FEMARA
Comments
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Found out that it is definite..................Medicare, thus, all insurance companies in the medicare capacity will not have "brand" Femara on formulary in the year 2012..........Everyone will be forced to take a "generic"....................To buy Femara cash (already inquired) with CVS, Rite-Aid, Walgreen's, and a couple others.........................if I want to buy it myself, it will cost me $1,800. every 90 days...............down to $1,600.............it depended on the Pharmacy you were dealing with.......................
I can't take th generic...........tried itand had bad SE's which I had almost none while on Femara............tried to get it through Novartis because of being below average income, and they told me "we don't give patient assistance" for Femara..................
Could ask my Dr. to switch me to Arimidex which Astra Zeneca, will pay for, but not sure how I will do on that drug..........
Right now I am asking my MO if she can ask Aetna to allow me to have Femara since I had problems with the generic.........will let everyone know how I make out.
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Ducky, what do you mean by "all insurance companies in the medicare capacity"?
Does that mean we won't be able to get it if we're on Medicare, or does it mean we won't be able to get it if our insurance company is affiliated with Medicare?
Phooey either way....
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nikola- I've been taking 1/2 a pill a day for the past 18 months. Side effects were too severe when I did a whole pill. Onc said he'd rather me have some in my system every day rather than skip a day. Seems my s/e's started about 2-3 weeks after starting a pill a day. I've never had any hair loss with Femara.
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Well ladies, after a week of joint pain to the point of tears they are forever taking me off femera. In two weeks I am begining aromasin and hopefully that eases some of the pain as it has some steroid like additives. Good luck. Onward
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Well, I hate to say it but I am not having a very good experience with the generic anastozole (arimidex) either. I am taking 1/4 tab twice a week and I feel dizzy and the constant need to take a deep breath. Tried going up to 3 doses a week and felt like my head was going to explode. Any one else felt pressure between the ears? I was really hoping Ferma might be better. It's been 5 weeks now and it does not seem to be getting any easier.
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Merilee, I get the pressure between the ears when I have a hot flash. I was also getting that feeling really badly prior to my doc upping my blood pressure meds and that feeling has backed off a whole lot. I still get it but not nearly as bad. Is you blood pressure okay?
Love n hugs. Chrissy
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Chrissy, last I checked all systems were good but I will for sure check that out again.I am also weaning myself of Lorizopam, and taking some supplements. I know that Lorziapan has withdrawal symptoms and one of my supplements is very powerful as well. It is hard to tweak out what is causing what. I also have PTSD so everything makes me think OMG its cancer. I have to work hard at overriding those thoughts with positive affirmations. Thanks for responding and letting me know that you have felt this too. It really helps me to hear that others have the same experience, helps with the fear factor.
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Merilee, you are not alone with the pain/discomfort = BC thoughts. I think each and every one of us have been there and it does take some work to not go there every time. You need to remind yourself the people who have BC also get other ailments. Hope it gets sorted for you.
Love n hugs. Chrissy
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Yup....got those thoughts as well. Been having headaches lately...which is supposed to be a s/e of the generic Femara, but my thoughts go else where.
Merrilee...I'd love to go off of the Lorazapam, but it helps me sleep. If I forget to take it at night I am awake half the night for sure. I'm between a rock and a hard place.
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Artsee, I am down to 1/4 tab before bed. I started taking it when PTSD set in and I was having nightmares about cancer. I have only had one since I cut back and I managed to get through it with out panic. Progress, not perfection I guess. I am wanting to get all meds out of me as I don't want to feel drudged any more. I stopped taking cytamel for my thyroid in April and behold! My last blood test showed that It had magically healed itself, hmmmm. Sometimes I wonder.
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I've been on the generic from Mylan for about 3 weeks now. I have increased joint and muscle pain, cramps in my feet and swollen ankles. Still this is far superior to the SE's I had with tamoxifen, so I'm not going to complain (well, not too much
). My oncologist said that I might be able to take a month or two "vacation" from it each year, and I hope she doesn't change her mind, as a little mini vacation from drugs sounds good to me. I had no rads nor chemo, so don't feel like I've got a choice. I cannot do tamoxifen, as it caused severe problems for me (blood clots plus other breathing issues).
Someone earlier posted about finding a natural hormone blocker. I went to a naturopath who is supposed to be an expert at cancer and he said that there really isn't any such thing. He gave me a couple things to take but neither of them have anything to do with blocking hormones. If you find something would you please let me know? I always have better success with "natural" remedies than I do with pharmacology.
So far, the letrozole (femara) hasn't made me terribly tired. When on tamoxifen I could have easily slept 14 hours a day (and did sleep 12 - and was still exhausted). So far at least I've had normal energy on this stuff. For the people who have fatigue from letrozole/femara - how long did you take it before the fatigue kicked in? Same question in regards to hair loss/gain?
Thanks!!!
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GardenGumby, not everyone gets all the se's from these drugs, but the fatigue for me, sort of crept up and after about a month I was falling asleep everytime I sat down. I changed the time I took my tab to the night and the fatigue was a whole lot better. I have been on the AI's for two and a half years now so I either have learned to live with it or it has gone.....either way I don't feel any adverse effects with the fatigue anymore. Now the hair loss................... For me, I noticed my hair was getting thinner but it took probably six months before I was fully aware of it. Since then, I have lost a whole heap more but not in patches.........it is just thinner. I wear it short so it's easy to fluff up with a hairdryer to give it some volume and no-one but me knows the difference.
Having said all that, I will remind you that if they are the only se's you get then you and I are doing pretty good. I'm happy to say that the Femara has got me to NED (no evidence of disease) and that's pretty good for being stage IV.
Love n hugs. Chrissy
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Chrissy, I love hearing that!!
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Chrissy, that does my heart good to hear that as well.
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Chrissy, thank You for Your post.
I just decided several days ago to start with Femara. I did everything (double mastectomy, chemo, oophorectomy) without second-guessing but going on AI was a hard decision. I had my prescription for Femara since April, was afraid of all SE and tried my best with diet and exercise to decrease even further my estrogen levels.
Then, last week a good friend of mine told me she felt two lumps and she has had biopsy the same day she had u/s. That showed me I would never forgive myself if I did not try everything.
So far I had three pills in the morning. Do You find them easier to take before bedtime?
I did notice some hair loss after my oophorectomy but that stabilized in month or two.
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Nikola, the hair loss could also be because of estrogen loss so can't blame it all on Femara. I usually take my tab about an hour after dinner when I go to the kitchen to make a cup of tea but that is only so I don't forget to take it. I keep to routine as much as possible otherwise i sit and second guess myself as to wether I have taken it or not....lol. I don't think it makes much difference when after dinner you take it just try to do it in a routine and if bedtime if best for you then do it then.
I think with all these drugs we go in thinking only of the worst se's and that is what we end up with and I know that we are all different and what suits one does not suit another but keeping an open mind I think helps as then you are not looking for se's and so probably miss a lot of them. Good luck and hope you miss them all (se's that is).
Love n hugs. Chrissy
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I can second Chrissy's experience in several ways.
My first several months on Femara, if I sat down I was nodding off in no time. I had waves of fatigue that were non-negotiable. Like Chrissy, I also found that taking it in the evening (between 6&7 is best for me) really helped. Now, a year later, fatigue is not a regular problem for me... I have my days, but then again I am 50... and at any rate the fatigue I have now is rarely as insistent as it was those first several months. I like to think that the utter exhaustion I felt in the beginning was healing fatigue!
Also like Chrissy, I started noticing my hair was thinner about six months in. It's a general thinning all over, but it bothers me most around my temples. I am taking B vitamins and hoping the biotin will keep a lid on it. Meanwhile, I just keeping going shorter and shorter, a couple of inches at a time... it's about ten inches shorter than it was a couple of years ago.
So overall my experience after one year on Femara is that the fatigue and the hot flashes are both definitely improved. That is a Big Deal. On the other hand, my joint stiffness has increased a bit, and I feel like I've battled the blues more in the past few months, and my weight seems to climb faster the longer I go without estrogen. (I need to exercise more, but ya know, it's hard to think about the elliptical first thing in the morning when you wake up with Femara feet! Ouchy!)
BUT... must keep all these aggravations in perspective... at my last biannual scan (in April-- I'm due for the next one later this month), many of my extensive bone lesions had disappeared and all the rest were smaller. My pericardial effusion from six months prior was gone, and some former spots of suspicious glucose avidity in the original tumor bed area had also vanished. By October, my tumor markers had fallen to within a normal range.
So I guess if creaky joints, a thick waist, and less glamorous hair are the price I have to pay for progress... ie More Time... I'm good for that trade. Even though I hate the way the stuff makes me feel, at least I'm still here feeling stuff!
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Thanks ChrissyB. I take the meds at night - usually around 8:00. Sometimes I wake at night aching, but I assume that my daytime achiness would be worse that it is if I took the letrozole in the morning. Since I'm still working fulltime I try to keep all the body parts as lubed and mobile as possible.
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Check out the newer drugs for osteoporosis - there is one my mother uses that is administered with an epipen like diabetics use. It has fewer side effects, you dose a tiny amount every day so the side effects stay at a minimum. Also if you do have a reaction, you do not have 6 month to a year of it in your system! This drug builds bone as well. Worth your time to check it out.
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Anyone on here that has suffered hair loss and now off the drugs? Just wondering if your hair came back after you finished the drug?
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Hi Anthunter, I havent heard of that drug but will certainly check it out. Hair loss can be caused by the lack of estrogen as well as the side effects of the aromatase inhibitors. It can also be caused by thyroid problems. My hair is thinniing but I will not be stopping the femara that I take due to being stage IV. Hopefully the thinning will slow down or stop before it's all gone. I have heard that after stopping the drugs hair does recover somewhat but I'm not sure if it does fully.
Hope this helps.
Love n hugs. Chrissy0 -
Hey ladies, they took me off Femera a week ago. Still having rough days with pain in my hands. What are you all taking that works???? Onward
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Hi Onward, I'm on Femara but I'm not having any significant se's. Have you tried either Arimidex or Aromasin? They are both Aromatase Inhibitors. Arimidex is very similar in make up to Femara but the Aromasin is put together differently and has a steroid base. If you haven't ried either of these and because of your reaction with Femara, perhaps your onc will want you to try thr Aromasin.
Hope those rough days become less and less and you feel better and better.
Love n hugs. Chrissy
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Onward...are you staying off the Femara for good? If so can you report how you feel as time goes on? I'm hoping for things to settle once off for good.
Just got up and my fingers can hardly bend to type this. That gets better as the day goes by. My back seems to have gotten better. Thank goodness...after watching the Dr. Oz show yesterday that was one of the signs of pancreatic cancer....back pain...yikes. Maybe I should not watch that stuff.
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Hi Chrissy, they are putting me on Aromasin next week for that reason. Hoping it's the answer.
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Nana, I dont see your post but I got a notification of it. I was taken off Femera Nov.30 forever. I still have hand pain. But I am seeing a lympedema specialist today just to make sure its not because of that. I have already seen a hand specialist that couldnt find anything. Because Femera really is the best drug for me, I wanted to be sure that it was the Femera that was causing the pain that was so bad it brought me to tears. If it's the lympedema, I will go back on it, otherwise I am done.
I can now get out of a chair or couch without looking like a 90 year old. My mood is back to my old spunky self, My knees can again take the stairs and my stomach is 2" thinner. I really had tried to stay on this stuff, but it just was sucking the joy out of life for me. : ( I will let you know what the doctor says today.....sigh.....Onward
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Onward, good luck with the Aromasin! I hope you tolerate it much better ans the se's are either none at all or tolerable.
Love n hugs. Chrissy0 -
Onward... "My mood is back to my old spunky self..."
Wow.
I'm a little taken aback by how encouraging it feels to hear someone actually confirm that.
I miss old self, like you miss an old friend who has gone far away. I wonder all the time whether she's really still in here somewhere or whether she went away for good with cancer... or whether she's just submerged in letrozole.
My best friend of 30+ years said to me just yesterday, "You know Lu, I think you've lost all your weird and crazy. You never get in high spirits anymore. You're just always kinda in the 'meh' zone."
Holy cow, wake-up call right there.
I think this is the main reason I have resisted the anti-depressants my onc has suggested, though -- this emotional flatness is the problem and I'm afraid anti-depressants will just flatten me out even more. And I don't really feel depressed, per se... I just feel like "my old spunky self" as you put it shuffled off to Buffalo and forgot to come home. And I think about cancer WAY too much and I'm really worn out with myself over that. But depressed? Well heck, I probably ought to be, all things considered -- but that's not exactly it.
Femara does something that is like a cousin to depression, I think, but it's not quite the same thing... it's just a flattening.
What do we do for that? Does anyone know? Can we talk about this? Maybe we could help each other...
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Lulubee...I agree with EVERY word that you just wrote in your post.
I could have written that myself.
You can PM any time. We'd have a lot to talk about.
Artsee
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Ditto, for me as well. This is the first year in my life I haven't put up a Christmas tree, or ANY decorations for that matter. I don't feel depressed, just don't have it in me. My family doesn't know quite what to think. They are all kind of tip toeing around the issue. I know they are all wondering what it going on with me.....as I am usually gung ho with music, baking, etc. I am buying gifts & wrapping them. But that's it. Surprises even me.
On another note, how often is everyone getting bone density scans? I had one prior to starting Femara, but it's been 2 years now....just wondering what the standard is for monitoring bone loss.
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