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​Does anyone take Letrozole (Femara) every other day?

sumomo
sumomo Member Posts: 23

Does anyone take Letrozole (Femara) every other day?

I hope to reduce the dose to ease my side effects. But my oncologist doesn't recommend taking it every other day. I've seen one or two persons mentioning this approach in other topic. I would like to know if there are more doing this (i.e. taking Letrozole every other day) and whether this is a feasible approach approved by some oncologists. I will appreciate anyone's input. Thanks.

Comments

  • lalbo
    lalbo Member Posts: 68

    My oncologist also did not want me to take it every other day. He wanted to put me on Tamoxifen and something else instead. I'm looking for another oncologist.


  • jrnj
    jrnj Member Posts: 407

    Yes I do. My oncologist is aware. He said it’s not the standard of care but better than nothing and I got my ovaries out so that helps. He’s not very good. Doesn’t seem to have time to care what I do. I’ve been struggling for 1.5 years. Many breaks for surgeries. Quit my sleeping pills 8 weeks ago. A person just can’t function without sleep and I work full time. My life is miserable. How do people not have any side effects

  • sumomo
    sumomo Member Posts: 23

    Hi lalbo. Thank you for your comment. Same here. My doctor recommended Tamoxifen instead. I followed it until I couldn't continue. Now I have to more seriously consider reduced dose of letrozole. I hope you find a good oncologist or your current one gives you more practical idea. Best regards.

  • sumomo
    sumomo Member Posts: 23

    Hi jrnj. Thank you for sharing your experience. Sorry to hear you have hard time with the side effects. I too am getting more and more difficulty continuing hormonal therapy. Will probably try half dose soon, no matter what oncologist says. Must be better than none. Take good care of yourself. Hope the spring will cheer you up.🤗

  • kksmom3
    kksmom3 Member Posts: 101

    I took letrozole for 3 years. I was absolutely fine the first year and a half. The second year and a half I struggled. I have joint pain in both ankles, but I'm nearly 65 and I don't know for sure what the cause is. That I can easily handle - what I just can't do anymore is the horrible vaginal dryness and soreness. I felt like I was being stabbed by knives at one point. I tried taking a 3 month break - no real improvement. I tried taking it 3-4 times a week, it got worse, My doctor said she didn't think I would get much benefit from a reduced dose, although I don't see why not, but whatever, standard of care and all that. So, anyway, at 3 years, she was absolutely OK with me going off. However, I had a 3 mm tumor, and the NCCN guidelines for that say to CONSIDER adjuvant hormone therapy, Therefore, I'm done. I tried, I really did....but quality of life is important too. I know I am fortunate for this to have been caught so early. Even if I'd have been a higher stage, I think I still would not have completed the 5 years. I was in pain and misery every day and I tried everything OTC, none of that works, not to mention expensive, and now am doing a once a week dose of vaginal estradiol. I'm still not back to pre-cancer, but it is better than it was.

  • parakeetsrule
    parakeetsrule Member Posts: 605

    It's not just that it's not the standard of care. These medications are tested at certain dosages and prescribed based on the results of those research studies. So doctors aren't going to be enthusiastic about recommending or encouraging something that isn't known to work. If nobody's tested taking it every other day, nobody knows if it works or not. Doctors have to worry about liability too. If they tell us to do something that's untested and it backfires, they can get in trouble. They follow the standards of care for important reasons!

  • sumomo
    sumomo Member Posts: 23

    Hi kksmom3. Thank you for sharing your experience. Sorry to hear you've been struggling. But, you've completed, or almost completed the hormonal therapy necessary for your stage, right? Good for you 👍 Take care and keep up. Things will get better for you 🤗

  • sumomo
    sumomo Member Posts: 23

    Hi parakeetsrule. Thank you for your comment. It makes perfect sense and convinced me there's no point asking oncologists. Still, at verge of quiting the hormonal therapy entirely, some doctors seem to say reduced dose is better than none, while some don't. As you are quiting the hormonal therapy, it is releasing their liability so, it seems some doctors shift their position to more personal and friendly one and suggest continuing the medication even for less dosage. I would still like to know what your doctors say in such situations.

  • plynn005
    plynn005 Member Posts: 2

    hello,

    This is about taking Letrozole at all. I don’t understand why I would take a medication that will affect my quality of life and even possibly cause chronic illnesses I don’t have. I historically have side affects to most medications. I had a lumpectomy & radiation which only happened because of a positive mammogram & biopsy. No symptoms, Stage 1, not in my lymph nodes, no genetic pre-disposition. Why take a medication which will interfere with my quality of life for the next 5-10 years and beyond? No one has been able to give me an answer. I also was looking for research as to whether it is better to not take letrozole at all orto start and stop it early? Haven’t found anything yet

  • parakeetsrule
    parakeetsrule Member Posts: 605

    If my post convinced you that there is no point in asking oncologists for treatment recommendations, you have seriously misunderstood me. They are your best source of information for cancer treatment! Doctors may have differing opinions about treatment based on their individual experience though, so if you don't like what your oncologist says you can always get a second opinion. Asking other people what their oncologist told them is not necessarily helpful, because their oncologist is making recommendations based on their specific risk, which could be very different from yours.

  • plynn005
    plynn005 Member Posts: 2

    no worries there. I am just trying to figure out what I am going to do. My oncologist was not helpful with any alternatives

  • jrnj
    jrnj Member Posts: 407

    I am aware that every other day does not conform to clinical trials. I do think it is better than nothing and I think it is better than trying tamoxifen because I read tamoxifen isn’t always effective for ILC. One trial had a 20% difference. I physically can’t take it every day. I throb in pain and don’t sleep. My fear of cancer is stronger than my fear of living in misery, so even every other day is misery but every day is not possible for me. So it doesn’t really matter what the dr says.