FEMARA
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The trigger thumbs were all better but now back for 3rd time. MO wanted me to quit the letrozole after the first time. But its better than the other 2. I am afraid to quit so just soldier on. If the cancer comes backat least i can say i tried my level best
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BB- Are you sure that the lipitor is causing the neuropathy? I looked up the potential side effects, and there is a .1% chance that lipitor could cause neuropathy. I think the neuropathy could much more likely be caused by uncontrolled blood sugar, and getting your blood sugar under control could help with that.
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Of course, gardengypsy. What shall I clarify?
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Shetland- Second sentence. Does Teva have Talc or not?
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Oh! Thanks for catching that, gardengypsy. Teva does not have talc. Teva does have yellow #5, tartrazine. All the brands have some color(s), but my research indicated that FD&C colors might be worse than other kinds. I have edited the sentence in my earlier post to read:
Mylan and Teva have no talc but do have FD&C colors, while Accord and Novartis have no FD&C colors, but do have talc.
My method was to call local pharmacies and ask what they could get, then look up those brands on drugs.com or other sites to compare.
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Hey BosumBlues.
I take Crestor and it does make my neuropathy worse. My GP probably won't like that I have cut back on dosing, but along w chemo and now Femara, I am positive about Crestor having a neuropathy effect.
BTW, I am being transitioned from Zoloft to Cymbalta after reading that its action can help alleviate Femara symptoms. The Zoloft was losing effectiveness after 10 years, so it's worth giving Cymbalta a try.
I don't like taking meds or vitamins, but I do my best. It's been two years since I was diagnosed, and it's a big surprise that the AIs can be as problematic as chemo and rads We're in it for the long haul, tho, and I'm grateful for every day.
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I have been on letrozole, Teva brand for now, and Femara for about 90 days before Express Scripts denied it to me. I have no joint pains or any body pains, thankfully. Despite being on a statin for years, my cholesterol has increased since being on these drugs. I began taking them in late 2013. Beginning last year I have had recurring UTI's and pelvic discomfort as well as many trips to the restroom. I am getting up 6 times per night now. I practice careful hygiene attempting to avoid these infections, but nothing is helping. Has anyone consulted a urologist, and if so, have you been helped. I want to complete my treatment, but I m just miserable.Right now I am on an antibiotic and am hurting. I have been scanned for pelvic cancer and checked for ovarian cancer, all negative. I visit my local Doctor's Care so often with UTI's, the doctors there greet me by my first name. I am desperate.
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Honeybair, I see a urologist because I developed blood in my urine during chemo. Right now it's only microscopic and not gross bleeding like I'd had previously, but they do still have me check in once per year. I would recommend seeing a urologist. They cytoxan can occasionally cause bladder problems down teh road, so it might be current meds or late effects from chemo.
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Kaybee - what bladdee issues come later after cytoxan? Hadn't heard that one in addition to all the rest?
I know the lack of estrogen from the AIs make the pelvic tiissues more fragile and susceptible to infection ( like old ladies)
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I believe my urologist said it increases the risk foe interstitial cystitis, and mildly raises the risk of bladder cancer, but that's usually only when it's used for a prolonged time. As you mentioned, menopause increases the risk of bladder infections too. I do think a urologist would be able to give you some good advice. I hope you get relief!!!
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Peaches, have you discussed adding a “sequestrant” (old school mop-up-the-LDL drug like cholestyramine, which acts via the liver and helps you excrete the excess lipids) or a combo like Vytorin (Zocor & Zetia)? Or increasing your soluble fiber intake (like with Metamucil or Miralax)?
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Hi Sandy- I looked up the vytorin and the other medicine you mentioned on goodrx.com, and the vytorin is $296 for a 30 day supply, and that is mail order. The other medicine you mentioned is $51. I only pay $4 a month for my atorvostantin. I could consider combining atorvostantin with sloniacin which you can purchase over the counter, but for a while my blood sugar was borderline. It got as high as 106. Although when my PCP did an a1c on me it was in the normal range. From what my sister told me, niacin has the potential to raise your blood sugar, and she advised doubling my dose of atorvostantin instead. When I had blood work done in December though my blood sugar was only 86. It has not been that low in two years. As far as the soluble fiber, I have been eating oatmeal for breakfast every day for the last several weeks, and I eat beans several times a week.
Three years ago, while I was on obamacare, my EKG came back borderline abnormal, and so my PCP sent me to a cardiologist for an echo. I told him that I was having shortness of breath because I was out of shape, and somehow he interpreted it that I was having chest pains, and the echo ended up being borderline abnormal, and so he ordered a stress test, which did not give a definitive answer, and so then it was decided that I would have a cardiac cath, and he found out that I was clean as a whistle. . At least I know now that if my cholesterol does go up a little from the femera, I won't go into cardiac arrest.
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honeybair....I have interstitial cystitis so I know how you feel. However if you are testing positive for UTI you might want to try a supplement called D-Mannose. Many women have used it with success. Hope that helps. Good luck and keep us posted.
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Thanks, everyone for your responses.Dtad, I will look into D-Mannose. I have never heard of it. And I am definitely going to consult a urologist.
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I feel so very bad for you - frequent urination urges can make a person miserable. May I submit one more idea?
Mild, persistent anxiety (often insidious) can manifest in frequent urination urges. This happened to me during rads and my PCP prescribed a low dose anti-anxiety med (in my case, Xanax). This completely eliminated the problem. When I felt the urges coming on I would take a pill (or even half a pill) and it would relax me slightly but just enough so the urge to urinate completely disappeared.
I still have half the prescription left and have only taken one in the past 2 months. It's a comfort to know I have them though, just in case.
Often, we women don't acknowledge mild anxiety but it can rear its ugly head if not addressed.
Just a thought..................
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Hello everyone, I know that there has been lots of discussion on different generic brands of letrozole. I have to change my pharmacy and am trying to decide which one I want to try. The closest place carries "Accord"which has 11 inactive ingredients with Lactose being the 4th one. I can drive farther and get my same brand of Teva that I use now. I know many here think it's one of the better ones but it has 13 inactive ingredients with Lactose being the 5th one. Since I'm Lactose intolerant, I'm not sure which one I should try to get. Has anyone here had any experience with both brands, finding one easier to tolerate than the other? I know there's been talk of Roxanne but Lactose is the first listed ingredient there.
I have so many SE's with this drug including nausea and dizziness I'm just trying to find something tolerable.
Faith ( in the future
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Faith, you can look up each inactive ingredient in your two candidates, and see which ones sound bad and which ones sound neutral. If a pill has ten fillers, but only two are bad, I would say that is better than a pill with only seven fillers, but three are bad. See what I mean? And you can give more weight to ingredients you know you have an issue with, like lactose. (Some not-so-great ingredients seem to be in every brand; for example, magnesium stearate.) For what it's worth, Both Teva and Accord ended up on my short list of acceptable brands when I decided to switch in order to get less lactose. Here is an article about excipients and fillers:
http://www.ndhealthfacts.org/wiki/Excipients_and_F...
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Shetland, thank you so much for your reply and for the link explaining about the fillers. You really are one of the best queens of researchers we have here on BCO, especially for those of us dealing with MBC. I'm going to study the differences a bit more but all things being fairly equal, I will probably go for the Accord brand since it will much more convenient for me. If I try it for a month and hate it, I'll switch to the Teva brand and take a drive. Of course, it goes with saying, none of them are easy and have lots of stupid SE's
Thanks again,
Faith (in the future)
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What are all of you doing for lack of moisture caused by reduction in estrogen? I have been on Letrozole for 2 1/2 years and the dryness is becoming an issue.
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Hi Brneyedgrl.At the suggestion of the onco nurse, I got a jar of food grade coconut oil at Sprouts. It is semi solid but melts when you apply it. Ok everyday moisture for female parts, plus I have used it after shaving my legs. Put some on my lips every night instead of a petroleum based product. I occasionally use a tiny dab of Estrace, allowed by my doc, but the coconut oil is fine for every day.
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Coconut oil seems like the Swiss Army Knife of fats—some say it’s also great for seasoning cast iron and popping corn.
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Well, I'm in menopause now and onc rx'd me Letrozole. I'm scared. Tamox wasn't bad. Had cramps like pms in the beginning but now nothing so I'm sad to leave it. I have 2 weeks supply left so I'll finish it before I switch.
I have bad osteoarthritis in both knees. There are times I can't walk well. Very worried that it would become not at all. I have steep stairs just to get to my apt. I'm way overweight and of course that's a prob too. I can't afford to have difficulty getting around. I live alone and have 0 help. I've done my cancer journey by myself but I can't if I have joints that won't work well.
Next and I know you guys understand is hair loss. I went through the Taxotere scare of my onc saying I won't get my hair back so when it came back thicker strands (not quantity) and curlier, my already thinning hair probably genetic since both parents have big issues looked good. It's cut in a million layers (the way it grew out) so lots easily gets covered. But now I fear between now being officially in meno plus this (+ I had hair loss before this for years) that it will get worse. I don't know why I wrapped my head around it during chemo but now that I came out looking good that I'm having a harder time. Well, I know why- but because I'm so overweight that now my hair is my only physical asset.
Anyone here had hair loss (maybe genetic) before chemo, is taking this, and is ok? I'm 52. I guess if I were older like my mom who has big time hair loss and is 72 and doesn't bother her much it'd be different. My hair loss started 10-15 years before hers did.
Man this sucks. How much more improvement is it over Tamox? Onc says 3-4%. Is that right? That's all??? Not sure I want to go the route if that's it. I'm 30% chance coming back with all txs so minus 4%, is it really a lot like she says? Just doesn't seem like it.
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Artista, remember that you can try the letrozole and talk to your onc about switching back if necessary. I'm sorry to hear you have arthritis and have to climb stairs to your apartment. Any chance of moving to a downstairs one?
Brneyedgrl -- Regarding dryness from estrogen deprivation, here is my list from head to toe: Moisturizing shampoo and conditioner, Systane ultra or balance lubricating eye drops, Biotene moisturizing mouth rinse, moisturizing face cleanser, face lotion, hand lotion, body lotion, moisturizing shower soap, Replens vaginal moisturizer. All unscented.
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^^ Thanks. I can't afford to move, even downstairs. Rent is higher if I move cuz I'll be viewed as a new tenant if I switch places. It's weird here. I see her in 6 weeks. I don't know. I go between the joint stuff and the hair. Hair should be not signif in the grand scheme of things but I got it all back. To lose it permanently, the possibility...
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I have been on Femara since beginning January (planned for 10 years) so pretty much new to the drug enjoying reading a lot of posts and some advice on calcium supplements etc. I am noticing a bit of a headache and as I am so beyond concerned about recurrences obviously I immediately think I have brain mets..not sure I will be able to shake this feeling ever so I am taking my pills thinking I do anything to prevent the cancer from coming back. That being said I understand the discussion about quality of life but think those thoughts will get more prominent as times goes and if no recurrences happen. My clinic is also giving me a fairly new drug, Zoledron Acid to help with the bones and to protect them against bone mets. Did anyone else receive this medication? I have to go threw a test on my kidneys end Feb for my first infusion right after my current radiation (25 times) It will be given every 6 months for 3 years. I pretty much just take everything that is given to me gratefully at this point. The loneliness of all this is my biggest problem at this moment. I am reading with a heavy heart the posts of high costs for medication, I am living in Sweden so under national care and also receive disability. Everyone suffering cancer has the possibility of a 2 week rehabilitation stay at a sort of spa facility. I am longing for these 2 weeks, also meeting with other women, but have to go threw an operation to make my healthy breast smaller hoping it will heal before this summer so I can be braless during the warm months. To "even out" my chest will for sure make it feel a bit better. I am very loop sided right now. This is such a long and scary journey so at this time joint pain seems like a small problem considering, but sure this might change as more bieffects starts happening.
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Is it true that Femara (or any AI for that matter) only adds 3-4% protection from Tamoxifen? That seems so small to go through horrid se's. I've been given a rx for Letrozole and am having trouble putting Tamox aside. I have 2 weeks worth of pills aside and in the beginning it gave me cramps and some occasional joint issues aside from my preexisting arthritic knees. Seems overall, AIs are worse in se's than Tamox so I'm postponing which when the pills are gone, I'll have to face the music. I'm scared as I have trouble walking as it is and sometimes joint issues in my fingers. I live alone so my anxiety of how it may effect me is high.
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Tamoxifen can cause blood clots and uterine cancer (and if you don’t have a uterus, retroperitoneal cancer—i.e., behind where your uterus used to be). AIs may have more uncomfortable but less dangerous SEs. That 3-4% difference in protection from distant recurrence is nothing to sneeze at. AIs are better because while Tamox. clogs up the estrogen receptors, you still continue to make estrogen—some of which can still get through the receptors.
Zoledronic acid is not new. It is a liquid, infused form of bisphosphonate (oral forms being alendronate/Fosamax and ibandronate/Boniva). It’s been around for at least 5 yrs, maybe 10. Before they started to use it as “Zometa” to prevent bone mets from breast cancer and stop bone loss caused by AI-induced estrogen-deprivation, it was marketed as “Reclast” for general age-related bone loss in postmenopausal women who cannot tolerate oral bisphosphonates due to GERD (acid reflux). It is only a second-generation bone drug, as opposed to the third-generation “biologic” (made with recombinant DNA technology) denosumab, aka “Prolia," injected 2x/yr over 3 yrs for osteoporosis & bone met prevention, and “Xgeva," given at shorter intervals (more often) for an indefinite time to Stage IV patients to slow progression of bone mets. I didn’t have chemo, but before I started letrozole I already was osteopenic; I had my first Zometa infusion in August but will be switching to Prolia shots so I don’t have to get turned into a human pincushion (I have crummy veins in the one arm that can be used for needles) for an intravenous infusion. There are some studies showing that Zometa protects only against spinal fractures, while Prolia protects against fractures of long weight-bearing bones as well, and may prevent bone mets or halt their progression better than does Zometa.
I am obese myself, and have to climb a flight of stairs to get into my house and then another flight to get upstairs to the bedroom. I do need to hold the banister going downstairs (and holding it makes going upstairs faster & steadier), but my husband’s worsening knee OA makes it tougher for him than for me. (Maybe because I had my knees replaced in 2012 & 2013—a long and painful recovery but practically the best thing I’ve ever done for my health). Here in the States, we get 10-14 days in an orthopedic rehab center (some of which are like nice hotels, but with drugs) after joint replacements if we have insurance & the surgeon says we can’t immediately recuperate at home; if we have Medicare, we can stay there as long as the rehab center says we need to. My first rehab center was pretty but the food was lousy & the care worse; the second one was like one of those spa hotels, only without a swimming pool or golf course. But for breast cancer surgery, whether lumpectomy or mastectomy? Nope. And definitely unnecessary after a lumpectomy. (We can get a visiting nurses’ aide after a mastectomy to help change dressings & strip drains, however).
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Artista - not everyone gets side effects with Femara/letrozole and there are other AIs that can be tried if one of them causes pain. I have been on Femara for 11 months now with no noticeable side effects except maybe more forgetful. But that may be due to normal aging or just being stressed by life in general. I think 3-4% reduction in risk is worth the try. You can always go back on Tam if you can't tolerate the AIs. Hugs!
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ChiSandy, Thanks for your updates. Oh I thought the Zoledronic acid was some kind of new drug, thanks for the correction, it just might be new as a part of the treatment here in Sweden, not sure. Anyway I am glad I am getting it. I am glad for every medication I am getting..:) I have been looking around the different rehab places they offer and it seems kind of nice. I will be going for sure to a place close to my home.
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