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FEMARA

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Comments

  • faith-840
    faith-840 Member Posts: 926

    I've been reading these posts about different generic brands of letrozole and have not seen a reference to the one the specialty pharmacy just sent me. I was getting the Teva brand and now they have sent Apotex brand. From my research, this is a Canadian company. It actually has three less fillers than Teva but I don't know yet about the SEs. I've hated them with the Teva brand. My hair is really thinning, my nails are getting very soft and they were always hard so I can just imagine what it's dong to my bones. The vaginal dryness is terrible. I've also had lots of anxiety issues which I believe is this letrozole. Since I am also on Ibrance with this letrozole and I have my week off of that, I decided to take the Apotex brand to see if I could notice a difference but after just a few days, it's too soon to know. Does anyone else here take this brand? I'm also on Medicare and my part D plan is Silverscript. I don't know if I'll be able to get the brand name Femara.

  • chisandy
    chisandy Member Posts: 11,408

    Hi, Faith. Not familiar with Apotex. Roxane’s letrozole has been easiest on me thus far (and has the fewest inactive ingredients), then Femara (hideously expensive--I don’t think any Part D plans in IL will cover it), then Teva. Been on it >6 mos. and have seen no hair thinning or nail softening I didn’t already have before diagnosis. I didn’t have chemo, though--so it might be that since none of my hair follicle or nail bed cells were killed off first, it may take a while (if ever) to see any hair thinning or nail damage exacerbated by pharmaceutically-induced (rather than age-related) estrogen deprivation.

    And no--despite what your MO (or especially your insurer) says, brand names and generics are NOT identical. The law says only that any generic must have at least 75% of the active ingredient in the original patented name brand drug. That means a generic can be up to 25% weaker. And you’ve already seen that not even all generics affect everyone identically--dyes, fillers, binders, etc can themselves be allergens or sensitizers.

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738

    This product has helped many with vaginal dryness and associated urination problems:

    http://www.carlsonlabs.com/p-302-key-e-suppositori...

    healing regards, Stephanie

  • dtad
    dtad Member Posts: 771

    grandma3X....I have adressed the issue of testing estrogen levels many times on other threads but...This is my number one pet peeve about MOs. IMO they simply do not know enough about female hormones and this is why we are not tested. Its a huge gap in our treatment plan. There needs to be an endocrinologist or at least an ob/gyn on our team to cover this issue. Anti hormones are powerful drugs with potential serious SE and to take them blindly is absurd. We all need to speak up and be our own advocates on this subject. Good luck to all....

  • faith-840
    faith-840 Member Posts: 926

    Sandy, thanks for your reply, I don't know how I can get the Roxane generic, I think we are at the mercy of our insurance plans. I asked my regular pharmacist today about Apotex and she had never heard of it, but she did tell me to check the label on the bottle to see where it's made and it looks to me like it might be made in Florida.

    Stephanie, thanks for the link to the suppositories, I'll check it out. I've followed some of your journey since joining these forums and you are my hero. I'm praying for you and all of us here in cancer land.

    The problem for me is since my tumor is ER+, I need my estrogen levels as low as possible. I really thought they should have been pretty low after going through chemo and 5 years of tamoxifen 20-25 years ago. I'm not overweight and was fairly active but at my age, I'm not ready to restrict my diet quite as much as recommended when I'm still cooking for two. I just do what i can and still enjoy life a bit.

    Faith (in the future)

  • froggie
    froggie Member Posts: 72

    I went to pick up my femara today. They filled it with Apotex and I wasn't familiar with it. Their distributors don't carry Roxane so they are special ordering in Teva for me. As an aside I have had great success with three other generics from Teva so as I brand I have had good experiences with them.

    After I got home, I looked up the Apotex and now feel like I made a mistake. The number of inactive ingredients that Apotex has is less (9) than the brand name (11) and less than Teva (15). Since they already placed the order I will accept the Teva. Assuming my feet, ankles and legs don't swell on it and I don't have any other side effects on the letrazole that the MO feels are deal breakers, I will ask to try the Apotex next month.

    The various manufacturers of letrazole are here:

    https://dailymed.nlm.nih.gov/dailymed/search.cfm?labeltype=all&query=letrozole&vfile=&page=1&pagesize=20

    You can see the inactive ingredients for the various manufacturers on their individual page.

    I didn't see Roxane on the list so looked elsewhere and posted them below.

    Inactive ingredients in Roxane: Colloidal silicon dioxide, lactose anhydrous, magnesium stearate, microcrystalline cellulose, pregelatinized starch and sodium starch glycolate.


    From additional reading it looks like Roxane either used to be or is also known as West-Ward.



  • hopeful82014
    hopeful82014 Member Posts: 887

    Thanks, Froggie - that's very helpful.

  • faith-840
    faith-840 Member Posts: 926

    froggie, i was at first upset by the change in generic brand of letrozole, but then like you, I looked up the ingredient list and saw the difference in the number of inactive ingredients so decided I would try it for awhile before complaining. I take it with Ibrance which is taken for 21 days with 7 days off, so since it happened to be the week I'm on the letrozole alone, I took the new bottle instead of finishing the Teva ones. I've taken it for 6 days now and can't really notice a difference yet, so I guess we'll see what happens when I start the Ibrance tomorrow along with it. I'll let you all know, if things change for the better or worse. I'm also moving the time I take it to later in the evening to see if that has any effect as some have said.

    Faith (in the future)

  • tangandchris
    tangandchris Member Posts: 934

    Good morning ladies

    I'm sure this has been covered at length but I wanted to get some current feedback. I've been taking Femara since January of this year and the bone pain is starting to really get to me. I had a bone scan about a month ago and I DO have arthritis in my knees, ankles, back and hip. I'm 43 years old and I feel about 70 and I can't help but think the Femara has contributed to this?? I have Tyelnol 3 that I take twice a day that keeps the pain managed, but when I try to sleep it is pretty bad.

    Anyway, I know it is the Femara and I've already gone thru Tamoxifen route too. Any tips on how to manage the pain? I'm feeling kind of depressed today about it all to be honest. I need to lose some weight, but my appetite feels out of control too. uggg IDK, I just need some help/hope.


  • peacestrength
    peacestrength Member Posts: 236

    Tang, I've been on Femera since early 2014. The overall pain from it has been difficult. The one supplement that helps me is taking 1500 mg of curcumin per day. I don't take pain medication except for baby aspirin....but everyone is different. I'm not trying to say curcumin will work for everyone but may be worth a try as long as it's OK with anything else your taking.

    Hugs

  • april485
    april485 Member Posts: 1,983

    Tang, I agree the bone pain can be pretty bad. With Aromasin, it was mostly joint pain but this drug, it is most definitely bone pain and it stinks. I have no answers. I already need a total knee replacement (and have for a few years) and am considering finally doing it. I was told to try to wait until I was a bit older so I won't have to have it done twice but at this point, the pain is really bad and I am using a cane so I know that I need to do it.

    After two lumpectomies in a row in 2013, I just wanted no part of any surgery at all for a while as I HATE to be put under, but pain is my constant companion and the lost sleep is bad. I take oxycodone (I go to pain management doctor for this) and it does help me to get through my work day but I have not upped my dose at all since I began it because I don't like the feeling of this drug at all so I take as low a dose as I can handle while still being able to do my job which provides income for my family. My doctor is surprised and said I am the first patient he has ever had that never asked for an increase in dose.

    If it is really bad, you might want a referral from your MO to pain management doctors and they can give you narcotics to help with pain but if you can get away with the Tylenol 3, I would stay with that. I know it is really painful and that it can drive you insane some days.

    Hugs- I totally get it!

  • lala1
    lala1 Member Posts: 974

    Tang--As peacestrength said, try turmeric. I'm actually on Tamoxifen but recently postmeno so may be switching to an AI soon. The Tamoxifen gave me pretty severe bone and joint pain so I went to a holistic doc after my MO just basically shrugged. The holistic doc put me on turmeric and ginger. He was pretty specific about what and how to take. He suggested Gaia turmeric and basically any decent brand of ginger. Take one capsule of each a day for a month. If you get improvement, continue. If you don't, up it to 2 capsules a day. He said if you still don't get relief then it's probably not going to work for you. I got relief within about 10 days. My pain went from a 8-9/10 to 1-2/10. I see peacestrength found relief at 3 capsules a day so that may be what it takes. I thinks it's worth a try. Oh, and I don't know if you HAVE to do ginger as well. They are both anti-inflammatories so taking both works for me. Let us know if you decide to try it and if it helps.


  • april485
    april485 Member Posts: 1,983

    I think the turmeric can work for joint pain but bone pain is different, at least that is what I read on a thread here somewhere. I tried the turmeric and I was soooo hopeful but it didn't work for me. I agree with lala though, it is most DEFINITELY worth trying. Anytime you can get pain relief without resorting to drugs, I am all for it. I only wish it worked for me. I did take the entire three bottles I bought and I upped the dose to 3 as well but alas, no go for me.

    Scared

  • kath1228
    kath1228 Member Posts: 26

    I also have pretty severe bone and joint pain from Femara and now mild osteopenia in my left hip. I have been on it for about 21 months.

    I was taking turmeric for a very short time and my doctors in NYC said why are you taking that? Who told you to take it? We dont know how it reacts with letrozole and don't know how it affects your metabolizing it - so not sure if there is any impact on the effectiveness. My MO in Florida said "have your tried turmeric for your pain"? Can't seem to get a straight answer as to whether it's a good idea or not. Anyone else have someone tell you not to take turmeric! I'm staying away just in case - or until I hear differently...so confusing....

    What I have that found helps me quitea bit is taking two extra strength Tylenol and one Advil per day. Along with mixing a tablespoon or two of tart cherry juice concentrate into my morning oatmeal and water or smoothies over the course of the day. I usually do less than 2 tablespoons. It really seems to help. It's got lots of antioxidants and and melatonin which can be helpful for sleep and I've also read is good for keeping recurrence away.

  • kath1228
    kath1228 Member Posts: 26

    Forgot to mention also - tart cherries are anti-inflammatory....which was my main point....gotta love menopause brain!!

  • kmpod
    kmpod Member Posts: 84

    The thing that works for me for the bone pain is Claritin (loratidene) without the decongestant. Without it I wouldn't have made it through my 5 years of Arimidex - just one month to go.

    I should add that it doesn't help with the joint pain. For that I take fish oil, vitamin D, a natural joint compound that includes boswellia and cucurmin and, in addition, acupuncture every 2 weeks.

    In spite of using all of those things my mobility is still significantly compromised - but at least I am mobile.

    I'll be very interested to see if and when the side effects diminish once I'm off the AI.

  • tangandchris
    tangandchris Member Posts: 934

    I am also osteopenic....does this cause pain as well?

    I'm going to look into the turmeric....well actually maybe I should ask my MO first. *sigh*

    I'd forgotten about Claritin, I remember being told to take that for the bone pain from Nuelasta. I can't actually remember if it worked or not lol

    Thanks ya'll, I just love the support here. I think I might email MO's nurse, not sure if she'll be irritated by email instead of calling, but whatever.

    I'll let you know what she says.



  • hipline
    hipline Member Posts: 72

    I have had very good results with SAM-E for joint pain. It's takes a few days to get into your system but I've used it for several years now and am very happy with the results. They usually market it for anti depressive properties so I figured if that's another benefit, I'll take it! I started with 800 mg daily and went down to 400mg after a few weeks. It's expensive but I use the Swanson brand which is much more affordable.

  • Shelly52
    Shelly52 Member Posts: 133

    thank you all for the great pain mgmt suggestions! I'm going to give them a try!! Maybe not all at once. 😊 I'm doing yoga which I teally like. It keeps me stretching and active.

    Best to all!

  • chisandy
    chisandy Member Posts: 11,408

    I had both knees replaced a couple of years before bc, so that's the one place I no longer have arthritis. I suffered a gluteal tear, IT band syndrome and subsequent hip bursitis from overdoing shoveling snow and walking through uneven deep drifts back in 2015; the pain from that had disappeared but it's back now that I'm on letrozole (but it's only on “startup:" after the first 20-30 steps I stop hobbling). Because of that injury, i've been on 200 mg. of Celebrex every morning and two Arthritis Formula time release acetaminophen (1300 mg. total) at bedtime. If my shoulder, back or ankles sometimes hurt, Voltaren gel works wonders (it's diclofenac, which is Rx-only here but OTC in Europe--every time I "cross the pond" I stock up on Celebrex, Voltaren sprays & gels, and Ventolin inhalers--all a fraction of what they cost here). I also take a Zyrtec for my myriad allergies at bedtime--it's in the same class of non-drowsy antihistamines as Claritin so maybe it's keeping bone pain at bay. I know it fights a broader spectrum of allergies than Claritin does, so I'm not about to switch (nor to add Claritin and risk overdosing).

    As to specifying a particular generic mfr., your insurance is a problem only if you buy your meds through its affiliated mail order pharmacy. I refuse to do that for several reasons, even though I know I'm spending more than I could: first, I travel a lot and prescriptions often run out while I'm away; and I've had to fight tooth & nail to get early or partial “vacation" refills to tide me over. It's a giant honkin' PITA. The other big problem is right there in your contract with the mail-order pharmacy: “we reserve the right to change generic manufacturers, without prior notice or approval and without recourse to the patient, based on our cost and availability." Sorry. but some things are more important than money. Before I filled my first letrozole script, I called Costco, CVS and Walgreen's to ask what generic mfr. they carried--and they said basically “you get what we give you." For Walgreen's, it was Sun; for CVS, Accord; for Costco, whatever they had in stock on any given day. No special orders. I called the outpatient pharmacy at Kellogg Cancer Center, and they replied “Roxane." (I hadn't heard of it at the time and was looking for Teva). But they aren't a “preferred pharmacy" acc. to my Medicare Part D carrier---however, my local indie drugstore/kosher deli is. So the pharmacist said sure, he'd order Teva. But when I picked it up, he said he could only get Roxane.....which (I was still on regular insurance, since it was Dec. 2015) was only $9. I took it and was surprised by how easy it was on my body. Unfortunately, since then he's been unable to get it--and I'm using Teva instead. When I noticed that the Roxane went easier on me than even the Femara I got from Canada (frighteningly expensive but a mere fraction of what it costs here) and the Teva, I checked the inactive ingredient list and found it’s the shortest of all. Unfortunately, I am now paying almost thirty bucks for Teva--my Part D carrier insists on “step therapy:" my MO has to certify I have “failed" three months of generic anastrazole. If she thought I should take that, she would have prescribed it instead of letrozole. So since I have to go 100% out of pocket for generic letrozole, I might as well see if Kellogg still stocks the Roxane. If so, I'll ask my MO at my Aug. 4 appt. for a new scrip.

  • ballyhoo
    ballyhoo Member Posts: 4

    Hiya,


    I'm on Zania gel and Solodyn pills. I hear they are not making Zania anymore, which I do like. The next thing my doctor told me is Accutane. Yay! Dab some Salicylic toner on those buggers with a Q-Tip. That works pretty good as well..


    I quit my cancer meds because I couldn't take the side-effects anymore. Especially this one...

  • grandma3X
    grandma3X Member Posts: 297

    I switched from the generic Sun Pharmaceuticals letrozole to name brand Femara after my estradiol levels came back high (14.9 pg/mL). I paid out of pocket to have it retested after a week on Femara and the estradiol levels are now below detection (<2.5 pg/mL). I'm still not totally convinced that it was the generic brand - the second test was done with a more sensitive and more specific LC/MS method, so it could have been just the method that they used the first time. My PCP is having me tested a third time using the first (less sensitive) method for direct comparison. I'll let you know how it turns out.

  • LizM
    LizM Member Posts: 46

    grandma3X,

    I took the brand name Femara from 2006 to 2012 (6yrs) until they went generic. I have been taking the Sun Pharm generic since 2012. I have not had my estradiol check since 2008 but I can tell you that I have exactly the same side effects of low estrogen with the generic as with the brand name. My neck muscles and other joints/muscles hurt the same and my skin is as dry as ever. I get an anxious feeling shortly after I take my pill and that has been going on for 10 years. I don't feel like I have any estrogen in my body. It is important to have the highly sensitive test for estradiol when you have it checked and I suspect that accounts for the discrepancy. My oncologist at Johns Hopkins also states the test is meaningless because, as someone already stated, they do not know what the level should be. It makes sense that you want it as low as possible, which is why I had mine checked in 2008. In 2008, while on Femara, my estradiol (which is the only one that matters) was undetectable.

  • LizM
    LizM Member Posts: 46

    grandma3X,

    I took the brand name Femara from 2006 to 2012 (6yrs) until they went generic. I have been taking the Sun Pharm generic since 2012. I have not had my estradiol check since 2008 but I can tell you that I have exactly the same side effects of low estrogen with the generic as with the brand name. My neck muscles and other joints/muscles hurt the same and my skin is as dry as ever. I get an anxious feeling shortly after I take my pill and that has been going on for 10 years. I don't feel like I have any estrogen in my body. It is important to have the highly sensitive test for estradiol when you have it checked and I suspect that accounts for the discrepancy. My oncologist at Johns Hopkins also states the test is meaningless because, as someone already stated, they do not know what the level should be. It makes sense that you want it as low as possible, which is why I had mine checked in 2008. In 2008, while on Femara, my estradiol (which is the only one that matters) was undetectable.

  • grandma3X
    grandma3X Member Posts: 297

    LizM - you are probably right. I came across a paper that showed estradiol levels bounce around quite a bit the first 9 months after starting letrozole. It's possible that the tests I had done just hit the highs and lows. In any case, I feel better with the lower number even if it's meaningless :)

  • Tammy_M43
    Tammy_M43 Member Posts: 565

    Grandma3x, very interesting! How we "feel" is important too as I like to feel that little pill is doing something!


  • ali68
    ali68 Member Posts: 644

    Hello, I've been on Tamoxifen for four years and onco wants me to change to Femara if blood test comes back post menopausal. I had a clear response with chemo so I'm thinking I've had enough of taking drugs and SE. The thought of starting a new drug and going through the SE I just can't stand. My onco says the risks of staying on Tamoxifen are too high of a Cancer WTF. 

  • grandma3X
    grandma3X Member Posts: 297
    Ali - give Femara a chance. So far I've had only a few aches and pains that go away after a few minutes of walking. From what I have heard, the SEs are not permanent, so if you try it for a year and they are unbearable, you can always say you gave it a shot.
  • chrissyb
    chrissyb Member Posts: 11,438

    Hi Ali, for me Femara has been both an easy med and a life saver. I was dx stage IV back in 2009 after failing chemo and Tamoxifen back in 2003. I was given Arimadex which I stuck with for 15 months but the se's were debilitating.......my 84 yr old mother moved faster than I, who was at that time 58. After a small progression my doc changed me to Femara and within a couple of weeks I literally felt like a new person and could once again beat my mom in the speed walking stakes.

    Yes, Femara does come with some se's but in reality they come, hang around for a few weeks and then disappear. I've been on it now for almost six years and other than the odd hot flush there are no other se's that I notice.

    All of these meds, even though they are grouped together as hormonals, are all different and where one or two or even three might give you trouble the next one may be the one that you tolerate very well with few if any se's.

    Love n hugs. Chrissy

  • dtad
    dtad Member Posts: 771

    Hi everyone. I'm happy for anyone who is taking Femera and is doing well. However the statement that the SE are not permanent is NOT correct. The joint issues can very well be. Just think we should all be aware and make our own decisions accordingly. Good luck to all....