FEMARA
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Thank you for the replies. My shin pain comes and goes but the joint pain seems to be worse with the constant rain here on the east coast. I’m refilling my femara tomorrow and hoping the side effects lessen as I’m on it longer.
Tkane10 I get foot pain too. Like something has crushed my foot. Hot baths and/or heating pad helps me.
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Gentle foot yoga helped me a lot along with epson salt baths. Try clicking this link
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This might be a dumb question but here I go. Does anybody know do cancer cells have like a life cycle? I mean, if there happened to be a few rogue cells in our body and we deny them the estrogen they need to grow then will they eventually die out? Or do they just hang out and wait for us to go off our anti estrogen meds and then start growing again?
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gkbuser that’s a good question. My understanding is that the frequency of my chemotherapy (every 3 weeks) was based upon breaking the cell cycle. Higher stage means I was more likely to have micro metastasis (undetectable by today’s testing). However, there can still be breast cells that can be activated by estrogen. If it happened once it can happen again.So the anti-hormonal meds block the cell receptor sites of breast cancer cells that estrogen binds to keeps it from happening again. Hope that makes sense!
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For my aches and pains, I make a 1% dilution of hemp seed essential oil and Copaiba in unscented lotion. I had some CBD oil that I tried sublingually that made me hyper, so I added half a dropper in the lotion too. Helps to get rid of the pain overnight for me.
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For my aches and pains, I make a 1% dilution of hemp seed essential oil and Copaiba in unscented lotion. I had some CBD oil that I tried sublingually that made me hyper, so I added half a dropper in the lotion too. Helps to get rid of the pain overnight for me.
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nancy, I see that you have been on several aromatase inhibitors. Was it side effects? What is cocalba lotion? You just rub it on your back or what?
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I'm 5 months in with letrozole, and my joint pain has been mostly hands, knees, and feet. What really works for me is a hot bath with Epsom salts, then rubbing a CBD balm onto the sore joints right after the bath. I am also taking a joint support supplement that is a blend of turmeric and glucosamine chondroitin.
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I changed AIs because of side effects, yes. My MO led me to believe that there would be one that wouldn't have any or at least fewer than the others. I've had side effects with all of them. Giving Femara a try again.
Copaiba is an essential oil. I use it with hemp essential oil diluted in unscented lotion. NEVER use essential oils without diluting. No more than 5%. Before using any essential oils, check out some reputable websites to learn more about them. I recommend Edens Garden oils. Lots of info on their site. And they promote safe usage, unlike some other popular EO companies
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Kiki what brand of CBD balm do you use? I add some to my lotion and it does work.
I take turmeric capsules. Seems to be helping.
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Nancy, I use "Plus" brand. The balm I like is PlusCBDoil Balm, 100 mg.
I started using the balm and taking the supplement at the same time, a couple months ago. Maybe I could experiment and see if one or the other alone helps, but I feel so much better, I'd rather not mess with success!
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Kiki I can't use the liquid that I bought. It was a stimulant for me and I wasn't sleeping. Using the lotion I made from it in my legs and hips before bed helps me sleep better than I've slept in a very long time.
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This past Friday, my onc's nurse said I should start taking Famara. However my first ovarian suppression shot (zoladex) is not until this afternoon. I keep reading online and also on femaras website that femara should not be taken before complete ovarian suppression. I also remember my onc telling me the same thing at a consultation and her handwritten notes say famara 1 month after zoladex. Which would make sense because I read that zoladex does not start working for 3 weeks. It's bothering me why she would change her mind and give to me before ovarian suppression when that is advised against. I've read on several reputable sites that taking it before ovarian suppression will cause the ovaries to make more estrogen. Off topic but I was never told to get a dental clearance before my first chemo. Ive learned that this is highly recommended. Both of these things make me wonder if precautions are being taken to ensure that I have the highest chance for a successful treatment. It's bothers me and makes me wonder if I'm just a number. What do you all think? Thanks
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Adykort, I would call the office and double check because sometimes they do miss things. Be sure to be very detailed in your question because it seems to me that sometimes when they take a message, they only get part of the information that you give. Just sayin"
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The joint Pain I can manage. Its the weight gain that is getting me. It seems no matter what I do I keep gaining weight and have only been taking it about 15 mts, by the time I hit 5yrs I will not make it through the door . No exercise or diet control seems to help. I also notice stomach bloat much more now then ever before . Does anyone here have the same issues with weight and bloat
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Honeybeaw- Weight gain is a serious concern for me too. I am currently "maintaining" by intermittent fasting - 23 hour fasts four to five days a week. Simply stated, I eat one meal a day most days.
This is quite a change from my time in chemo when I had to eat five times a day to keep from losing too much weight and the doctor kept sending the nutritionist to talk to me.
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Hi everyone...seems like so many have an issue with weight gain and exercising while on aromatase inhibitors. It just seems contradictory to me since weight loss and regular exercise has been shown to lower recurrence rates by 40 percent. Obviously doing both would be the most beneficial but seems like very few can maintain that. We need better treatment options!
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This is off topic but I don't know where to pose the question.
I had a partial mastectomy and radiation. Between the two, I have only half a breast. 😀
I have been wearing sports bras since the surgery, but they are no longer comfortable and they ride up on the smaller side.
Anyone have a recommendation for a comfortable bra and what I do for the non filled cup?
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Hanes makes a stretchy short cami style bra that’s very comfy. And since it’s stretchy it conforms to your unique shape. It literally looks like a cutoff camisole. I got it at Belks.
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look at www.curediva.com.
They had some nice stuff. When I just had a lumpectomy I went to a local masectomy boutique and they fit me with a bra with a pocket.
Soma intimates in the mall does masectomy bra fitting too.
I'm not a big Walmart person, but they had a lot of bras like Lula mentioned. Also, jcpenny has some similar things.
I ended up with a MX and implant, so im.sorry I can't help!
I think there is a bra topic on this board. Im.sure u will find info there
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Check with your insurance company. Mine covers prosthetics and brasbut I have to go to a specific provider.
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I had a lumpectomy too and radiation. I was told the affected breast would get smaller. Well no. I ended up with lymphedema in my breast! So it’s bigger! Anyway my Physical therapist gave me this website for what’s called a swell spot to compress my breast. I’m getting 2 to try and even myself out. Maybe it will even you out too and help your bras stay put! Might be cheaper to try this before getting all new bras. Here’s the website:
http://www.lymphedemaproducts.com/products/breast-swell-spot.html
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HELP. My pharmacy (Kroger) tells me they are unable to supply me with Teva and substituted Breckinridge instead. I asked if I could at least have Accord, but unable to refill my script with that either. I checked with CVS and Publix and same story. Is there a Teva shortage or somewhere else I should check.
Teva is tolerable for me and had worse SE with Accord with hot flashes, joint pain and insomnia. Start the breckinridge tomorrow unless I can find the Teva.
Thanks!!!
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There was discussion several months ago that Teva was going to quit manufacturing arimedex but I hadn't heard that they were doing the same thing with femara although it sort of makes sense if they are going to quit manufacturing one AI, they might quit on another. I got my generic Accord refiled from Walgreens about a month ago. You might try there. Some people have been able to get an insurance override for the original medication rather than the generic with the help of their MO. I'm certainly convinced that the manufacturer can make a difference. I was paying a fortune in co-pays for a seizure medication that my neurologist absolutely wouldn't write for generic. He was able to switch me to something else several years ago and doesn't worry about the fillers at all.
I've managed to lose the 5 lbs. I gained from the steroids but can't seem to get much more off although I have upped my exercising/walking. Just today primary put me on metformin because I was borderline diabetic (my father had insulin dependent type 2 diabetes so we have watched it pretty carefully). I had read on one thread (don't remember which one) and my primary confirmed that many have less joint pain with the metformin (and I do hope I will lose a few more pounds). Honeybeau, have you talked to MO? Mine said to call her before my 6 month check if I was either losing or gaining a lot.
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If you've not tried the Breckinridge brand before, you may consider just purchasing a week's worth of it to see if you develop different/worse SEs. This could be a blessing in disguise...
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Thanks for the suggestions for bras. I do think something longer like a half cami would work.
I am getting Accord letrozole. I remember that that brand caused more SEs when I was taking Arimidex. But so far, the SEs on Letrozole this time aren't as bad. Or else I have figured out what to do to lessen them.
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novmoon, if it makes you feel any better my Pharmacy was recently bought out by another company. I had been on the Accord brand of letrozole up until that point. With the new Pharmacy buy out they are going to start using Breckenridge. I was a little concerned but had a lot of side effects on the Accord. So, the pharacist agreed to fill it with 30 days of the Breckenridge to see how I did. I've been doing much better on the Breckenridge so far. So, I agree maybe a blessing in disguise.
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Hello again, it's been a while since I've been here, although I often read the posts. I have been on letrozole for 12 weeks now. I have fatigue, difficulty sleeping, hot flashes, but worst of all muscle/joint/bone pain and stiffness. I walk and swim regularly and do stretching exercises. I am struck by the differences in opinions of and treatment by our MO's. My bone density is great, with T score higher than young adult mean, and I am now in my 60's. I was told to take at least 1200 mg/day of calcium with vitamin D, which concerns me given the studies about calcium perhaps being more harmful than helpful. My bone density will not be rechecked until 2 years, at which time I will be given Prolia injections every 6 months if needed. I have always had high total cholesterol (200's to 230's), but with great HDL and ratios, so no physician has ever recommended a statin. However, my baseline cholesterol before letrozole was the highest in my life -- 265! HDL 62 (down from 80's). I was told to wait 6 months for recheck and to start statin at that time if it increases. I'm an RN, and accustomed to preventing medical problems, not waiting until they are bad enough to require treatments that can also cause adverse side effects. Does anyone else struggle with feeling that we are sometimes treated in a "one size fits all" manner," or that current studies do not support our treatment? I REALLY like my MO, but only saw him when first diagnosed; I see and communicate concerns with an NP ever since; I communicate via patient portal and have not received replies to my last 3 queries from one month ago or more. Thank you for letting me state my concerns. I'm not sure there are good answers, but maybe others with thoughts about these issues.
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Mielli, I'm sorry you don't have an MO that you can communicate. I am very fortunate. I'm currently seeing mine every four months and always takes plenty of time to listen to me and has more or less allowed me to determine what my course of treatment is.
My cholesterol has been 260 for years. My MO doesn't even test for it. He says the latest studies show that AIs do not cause an elevation. I have a wellness exam with my PP in August so I'm hoping he'll check it and I'll be interested to see what I'm at after AIs.
I have refused statins. So many people I know have had terrible muscle aches with them. I don't need to add to what I have. Although I have to say that I am not having much pain since taking turmeric and using a muscle and pain cream I concocted for my legs and hips.
I do feel like there should be more research into ways of decreasing recurrence without creating debilitating side effects.
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Thank you for your reply, Nancy. I think that seeing your MO every 4 months would be great. After intensive initial treatment of surgery and radiation, and then being prescribed Femara without follow up until November (started 3/23/18), with the nurse practitioner from here on out from my understanding, I feel a little "lost." Like just another number in the system. I think of questions or concerns all the time, and would feel better with more frequent contact. I'm an RN and know that NP's provide a wonderful function and often listen and respond more than an MD; I would, however, like to see the MO at least once per year, with my diagnosis being 12/21/17 and I only saw him for initial visit on Feb 1. I love my PCP, and she is working with my antidepressant medication, which I really need right now.
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