FEMARA
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Gkbuser- it really can be the lack of estrogen. The post menopausal ladies you’re referring to still have what amounts to 20% of their pre-menopausal estrogen still being made by the aromatization of androgens that are released from their adrenal glands and converted to estrogen in their body fat. We on the other hand do not. The zoladex shits down your ovaries eliminating that source of estrogen. The letrozole prevents the aromatization process from happening. So you effectively have 0 estrogen. Not everyone has the muscle/joint pain (but it seems like most have some degree of it), everyone’s level of muscle/joint pain is different with a range of debilitating down to very minor. If you come off the zoladex, the letrozole won’t offer any measurable protection for you as it’s only addressing approximately 20% of your overall estrogen production while your ovaries will begin pumping out the 80% like normal. Your only option then is tamoxifen which has a higher recurrence rate than your current regimen. If I remember right the difference is 13% less chance of recurrence someone please correct me if I’m wrong)
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Letrozole caused me to be jittery and made my sleeping issues worse so I take it in the morning.
The Fem-dophilus is a very small tablet.
I haven't had reflux from the letrozole, but I take one tums at night both for the calcium and because I take ibuprofen.
I tried the CBD oil and it made me hyper, which I read afterward can happen with small dosages. I now put it in lotion and use on my achy legs and hips. It was working but the last 2 nights I've had leg cramps and hip pain again
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Oh ok, I get what you are saying Lula. So, my estrogen level could in fact be lower than the 101 year old woman? LOL Do you know, would that include if I am indeed post menopausal without the zoladex? I mean does zoladex provide any extra protection for post menopausal women? maybe there are "stages" of menopause? I have a hunch that I could be naturally post menopausal as I am going to be 53 in July. Maybe I could safely come off the zoladex is what I am thinking. But, I would stay on it and tough it out if it was better for keeping the cancer away. It was unclear when I was diagnosed at 51 if I was naturally post menopausal or not due to being on continuous hormones (birth control that I took continously without doing the placebo week) since 2002 to treat sever endometriosis. wondering if I could come off zoladex. She seems more welling to do a break from the letrozole for about 4 weeks and see if my body will reset than talk about going off the zoladex. She would like to see me stay on the zoladex until I am 55. I find that very daunting as I feel like I barely have handled the last 1 1/2 years on it.
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gkbuser, try to check drugs.com and Ask A Patient on Zoladex. Drugs.com lists bone, joint, muscle pain as rare side effect but you may be one of the rare ones. There is also the Professional Tab you can check. It may just be overkill for you to take both drugs. Ask a Patient gives you personal experience by others on Zoladex. Or you can find that here. I believe our normal levels of hormones are unique, therefore cutting them back may put you at lower levels.
I had to quit Letrozole because it affected my eyes and the pain became unbearable. That was after I couldn’t get Roxane Labs and had to go to Breckenridge ( made in India ) or Accord. Also tried Teva, it was no better for me. Good luck.
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gkbuser-yes, I’d bet $100K that your estrogen level is lower than that 101 year old woman’s level. Just a thought...have you considered just removing your ovaries and taking them out of the equation altogether? If you were to take a break from one of the two meds, I’d do the letrozole first too. You’ve got 3 other AIs you could try as well. Have you tried different brands of letrozole like marijen mentions at the end of her post above? The fillers are different manufacturer to manufacturer and can cause SEs all on their own.
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marijen, funny you should mention that. My pharmacy just got bought out and will be switching from accord to breckenridge. I haven't done so well on the Accord brand. How did you find out they were made in India? When I tried to look them up I thought it said they were made in America? lula, I thought about it briefly. Wasn't really crazy about more surgery at that point. So I let that idea go then decided to just do the zoladex for a few years. Bone pain is clearly listed under the side effects side effects for zoladex. Which is why I'm so confused as to where my uncle thinks that it's probably more the pills. My Gynecology doctor said they also use it quite a bit too and get a lot of complaints of joint pain from it.
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India - CP418 posted this article:
https://in.reuters.com/article/usa-india-genericdr...Here is the BCO topic
https://community.breastcancer.org/forum/73/topics/819275?page=1#post_39481890 -
Something I didn’t think about was asking for the Femara Brand instead of generic. But I’m fine not being on it at all. It’s interesting to me that we are supposed to take it for five years and at five years is when the possibilityof ER positive recurrence increases. There is also a point where for some of us it becomes ineffective anyways. Taking a break is not a bad thing.
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marijen, do you know where the brand Femera is made?
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My MO said it's fine to take a 2 week break if the side effects are bad or when changing from one AI to another. I figure it's better than not taking it at all. And that 2 weeks seems to do a kind of reset for all the SEs. I'm thinking of doing it on vacation because I'm not very active. I do a lot of sitting... In the pontoon, on the pier reading or on the couch crocheting. My pain is the worst when I'm inactive and stiff.
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Brand Femara is manufactured by Novartis. I don’t know if they farm out production.
Located in East Hanover, NJ, Novartis Pharmaceuticals Corporation is an affiliate of Novartis which provides innovative healthcare solutions that address the evolving needs of patients and societies.
Headquartered in Basel, Switzerland, Novartis offers a diversified portfolio to best meet these needs: innovative medicines, cost-saving generic and biosimilar pharmaceuticals and eye care. Novartis Group companies employ approximately 118,000 full-time-equivalent associates and its products are sold in approximately 155 countries around the world. For more information, please visit http://www.novartis.com.
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my MO recommended a 3-4 week break between AI s
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gkbuser--I took turmeric for 4 of the 5 years I was on Tamoxfen and I can say it changed my life! The first year was pure hell with the joint pain. Once I started turmeric, I never looked back. Did my T-time easy peasy. (mostly!) My holistic doctor told me to take Gaia Turmeric. It's sourced out of NC and he thinks it's more "pure". This is how he said to take it:
Buy Gaia Turmeric extra strength. I get it from Amazon but you can also get it from Vitamin Shoppe. The capsules are 500mg. He said take 1 a day for a month. If you get improvement, continue taking 1 a day. If you don't, up your dose to 2 a day for a month. If no improvement then it's not going to work for you. If you do get improvement, keep taking 2 a day for another month, then reduce down to 1 a day over the next month and stick with that unless pain comes back.
I put my dad on this when he was looking at knee surgery after he had to give up golfing, skiing, hunting and running. He's 82 and retired so he has lots of "activity" time! I checked in with him 2 months after he started it and asked him if it worked. His response was "It worked so well I played 5 straight days of golf last week!" He thinks it's a miracle drug! And he's a retired doctor who thinks supplements are "stupid"! Not anymore! He's a believer!
Sorry for going on so long. I am just a big believer in turmeric myself!
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wow lala, thanks definately going to do that! Is this it?
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gkbuser---That's it!!
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gkbuser someone just started a Zoladex/Femara thread except she spelt Femara wrong.
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ok thanks
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Lala
I though you have to take with pepper for it to be effective. You did not mention that. so guessing your just taking it as is and its working well for you . .
I have been a little worried to take to many supplements . I was also told B complex was good for the joints but can not find any information if it would interfear how effective the Letrozole is , Any advise would be appreciated
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HoneyBeaw---the Gaia turmeric has the black pepper already in it. It's one of the reasons it was recommended to me. I asked my holistic doctor about B complex and he wasn't very keen on it. He said B vitamins in higher amounts can be detrimental and most people already get enough. As to joint pain, he didn't think B helped with that. I take turmeric, ginger, olive leaf extract, probiotic, magnesium, Vit D, fish oil and a multi vitamin. All these I do daily and then I take a baby aspirin 3 days a week....more than that I get too many bruises. I had a tough time when I started Tamoxifen and with this list I got through my 5 years pretty easily.
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Lala, that's a lot of supplements but it makes sense. What kind of multi vitamins do you take? Can you recommend one? I am only taking Vit D, and Calcium Mag Zinc b/c I am doing rads, but also can take multivitamins. When I am on AI, I'll take what you're taking.
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SoI'm just over a month on femara. Weird aches and pains in random places still. Just started with seconds of dizziness. Anyone else have this? If so, any tips? I know it's listed as a side effect but it's comforting to hear from others.
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I so appreciate this discussion...I'm only on day 6 of Letrozole, so too early for side effects. But waiting.
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PatsyKB - my side effects started on day 2, here's hoping you are lucky and yours are mild or nonexistent ! Lanne
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Lala, got my gaia tumeric yesterday! Hoping it helps me.
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nonomimi5--I just take a generic Walmart multivitamin for adults over 50. My MO and BS both said they didn't really care about a particular brand but both requested that I buy ones with the lowest amount of Vit E I could find and definitely don't supplement with it. They said some research shows Vit E to be estrogenic.
gkbuser--Let me know if it helps. I'm always curious to see who it does and doesn't work for!
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Hi Clynnejohn, I am in my 5th month of letrozole, and I experienced brief dizzy/lightheaded spells during the first couple months. It seemed to happen mostly within a couple hours of taking my pill, so I timed my pill-taking for early evening - after work and commute was over. Rarely happens now - hope it'll pass for you too.
Hi Patsy - we are both on the SAVI thread too. We're all so different, you may be lucky and have few or no SEs. I have a couple common ones that started right away (difficulty sleeping, joint pain), but have figured out what works for me to manage them. There's alot of good info on these boards. And for me, letrozole is way easier than tamoxifen was, so that's a blessing. Good luck going forward!
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kiki13 - good to see you here as well as in SAVI. I lose track of who’s where’s and when!
I wonder, when it comes to SE’s of AI’s like Femara/letrozole, if our age (as in how far past menopause) has any influence?
I’m 67 and about 16 years past menopause. Probably a good 13 years since a hot flash or anything.
So for those of us who are - ahem - older, will the drop in estrogen be less perceptible? Or is it impossible to predict?
So much to ponder and learn.
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gkbuser....will be interested to see if it works for you. Keep us posted
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i will keep you guys informed.
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