FEMARA
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Hi, Winding shores- do you have a nurse navigator who can help you at your cancer center? I had one tell me that if my insurance would not pay for a drug she would help me contact the drug company to get me a lower price. It would be worth a phone call.
Bjsmiller- Yes my bones thinned while I was on Ai's even with two infusions of Zometa. My Oncologist said Zometa protected me from it being even worse. I guess my body really hated the Ai's.
HapB- Bjsmiller is correct that any major dental work needs to be completed before you start Zometa. I had 3 crowns and some fillings done as I was told that since I was going to be receiving Zometa for 3 years ( every 6 months) that I could not have major dental work and my Oncologist made me get a dental clearance, he even called my dentist. Really through Oncologist I had at the time. I wish he had not moved on to the Mayo Clinic.
I will remember to take the Tylenol with my next Zometa treatment. I did take Benedryl the 2nd infusion and the side effect were much better. The first time I felt like I had the flu. Not everyone gets that reaction though. The 2nd time I also asked it be ran for a half hour and they gave me fluids by IV before and after along with had me drink water during. I had minimal side effects after that.
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Before I posted here on the drug price problem, I had already called insurance, Novartis (the maker of Femara) about their patient assistance fund, and had also called various patient assistance programs. None of them could help. Femara used to be included in the Novartis program but it is no longer. For many drugs, assistance is available for one person even with incomes as high as $75k. But not for Femara.
I was already paying a lot for Femara. I am curious about what others are using for a Medicare plan. Perhaps I need to change. Mine is a BC/BS PPO Advantage Plan. I think I paid $293 the last time. But $720!
The limit in my plan on medical expenses is $3500 but the limit for meds is $4000 to get out of the donut hole. I have no idea who I got into the gap but it must be mainly Femara brand name because I don't have that many meds.
Asthma meds are brand name only and I just stopped taking them. Forteo for osteoporosis is brand name and expensive and I don't take it. Reclast was actually on the Novartis Patient Assistance list, if anyone else needs this info.
The MGH pharmacy told me about a manufacturer whose generic is closest to the brand name- Breckinridge. So nice of the pharmacist. I am trying one pill of this generic, tomorrow- just picked up the one pill for 97 cents! If I don't react, I'll get more. If I do react, I will get the brand name again for $720. I may start cutting some in half to save money, too.
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HapB yours must be a generic, right?
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I'm not sure if brand change of the generic had anthing to do with increased pain.
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Windingshores, if you can get into a supplement plan with a separate Part D. Drug plan if might be less expensive for you. I have a BC/BS plan and it pays the 20% that Medicare doesn't pay so I've had virtually no expenses with this cancer treatment. The drugs can be expensive such as the Ibrance I'm on but Pfizer has a plan for lower incomes so I get that for free. The premiums can be pricey and I'm not sure if you have to qualify health wise or not but I'd look into it. I signed up before my MBC diagnosis. My drug plan is silverscript and the generic letrozole is only about $5.00 a month.
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Ok, I was hesitant whether I should post this or not, but decided to post. Without naming or pointing to any specific poster or post, lately I've noticed that there are several posters on several threads in HORMONAL forum who've been trying to influence others not to take hormonal therapy. Most of it is subtle and sometimes you have to read between the lines, and sometimes downright scaremongering for those who are about to start their therapy. BCO shows up on top of google searches and the number of people who read these boards and don't post far outnumber those who read and post. It's unethical to attempt to scare or discourage a high risk, high grade young patient from taking hormonal pills, or a low risk older patient for that matter. These posts will cost lives.
I'm saying this as someone who had debilitating side effects on Aromasin and had to switch back to tamoxifen. And I'm lucky that Tam agrees with me. So, I'm far from thinking these drugs are innocent and that side effects shouldn't be discussed, but this is going way beyond that with a tinge of conspiracy and anti-science slant.
Note on top of Hormonal forum:
Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.
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Amen, Eren. I almost didn't try letrozole because of all the terrible posts here. I am doing fine with it and am glad I did. People with bad side effects need to remember that not everyone gets them and if they do get SEs, many are manageable. For example, one of my chemo drugs (nameless so as not to cause fear) caused a neuropathy in me so profound that I could barely walk for the week after my first infusion of it. I wound up shedding all the skin on both hands and both feet. I couldn't turn a key, open a box, perform fine motor skills involving my fingers, had massive difficulty opening food packaging... It was awful and terrifying. However reactions that severe don't happen all that often. I was changed to a different med, did fine, and finished the treatment. I would never recommend to another person going through chemo that they not use that drug because I didn't tolerate it. They might do fine with it and it is an effective form of chemo.
That said, for those of you considering starting AIs, it is important to look at your realistic chances of recurrence. What was your stage and grade? What treatment did you have? How old are you? All sorts of things play into the decision. If your chance of recurrence is low, then your threshold for tolerating side effects should be lower. If your chance of recurrence is very high, you might want to consider accepting a higher level of side effects. You can also start the AI and if you have problems that are unacceptable to you, stop taking it. Most people will have their side effects clear up after stopping.
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It's good or bad across the board, no matter who we are. Trial and error. I liked Arimidex. Did well. Femara not so good for me. But I would take it if I had to, it did work it seems, for a few months great improvement. And I wonder if I can also take Arimidex with the Xeloda should I continue it. I think I would feel pretty confident of that combination, it it can be taken as such.
Marijen - thank you for the links. I edited my post for health update, it's not that and tweaking tx to help.
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I've been following this thread bc I just switched to letrozole last month from exemestane. Haven't updated my byline, but I'm doing better on Letrozole. I lost ten pounds, can exercise and not feel like I'm wearing shards of glass for sneakers due to joint pain, and feel less achy. However, I did experience some pretty severe mood swings, whether it was from the withdrawal from exemestane (perhaps due to its steroidal component?) or the letrozole itself, things seem to have evened out some. It definitely seems everyone is different and it's important to read the threads for help but to choose the path for yourself. Peace, sisters.
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Falconer, what manufacturer does your letrozole come from, please
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Eren, thank you for having the courage to post. I too have been concerned.
I am a person with fibromyalgia and chronic fatigue syndrome. While there are days that I don't feel very good on Femara, I also have confounding factors.
I just turned 60, and I found out that as you age radiation may no longer be recommended. AI' s offer a layer of protection that may otherwise nit be available.
Additionally, all medication has risk, even an antibiotic can cause hearing loss or a ruptured Achilles tendon years after taking.
This board is a lifesaver for the newly diagnosed. I am so thankful to have been a part of it through both my cancers.
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Faith, the nail symptoms you’re describing sound like fungus. Get thee to a dermatologist, STAT. Chemo damages nail beds (they advise you to use dark polish until they grow back stronger). I’ve never heard of AIs doing that, except perhaps if you’ve inherited a tendency for your nails to thin after menopause.
My nails started growing in with vertical ridges a few years ago, long before diagnosis. (My nail tech, who owns her salon and teaches those studying for their licenses, says she’s observed that phenomenon in her clients who went on to be diagnosed with cancer of any kind). My mom had the ridges too, but she always wore polish. When my nails first got weak (and I used Nailtiques) to strengthen them, they would split horizontally from the side of the tip, especially after playing guitar. That’s when I began getting enhancements. I wore acrylics for about 3 years and that’s one of the worst things you can do for your nails: they have to be roughed up (usually with a power tool) to help the acrylic bead spread properly and bond to the surface; and every 2-3 weeks you get “fills,” where the “moon” or bare nail surface that grows out from the cuticle gets another little bead of acrylic. They’re made when a polymer powder is mixed with a solvent—sort of like a Superglue epoxy. Acrylics are hard as rocks, the solvents are so unhealthful that you can smell them the minute you walk into one of those shopping mall “nail mills” with about 20 techs wielding Dremel drills and wearing masks. And you (and they) inhale the dust from filing the acrylics. I switched years ago to gels—they’re brushed on from a little pot and cured with an LED. On my less weak nails (my nails, after all those years of being roughed up for acrylics, are soft but split vertically from the tip down, along a ridge) I get a “no-chip manicure” (a liquid gel polish). Both the gels & the no-chip are semi-porous so your nails can breathe, and instead of getting fills every two weeks you get the stuff soaked off and have a manicure—letting the nails air out—before applying the new coat(s).
Truth to tell, if I weren’t a fingerpicking guitarist who could never get used to plastic or metal fingerpicks, I’d just get plain nail polish manicures (or do it myself).
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May have said this earlier, but right now I can only get the Accord letrozole, which is not too bad (but Teva was better and Roxane gentler still—then Roxane was bought by WestWard, which no longer makes letrozole). I do have a stash of real Femara (Novartis UK, bought from Canada) that I use if I run out before I can get a generic refill. I won’t take Sun’s generic—a lot of people have worse SEs from the additives (inert ingredients). My Accord runs me $4.60/mo.
Depression runs in my family—my dad was bipolar before having major depression the last 10 yrs. of his life; our son has clinical depression. I had postpartum depression for a year and a half. I’ve been on maintenance bupropion since 1999 (Desyrel and then Prozac before that); our son is on maintenance Zoloft, since 2000. The antidepressant is the last drug I would ever go off, and all my doctors agree.
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ErenTo and SusanRachel...not sure if you referring to my posts or not since I do not take an anti hormone. However I have been very careful not to influence people either way. I actually was the one who suggested having a thread for those of you who do well on aromatase inhibitors and its very active. I also tell people to PM me if they want more details on my decision. That being said I do post on the alternative thread, reducing estrogen naturally and walking away from aromatase inhibitors. None of which I started! Sorry if I sound defensive but there has to be a place on this forum that we can discuss this subject without judgment. I've said many times that I support and respect all decisions made. The side effects of these drugs are real and people who have them need support too. I happy for anyone who does well on them. Unfortunately that is not true for everyone. Good luck to all navigating this disease.
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I'M RESIGNING EFFECTIVE TODAY!'
/laugh/
No more Femara.
Femara has kept my breast cancer stable for 1-1/2 years. The side effects of peeling skin, fatigue, bone pain in addition to my bone cancer pain, hair loss, and now a weight gain equal to where I was when diagnosed (30 lbs.!) I had to finally stop.
Side effects were on an every other day dose. I'm moving to Ibrance.
I hope no one suffers from Femara so much that QOL is diminished. These AI can be used as treatment.
Hapb and marijen, thanks for kind words. It's hard to stop a drug that was working. When I think of others with b.c., who would treasure having a drug that works, makes me sad. To answer a question or two, no I didn't have chemo. I was highly pressured to. Now, 10 years later, i know the chemo wouldn't have helped my cancer, because it's slow growing. I didn't take Tamoxifen before and yes 3 years between Stage I and Stage IV. No regrets. I was able to use Tamoxifen as a treatment and Femara. Others may look at my situation differently but I believe I'm a good example of how avoiding overtreatment has allowed me to live 6 years with Stage IV. and with my breasts intact.
Wishing everyone a healthy happy Friday.
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Sandy, my nail problem is not a fungus, I have seen a dermatologist. My MO says it's from the Ibrance I'm on. I had been getting gel nails but had them removed two weeks ago and debating weather or not to get them for our upcoming trip or just go bare but they are not as nice looking bare.
Tarheel, you said you're moving to Ibrance but are you aware that most women take it with femara or another AI? The other possibility is Faslodex with Ibrance but I don't know anything about the SE's of that drug. I'm currently on a break from Ibrance and I can tell you I feel better in lots of ways but femara has lots of effects too as you well know.
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Maybe I should have added potentially. These drug are potentially life-saving, so discouraging anyone from taking them is, potentially, jeopardizing lives. It's unethical, there is no ambiguity there in my mind. This is my last post here on this subject as this is not a place for the conversation I'm having. I just thought I had to say something when I read someone was staring at her pill bottle in distress.
HapB, do you have any data that 95% of cancers are a result of what our bodies are exposed to? I would be interested.
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It is unethical to hide the truth Eren. Noone "recommended" not taking anything. As you noted this is supposed to be a safe place to share....
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Faith, I'll be taking Ibrance with Faslodex.
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I hope the Faslodex works for you TarheelMichelle, and that you'll be feeling better soon. Please let us know how things are going for you day to day.
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I have been on Femara for 4 months now as a neoadjuvant treatment. My tumor has shrunk by 65% since Feb with combo of Tamoxifen to start and then Femara once the Lupron shots got me into menopause. I feel like that is pretty strong proof that AIs work for me. My MO told me about all the side affects and she painted them as worse than they have been. I get sore when I sit in a car too long driving, my butt hurts after Lupron, I am dizzy and hot a lot, sometimes I can't fall asleep or stay asleep. I don't feel great a lot but the first half of the day I feel pretty good I just get worse as the day goes on. I exercise most days (and then nap sometimes if I need to). I don't think about the fact that I may take this drug for 10 years. That freaks me out. I can't live life only in the mornings for the next 10 years. So it's One Day at A Time for me.
I agree that several of the posts here have been very biased against AIs. My MO said that people who post on the internet are usually those that are unhappy. The rest are out living life. I try to take everyone's opinion with a grain of salt and realize we all have our own experiences/cancer journey.
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Misposted
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dsteaparty - that's great that your tumor shrunk so much! It's good evidence that the AI is working for you. I agree with your MO - many people who post here are are having problems with SEs and looking for help. I have been on Femara for about a year and the SEs have not been bad enough to make me think about quitting. I'm actually really greatful that Femara is available and stories like yours make me hopeful that any rogue cells left over after my surgery will be killed off by the drug. Thank you for sharing!0
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It might make you dizzy at first HapB so take it when you won't be driving and maybe when you won't be sleeping so it doesn't wreck your sleep. Then you will know what time is good for you. I didn't get hot flashes so before bed was good
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Yes I think it goes away after a few days and it's not all day long maybe a few hours. You can take it after you're done driving for the day. That's how it was for me, it's different for everyone but I've noticed others mentioned that.
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HapB, I can't remember and I'm too lazy to look back. Do you have other health issues besides bc? I ask because I don't, so Letrozole has been fine for me, and maybe that's why? I started on Anastrozole and ultimately I couldn't tolerate the joint pain with it, so MO switched me to Letrozole and I've been much improved since then; 11 months ago. I noticed marked improvement within three days. Some ladies on this thread have been the reverse, so we really are all different. Like grandma3x, I have SEs, but not bad enough that I would consider quitting either. Overall, I think my QOL is still pretty darned good, and I still work full time. I've never had dizziness, but if you're afraid of that, then be sure to start on a day when you're in the comfort of your home, can rest, and don't need to be anywhere, and see how you do. BTW, my AI is from TEVA.
As for nail ridges, I've had them for years, but not from an AI. I read, years prior to dx, that nail ridges may be an indicator of cancer. Seemed to be true for me and ChiSandy's nail tech saying she's observed that phenomenon in her clients who went on to be diagnosed with cancer, says there might be something to it. Best wishes.
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HapB, I have HBP, too, and am taking meds for it, so I'm actually not totally free of "other" health issues. Guess I tend to forgot about that as the least of my problems. Good luck and I'm hoping the best for you.
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OMG, HapB! Now I do recall you telling about your previous cancers, and that's a lot to have been dealt! Ultimately, you have to do what is right for you. You know your body best, and I'm wishing you the best.
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HapB...the alternative thread is called alternative medicine. You can look it up in the search bar. Good luck to all.
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My MO said to research as much as I could for a set time a day then quit and go out there and live my life. Let him and his staff take care of me. I am saying this because your comment, DSteaparty, reminded me. ("My MO said that people who post on the internet are usually those that are unhappy. The rest are out living life. I try to take everyone's opinion with a grain of salt and realize we all have our own experiences/cancer journey.") And it reminded me so much of him - I was in it to the end with him - 'til death us do part kind of commitment on my side - but he was often wrong and then he moved away to learn more and be a better doctor than he had been. I miss him. My cancer experience would not be complete, my story not the same without him, good and not so much. My path wouldn't be the same without all the women and men who have been here on BCO for me and to answer my questions and hold my head when I am in despair or pissed off at the world. I am glad they are here to turn to and posting their hearts out, even if I can only allow myself a half hour a day to check in. I still follow my MOs advice in that way.
HapB - About being dizzy on Femara - I think I was unsteady. I would time the dose so you have time to regain your whatever, just in case, HapB. Have a back up plan, be dressed for an ER trip, whatever you think you need so you will feel more certain.
Here's what I do when I have to take a new drug. I go (w Hubby, so recommending someone w you) to a restaurant near an ambulance center that can take me to the hospital of my choice. Then I take the pill and hang out for a few hours. Did it with Arimidex - did it with Xeloda and Femara. When I take RXs I am very frightened because my bor and sis and I all have very bad reactions to everything, we need the child's dose. My sister even takes her first dose while sitting IN the doctor's office sometimes. And my borther has gone to the hospital lobby to take a new dose of something or another. We laugh at holidays, but it is tricky.
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