FEMARA
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Jerseygirl, sorry to burst your bubble—just because a drug was covered under your pre-Medicare insurance, doesn't mean Medicare will cover it. (United’s Choice Plus PPO covered Roxane’s letrozole for $9 for the one month I had it before going on Medicare, but my Medicare Part D carrier won’t unless that’s what the pharmacy happens to have on hand and I didn’t specifically request it). It's utterly irrelevant that the drug is to treat cancer, regardless how serious cancer is. It's also utterly irrelevant that it is necessary to prevent dangerous side effects like fractures. Insurance companies—and that includes Medicare supplement carriers—do not operate under compassion or even logic….just according to the bottom line and how little they can get away with spending. (Bitter? MOI?)
Just because one's doctor orders a drug and says it's medically necessary, it doesn't mean that the business-school grad bean-counters at one's Medicare Part B or D supplement carrier must agree to cover it. There's a helluva lot of buck-passing and circular reasoning designed to wear patients down and make them either withdraw their prior auth or appeal app or say the hell with it and go 100% out of pocket. Medicare Part B will cover most “treatments," defined as administered in a hospital, clinic or other facility—such as chemo or infusions administered in an I.V. suite. But if the drug is an injection, even if the doctor administers it, it is considered a “drug" because technically, once it is prescribed anyone capable of wielding a hypodermic can theoretically inject it, and if it is covered at all, it is the purview of Part D. But if the carrier believes it costs too much, isn't available as a generic, and that a cheaper drug in the same class….or even in an older class developed to treat the same ailment…will work AT ALL, then tough. There needs to be evidence presented by the treating physician as to why no other drug will do—demonstrated evidence that its “equivalent" cannot be administered to that patient by the insurer's preferred means, that the patient has a medical condition that prevents it from working or would cause irreparable harm, or that the patient has taken it before with terrible and intolerable side effects. (In the case of brand name vs. generic drugs—or even one mfr's generic vs. another's of the same generic—that last one usually doesn't cut any ice—if it did, Femara itself would be covered, and no Part D carrier and nearly no regular insurance carrier will cover it). Often, several prior auth requests and even multiple appeals are necessary.
I get my Teva letrozole from my local independent pharmacy/deli, which is a “preferred" pharmacy in Humana's network just like the chains. Unfortunately, because I specified “Roxane" or “Teva" generic letrozole, rather than accepting whatever the drugstore has on hand, (in)Humana calls it a “non-preferred brand" and won't cover it. Wal-Mart, Walgreen's, CVS, and Costco all refused to order any specific mfr.'s version for me. But at least Teva is only about $30 a month. My pharmacy can't get Roxane any more. Kellogg Cancer Center's on-site pharmacy, last I checked (Dec.) carries Roxane, for $10/month—but they're not part of Humana's network (preferred or non-preferred), and I don't know if that's what they still have.
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Faith, when I met with my insurance agent a year ago, we went over formularies for plans available in Cook County—and Humana Enhanced had the largest one, with Silverscript far behind. Certain plans may not be available in all counties, or even outside a city. My friend used to live in the Edgebrook section of Chicago, and had BCBS for both her Part B & Part D. She moved to Grundy County, and her plan was cancelled—she had to switch to AARP/United Health. (She had DCIS that was ER-/PR-, so she didn’t have endocrine therapy nor the bone drugs it necessitates).
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I get my Letrozole from Walgreens. They offer Accord. I asked if they could get Teva or Roxane for me and they ordered it in. No additional cost. No problem. I take Teva. I do get all the side effects that are mentioned however so I'm not convinced one manufacturer is better than another.
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Sandy, I realize not all plans are offered in all counties. I just mentioned it as a possibility. Its always about the almighty dollar for these insurances companies. I'm afraid it's only going to get worse. Almost everyday, we read of another ins co. Pulling out of Illinois. This really is a state in trouble. Wish we had the option of moving. But, it is what it is.
Faith (in the future
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Being across the river from IL and having family in Chicago, we hear it all about the problems in the state. It is so unfortunate that medical care must be compromised. Our agent had told us BCBS was not a good choice for a secondary, but if you are limited in choices you have to take what you can get, I suppose. Our secondary is supposed to be the best out there, but we have really not tested it for extraordinary expenses. That's when you find out, unfortunately. I guess you really do need to change insurance as your needs do. What a pain! So far, happy I was diagnosed while on Medicare as there has been no out of pocket, but luckily we are both "healthy", except for this little cancer diagnose! 😳
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AlaskaMama I ordered the fish oil on Amazon after reading your post on it a while ago. I do believe it has helped me. I still have a few aches and pains but not as bad as before. Thanks so much for your recommendation!! I think I paid about $19 for 180 capsules. Here's the ones I'm using (2 a day)
PS...I was born in Anchorage. Hope to get back there one day....it's on my bucket list 😀
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Eat salmon from Bristol Bay, AK—support the local Native American fisheries and prevent the Pebble Mine from becoming a reality, filling the bay with metal waste and sludge.
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Marijen....interesting article. I'd be interested in your results. Please keep us posted if this works/or doesn't.
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Will I ever feel right again? I had to come of anastozole due to bad side effects and had 3 weeks before going on Femara. After the 3 week I started to feel almost normal and the pain had gone back to my normal rumble with my fibro. I can cope with that as I have most of my life. Now a month into the femara and I am getting the pains back and I am having stomach issue and I am feeling like crap again. I will try to stick this out but I am struggling to stay active and started putting on weight despit keeping active and carful with my diet.
KarenAus
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What kind of pains are you having with Fermara? I have the typical joint pains that go away after getting up. Fingers hands feet knees back shoulders. The weight gain is an issue that I struggle with as well. I need to keep calories way down and exercise in order to lose anything. Hope you don't continue to get worse on the Fermara. Is the pain all the time??
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So, I am starting letrozole today after stopping anastrazole 3 weeks ago due to side effects. Would appreciate any information/suggestiong on the best supplements recommended to help with some of the side effects. Getting the TEs out Wednesday and hope to join a gym/pool once I am released from the PS. Thanks in advance!!
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Nash54, It's only been a week for the gelatin,but I think it's helping. One Knox pack in the am and one in the evening. Going to try to mix it in plain yogurt. It dissoves better in hot liquid. My PT noticed my knees must be better when I was getting up off a chair, finger joints and trigger thumb better, and bottom of the feet pain. Going to try codliver oil liquid too. A spoonful a day from whole food. We'll see after another week.
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You will likely feel better KarenAus but maybe not 100%. I took a 3 month holiday and felt better but not completely...sigh.
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I've been taking Letrazole for 6 months now, and I can't really discern any SEs. I have severe osteoarthritis in my feet and knees, so I can't really blame my pain on the letrozole. I was pretty anemic from chemo in the spring and summer and required iron infusions, but I don't think the letrozole had anything to do with that. I suffered severe vertigo for about 3 months, but I have chronic vertigo that occasionally gets set off for unknown reasons. My ENT did some maneuvers with my head and fixed that up. I have not gained weight or seen my cholesterol or triglycerides or blood sugar rise.
All in all, I have had a good experience with letrozole and have no plans to stop taking it. I could stand to lose about 25-lbs, starting tomorrow, so we'll see how that goes. Hopefully, I can lose at least part of it before Thanksgiving.
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On the anastozole I felt like every bone was being hit with a hammer. I also became almost suicidal, I was so down and I have never been like that.I was taking strong pain killers everyday to survive and to stay active.
I am starting to feel the same again, the pains have reemerged and I am starting to feel down again.
I ride (horse) 3 times a week and do rehab once a week and am careful with my diet which is hard on this because I am feeling hungry all the time. Enough has been done to destroy my body without destroying still more.
KarenAus
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I guess we did not realize how very important that little hormone estrogen is to our well being. Even after menopause (which is my situation) enough estrogen remains in our bodies so that we feel somewhat normal (although some women have a much harder time after menopause thus the reason estrogen replacement therapy came about and was so widely used until implicated in breast cancer) so now that we are suppressing that little bit of estrogen that still exists, it is why we feel so dreadful. Those that do not have side effects are so lucky and blessed. I really had hoped to be one of those people but alas, it is not the case.
I started out on exemestane (Aromasin) and did 2.5 years on that drug. It got so bad that I literally broke down in my MO's office and cried like a baby from pain, exhaustion, brain fog and depression. She immediately had me take 3 months off of the drugs and told me that if I decided to go back on, she would switch me to Femara (letrozole) to see if I did any better. Since I had a large amount of exemestane left, I opted to try that again and took it for another 3 months (the devil you know vs. the devil you don't kind of thing) and it started getting bad again almost right away so in January I switched to letrozole. In the first few months, it was better (not perfect) than I felt on exemestane. Then the bone pain started. This is something I did not have on the other drug. Severe joint pain, yes but bone pain? No.
I am in a lot of pain daily and take an opioid as I have to work full time since my husband is disabled and cannot work full time (he has a part time job and was finally granted disability after a long road and finally when he almost died last year they gave it to him) so without my job we would be unable to make it.
Ok, off of my soapbox. Rant over. Just needed to let out my feelings about these drugs and how they impacted my life. (and many of yours as well it appears) I just wish they could come up with something better. Even with DCIS, my MO said because I was almost 100% ER+, she wants me to do the 5 years. Ugh!
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Dear Femara friends,
I periodically contribute to this topic and realized mine is a lone voice for stepping back from any treatment approach to analyze and evaluate what might options might be best for us, the patients. When I read of women suffering the ill effects of Femara and/or other adjuvant therapies, I wonder if fear of recurrence is a greater factor than clear evaluation of treatment risks and benefits.
My close friend recently had a mastectomy for Stage IIA breast cancer. In the follow-up conversation with the oncologist, she was offered a non-steroidal AI (Femara or Arimidex) to "reduce risk of local recurrence by 50% from 20% to 10%. But then they talked overall survival stats – the drugs with all their toxicities would reduce risk of death from breast cancer from 11% to 10%. At 70 years of age, it clearly wasn't worth it for her to take the therapy.
Another friend in her mid-50s with Stage IIB lobular cancer and a disabled daughter faced only slightly better statistics, decided to try Femara and doesn't have unwanted effects, so will continue for another 4 years, then evaluate whether to continue for an additional 5 years.
I have advanced breast cancer and AIs weren't even around when the cancer recurred. Later, the cancer morphed to ER-, so I didn't need to decide whether to try Femara or Arimidex. Later still, it became ER+ again and I did try Femara to good effect. I'm now on my third time 'round with it! It seems to be holding my pleural mets at bay, even as my liver swells to huge proportions.
So, looking back, do I think I would have engaged an AI for earlier stage breast cancer? I really don't think so. The unwanted effects of my first go around were nearly intolerable and only marginally better than the effects of unrestrained lung and pleural mets. The second time, I stopped after a short while. Now, I've no unwanted effects and am grateful it seems to help in one region of my body.
Friends, I do think it worth your while to step back and evaluate your treatment goals, the relevant statistics and studies, your quality of life and to ask yourselves, "is this the right approach for me now? what other conventional and unconventional approaches can I use to ease unwanted effects? Am I letting fear of breast cancer ruin run my life?"
Why not soul search?
Below are links and quotes from my earlier posts to this forum...please consult your clinicians, consider your options and tune into what solutions work best for YOU!
Each of us is unique and our treatment choices will be too.
healing regards, Stephanie
https://community.breastcancer.org/forum/78/topics/726592?page=248#post_4601829
https://community.breastcancer.org/forum/78/topics/726592?page=250#post_4631940
https://community.breastcancer.org/forum/78/topics/726592?page=251#post_4653548
https://community.breastcancer.org/forum/78/topics/726592?page=255#post_4685347
xxx
https://community.breastcancer.org/forum/78/topics/726592?page=255#post_4686209 "What we feel and experience is so very real and important for us. Someone else's hangnail may be the biggest owie in their lives, no use comparing themselves to people to "have it worse off." It really doesn't make your pain go away! And learning to work with smaller challenges helps to develop capacities to deal with larger challenges.
My larger point was, if a medication makes me feel really crappy and I can't change that with natural approaches, I'm unlikely to continue it.
At some point, risks must be taken and maybe the risks of treatment are greater than the risks of no treatment.
This is true in the case of adjuvant treatments that minimally reduce risk of cancer recurrence, while majorly impacting QOL (quality of life).
Even at Stage IV, there are many treatments that just aren't worth it for me.
Not all of us pursue more aggressive and toxic treatments as our cancer becomes more aggressive and progresses.
xxx
https://community.breastcancer.org/forum/78/topics/726592?page=256#post_4734819
As someone living with advanced breast cancer for many years, someone who was helped by Femara for three years (2008-2011) and helped again during the past year, I totally understand why you'd want to stop.
And I support you in that.
Treatment must improve as well as possibly extend our lives.
It doesn't seem to be doing the former for you and who knows about the latter?
Breast cancer puts a spotlight on our mortality, bringing up existential anxiety and fear.
Femara doesn't dim that light, just makes us feel more in-control of our lives and deaths.
There are so many ways we can improve our odds by reducing risk factors that are within our control. Have you seen the Radical Remission thread yet? https://community.breastcancer.org/forum/79/topics....
I encourage you to accept the things you cannot change and address those you can.
If Femara isn't your friend and you can't find ways to live well together, maybe you need some distance from this not-so-helpful helper.
Not giving medical advice, just confirming your right to choose what's right for you!
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LONGTERMSURVIVOR....I could not have said it better. Excellent post! To start I support and respect all decisions made about treatment options. I just want better ones! When only 50 percent of women complete the 5 recommended years due to SEs, its just NOT good enough. Add the others that suffer and stay on it and its an even bigger number. We need to speak up. Instead of Pinktober emphasis on awareness and early detection let's put some emphasis on better treatment options!
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Longtermsurvivor, more than once I have tried to find the strength to stop AI's but my MO is always the cheerleader. She says things like "you are halfway there" or "you are protecting your other breast so the statistics are not what it is all about" She did say if I could not take it anymore I could DC it, but her voice echoes in my brain with the >99% ER+ and that I should protect my other breast and that if I have a recurrence half of the time it will be invasive. All of that scares me so I keep plodding along, trying to deal with these unrelenting side effects.
I really do have to re-think this because I am tired of feeling 20 years older than I am.
dtad, we sure do need more options...amen to that!
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as you say, longtermsurvivor, we all have ouies, for now, these drugs are what they got! Good , bad, or indifferent we all plod along till we dont want to take it anymore. At 65 i have many more uears of fight in me, ask me this at 75, you might get a different response. I pray they comre up with something. I wish they would stop poisoning the planet with chemicals, plastics, gasses etc. i am sure that our major cause of BC. Until that happens and they put the money raised from all the fundraising into real research its big business right now. I am trying the gelatin for now daily, cant say yes or no, but its worth a shot for now, can't hurt that i xan see. Praying for a cure, a real cure.
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April, are you taking Claritin (brand or generic loratidine) for your bone pain? I have joint pain and a bone spur now that I'm on letrozole, but not bone pain. When I had my Zometa infusion, I knew to expect bone pain as part of the “Faux-flu" side effect so I switched my antihistamine from Zyrtec to Claritin and as a result bone pain was the one symptom I didn't get.
Also, unlike mine, your cancer was in situ and not just small but tiny. To me, putting yourself through hell for something so tiny and nonaggressive is like using a Sherman tank to crush a cockroach. Perhaps your recurrence chancers are low enough that you needn’t compromise your QOL. Have you sought a second opinion?
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Hi, been a long time since I have been on the forums. Looks as if I may be joining this forum. I was on Tami for 2.5 yrs and my Oncologist switched me to Arimidex. With Tami I had minimal side effects but because the yr prior I had my ovaries removed he decided I should change. I wish I hadnt. I started on Arimidex in April but the side effects kept getting worse as the months progressed. Bone snd joint pain where I felt 90. MO said I should have noticed these more in April. I did but they got worse.Its like he did not believe me but he agreed to let me go off for a couple weeks to see if it was the meds. I at one point barely could get out pf the bathtub because I hurt, I think I know my own body.
I have been off since Sept 1st and scared to call in to get the rx for femara. I feel do much better. Still some stiffness but sooo much better. I am 47 and moved like a 90 yr old. I am also on Zometa for prevention. New studies say it prevents cancer from going to the bones. I had to get a dental clearance to start, that was costly as I won't be able to have major dental work while on Zometa Right now my bones are fine so I do not need it for Osteoporosis. I will have it 2 times a yr for 3 yrs. I felt like Ihad the flu starting the day after the infusion.Bones ached badly. Glad to hear Claritin will help. Sandy, how long before and after the infusion do you take it? Do they get better after several infusions? I only had one and felt rotten for 5 days or so.Does anyone take magnesium for bone aches. Right now I am scared to do treatment and scared not to do it.
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What is the reason that you cannot have any dental work while taking zometa? Is Zometa the same s Prolia ? I currently am taking Actonel.
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I have sought a second opinion and since I had another cancer (not breast) years ago, so both doctors feel that I am at higher risk for another one. Not so much the recurrence worry but more "another" primary. I also felt that since I had a small DCIS that an AI was overkill initially, especially since I had rads, but there was some debate on the size of my cancer because I entered a clinical trial to shrink it before I had my lumpectomy. Initially, after my stereo-tactic biopsy, I was told it was 2-3cm and then I joined the trial and took black cohosh for 3 weeks (MY MO was the lead investigator on this clinical trial) and when surgery was performed it turned out to be just under a cm in size although I had to have a second surgery due to an "on the line" margin of less than a mm. So, I was given very conflicting messages about my DCIS. All I know is I wanted to do any and everything to prevent not only a recurrence but a new BC that could very well be IDC this time out.
Will I make 5 years? Not sure. I have been at them for almost 3.5 sans the 90 day break. So, I keep telling myself that there is only 18-21 months left after December. Who knows? As for Claritin, I cannot function at work on this drug. I took it for allergies (even the non-drowsy formula) and it messed with me big time. I don't do well with most medicines, over the counter or otherwise and rarely took an aspirin for most of my life (except for the occasional hangover in my youth..lol) so this is all very new to me. I have osteo-arthritis already but the bone pain is throwing me big time. That and the way I feel in general...sort of like I am always fighting the flu.
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ndgrrl---I also had a hysterectomy and BSO almost 2 years ago but I am still on Tamoxifen. Last year at my annual MO exam, he asked if I wanted to swap to an AI. I told him that I'd rather not right now since I do so well on Tamoxifen and he was totally fine with it. I saw him last week for my annual and we discussed swapping to an AI at great length. He said the studies that show a small reduction in your risk of recurrence really skewed more towards the ILC ladies. He said when you have a small tumor with no node involvement and low oncotype score, he considers that low risk and doesn't feel an AI improves your odds that much. He is going to do the Breast Cancer Index test at my next appointment when I will be at almost 5 years. Depending on those results, which show your risk of recurrence for years 5-10, we will then decide if I should swap. He said if those results are low enough, he may even pull me off Tamoxifen! (Not sure I'm ready for that. I do pretty good on it so we'll see!) You don't have to take an AI just because you're post menopausal. You can easily stay on Tamoxifen if that's what works for you. It's much better to take something that might have a 1-2% difference in risk reduction than ending up not taking anything because the SEs are unbearable. Of course, another option is a different AI because they all have different SEs. Anyway, just thought I'd throw in my 2cents worth. My MO is one of the top researchers in BC so I trust that he's pretty up to date on these things.
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lala, tamoxifen was contra-indicated for me due to family history of aneurysm, blood clots and strokes. The AI that was prescribed to me first was exemestane. At first, I was fine and then it got bad...really bad so 2.5 years later, I started taking letrozole. The AI does not improve my odds of recurrence all that much but what my MO feels is important is the protection from another primary BC. I am >99% ER+ which is why she wanted me to take the drug. So take it I will until I decide along with my MO not to or my 5 years is up...whatever comes first!
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Hi, my mo told me Zometa can cause jW problems and healing from major dental work is a problem. My sister also a breast cancer survivor has a drug she uses similar to Zometa and she had to wait 3 months after stopping it to fix one of her teeth. Hers is an injection. Lala what was your Onco score? mine was 18 with a crazy amount of cancer in the family. I sm waiting on results of genetic testing. I sm Braca negative but we are testing further.
What bothers me is when the MO will say it isn't the meds because se should have came earlier. Ummm ok, well then why I suddenly hurt so bad and it was getting worse. But that MO has moved on to the mayo clinic so a np is in charge of starting a new drug once I call her. I see a new MO in Nov. I am 100 percent ER positive so I should take something. I also stopped Effexor. I was on the lowest dose for hot flashes. Not easy to get off of. I am a walking grump . Lo
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MO's seem to be famous for their denial of SE's when it comes to cancer tx. It's very frustrating!! I have my routine check with MO on 10/26 and I'd like to discuss the pain problems I'm having, but at the same time I don't want to start changing meds again. But, I'm tired of being tired and achy. Just this weekend I wanted to go out shopping with with my family and I was exhausted afterward and could barely walk. I had to sit down when we got home and not move for awhile. This is NOT normal!
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ndgrrl---My Oncotype score was 15 so no chemo or rads for me, thank god. I'm sure that contributes to a lot of the SEs that Tamoxifen has. My MO told me one time that he feels Tamoxifen exacerbates any issues you already have so something that may not normally be much of a problem, can become a big pain on it. My biggest issue is joint/muscle pain which started at about 2 or 3 months but once I got on turmeric and ginger, it's quite manageable. My MO is awesome! He listens and offers advice and is open to things I come up with. I've always felt that if a doctor doesn't treat you well, then find another. We pay them so they work for us. I love every one of mine but I picked them specifically to work with my type of personality. I've had to move on from a couple but for the most part, they do listen to me which I what I really want.
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I haven't been on this thread for a while, but wanted to update what has been happening with me.
I started on Arimidex six years ago, and wasn't on it for very long (about 8 months I think) before the ses got too much to be able to deal with. I switched to Aromasin and it treated me very well for around three years. Then I started to get thunderclap headaches and waking hallucinations (quite scary). I switched to Femara, and was ok for about a month, then the thunderclap headaches and waking hallucinations returned. I didn't really wan't to go on Tami, and my onc didn't either, so I stayed with Femara but only taking half a tablet a day. I now don't have the bad ses, I do have stiffness (but that started before taking Femara - most of it was caused by Arimidex and getting older lol).
In November last year I developed a new primary in my remaining breast, this tumour was triple negative, so at least I know the Femara is working on keeping the E at bay. My first bc was lobular that was almost 100% er+ and the IDC was triple + so I'm apparently a bit special having the TN this time.
I did almost six months of horrendous chemo, and am now five months out from it. I did notice before the second dx that my hair was thinning. It's now growing back, and is long enough and thick enough now that I don't look like a cancer patient.
I'll be on Femara for at least another five years, and I'm hoping it continues to treat me gently - all be it on half a dose daily.
For those of you suffering severe ses, it might be worth exploring whether half a tablet will suffice.
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