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FEMARA

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  • ali68
    ali68 Member Posts: 644

    Hi ladies, thanks to all! Just spoke with breast nurse chasing my blood result which they have had for two weeks. Was told to continue with Tamoxifen and onco will write to me with results in a week. If I'm post menopausal there is no point taking Tamoxifen.


  • lala1
    lala1 Member Posts: 974

    Ali68--Tamoxifen works for both pre and post menopausal women. It reduces your risk of recurrence by 40-50%. If you are post menopausal you have the option to swap to an AI which gives you a little better odds. But you can take either one.

  • ali68
    ali68 Member Posts: 644

    hi

    Hi how are you? My onco said Tamoxifen was not worth taking post men! It was only for your ovaries so I had to change. Also there was a high risk of another Cancer.

  • lala1
    lala1 Member Posts: 974

    ali68---Tamoxifen does increase your risk of endometrial cancer from an average of 1% to about a 2% chance. But it works every bit as well on post meno women as it does pre meno women. AIs just work a little better for post meno women. There are alot of women who take Tamoxifen after going through menopause because the side effects are sometimes a little less than an AI. I had a hysterectomy a year and a half ago. They took everything including my ovaries. My MO and breast surgeon both are telling me to stay on Tamoxifen for now because I do so well on it. They said the joint and muscle pain can be pretty bad on the AIs. And they want me to keep my good bones as long as possible. Probably in the next year or so I'll swap to an AI, so for now I'm researching the boards to try to get an idea which AI I will try, at least to start with.


  • ali68
    ali68 Member Posts: 644

    so I've been reading 5 yrs or 10 yrs of Tamoxifen! Yes it does help but not a lot ! Also what is classed as "Early stage breast cancer" is stage 3 grade 3 breast cancer with 10 cancerous nodes classed as that! It's so hard ! Xx

  • ali68
    ali68 Member Posts: 644

    Just thought ! If I was only 5% ER+ and the rest was all negative should I take it.

  • lala1
    lala1 Member Posts: 974

    ali68--- Being 5% estrogen positive may be why he feels Tamoxifen won't be much benefit but I would think it would work the same with an AI. Both of those meds work on the estrogen in your body. However, keep in mind that your body produces estrogen even without working ovaries. Body fat is a big contributor. So if you're worried about ANY estrogen in your body, keeping weight around average and taking Tamoxifen or an AI would be beneficial. And I would imagine you would be one of the women who'd only take it for 5 years since your ER numbers are so small. Also, not sure what qualifies as early stage BC. If I remember correctly, if it hasn't metastasized, it is still early stage, even with positive nodes.

  • ali68
    ali68 Member Posts: 644

    s

    So my five yrs is up next June but onco wants me to change now. When I know the results of blood test I can make my mind up. I don't see why I should take these drugs for another five yrs ! So ten in total.

  • faith-840
    faith-840 Member Posts: 926

    Ali68, you have to be the one along with your doctor to decide if you want to take another 5yeara of an AI but I will tell you my experience. When I was 50 yrs old, My BC was about the same stage as yours and I had a similar chemo with 5 yrs. of tamoxifen 25 years ago and that was the standard treatment. Now 25 yrs. later I have a metastasis to one of my lungs with some lymph node involvement. My doctor says it is very treatable but not curable and there are new treatments coming all the time. I am now on IBRANCE with femara and responding well. I don't tell you this to scare you but to give you another perspective. I honestly can't say I would have chosen another 5years of an AI with all the side effects but probably, knowing what I know now I would have. It's a tough decision, good luck.

    Faith (in the future

  • marijen
    marijen Member Posts: 2,181

    All you have to do is search Femara vs. Tamoxifen and everywhere it says Femara works better. Tamoxifen does not work every bit as well.

  • ali68
    ali68 Member Posts: 644

    Faith! Thanks so much for that I hope you are doing well. Have been reading about Femara and I just worry about SE it's only now my SE are better from Tamoxifen. The thought of starting again goings backwards is not a nice thought. I haven't been a good patient and my poor family have had enough of my SE. I keep thinking what if the cancer comes back after 10 yrs in total and I suffered for 10 yrs.

    faith if I live like you for another 25 yrs I will be so happy ! Not saying what you are going through is a terrible thing again. When I got Cancer I always said to myself I will make it to 10 yrs so fingers crossed I do and many more. Xxx

  • lala1
    lala1 Member Posts: 974

    I hope I didn't mispeak....what I'm meaning to say is that Tamoxifen works as well on premeno women as post meno women....not that it works as well as Femara. And I am just quoting my BS who said "Tamoxifen will give you about a 50% reduction in your risk of recurrence whereas an AI will give you about a 60% reduction". But as far as Tamoxifen's effect on the body, he says it works the same whether you're pre or post meno.

  • thinkingpositive
    thinkingpositive Member Posts: 564

    is that a 60% reduction for everyone no matter what stage / grade / nodes? I didn't have Oncotpye testing so the only thing that I got were a few percentages from my MO getting info from Adjuvant online. My percentages were pretty scaryand it didn't seem like either Fermara and chemo were reducing the percentage by that much.

  • lala1
    lala1 Member Posts: 974

    From what he told me that number can flucuate either way depending on the nodes and grade and such but for a ballpark figure he said it's pretty close. I had Oncotype testing done and was a 15 which gave me a 9% chance of recurrence. He said generally that 9 is close to half of 15. This is kind of how MOs look at it. My dad's best friend is an MO (in another state) and he told me the same thing. I was grade 3 so I think that's why my Oncotype score wasn't lower.And I am stage IIa. My docs have been very thorough in explaining everything they can to me. They know that, for me, I like to research because it makes me feel more in control. So I have stacks of articles that I've found as well as some they send me that pertain to my situation. My MO loves to research too so we are quite the pair! Having said all that, I'm not a doctor so all I'm doing is repeating what my docs have explained to me.

  • grandma3X
    grandma3X Member Posts: 297
    I have an update on my estrogen levels. After switching from generic to brand name Femara my total estrogen fell from 81 to 33. Estrone increased from 14 to 33 and estradiol decreased from 16.9 to less than 1 (the limit of quantification). These are in pg/ml. I'm not sure why the estrone went up or why the estrone and total estrogens are the same value - I'll ask my GYN next week. I had read that the estradiol is the important one, so I'm very glad that it's now down in the single digits. I don't know if I just had a bad batch of the Sun Pharma letrozole or if these numbers are supposed to bounce around that much, but I'll get it checked again next year and see if they change any.

    My SEs are no better or worse with the brand name. I've been on letrozole for 6 months and Femara specifically for 1 month. I have some minor joint pain but really not much more than before starting AIs. I take Vit D3, Vit K2, Mg and Ca, and glucosamine sulphate to try and ward off any bone or joint degradation.
  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    I am interested to hear what your doctor says about your estrogen levels, grandma3X. I asked my onc about checking mine, and she said that there is not a correlation between blood estrogen levels and how well a patient does on an aromatase inhibitor. (She was speaking to me as a stage iv patient and I don't know exactly what population she had in mind.) She said tumors can even make their own estrogen. I guess I will try to find the literature on this question.

  • GG27
    GG27 Member Posts: 1,308

    I've been taking Femera for almost a month now, was on anastrozole for the last 2+ years. Sometimes I get very shaky, as in my hands are shaking like I'm having low blood sugar even though I don't feel hungry, this is just in the last month. I'm also on Ibrance but was taken off it 3 weeks ago due to extremely low WBC, but last week my WBC were 1.2. I will ask about this on Tuesday when I see my MO but wondering if others are having this?

  • marijen
    marijen Member Posts: 2,181

    receptor mutations in patients with metastatic breast cancer

    Adapted Media Release

    Published: Friday 12 August 2016


    A new study published online by JAMA Oncology examines the prevalence and significance of estrogen receptor mutations in patients with metastatic breast cancer.

    The activation of the estrogen receptor (ER) is a feature of most breast cancers in which ER expression is detected. An aromatase inhibitor (AI) for estrogen deprivation therapy is an effective therapy for those tumors and reduces disease illness and death. Outcomes for patients with ER-positive metastatic breast cancer who are treated with AIs vary considerably, with relapse for some patients within months and after many years for others.

    Sarat Chandarlapaty, M.D., Ph.D., of Memorial Sloan Kettering Cancer Center, New York, and coauthors conducted a secondary analysis of cell-free DNA from 541 patients enrolled in a clinical trial to determine the prevalence of mutations and whether they were associated with worse outcomes.

    The authors report 29 percent of patients had a mutation in the estrogen receptor and mutation was associated with shorter overall survival, according to the report.

    "Mutations in the estrogen receptor are common in patients with metastatic breast cancer who were previously treated with an aromatase inhibitor and are associated with worse outcomes," the authors conclude.

    Article: Prevalence of ESR1 Mutations in Cell-Free DNA and Outcomes in Metastatic Breast Cancer, Sarat Chandarlapaty, David Chen, Wei He, Patricia Sung, Aliaksandra Samoila, Daoqi You, Trusha Bhatt, Parul Patel, Maurizio Voi, Michael Gnant, Gabriel Hortobagyi, José Baselga, Mary Ellen Moynahan, JAMA Oncology, doi:10.1001/jamaoncol.2016.1279, published online 11 August 2016.

  • Jerseygirl927
    Jerseygirl927 Member Posts: 260

    new to group, been on femara since june (2016, but BP has also gone up, so going to take a 2 week break to see if it goes down. Anyone experience this

  • thinkingpositive
    thinkingpositive Member Posts: 564

    I already have high blood pressure so not sure since I take meds for it, but my cholesterol shot up as did my weight. Cholesterol and weight is hard to get down. I managed after eating barely nothing and the doctor still wants cholesterol lower. Also I started out having osteopenia. Now have osteoporsis in spine. On another med for that. Just keep up with calcium and d3 for your bones. And again, not everone gets all symptoms. I have been on it since Feb 2015.

  • april485
    april485 Member Posts: 1,983

    Yes jerseygirl, I have increased blood pressure due to AI use. I took a planned vacation (MO asked me to) and it still remained above normal, but went down quite a bit to about 130/80. I used to run about 112/75 on average and now run (even with lisonipril once a day) about 128/80. When I don't take the med, I run about 145/85. It is disheartening but it is what it is. I don't know if it will be permananet.

  • Nash54
    Nash54 Member Posts: 699

    Jerseygirl....I've been on Letrozole almost 2 years...no change in my BP which always runs on the low side.


  • kmpod
    kmpod Member Posts: 84

    Jersey Girl, yes I did have an abrupt and significant increase in hypertension within a couple of weeks of starting Arimidex. I was hypertensive prior to BC, but it was well controlled.

    My GP worked with me carefully and I ended up increasing the dosage of my current meds plus added another. It took a while to find what worked for me but I've been quite stable in the last 4 years.

    I'm very curious (and hopeful) that once I'm done with the Arimidex, in about a month, that I'll be able to cut back on the meds to a degree and still keep my blood pressure in the normal range.

    By the way, my MO insisted that the Arimidex was not related to the increase in my blood pressure in spite of the fact that is listed on the Astra Zeneca website. That denial did not increase my confidence regarding his care.


  • CidneyI
    CidneyI Member Posts: 32

    I was on Tamoxifen for 2 years and now taking Letrozole (Femara) since March of this year. I have hot flashes and sometimes I cant make up my mind if I am freezing or burning up. I will deal with it as I do not want to be on another med like I was when on Tamo to combat that side effect.

    I have very painful joints, especially at night. Sometimes its so bad, I wake up in the middle of the night wondering if cancer is now in my bones! Will taking asprin or Advil at night before bed help the joint pains caused by Femara?

    I had no idea high blood pressure can be a side effect. I've always been prideful of how I have always had great blood pressure but now, I feel like I have really high blood pressure because I feel like I can no longer cope with my job. I stopped taking Femara for a week to see if I started to feel normal again and I did. What now? Suck it up and go back to feeling like I want to kill everyone around me?

  • lala1
    lala1 Member Posts: 974

    Cidneyl---Try some natural remedies for your SEs....turmeric will help with joint pain, as does magnesium glycinate. My BS says he's convinced that some joint pain is due to low Vitamin D levels. I've bumped mine up by taking 5000IU a day and I do think it helped. Regular exercise will also help with the joint pain. The exercise will also help with the blood pressure. And I put ceylon cinnamon in my morning coffee which also helps lower blood pressure. Google natural remedies for your different issues and see if you can find some more solutions. Good luck!


  • Nash54
    Nash54 Member Posts: 699

    Cidneyl....I take magnesium at night (originally to help with restless leg syndrome). Magnesium is also known to help with hot flashes. I still had joint stiffness in the mornings so I added Fish Oil to my regime. It really did seem to help with the stiffness and ache. I take 1000mg of wild Alaskan Salmon oil I bought on Amazon (about $19 for a 3 month supply). I noticed a difference after about 1 month. I read where Tumeric helps so I've also added that along with Vitamin D3 (1000mg). I'm not sure if I need the Tumeric but I had it on hand so started taking it. But honestly, adding the fish oil seems to have done the trick.

    I agree with lala1 to try to deal with the SE's holistically with gentle exercise(walking or yoga) and drink half your body weight in water.

  • chisandy
    chisandy Member Posts: 11,408

    Cidneyl, I’m confused--your profile states your diagnosis as “DCIS” but your state as IIA. DCIS is Stage 0. Anything higher than that means invasive, either ductal or lobular, or inflammatory. Which is it? (Did they find IDC along with the DCIS)?

    Be careful with NSAIDs. They can really do a number on your gut, especially if you take them before sleep (sleep relaxes the esophageal sphincter, and lying down facilitates stomach acid passing through that sphincter into your esophagus, which is acid reflux or GERD). What I do is take arthritis-formula acetaminophen at bedtime and celecoxib (a COX-2 inhibitor, which is a type of NSAID that is easier on the gut). If pain wakes me up, I apply a topical NSAID gel (Voltaren, which doesn’t reach the gut) or arnica gel. Cinnamon helps lower blood sugar, not necessarily blood pressure. (You are correct to use Ceylon, a true cinnamon, as opposed to all other kinds which are actually cassia--which paradoxically tastes more “cinnamon-y”). Unfortunately, therapeutic amounts of it are way too expensive to be practical, and extremely difficult to consume without gastric upset. And all painkillers cause some degree of liver and kidney toxicity. That 1300 mg. of time-release acetaminophen at bedtime is all the acetaminophen I take. The safe limit has been lowered from 4000 mg/day to 3000.

    I also take 1300 mg of calcium citrate (can’t absorb carbonate because I must take a PPI for GERD), 3000 I.U. of D3, 500 mg. of magnesium, and 100 mg. of K2 for my bones. Since I already scanned osteopenic before starting letrozole, I go in tomorrow for the first of 3 years of semiannual Zometa infusions. (Preferred Prolia, but my cheap-@$$ Medicare Part B & D supplement plans won’t cover it, and I can’t use discount coupons to lower the $5K per-shot price--it’s illegal if you’re on Medicare).

  • Jerseygirl927
    Jerseygirl927 Member Posts: 260

    i have another 6 days, but last BP taken was higher than before. The hot cold flashes will go away, mine did. You body can no longer regulate itself without the hormones, so nothing to do there, as for joint issues, take the drunken raisens, or i take clariton which eases joint and bone pain, they do not know why, but it helps in most people, if i go back on femara and bp comes up again, then we will try another. Appetite is very voracious. Not sure if thats me or the pill, Besides bloated belly.

  • tangandchris
    tangandchris Member Posts: 934

    Well I decided to take a mini break from Femara, the pain has become increasingly debilitating. I can barely walk in the morning, it's been just awful. I haven't taken it since Friday, so just 3 days w/o and I can already tell a huge difference. I'm hoping that I can restart after a week and maybe the pain won't be as bad.

    Anyway just wanted to share lol

  • dtad
    dtad Member Posts: 771

    Unfortunately it's pretty common for docs to deny SE of anti hormones. I don't really understand it though. You would think they would want to work with us to find a solution and improve our QOL. One of my pet peeves!