FEMARA
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Thank you!
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I’d heard horror stories about the side effects of generic versions of letrozole, so my MO unsuccessfully tried to get prior auth for brand-name Femara on Humana Enhanced Medicare Part D. DH (a cardiologist/geriatrician) says his patients routinely do well on Teva generics across the board. The only in-network pharmacy willing to order Teva is an indie neighborhood one (with a kosher deli up front). All the chains (Costco, CVS, Walgreen’s, Sam’s, Wal-Mart) and mail-order (OptumRX, Humana) said “we’ll sell you whatever our distributor can get most cheaply.” So Dh wrote a scrip for Novartis Femara which he faxed to CanadaDrugs.com (a favorite of his patients). I was able to get Novartis UK Femara for less than $200/mo. (Here in the States it’s $700-$900). But my pharmacy-deli was able to get me Roxane and Teva for $9/mo. Apparently, side effects are commensurate with inactive ingredients (binders, excipients, preservatives, dyes & pigments) to which many people are sensitized, intolerant or allergic. I’ve found Roxane the easiest to take, followed by Femara and then Teva.
Caveat: in the US, generic versions must contain at least 75% as much of the active ingredient as the original patented brand. Could be that Femara works better at lowering estrogen because generics are allowed to have up to 25% less letrozole.
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I've been on Letrozole for over 2 years....no hot flashes for me. However, I take 400mg of magnesium every night...I think that may help.
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rpoole - my prescription plan through Express Scripts pays for the brand name Femara without cost to me, but your plan may be different. My MO had to request it specifically.
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Grandma3x, thanks! I am going to ask my MO to give it a try!!
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Does anyone take a supplement to help with the fatigue, some days I can hardly get off the sofa. The rain makes my knees and hips hurt took bad to walk. Thanks Marilyn
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I just got my letrozole refilled and it cost me $78 and that's with insurance. I have to fulfill $2700 deductible before my insurance kicks in.
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it is disgusting to me that in this day and age people with life threatening diseases have to pay for medication at all. Shame on society. Shame on our governments. Meh!
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ThninkingPositive....sorry you have to pay so much....that's ridiculous.
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I just realized something wonderful! Records show that I started exemestane in October 2015 and switched to Femara in October 2016. That means I've been on AIs for 1-1/2 years! Hard to believe. I've been in such a funk lately about Femara SEs without realizing how far I've come. Maybe I can force myself to take my pill today. Cymbalta is helping a little and I've been thinking about asking my doc to prescribe physical therapy for muscle and joint pain. Three-and-one-half years more of treatment and lots of living to do in the meanwhile.
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Here is a price analysis from drugs.com. Context is everything for drug prices. I have a high deductible plan so I pay 100% of the insurance company negotiated rate until my deductible is met. I am paying $12 for 30 pills.
This letrozole price guide is based on using the Drugs.com discount card which is accepted at most U.S. pharmacies. The cost for letrozole oral tablet 2.5 mg is around $14 for a supply of 30 tablets, depending on the pharmacy you visit. Prices are for cash paying customers only and are not valid with insurance plans.
>Z<
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I have Medicare part D. I pay $12 a mo for Letro. What the hell. It's listed as a tier 1 drug too.
Here's the kicker. I've had MC since 1/1/17. I got the first bottle of Letro Feb 9. It was processed under BC instead of MC pt D at this $12.34 a month. But MC did cover my generic ambien and busparone in Jan as it shows up on their claims. Can't figure out how this happened.
Also, my ps claims went to MC for my sx on 12/9/16 and of course denied.
I notified BC of dropping them and on MC back in Sept when I was automatically placed on MC. I got a letter yesterday from BC acknowleging I'm not with them eff 1/1/17. Kept it just in case..
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zorovka... You stated "The way I understand it, the estrogen receptors eventually learn to trigger cell growth in the absence of estrogen. So we wait for that to happen and THEN knock out the estrogen receptor. Then the cells have to learn to grow without receptors. You get more time if you force the cells to take two steps". Does that mean that those of us taking AI's to reduce estrogen will have the receptors eventually trigger cell growth ??? To mean that means its inevitable... I have always questioned and never got an answer... I am 2 years since my last chemo treatment. I think I worry more now than before and afraid I am going to continue to worry more as I get further out.. I also worry because I read that so many of you had scans when diagnosed. I was told it wasn't standard of care unless I had symptoms. And that the cells would be too small at that time to be detected.. So what is the proper protocol.... ??
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Thinking positive - If you are early stage, they have made every effort to eliminate the cancer from your body with chemo and surgery and most of the time it works. The aromatase inhibitors are an extra layer of protection that creates an environment where it is difficult for cancer to grow. Looking at your history, you've had very good treatment and metastatic cancer is highly unlikely.
I am stage IV. I think I was responding to someone who was metastatic. Once you are stage IV, the majority of patients will progress on aromatase inhibitors. However, what I said is relevant in the metastatic setting only.
It is unlikely that you have metastasis, but if it worries you not to have a CT scan, demand one. It does happen that people are misdiagnosed as early stage because no one did scans. Waiting for symptoms? I find that supremely dumb. Are they waiting for a tumor to pop out of your neck? Very few people with early metastatic cancer have symptoms from the cancer. With cancer, you learn to follow your instincts and worry is not always without reason.
And while you should respect your worry, you also shouldn't worry too much. Stage IV MBC is getting manageable. Not fast enough, but it is getting there. And it's definitely easier to deal with the sooner you find it.
>Z<
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Just read an article in the Journal of Clinical Oncology analyzing three studies about how long to continue AI therapy (most of which patients started on Tamoxifen before switching to an AI—one study concerned anastrozole, the other letrozole). Two studies suggested that regardless of how long one’s initial phase of Tam was, 5 yrs. of an AI (total 7.5 yrs of hormonal therapy) was necessary. Another concluded that if one started with 2.5 yrs of Tam, 2.5 years on AI was sufficient, for a total of 5 yrs hormonal therapy. The studies showed DFS and OS were about the same for both protocols, but that patients who took an AI for 5 yrs, regardless of how long they first took Tam, showed a lower rate of mets.
None of the studies discussed addressed whether patients whose only hormonal therapy was 5 yrs. of AI should continue on it. The author posited that because of the possibility of genes mutating after a longer period of drug-induced estrogen deprivation, resulting in either AI resistance or ER+ cells evolving to synthesize estrogen from cholesterol, AI therapy should be stopped after 5 yrs. except for those patients at high risk of recurrence. Comorbidities and QOL issues that increase with age and are exacerbated by the accelerated aging produced by AIs were cited as a factor for ending AI therapy at the 5-year mark for low-risk patients.
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ChiSandy would you be able to share the link to that article? Want to take a look before I see the MO on Mar 13. Thanks!0
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zarovka. Thank you for the info and clarifying!!
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When you read those studies that Sandy summarized, be sure to look closely at the survival benefit. As I recall it is very low. If hormone suppression limits your ability to live well, exercise, etc. There is a strong argument that it does more harm than good as a preventative strategy when the side effects are tough.
>Z<
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I am 33 and had my ovaries removed a year ago. I've been on Femara for 9 months. Last 2 months I have pain somewhere in my right hip bone/joints, left knee and sometimes right knee (usually, I sit cross-legged)
Might it be a Femara side effect? I had scintigraphy 4 months ago and it showed degenerative changes in the hip joints. Knees were OK. I am afraid it might be bone mets :-(
I had a check up a month ago - calcium was 10.2 and ALP 89. Both in normal ranges, I think. My MO said I am perfectly fine, but I am afraid of this pain, which recently has increased (only when I move)
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Letrozol is notorious for joint and muscle pain. I get some relief from horse doses (2000mg per day) of liposomally encapsulated curcumin and a teaspon of AmylaPlex a day. Worth a try. Things are improved to the point where I can run. Still some pain, but I used to have a hard time even walking.
If you would add your treatment and diagnostic history to your profile AND make it public in the settings area (see menu on left), it helps us understand the context for your question. Context is everything with cancer.
>Z<
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Actually, I do not need pain relief medication. The pain is quite bearable. I can feel it only when I move in certain positions.
If it's letrozole, is it normal that these SEs started about 5-6 months being on Femara?
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My joint and muscle pain started after several months on letrozol.
>Z<
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It can take several months for an AI to lower estrogen to the point where symptoms of estrogen-deficiency can be felt. And “degenerative” joint changes can indicate osteopenia, osteoporosis, or osteoarthritis—all of which can be SEs of AIs.
Here’s the url to the article (which I read on my phone during intermission at the opera the other night):
http://www.clinicaloncology.com/Vogl-NY/Article/02...=ogst?enl=true
It was in Clinical Oncology News, not the JCO. My bad. Remember, the recommendation to d.c. AI after 5 yrs. in low-risk patients was the conclusion Vogl (the author) drew from the studies, and other MOs might disagree.
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Hi all. I have been a lurker. First of all I am so glad I am in Canada...the American drug system sounds so confusing.
I lost all my hair...ALL!!. by my second chemo treatment. I finished chemo the end of Jun 2016 and since have had radiation ,started on letrozole the end of Aug. 2016 and had another mastectomy in October.
I am on letrozole by Apotex I was doing fine until into January. I started getting a painful right thumb...family doctor diagnosed it as de Quervain's and it has gotten worse. I also got trigger finger in my left hand...both of which I now say are because of the letrozole. Today my friend had a splint for her right hand and brought it over for me to try. It is amazing. Next week when I see my family doctor I am going to ask for a script for one. I hope the splint will continue to help because ibuprofen doesn't seem to help much.
My hair growth has been slow. I have used coconut oil and rosemary essential oil and I believe that has helped my hair growth. Now that I have read about the hair loss due to letrozole I think I will continue on doing this
I live in SW Ontario and am involved in a study that relates your DNA to the best hormone therapy to lessen side effects. They are mostly looking at pain I think. Even though it is early in the study they have told me that they are seeing a strong relationship...The plan is that they will test DNA and start you on what would be the best according to your DNA...thus eliminating the trial and error method that is currently being done. However I am finding it interesting on the different SE's of letrozole between different companies. I am going to mention this to them.
I have found this forum so very interesting and helpful. Thank you all for your input. I hope everyone can find the best treatment for themselves
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Have had no scans. My MO at Hopkins said they are only ordered when you are symptomatic. She feels the amount of time from when you get mets and have symptoms doesn't give you a significant enough jump start on more treatment to out weigh the negative effect of more radiation from tests. I don't know if there is data on mortality %s for those who have or have not had scans and got mets.
Is this just a cop out to save money? Or are they trying to protect us from excessive rads? Who knows. I don't know if I should demand tests or just watch and wait hoping the shoe doesn't drop. Every new ache I get I wonder. My eyebrow itches and I think. Could this be eyebrow cancer?
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I don't think you need scans every 3 months like an active stage IV patient. The radiation is an issue. But I can't get my mind around the "wait until you have symptoms" plan either. A scan every year or two to reduce your anxiety seems a reasonable ask.
>Z<
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one other question, why does it seem like wherever I read it states that chemo only reduces risk a few percentage points?? Why is that??
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Basically, if you have early stage MBC and you have surgery and radiation you have eliminated most of the risk of recurrence. If you do nothing, it is unlikely to return. And yet sometimes it does and the consequences are serious.
They have a way to reduce the risk of recurrence a few percentage points with chemo, so they recommend it. After chemo, they recommend letrozol to lower the risk a a few more percentage points.
If it was simple wave of the wand to reduce the risk of recurrence, this logic would make a lot of sense. However both adjuvant chemo and letrozol have side effects that effect your overall health. Chemo radically reduces the amount women exercise (because they feel like crap) and regular moderate exercise has a far greater effect on survival than chemo. Letrozol has the same issue. You get joint pain, you don't move and you've pretty much wiped out the statistical benefit of letrozol on outcomes, IMO.
Doctors underestimate side effects because the drug companies minimize them and the doctors don't take the drugs. I love oncologists, I love pharmaceuticals but I am surprised that so many women look at these odds and choose chemo and letrozol. I think they don't actually ask about the statistics, they just listen to their doctors. The doctors play it safe so they don't get blamed later for not doing everything they could to prevent recurrence.
As we learn to manage stage IV MBC, we will see fewer women in stage I/II/III doing chemo and letrozol. The value of a small decrease in the rate of recurrence will evaporate entirely as the consequences are not so bad. Hoping that will be soon.
>Z<
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I feel exactly like a crap. And all began few months after finishing my treatment, removing ovaries and starting femara. First I had an awful pain in my neck and back of the head. I thought I had something in my spine there and my MO ordered the bone scan. Then it came back normal and I stopped paying attention to the pain and it just disappeared. But it turned out that I have degenerative changes in my hip joints. I am only 33, I do not know how it happened - maybe because of my profession and lack of sport activities?!? (I am an IT specialist and I've been sitting in front of the PC 8 hours a day for more than 10 years).
I have DEXA scan in 2 months. Will it show the degenerative changes? I am so afraid that these changes might turn out to be mets. It's not a normal life. Every new day I am going crazy and crazier
I've decided to have acupuncture . I hope it will help me to reduce the stress and pain.
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Hello all,
I follow this thread mostly as a lurker but wanted to take this opportunity to thank you all for your information and advice.
Now I can actually add to the discussion by saying that the initial studies about how proactive follow up (scans, blood markers) had no effect on OS were made in Italy, where I live, and nearly 20 years ago at this point. Science has moved on! But it just takes that long for info to filter down into practice that many MOs are still quoting studies that were done before they may even have become a doctor.
All that said, Chloesmom, I agree with Zarovka that an annual (or so) scan is a good idea. My Italian MO has me on 3/4 month checkups that include abdominal sonograms, blood work and a physical check up. I get an annual CT with contrast and a mammogram on remaining breast + a sonogram on remaining breast and entire chest wall and underarms. If anything looks suspicious, they call me back in, as happened recently for a 2nd breast sonogram. And I have my family doctor order a breast MR (this is not part of the protocol).
Of course, all of that may be useless, since my bi-annual mammos certainly never caught my very advanced ILC! a common story. Also, the protocol is a little lighter for less advanced cases - biannual or even annual instead of 3/4 times a year.
I hope that helps you push for what you think you might need for your own peace of mind.
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