Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

FEMARA

1295296298300301353

Comments

  • marijen
    marijen Member Posts: 2,181

    WEDNESDAY, Aug. 23, 2017 (HealthDay News) -- An inexpensive over-the-counter antioxidant/zinc supplement that may help preserve vision in older people is also cost effective, a new study suggests.

    The combo pill has been dubbed the "Age-Related Eye Disease Study (AREDS)" supplement, based on trial in which it was studied previously.

    Dr. Aaron Lee, a researcher on the new trial, said his team found AREDS was "greatly cost-effective for the treatment of age-related macular degeneration, specifically in people who have active wet, age-related macular degeneration in one eye and dry in the other." Lee is assistant professor of ophthalmology at the University of Washington in Seattle.

    Macular degeneration is a progressive disease that's a major cause of vision loss in older Americans.

    The new study suggests the AREDS supplement may delay the need for more expensive treatment of the "wet" form of the illness, especially, Lee said.

    Exactly how the supplements work to slow progression of the eye malady isn't known, he added, but "the current formulation of the supplementscontain antioxidants that are thought to be protective of the retina from damage that results in wet age-related macular degeneration."

    Still, at least one U.S. eye expert challenged the idea that the AREDS supplement definitively showed a benefit in preventing the disease or its progression.

    "Despite this being routine practice among many retinal specialists in the U.S., the benefits remain uncertain," said Dr. Alfred Sommer, professor of ophthalmology at Johns Hopkins University School of Medicine in Baltimore.

    According to the American Macular Degeneration Foundation (AMDF), age-related macular degeneration causes damage to the macula, a small spot near the center of the retina. It's the part of the eye needed for sharp, central vision. Over time, vision can become blurry, and eventually patients can lose their eyesight.

    The two basic types of macular degeneration are called wet and dry. About 10 percent to 15 percent of the cases of macular degeneration are the wet type.

    In wet macular degeneration, blood vessels grow under the retina and macula. These new vessels may bleed and leak fluid, causing the macula to bulge or lift up from its normally flat position, thus distorting or destroying central vision. Vision loss may be rapid and severe.

    Approximately 85 percent to 90 percent of the cases of macular degeneration are the dry type. Dry age-related macular degeneration does not involve any leakage of blood. Instead, the macula may deteriorate and waste products from cells in the eye can build up. Loss of vision can occur, according to the AMDF.

    The prior AREDS trial showed that the supplements, which combine antioxidant vitamins with zinc and copper, are inexpensive and effective in slowing the progression of age-related macular degeneration.

    AREDS supplements are sold under brand names such as PreserVision and Pro-Optic. Costs range from about $25 to $40 for 120 pills -- a two-month supply.

    That's a much lower price tag than expensive prescription drugs called anti-VEGF therapies, which are currently used to treat wet macular degeneration. Plus, anti-VEGF drug therapy involves getting a needle in the eye, and the drugs can also have side effects. One possible side effect is an increased risk of inflammation of the inside of the eye, and another possibility is stroke, Lee noted.

    So, to calculate the cost-effectiveness of AREDS supplements, Lee and colleagues looked at the use of the supplements in people over 55 years of age.

    The AREDS trial had concluded that a daily supplement combining high-dose antioxidants and zinc lowered the risk of developing wet age-related macular degeneration and slowed its progression.

    Lee's team looked at two formulas of available supplements.

    Formula 1 has high doses of vitamins C and E, beta carotene, zinc and copper. Formula 2 has lutein and zeaxanthin instead of beta carotene.

    The researchers used a statistical model with information from the AREDS trial, along with data from more than 90,000 people with macular degeneration in the United Kingdom.

    The investigators found that both formulations were cost effective for treating patients with early stage disease, but they were even more cost effective for those with the condition in only one eye.

    Over the course of a lifetime, the researchers found that these patients would need nearly eight fewer injections of anti-VEGF therapies into their eye, Lee said.

    That could lead to thousands of dollars in savings per patient over time, the British team concluded.

    But Sommer, who reviewed the new findings, did have some caveats.

    Sommer noted that "it is now, in fact, common practice for ophthalmologists in the U.S. to recommend that their patients who fit this profile take this supplement."

    He added, "If one believes the supplement does work in the group in which it appeared to, then the whole issue is cost, since no evidence has ever been reported that shows harm."

    But does AREDSactually work?

    According to Sommer, no large-scale study has been done to test that out. And the AREDS trial researchers used to tout these supplements was small, so that any positive results might still be a chance occurrence, he noted.

    Sommer's conclusion: "Despite this being routine practice among many retinal specialists in the U.S., the benefits remain uncertain."

    Therefore, "any analysis of the cost for the benefits are somewhat meaningless when viewed from this perspective," he said.

    The study was published Aug. 23 in the British Journal of Ophthalmology.

  • tangandchris
    tangandchris Member Posts: 934

    I'm not sure where to post this question, so here goes. I have not taken Femera since FEB, actually even before that it was hit or miss because of s/e's. I finally threw in towel and stopped and my MO has no idea. I go back in October and wonder what the reaction will be from my doctors when they find out. Will scans be requested you think? Idk, I'm just thinking about stuff and thought I'd throw it out here.

  • marijen
    marijen Member Posts: 2,181

    Hey tang, if it were me, since it's just about six months I would either email or call her with the when and why and/or reschedule the appointment for earlier rather than sit on it. How often were you getting scans before? Every six months or year. There might be something she would want to do. I wouldn't feel guilty, a lot of women quit AIs because of the sides. Is there something you want her to do? Like a pet scan to look for hot spots? Mine does that along with a CT. Just throwing it out there for you. The truth is the best, you couldn't face staying on it

  • ndgrrl
    ndgrrl Member Posts: 645

    hi, I am curious on what a CTC test is testing? Thanks

  • tangandchris
    tangandchris Member Posts: 934

    October is the soonest since that is when my insurance will kick in from my new job. I suppose I could call ahead and tell them. I didnt get scans regularly, only if symptomatic. So I'm wondering if they will want something done. I guess its just a wait and see.

  • marijen
    marijen Member Posts: 2,181

    I don't think there is much you can do ahead of time until insurance kicks in but if it's the same MO then you can call ahead and leave a message. Sorry I can't imagine what she can do ahead of time. Do you take melatonin, eat right and exercise? October is only a few weeks away. It'll be good news if nothing new when you do get tested, good for all of us. I sure hope so, because I stopped a month ago

  • Bliss58
    Bliss58 Member Posts: 938

    Ndgrrl, a Circulating Tumor Cell (CTC) test is a blood test that helps MOs assess the prognosis of patients with MBC. Some studies found that five or more CTCs in 7.5 ml of blood suggests a worse prognosis and fewer than five CTCs suggests a better prognosis.

  • chisandy
    chisandy Member Posts: 11,408

    The reason older women are likelier than younger ones to get ER+ bc is a longer exposure to estrogen over the course of a lifetime. By 60, we’ve had estrogen coursing through our systems from puberty onward—especially if early menarche & late menopause, having taken the Pill or had estrogen therapy, with few or no pregnancies or breastfeeding. Over age 60, we’re also likelier to have a higher % of body fat, especially in the midsection which cells contain white fat (which produces the androgens that aromatase helps convert to estrogens) rather than beneficial brown fat which has a salutary effect on insulin response and fat-burning. And younger women are more vigorous with faster metabolisms, with the downside being that that vigor makes more aggressive forms of bc (triple-negative, triple positive. hormone-receptpr-negative/HER2+) more common.

  • marijen
    marijen Member Posts: 2,181

    So the longer we live the more chances we get to win the booby prize

  • dtad
    dtad Member Posts: 771

    marijen...please don't feel guilty. Its your body. We should not have to choose between recurrence and poor QOL. We need to speak up for better treatment options! My MO at a major university teaching hospital told me only 50 percent of us can complete the 5 recommended years due to SEs. This is just not ego enough! Docs should be working with us for a solution. Good luck everyone.

  • tangandchris
    tangandchris Member Posts: 934

    I'm open to another AI, but I don't have alot of hope that it will be much better. I was on Tamoxifen first and I struggled with serious depression and anxiety. I couldnt handle it...so I switched MO's and new one suggested hysterectomy and AI. Thats what I did and the Femera has been awful in a painful way.

    I've done the best I could but it just seems like one set back after another. Honestly when I lost my job in Feb and then my insurance I really gave up. I'm picking myself up now but its been hard. Just so thankful I'm going to have insurance soon.

  • marijen
    marijen Member Posts: 2,181

    Tang, I'm wondering how old you are and why you had a hysterectomy if there was nothing wrong with that part. Why not just ovary removal? And the doctor didn't check your estrogen levels before all was removed? Well without more information it sounds strange to me. This is the MO you will see in Oct? Good for you pulling yourself out of severe depression. You did that on your own? Not an easy thing to DIY.

  • 2ndGenBCA
    2ndGenBCA Member Posts: 28

    TangandChris,

    I tried 3 different versions of AI's and they were ALL like poison. The SE's were so debilitating that I finally said "no more!" (too many problems to list here - I've told the group about them before) After about 5 months of being off of them, I still struggle with painful SE's. I changed MO's and now I'm being encouraged to go on Tamoxifen. Not going to happen.

    I don't know if this is appropriate, but I would be willing to send you the Arimidex (name brand) if you (or you and your doctor) want to give it a try. (you are in the U.S., right?) It's just sitting in my cabinet and I'd much rather have it help you if you would like. 

    Please send me a private message if this is something you are interested in. I also understand if you decline - as you don't know me personally.

    Hugs to you - I know this isn't easy. I've never been a quitter - but this time, I quit. So don't beat yourself up over whatever choice you make. We have enough crap to deal with! I have found this group very helpful and encouraging - ultimately, the choice is yours. :)

  • KBeee
    KBeee Member Posts: 695

    If you can message MO before your appointment, that would be a good idea, so he/she is aware and can help you make the best decisions moving forward. They may suggest a different AI or something else to address side effects, or perhaps there are other suggestions. I doubt they will do a scan without symptoms because to do so would encourage women who want scans to stop their meds. You never know though; all MOs are different. I am glad your insurance wil kick in soon. Hoping that you're feeling better without all of the side effects, and that your MO has a plan to keepyou feeling good

  • tangandchris
    tangandchris Member Posts: 934

    Thx everyone 😊

    Im 43, 39 at dx and my current MO never talked about suppression just right into surgery. I never knew there was another option until coming here and seeing others discuss it.

    I am willing to try another AI. I know some might not understand my choices or agree with them but I did the best with what I was dealt.


  • marijen
    marijen Member Posts: 2,181

    Tang there is a new study that says restarting AI improves efficacy, so you may be better off having beenoff it for a while. I don't think I can post it because of permissions. To be pub. Oct 1. I think.

    Here is the conclusion:

    Conclusions: Our study provides—for the first time to our knowledge—evidence that restarting adjuvant hormone therapy is associated with better breast cancer outcomes. Clinicians now have further evidence to encourage patients to restart their treatment after discontinuation of adjuvant hormone therapy.

  • KBeee
    KBeee Member Posts: 695

    Hoping you can find something that works without such horrible side effects. These meds affect everyone differently, and quality of life matters.

  • 6cats
    6cats Member Posts: 199

    I've been on letrozole since April. I think I'm having SEs but not sure. So scattered... easily distracted, forgetful, moving slow... not depressed, but irritable. My PCP has me off migraine meds so they are worse too. Oh yes, weight gain too.

    Your thoughts?

  • chisandy
    chisandy Member Posts: 11,408

    I live with it. (Until the day comes when I can’t). One day at a time. Marijen, I nearly did a spit take when I read “booby prize.” Good one. (As the Elvis Costello song goes, “I was pumping iron while you were pumping irony”). But yes—the longer and greater our cumulative exposure to estrogen, the higher the odds of developing ER+ bc.

  • margochanning
    margochanning Member Posts: 70

    Posting something here (and probably other threads) I just found today while randomly googling estrogen phrases; while this may not be developed in time to help any of us, it is reassuring to know that some scientists are working to find ways to deliver estrogen to specific body parts - in this case, the brain - while leaving the rest of the body alone. This would obviously alleviate hot flashes, memory problems, sleep issues, depression - could be a game changer for people on AI's as well as anyone suffering through menopause in general. Here's the article: http://www.sciencemag.org/news/2015/07/safer-estro...

    And here's the abstract: http://stm.sciencemag.org/content/7/297/297ra113?i...

  • marijen
    marijen Member Posts: 2,181

    So they are admitting AI is bad for us. That's good, it's a start.


  • marijen
    marijen Member Posts: 2,181

    I'm sure it's the Femara/letrozole. Sometimes I just can't think. So did you quit? I thought I saw you say you quit somewhere? You say Frightening? Did you see that BCO is going to take the Fright out of BC on Halloween? New topic.

  • marijen
    marijen Member Posts: 2,181

    From what I've heard, reconstruction is not all it's hyped up to be. But it is nice to have a place to figure it all out

  • marijen
    marijen Member Posts: 2,181

    You know my problems started getting worse end of May, after approx two years on letrozole

  • dtad
    dtad Member Posts: 771

    Wow! I would actually consider taking an aromatase inhibitor if this ever comes into fruition...

  • dtad
    dtad Member Posts: 771

    Bosomblues...radical mastectomies and no reconstruction is more than 25 years old! My dear cousin was diagnosed when she was 28 and died when she was 38. That was over 25 years ago. She had a modified mastectomy, radiation and reconstruction. She even had her nipples done. She also took Tamoxifen. IMO not a whole lot different than now. I would love to see some better treatment options, prevention and yes maybe even a cure!

  • dtad
    dtad Member Posts: 771

    Bosomblues...radical mastectomies and no reconstruction is more than 25 years old! My dear cousin was diagnosed when she was 28 and died when she was 38. That was over 25 years ago. She had a modified mastectomy, radiation and reconstruction. She even had her nipples done. She also took Tamoxifen. IMO not a whole lot different than now. I would love to see some better treatment options, prevention and yes maybe even a cure! Too many people still lose their QOL and die from this disease :(

  • margochanning
    margochanning Member Posts: 70

    I'm closing in on my fifth year of AI's and I can definitely say my days of brain fog have increased markedly in the last 2 years, making my job particularly difficult. I get headaches from trying to concentrate and remember things at work. Even writing things down doesn't help because I will look at something I wrote and can't remember the context of what I was writing about. It's getting really bad. My current MO offers no help when I tell him I need to keep working for financial security and additional years on AI's would make that extremely difficult if not impossible. Not to mention the fatigue from chronic sleep problems (I take melatonin and occasional low dose Ativan but have to be careful about hangover/grogginess the next day if I'm working). I think my brain is running out of gas.

  • marijen
    marijen Member Posts: 2,181

    Margo it sounds like it's time to take a break from letrozole. Have you been to the Aromatase Inhibitors and Walking Away topic? I would look into getting a new MO that is more understanding and knowledgeable as well. JMO. Like you said you cannot afford to lose your job over this and you've done nearly five years. You can always go back on letrozole after a break. See what the difference is