FEMARA
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Too funny ChiSandy!
I am going to see how this goes...ten days is not long enough to judge this so keeping my fingers (and toes) crossed (at least until they start cramping from this drug..lol) that I can tolerate this better than I could the exemestane. That one near killed me! It got very, very bad near the end. I was beyond done with it!
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A good sweat also expels toxins, don't forget! And high temp kills viruses. I like my nightly quick sweat.
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I have a new side effect that my onc thinks might be due to Femara-- hemmorhagic cystitis. I have had three severe UTIs over the past three months with hematuria (blood in urine). Now I get to see a gyno-urologist to make sure everything is ok, I do suspect it is since Femara makes your estrogen completely gone so your "tissues" are thinner and more sensitive/likely to get UTIs (even though I was in menopause before getting breast cancer, started that at 43). I still am a fan of Femara overall and can't say the side effects have ever stopped me from taking it, they are just a bit tiresome.
Nothing like a few more challenges along the way. I consider myself blessed things could certainly be far worse and trust me I am grateful for everything. But dang I hope we can clear up the UTI problem.
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Anything that dries out and thins mucosal surfaces--by whatever biochemical mechanism--is capable of causing such problems. Acidifying your urine with cranberry juice, as well as keeping it as dilute as possible, will protect against infection (and staying well-hydrated with plain water is gentler on your urinary tract’s surfaces).
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Marijen, Thaks for the link. Yes we are very concerned about those numbers! Got my liver enzyme numbers back today and they were elevated again after starting the Ibrance back up for 10 days. So now she suspects it may have been the Ibrance not the Letrozole....AAArrrrggghhh! So we pulled the Ibrance and now am on just the Faslodex for now to see what happens. Have to get a blood test every week and if they are still elevated in two weeks I have to have another live biopsy and who knows what else. I pray to God it's not heart issues...... 6 months ago I was riding my bike 20 miles a day....It sucks.
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artistatheart, you're welcome but I'm not sure why you would be getting liver biopsies. Did you get an ultrasound? Or CT scan? I thought they were painful and last resort....
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Marijen I was not so sure on the biopsy reasoning either. I asked both of them what they would be looking for and neither had a definitive answer. So my Onc and I delayed that for now. The only one I had was not really painful just....uncomfortable.
I have had a whole body PET twice but no CT or ultrasound. I want to know the exact reason before I get another biopsy, although at some point I want to know if my HER status on liver tumors changes.0 -
artistatheart, maybe you should see a gastroenterologist liver specialist. Sounds like these people are out of their area of expertise. One visit wouldn't hurt, he/she would probably order an US or CT. Keep us updated.
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EnjoyEM,
interesting, that you have cystitis as I have had it too, many times with a uti taking me to the hospital as I became dramatically unwell. I had IV abx for 5 days. I continue to get uti symptoms and my copy letter to patient says it is interstitial cystitis. I also had the TVT tape cut as I was urinary retentive. I have had all the uro dynamic testing, including exam of the bladder. I mentioned the lack of oestrogen as a cause for some of the uti issues but the was non- committal, he did tell me not to use the Vagifem, until things had settled a little from my op, then he would review any use of this. I am back in about 8 weeks.
Could you please pass on anything your doc's might recommend about this as I am heartily sick of it.
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Thanks, Ellelou for sending lists of inactive ingredients in popular brands of generic letrozole.
Mine is from Accord Healthcare, Inc.
Here are the inactive ingredients:
Inactive Ingredients: Colloidal anhydrous silica, hypromellose, iron oxide yellow , lactose monohydrate, magnesium stearate, microcrystalline cellulose, polyethylene glycol, sodium starch glycolate, starch (corn), talc, and titanium dioxide.
As I mentioned earlier, although I was plagued by unwanted effects during my first period of letrozole (no idea which brand), this period is amazing symptom free and it seems to have stabilized the cancer in/around my lung.
xxx
Also, my troubles with tissue thinning of genital and urinary tract from anti-hormonal treatment was eased by vagi-femme and topical premarin. Both contain estrogen, so not for everyone.
Others in my in-person support group swear by Key-E vitamin-E suppositories.
And there's a long-running topic on Scream Cream to restore vaginal pleasure lost to treatment.
Blessings, Stephanie
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Seems like divided opinion on Vagifem. I use it with my Onc's blessing and it has been a great help.
Best wishes to everyone
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marijen, He is a gastro liver specialist! He did a round of blood tests to rule out any autoimmune disorders. All came back negative. He seems stumped on this but also Ibrance is such a new med he was not even familiar with it. So I think there is more to this drug than the initial research is showing. I hope the next two weekly blood labs show a decline again and then we will know for sure.
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Ok I'll be watching for your post. Medicine is an ART!
Thanks for the update.
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Read something extremely disturbing today. But let me back up a bit:
My MO originally wrote me a 30-day scrip (refillable 11 times) for generic letrozole, but I got spooked after reading reports on these boards of worse SEs from the generics (other than Teva) than from Femara. Neither my previous insurer (United Choice Plus PPO) nor my new Medicare Part D plan (Humana Enhanced) will cover Femara. (My 90-day scrip from my MO is sitting in limbo at OptumRx--they wouldn't release it, so my husband had to write one instead). After doing some comparison-shopping for Femara (and unable to get the Teva generic), I did what my husband says his patients do: went online to CanadaDrugs and ordered Femara sourced from NovartisUK. 90 day supply was $550 compared to $2100-2400 from US brick-and-mortar & mail-order pharmacies (incl. Costco). But because I was warned that it would be shipped UK and Canada post (regular, not expedited) I filled a scrip locally for the Roxane generic letrozole. Found out its inactive ingredients list was short, and devoid of dyes, pigments, talc and glycols. Have been on it since New Year's Eve with almost no SE's (and the few I have may have been preexisting and natural results of advancing age). Got a confirmation this morning from CanadaDrugs that River East Supplies, Ltd. of London has shipped my Femara.
So I Googled “River East Suppliers London" and got the shock of my life. Apparently back in 2012, there was a batch of Chinese-made counterfeit Avastin that made its way to the US and Canada--and it had gone through both River East and CanadaDrugs. Then in 2014, CanadaDrugs temporarily had its license suspended when inspectors found that batches of (genuine) Botox and Premarin patches had been improperly stored at excessive temperatures and long periods at CanadaDrugs' Winnipeg warehouse/fulfillment center. Its license has since been restored.
So I Googled both “counterfeit Femara" and “counterfeit Letrozole," but got results no different from those above--which results mentioned neither drug. Went to Drugs.com and did a search for those terms, and got “there have been no reports of counterfeit Femara" and “there have been no reports of counterfeit Letrozole." Went to the US pharma/drugstore watchdog site SafeMedicines.org and clicked through to their Counterfeit Drugs Encyclopedia. There were no incidents mentioning either counterfeit Femara or counterfeit Letrozole.
Still, I am very nervous. Acc. to CanadaDrugs, my shipment is due any time between 1/16 and 2/2. Obviously, I will refill the Roxane letrozole scrip at my local indie drugstore. But should I refrain from taking the Femara once it arrives? I know what the tabs should look like (size, shape, color, and imprint codes on both sides), and from NovartisUK's site that it is packaged not in bottles but in boxes of blister-packs (I HATE those--they're often hard to open if one must peel back a corner from each blister; or if they're the “push-through" type of blister pack, sometimes breakage occurs. At seven bucks a pop, that can get very pricey. I realize that if it's fake, I'm SOL because I don't dare try to press my case in the US--I’ve violated the law just by ordering from a Canadian website (and would have even if I went to a Canadian MD, got a scrip after being duly examined, filled it in a Canadian brick-and-mortar pharmacy and brought it back over the border, because it's illegal to import a foreign drug--but which I’ve often done with other genuine drugs, Rx-only and expensive Stateside, bought legitimately OTC and cheaply on holiday in Europe); and CanadaDrugs and RiverEast would plead ignorance of the drug's true provenance and composition (“strict product liability" isn't a cause of action outside the US, AFAIK). But $550 spent on pills I will never take is a small price to swallow if it means I would not unwittingly be getting a 3-month hiatus from necessary AI therapy.
Is there a private lab that can do a quick analysis of one of the Femara pills before I take any of them? $7 isn't that bad a sacrifice, especially if I have the Roxane generic on hand. Ironically, even if the Femara is legit, it has pigments and glycols that the Roxane letrozole lacks, and I fear it may cause SEs that the Roxane hasn't thus far!
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ChiSandy--Wow, maybe a compounding pharmacy in your area could check them. I don't really know. Truthfully when I started to check on these generics, I was glad to see the Teva came from Philadelphia PA. Roxane is in Columbus OH. I have also used SunPharma and they are in Mumbai, India.
I'm going to ask for Roxane and see if I can get it. The Teva has been fine for me as I have minimal but typical SEs from letrozole.
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I am trying really hard to tough it out with Femara, but I don't know if I can! I was on Arimidex for 2 months and stopped due to severe,crippling bone and joint pain and nausea. I have been on Femara 2 months now and all the terrible side effects are getting worse by the day. I have trouble walking due to foot, ankle, knee pain. Also my hips and hands are killing me. I have alleviated the nausea by eating prior to taking Frmara in the am. My memory has been much worse on Femara. I know there is one more I can try, but I hate switching. I feel great when I have a medication holiday, but when I start back, the hot flashes and insomnia stick with me for a good 1-2 weeks! This just sucks! Does anyone know what they do if you fail all three AI's? I am not a Tamoxifen candidate due to DVT post-op mastectomy.
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Maxdog are you in a cold climate? I have been noticing worse side effects in the cold. Of course, I am not walking as much. Time for mall walking in the morning!
ChiSandy I go on Medicare soon. I guess it will be good-bye to brand name. So at this point would you recommend Teva or Roxane?
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I wonder if Angelina Jolie takes an AI?
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Windingshores, although many patients report few if any problems with Teva, Roxane’s list of inactive ingredients is the shortest of all, including Femara. It’s also cheap. I’d say go with the Roxane version.
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Marijen, as I understand it Jolie had neither breast nor ovarian cancer nor any lumps or dysplasia/hyperplasia--her bmx and oophorectomy were purely prophylactic, based on BRCA mutations being found along with strong family history of related cancers. No reason to take adjuvant therapy to prevent recurrence of a disease she never had.
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But even with a double mastectomy she might get it......
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Marijen, I can't imagine A. Jolie would take Femara since isn't it only prescribed if your cancer is estrogen receptor positive, and she didn't actually have cancer, had a positive BRCA gene which of course is understandably concerning.
ChiSandy, thanks for the info on the generics. I have taken Teva most of the time and have had side effects but not disabling ones. Interesting that we even could ask our pharmacist to get the one we want, I had not considered that.
Have a great day everyone, only ten weeks until Spring lol. I am blessed to not have icy roads to work yet so far, otherwise I love winter!
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How not to gain weight
Chris Smyth Health Editor
Last updated at 12:01AM, January 28 2016
Eating a handful of grapes four times a week can stave off middle-age spread, the biggest study of its kind has found.
Those who ate regular portions of grapes, berries, cherries or apples put on no weight over two decades and even got slimmer, according to the study of 124,000 people over 24 years. The research looked at data from three long-term US studies, finding that under normal middle-age weight gain, people put on about one or two kilograms every four years.
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That's it! Today I stopped my Femara. I can't take the bone pain any longer. I.just.can't.do.it! Will call oncologist Monday for Aromasin script. Let's hope it works without the severe bone pain......
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I stopped my Femara 3 weeks ago and went back onto Letrozole......bone pain has all but gone and my previous s/e from Letrozole are minimal at the moment.
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enjoyeverymoment, Stars get whatever they want, even if it's not normally prescribed. Money talks.
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How sad but true, Marjen
Maddog hope the next med choice is better tolerated.
Scottiee I am not surprised that the generic had worse side effects for you. Good for you
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I tart Femara/letrozole on Feb 15. Doc called in prescription. When u went to pick it up I asked who the manufacturer is. It was Accord. I asked about the possibility of getting a different manufacturer and mentioned Teva or Roxane. They were able to order Twva and had it there within two days. It was Walgreens. I did this based on the suggestions from your posts. Thank you! I hope I understood them correctly and got the right thing. I am scheduled for hysterectomy on 2/11. I'm more nervous about the drug than the surgery.
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My brand-name Femara (Novartis UK) arrived a few days ago from a London supplier. I am still taking the Roxane generic letrozole--$17 out of pocket, when my previous insurance refused to cover it--even though I hadn’t started it they considered it a “maintenance” med. because I’d be taking it for >3 mos; their rule is that “maintenance meds” are covered only when bought from their mail-order pharmacy, which refused to order Teva--its policy is that they can switch generic suppliers at will without recourse and patients can’t specify a mfr. No insurer or Medicare plan will cover Femara, period. Until I get confirmation from Novartis UK that the shipment I got was the real thing (I sent them screen shots of the packaging), I’ll continue with the Roxane generic. Meanwhile, I went on Medicare--this refill cost me nine bucks. Femara is $900/mo. in the US (not a misprint). Via CanadaDrugs, it cost me <$200. Not cheap, but less than my son’s paying for his Symbicort inhaler. If I get word that the Femara I bought is legit, I’ll start taking it and see if I’m getting any more or different SEs than I have with the Roxane (which has fewer inactive ingredients than Femara--and no dyes, pigments or talc). If I notice no difference, I’ll take the 3 mos. of Femara and when it’s gone, I won’t renew it--just switch back to the Roxane generic.
BTW, both my local CVS and Walgreen’s refused to order Teva--“we get what we get” was their reply. My local standalone tried to order the Teva, but they could only get Roxane. Since that’s what Kellogg Cancer Ctr. carries, I figured it must be okay (and I don’t have to schlep up to north Evanston for each refill).
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cHolesterol went up so I eliminated sugars over 2 g in processed foods unless there is fiber in the food to slow down the absorption. 1/2 of table sugar is fructose and any excess goes to cholesterol. Don't want to survive BC only to get a heart attack
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