
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I can not believe my onco told me I would have no side effects. Slowly they built up on anastrozole , I called one day I couldn't get out of bed without terrible joint pain. He knows I hate to complain and do not like doctors appointments. It was bad, exemestane was better but I had the life scared out of me when my right eye reacted with the medication. I was terrified of losing my sight. They need to be honest with patients and discuss potential side effects. It is dangerous to tell someone you won't have any then the patient calls when the problem is an emergency.
I won't risk my eye sight for the "possibility" of preventing recurrence.
No amount of exercise or eating right will protect you from harmful side effects. Really tired of the perception that if you tell a woman the side effects they will worry and get them.
I fully support the lawsuits for example the one on taxotere. It is irresponsible to not inform patients of the risks.
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Meow...totally agree. Its really malpractice to tell someone they won't have any SEs. There s absolutely no way any doc can say that with accuracy. You can have any SE to any medication. I also agree that the mentality is that if they tell us we might experience them , then we will. How insulting! We all need to be aware of possible SEs since some can be very serious. Its hard enough to navigate this disease without dealing with docs having this attitude. Good luck to all
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All of you that are having hair loss issues---did you all take Taxotere? There are major class action lawsuits being filed if you were not warned aabout permanent hair loss/thinning as a side effect.
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I would think the lawsuit would only be applicable to those women whose hair never grew back or grew back very thin after the taxotere though. My hair grew back nice and thick after chemo ended, but is now potentially thinning again on the Femara. If you are actively taking an AI drug, you would have to somehow prove that the ('continued') loss is due to the Taxotere and not the Femara. I would guess, anyway.
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Hi all. I've got to give turmeric a try. Started w Exemestane and SEs got really bad in July. So had a couple weeks off and was put on Femara. I'm starting to feel like an old lady but try to stay active. Foot, leg, and arm pain are the worst.
On vaginal estrogen: I was assured it was okay if I didn't use it too often. So I didn't use an applicator but just applied a tiny bit when I needed it. I mostly use coconut oil--an organic jar full from Sprouts. That helps a lot, but sometimes the estrogen is what I need.
Glad to find support on this discussion board. I never realized hormonal therapy would have so many SEs. The same high from taking HRT a decade ago are now a low from Femara. Just glad to be here, even if it's a struggle sometimes.
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amylsp
I do agree with your opinion and that it is difficult to tell which is Tax and which is Femara. I simply cannot tell as both tx overlapped. It is very difficult to find out if people's hair returns to normal following finishing with Letrozole.
I wonder if there are any studies done on this?
My own feeling is that both Tax/Letrozole have impacted my once unruly mop to hair thinning on top and a strange texture as BB says.
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thanks KBee, I needed that! I tend to be a bit of a wuss, and really, my MO is so intimidating. I asked him last visit if he was planning on doing any scans to look for Mets, and he just said my case was low risk. Maybe he knows something I don't. The problem is, I have more anxiety now, because every "new symptom" makes me crazy. E g. A couple of times I have had bleeding after intercourse, whic is not supposed to occur in post menopausal women (according to Google). So, I am afraid to mention it, because at 66, am I even supposed to be having intercourse!??? Lol. I have resigned myself now to just do my thing, and lay it all on my poor GP, who is such a doll, and has no idea of how we are treated by the specialists. I had the same experience with my rheumatologist and we eventually found the right combo of meds that put me in remission, but it took a year, and he had written me off, saying I would be in a wheelchair in 5 years. Sheesh! Hugs to everyone. It is all down to us and our psychological resolve.
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" So, I am afraid to mention it, because at 66, am I even supposed to be having intercourse!???" Two words for you Stellamaris - HELL YES!
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Who ever said you have to be celebate after a certain age? We are in our 70's and hubby would certainly not agree, neither would I. Love, Jean
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Been a year on letrozole for me. I had originally heard that generic letro has more severe SE's than the branded Femara (Novartis). None of my insurers would cover Femara, and the cost for 90 days' worth in the Chicago area (Walgreen's, CVS, Costco) range from $2100 to $2700 (and that was last year). Decided to “go outlaw" and bought it instead from Canadadrugs.com. which sold me 90 days' worth of Novartis UK Femara for $588, shipped from River East in London. I had heard of a prior scandal concerning River East shipping a counterfeit targeted therapy drug that was “state of the art" a few years ago. So, before taking my first Femara pill I e-mailed photos of the packaging and pills, plus one pill to Novartis UK for analysis. Word came back a couple of months later that it was legit.
Meanwhile, I knew I had to start letro. I had heard that Teva's version seemed to have the fewest SEs (and my DH, a cardiologist, says his patients like Teva generics when they can't take periodic jaunts to Canada). I called around to all the pharmacies with which my Part D carrier works to see if they could get me Teva, and the chains all told me “you get whatever generics our distributors sell us most cheaply." Take it or leave it, I guess. My cancer center's pharmacy sells the Roxane version, but Humana won't work with them. But there's a little neighborhood indie drugstore with a kosher deli in the front; they are on Humana's list. (Not “preferred," like Walgreen's or Wal-Mart, but still covered). They said they could get me Teva. Next day they called to apologize and asked me if Roxane would be okay. I figured, why not? So 2 months go by—no SEs at all. 3rd month the Teva came in—a few more night sweats, but I've always sweated at night.
Then somewhere on bco someone published a list of all versions of letrozole, with their “inactive ingredients" listed. The longer the list of those ingredients (dyes, fillers, metals, sugars, coatingsetc.), the worse people seemed to do on that version—perhaps due to sensitivities to what could be irritants. Amazingly, Roxane had the shortest list—no coatings, dyes or pigments whatsoever. Then came Femara, and Teva. Accord, Sun, and others had veritable laundry lists of inactive ingredients. So I keep the Femara in reserve (it doesn't expire till 2019), and go for the Roxane or the Teva. My last day before going on Medicare it cost $9 on UnitedHealthcare.
Starting the next month, when I switched to Medicare I was paying $30/month, but couldn't figure out why each month when I went to pick it up the pharmacist said coverage was denied. After all, he had my Humana Part D card on file. And every month my Humana statements didn't list letrozole among my meds. Yet even when I had fallen into the Part D “donut hole” it was still $30—had Humana been covering it, my cost should have gone up. I checked Humana's formulary and it's a Tier 2 generic. Maybe it's because I specified a particular manufacturer? After a 2-hr runaround on the phone, I finally got through and the rep told me that all mfrs. except Novartis were covered—and because I'd recently climbed out of the “donut hole," it should cost me nothing till Jan. 1. Unfortunately, I was out of town and the scrip had expired. So on Jan. 2, when I got home, I mentioned it to the other pharmacist (who was the owner's daughter). I started to read her my Humana Part D card number, and she said, “no need, we have it." Then she looked at my records and said “OMG—Dad's been using your old insurance card all along. No wonder United denied you." So out I walked, new bottle of Roxane letro in hand, for nine bucks. And a free quart of matzo ball soup.
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Ozoner, I too was on exemestane, and experienced severe pain. My MO took me off meds for 2 months and said it would take up to a couple months before SE's went away. I hope you see improvement in time (I did).
ChiSandy, Wow...such good info for us. Thank you! I sure wish I had this info Monday, but good to know now. I broke out in a rash from Accord Letrozole. I talked to a pharmacist and he said yes, I may do better on the Femara. I talked to MO's nurse just this Monday and she said he didn't think it would make a difference, but was willing to give it a try. Right now I'm waiting for insurance pre-authorization. Let us know how you do!
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So my SEs have been pretty minor—thin hair (but it’s always been fine, porous and frizz-and-breakage-prone which is why I get keratin treatments 3x/yr); slow metabolism with creeping weight gain (but still can wear my XL & 1Xs); some startup joint pain (everywhere but my knees, which are “bionic”) which disappears after about 20 steps; and the aforementioned night sweats—which I keep at bay using a ceiling fan, tropical-weight comforter and lightweight nightgown. My cataracts, already ripening, ripened so fast I had the surgery for them this fall. Had a R trigger thumb but a cortisone shot slowly took care of it (and had a L trigger thumb years ago). Not sure about my bones, since my baseline DexaScan just before rads came up osteopenic and Medicare won’t pay for another scan till Nov. 2017 (so can’t tell if the Zometa infusion worked either). Skin’s a bit drier overall but I do get the occasional zit; hair on my legs is sparse, but growing again on my ‘pits. Just had my first hot flash (ever) a few days ago, but it was a joy: I was shivering in my poorly-insulated front room and suddenly was able to take off the fleece throw. More of an “oh, it’s gotten comfier in here” flash. Didn’t last.
I think I know why studies have shown Cymbalta seems to ameliorate letro’s SEs: I’ve been taking Wellbutrin (bupropion) since 1999 (to control carb cravings) and my letro SEs seem much milder than other patients’, too. Cymbalta & Wellbutrin are both second-and-third-gen antidepressants that are selective endorphin-receptor reuptake inhibitors (SNRI and SDRI—norephinephrine for Cymbalta, dopamine for Wellbutrin; the first generation SSRIs—that act on serotonin receptors—like Prozac don’t seem to be effective for that, though some SSRIs might lessen panic attacks, hot flashes or PTSD). As for using Wellbutrin for cravings, that began when doctors found it helped people quit smoking (so they repackaged a version as Zyban); there’s a new combo, Contrave (Wellbutrin + naltrexone, aka Narcan) that is specifically prescribed for weight loss. The Wellbutrin stems cravings, and the naltrexone occupies endorphin receptors sensitive to sweets and other dietary tempters (as well as opioids). Interestingly, when I went to NYC & DC for vacation a couple of weeks ago, I’d forgotten to portion out my Wellbutrin into my travel pillbox. Within a day, I was eating bread and desserts (and craved bagels in the morning). Great restaurants, of course. One week after my return, that subsided…but not before I’d put on another 5 lbs.
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kB870 - thanks! I will check that out for sure! Hugs
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Tried all the products for dryness. Could open a store. Nothing worked. Then a PT who treats pelvic pain recommended Slippery Stuff. Got it online. Amazing! The only thing that has helped
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Chloesmom, I must find Slippery Stuff....I'll look it up right now!
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Anyone who is lactose-intolerant may be interested to know that my research showed lactose as the first inactive ingredient for Sun and Roxane. But lactose is only the fourth or sixth ingredient on Mylan, Teva, Accord, and Novartis. I switched and have had less bloating.
As far as some of the other undesirable ingredients, Mylan and Teva have no talc but do have FD&C colors, while Teva and Novartis have no FD&C colors, but do have talc. It came down to what I could get from the local pharmacy. I called around.
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