FEMARA
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Maybe they are just following the general treatment plan?
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owens69...no one offered me zoladex. Just Fermara. What is zoladex? I worry all the time about the pains that I have being something else!
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ThinkingPositive Zoladex is for ovarian suppression. I haven't been offered Zoladex, but I do get a Lupron injection each month as well taking Letrozole.
I am definitely feeling the joint pain, especially in my shoulder, behind my shoulder blade and up my neck on the cancer side. This may be from surgery and radiation, and Letrozole just aggravating it, I don't know. Headed to PT on Friday. My hands, feet and knees are feeling it too. I can't tell if it's post-chemo pain that will normalize after a bit of time or if it's going to be like this for 5 years. I do get out to walk/run, but I can't seem to exercise like I used to, at least not yet.
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1st day on Letrozole. Just switched after 18 months on Tamoxifen. Hoping for the best, but will definitely check this thread out.
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I have shoulder pain too....I know it's rads. I use biofreeze alot and ask dh for massages be cat it feels tight all the time. I have aches and pains ever where and it is truly exhausting. I saw my back doctor yesterday and he again told me I have severe arthritis in my back. He said this is causing the pain in my hip, leg, and knee. He added Lodine to my meds.....he said if this doesn't help he'd send me to pain management. I'm very sluggish too, not sure if it's the pain causing that or just a SE. I'm tired of it though. I finally broke down and bought myself some Replens for the vaginal dryness. I just feel so old bleh
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I looked up lodine, it's a nsaid with a ton of side effects. I know it's rads too. Everything worse since then and it's harder to get moving. Femara makes it worse
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You might ask about Celebrex, which is a form of NSAID called a COX-2 inhibitor, which is far easier on the gullet & gut. (There is a slightly higher risk of cardiovascular disease, but if you feel truly miserable it's worth rolling those particular dice). I take one 200mg capsule every morning, and at night I take my letrozole along with two 650mg caplets of time-release “arthritis formula" acetaminophen. Those drugs and their timing have gone a long way towards lessening my pain SEs (though they do nothing about my metabolism, bones, or “thermostat").
If estrogen were made only in our ovaries, Zoladex alone would suffice. But our fat cells and adrenal glands make an androgen, and our liver makes aromatase—an enzyme that converts that androgen to estrogen. (Yeah—no matter how long ago you went through menopause, without an AI you still make enough estrogen to feed a hormone-positive tumor). Aromatase inhibitors drastically reduce bodily estrogen, while SERMs like tamoxifen and raloxifene (originally sold as the bone drug Evista) block the tumor cell receptors' access to it. Try this analogy: think of AIs as removing the fattening food from your fridge and throwing it in the garbage, Zoladex as a fire that guts the fattening-food factory, and tamoxifen as a padlock & chain around the fridge and through the door handle.
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I use Curcumin for my knee and back pain, and it's made a huge difference for me. If you use it - make sure you get it with black pepper - this activates the curcumin. It really has helped me a lot.
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Trisha-Anne, what company makes the Curcumin you take?
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Love the analogy Sandy! If the joint pain doesn't let up by the time I meet my new MO in November (I'm so sad my current one is moving to Seatlle) I'm going to ask about Celebrex. It's a bummer really, I've always been pretty active, still went to karate class 2-3x week through chemo (no fighting though which I am totally ok with.) Now I can barely get out of a chair if I sit for 30 minutes. Once I get going I'm better but the sudden onset of pain is just depressing.
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Amy, I'm in Australia, so the brand and company may not be available to you in the USA. I'm not at home at the moment, so can't check the label, will do that when I get home. I buy it from a health food shop locally, and they don't appear to operate outside Australia. Will post more later today
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amylsp---I've been taking Gaia turmeric extra strength. It's made in NC and my holistic doc said it's a really good company that produces a clean product. The pepper is already in it. I buy it off Amazon but I think you can get it from Vitamin Shoppe. It took my joint pain from about a 9/10 to a 2/10. Totally changed how I felt and what I could do! I strongly recommend it to anyone with pain from the AIs or Tamoxifen or even from arthritis. My dad went from giving up golf and hunting to golfing 5 days a week after only being on it for 2 weeks!! Can't hurt to try.
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Thanks so much Trisha-Anne and lala. Right now my joint pain is manageable, but I'm worried about things getting worse now that I'm on the Letrozole. I will check out the Gaia brand.
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I have terrible shoulder pain and I did NOT have radiation, but I am on Letrozole. I take it faithfully every day but it causes me much pain. My doctor let me go off it for a month and then go back on. I definitely felt better.
Laura
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Amy my curcumin is an Australian made one, so you may have more joy with the other brand. Just so you get an idea of what's in it though - it's 631.6mg of curcumin with 131.5mg of black pepper. You don't need to wait till you get pain - you can start taking them now
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Thanks Trisha-Anne! I'm going to the local health food store this weekend and will check out what they have.
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Vanmama..like you I had no radiation. Did they ever send you for any scans because of it. Mine is more discomfort than pain. I can't explain it. I never mentioned to my MO as I just figured it's the Letrozole and the actonel. As far as zoladex I was never offered I guess since I am post menopausal. Plus I had my ovaries removed last sept due to a cyst. Wasn't going to wait for that to happen!! Is there any way of knowing what our estogen levels are to know if the drugs are working
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Thinkingpositive...in a word yes! You can have your hormone levels checked but most MOs just don't do it. Naturopathic docs do and then adjust meds accordingly. As I've said before MOs just don't know enough about female hormones. I think it's a huge gap in our treatment. Good luck to all fighting this disease.
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I have a lot of pain in the cooler months, but summer was good. First year so that was interesting. Now it's getting cold again...
I do Tai Chi several times a week and when it is cold out, walk in the mall. I told my oncologist that the first 20 minutes are agony but then it gets better, and overall that is the only approach that works for me. But if you exercise, keep going through the pain, get over the hump and for the last 30 minutes of an hour or so you will experience some improvement overall.
Swimming is supposed to help as well. A heated pool preferably.
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dtad, I have asked various docs about hormone checks. They have all told me that hormones fluctuate throughout the day and from day to day, so it is almost impossible to get an accurate read that can be reliably compared with subsequent reads. There are ways of doing it, but it involves blood monitoring over a time period, uncomfortable and expensive
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Doing the happy dance: my letrozole refill turned out to be the Roxane version—the one that’s always treated me more gently.
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My Medicare BC/BS plan pays for brand name because of a documented reaction to two generics. But copay will be $95 starting in January. At that point I will try Roxane, Teva, and Accord in that order. I also take an expensive osteoporosis drug. I had Medicaid until I turned 65 this past year and now my expenses are really hard to manage. Thanks for the tips on generic manufacturers as always.
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l have been taking 2.5 mg of letrozole for almost a year i don't have bone pain. I do take Neurontin for another issue and it is supposed to help that pain. It is worth checking out.
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Hi ladies. I'm new to this thread but not to Femara. Started in February 2015 after finishing chemo. I had a left hip replacement in February 2016, not related to the Femara but to radiation through the hip area from treatment for anal cancer in 2008. That cancer has not reoccured thank God. The hip replacement helped tremendously with pain. I still have knee, right hip and thumb pain and a lot of stiffness plus fatigue, brain fog and emotional issues. I am 73 so on the 10yr plan will be taking it into my eightys if I'm still alive. I did switch to aromasin briefly last year but no difference so I just deal with it one day at a time. I try to walk daily between 1-2 miles to protect my bones and take calcium, D3 and magnesium. Aleve takes the edge off. Sitting in one position for over an hour and nights are the worst. I can walk without pain but tire easily. I'm planning to join a gym soon that has a pool to see if it will help. Love, Jean
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still on the femara, letrozole version, i do have gerd, which i got from the fozamax years before my cancer dx. I was very very leary of th prolia as i have always had bead teeth, and a mouth full of crowns and root canals. I am due for my 4th shot of prolia next month and then will see what the bone density uncovers. I have been doing yoga for bone strength, balance and bone growth. My calcium, vit d, and magnesiumm supplements are taken 2-3 times a week. Sandy, you information was helpful, we are all here on this BC journey because it is in the cards for us? Why? Who knows and of course all our side effects are different mostly. We do the best we can, we try to help each other with what helps and what doesn't. I pray someday they really do find a cure, so our children and grandchildren dont have to go through this. But without the help of Almighty God i dont see a cure emerging in my lifetime. So i can only pray that God will enlighten some dr or scientists with the cure for future generations and go about my life, till i take that final breath. Complaining really doesnt help me , dont know about anyone else? God bless us all!
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momline....naturopathic docs test hormones via saliva and believe they are very accurate. Good luck to all fighting this disease
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dtad, I know they do, but according to regular doctors, this is, in fact, not accurate nor reliable
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momine....don't mean to argue but which docs? Most MOs know very little about female hormones. It's just not part of their training. Naturopathic docs have had much success testing hormone levels and adjusting them a accordingly. It just does not make sense to me that MOs are playing around with our hormones blindly. We all have to decide which medical professionals are best for us individually. Good luck to all
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dtad, I have this from an endo, two bone guys (consulted about bone loss), but also from my breast surgeon, who is quite knowledgable about female hormones.
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