FEMARA
Comments
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I was only dizzy when doing intense exercise or standing in the heat. Or got up quickly - you know the low blood pressure kind of dizzy. It was never terrible. I just had to go slow. I also hated standing outside in the Houston heat waiting at dismissal times for my kids to get released!!! I would just wobble around because it felt terrible. Can you ask a neighbor/friend to check in on you? And I agree taking it at night helped with SEs mostly. But I often forget to take pills at night and I ultimately switched back to AM so I would remember. I am also on Cymbalta which my doc prescribed for the joint pain and for me it worked wonders. I am still achy but mostly just after my Lupron injection.
I also agree it is amazing to know I am not alone on the sh**. If I want to throw myself a pity party it helps to remember that there are a lot of us out there and it is not just me. I also remember to pray about it and then try to help someone else. Being in Houston there are a lot of people in a much worse situation than my achy joints right now as a result of the flood so there are a lot of people to help. I just bring lunch to workers pulling out sheet rock and remember I am useful and I feel better. Hugs!!
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BB Now I've been off since Aug.1.
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My nap is a little later HapB - I have a circadian drop around 3pm, so it's a good time to sleep. BB I walk 30 min or more every single day. Just got back. Do you walk at all? I also go up and down the stairs a lot at home. If you're looking for a reason to go off the AI - I think it's your body and you can if you want to. Keep in mind you can always go back on and it might give your letrozole a boost. Just keep picking up the prescription on time and you'll have them for later. Well I hope it works out for you. I am having deja vu as I write this.
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Thanks BB. My PCP said the same thing. I'm sorry about your back issue.
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Hap B the suspense is killing me! How do you feel now? : ). They say progesterone keeps estrogen in control, also melatonin, DIM, there's many more have you been to the treating estrogen naturally
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Yes. How do you feel now
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I think you'll be fine in the morning. Here's the link.
https://community.breastcancer.org/forum/121/topic...0 -
What kind of infusion
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There's someone here who is happy with her herceptin - jaycee
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I'm sorry, I don't want to fine out. How long do you have to be on it
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Well maybe it won't be so bad. I'm surprised you started the letrozole the first night before your herceptin. How are you feeling now? Any hot flashes
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The manufacturer I'm taking is Breckeneidge, I think.0
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Bossomblues...very interesting that your doc said SE won't kick in for 3 months. I literally just read on another thread that another persons doc said if you don't get Res in 3-4 weeks you are very lucky! Which is it? IMO nobody really knows who will have SEs and when. it is extremely individual and I don't think the MOs should make a prediction. Good luck to all.
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HapB...yes there is a thread called lowering estrogen naturally. You can also PM if you want to know more. Good luck to all.
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Well HapB, it seems a long time since yesterday. How are you feeling now?
I just had a very bad thought. AI causes bone loss, but can it also cause degenerative discs. Anyone
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I don't know why It never occurred to me before. It only make sense, if the bones are degenerating, they will move around and affect the discs between, or whatever is between our finger joints etc
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Osteoarthritis associated with estrogen deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC27872...
This is a very long study, I'll just put the conclusion here
Conclusion
Progressive structural and functional changes on articular structures commence at early menopause and persist post-menopause, leading to an increase in the prevalence of OA in the latter population and representing a big impact on health costs worldwide. Both experimental and observational evidence support a relevant role for estrogens in the homeostasis of joint tissues and, hence, in the health status of joints. Indeed, estrogens influence their metabolism at many crucial levels and through several complex molecular mechanisms. These effects of estrogens at joints are either significantly dampened or lost as a result of postmenopausal ovary insufficiency.
A better understanding of the role that estrogen and its deficiency plays in the molecular mechanisms of menopause-induced osteoarthritic changes that affect the different joint structures will help further development of new and precise therapeutic strategies to prevent and/or restore damaged articular tissues in OA. These improved therapeutic approaches must be devoid of the widely known undesirable effects of estrogens in other target tissues. Thus, in OA, which represents a particularly challenging disease due to its effects upon different joint structures, these therapeutic options should target the joint as a whole organ rather than focusing only on cartilage damage
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HapB, postmenopausal estrogen synthesis via conversion of androgens produced by fat cells & adrenal glands (resulting in estrone), vs. ovarian production of estrogen (estradiol), are two different things. The respective estrogens produced are not chemically identical though their effects are. A young woman whose ovaries are still producing estrogen cannot take AIs because they stimulate the ovaries to make HCG and more estrogen in turn, perhaps more than a SERM like tamoxifen can block from reaching the tumor cells' estrogen receptors.
It's a common fallacy that we need less anti-estrogen medication so long after menopause, because we still produce a form of estrogen from our adrenal glands & fat cells (via the androgens they produce that aromatase converts to estrone) as long as we have fat cells and adrenal glands. The tumor cells' ER receptors don't care whether the estrogen they glom onto is estradiol or estrone, so long as they get it.
True, a recently-menopausal woman has more residual estrogen (estradiol+estrone) in her system than we long-postmenopausal women (or men with bc) do--even though ours is all estrone. But though we don't have enough to keep us looking & feeling younger, we still have more than enough to feed the tumor cells. And we produce as much aromatase as do younger women. The dose of AI we're prescribed is what is necessary to inhibit the aromatase from facilitating the conversion process.
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Like tdad said, there is a thread in the alt med forum. But it certainly could be in the complementary med forum too. Here is the link.
https://community.breastcancer.org/forum/121/topic... There are many ways to help suppress or soak up estrogen. My fav is black beans in the specially-lined can and they have a liquid broth seaweed or nori addition with a flavor you never notice.
I'm not saying go off the hormone therapy, just more info for the thought and decision and ultimately actions to help us all get through the best we can.
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Thank you Chisandy, you have cleared up the question that's been floating around my brain for two and one half years!
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I've been on Femara along with Ibrance since Jan. 2016 and I'm taking a break from the Ibrance for a couple of months as my body was just worn out and we will be taking a trip. I have some joint pain but right now I'm dealing with bad muscle aches and pain in my legs from the knees down. I'm pretty sure it's the femara causing this since I've been off Ibrance now since the first of August. Does anyone else have this kind of pain in their legs? Since I have HBP, I can't take any nsaids because they raise my BP and Tylenol is no help.
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Yes. I have the pain, only it's not just my legs, more like my whole bod. Still trying to figure out what to do about it. I was on for 28 months. That's why I'm here so much
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From what I understand, not all fat cells produce androstenedione (the androgen that aromatase helps convert to estrone). Brown (thighs, butt) or even yellow (subcutaneous) fat cells might not. White fat (such as breast and belly fat) might be the culprit. Moreover, it's not the fat nor the androgen made by the fat cells that the AI inhibits, but the aromatase itself. Body mass does not affect the size of the adrenal glands nor the amount of aromatase cranked out by the liver.
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hi Faith rigorous hiking and hot humid weather caused leg issues so now wear flight socks for hiking and long journeys all best b
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HapB - biotin? tried that? a natural supplement for hair and nails. Also kelp helps things grow.
Chisandy - well if body size did rule how much aromatase then I would be offering up a very unhealthy dose. This is all great information, thank you for sharing so much detail.
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I saw my GP this afternoon and had a chat about Staying on Letrozole or switching to Tamoxifen. I explained that it was such a difficult decision to make. She said protocol was after 5 years I should go on to Tamoxifen, She supports me to stay on Letrozole if that's what I want as long as my osteopenia doesn't significantly worsen, I am to have another Dexa scan in the spring. She did say that currently there is no data to support staying on Femera 5 years +. I have been told this over and over again.
So i have decided to stay on it. I have no idea whether that is the right choice ......
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Hi HapB
I have been told I am high risk for recurrence as stage iii. Yes, I agree with you we are guinea pigs here, it's a horrible decision; but I just feel it's better to stay on Femera. I have been warned that the cancer could become resistant and that is a reason to switch to Tamoxifen. I am exhausted from it all.
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HapB
well as far as I know I am NED. I have never heard of any test that can check resistance? It might not be available on The NHS as I am in the UK, Yes I am still at risk on the Letrozole, IDC er+ remains high for recurrence 5, 10, 15 years on apparently - that's the nature of er +.Because I am stage iii - it pushes risk (for me) further.
Unfortunately, beyond 5 years of Letrozole there is little data to check it's efficacy. When I asked him why some oncs say to stay on it - he says 'it's their opinion only' and not supported by facts/data. He is essentially saying there is NO more information! - although I keep trying to mine for it!
Tough - yes! Are you doing ok? are you on Femera?
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So where did this information come from? " IDC er+ remains high for recurrence 5, 10, 15 years on apparently. "
Is that for your particular case or is that for everyone? Not criticizing here just a little confused?
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BB you are HER2 neg right? In our case your MO is right, the percentage goes up a little after five years.
I can't/ won't take it anymore so I can't worry about it. Also cancer cells can change where they don't need estrogen anymore. Didn't you say you were quitting at five years? Maybe something better will come along
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