FEMARA
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Thanks ThreeC, I guess one doctor giving you the whole story was just too good to be true. My endocrinologist told me to take Tums, but that is from rock I’m tired of Tums and it’s constipating. I’ll look into slow release, are you taking plant based calcium? He never told me to take magnesium or K2 Mk-7, I figured that out thanks to the ladies at the K2 Vit D3 topic. My PCP tested me for D3, I was at 10! And was living in a very sunny state just prior! Worked in the yard! So why two magnesiums and the B-12 testing? I am taking B complex. Do you have pernicious anemia?
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Is anyone here suffering from EXTREME fatigue. Not just tired after an 8 hour day but I mean to where every little thing is exhausting and it is all consuming, debilitating and crippling. Today I cleaned a bathroom and nothing more but even that took great effort. I did chemo and completed that four years ago in November. I immediately started the blockers and so never regained my pre chemo energy and have felt poorly since. My MO took me off the femara for 3 weeks and believed that would be long enough for the drug to be out of my system. There was absolutely no improvement so she had referred me to my PCP. Been there and done that and they push the antidepressants but they won't listen. I am depressed because I have no energy, it is not that I have no energy because I am depressed! I can't figure this out but I need to step up and have my PCP dig deeper. Something is not right here. If I knew it was the femara I would go off it in a heart beat. I exist but this is not living.
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NotBrokenJustBent - are you short of breath? Maybe it is your heart - Decreased estrogen can affect the heart. It took 5 months for most of my Femara symptoms to go away and I still have pain in my hands and fingers FYI. Chronic pain can cause fatigue.
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What Will You Tell Breast Cancer Patients About MA-17R?
https://www.medscape.com/viewarticle/864445
worth a read, signing in is simple and free
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Yes Marijen, I have a family history of heart attacks resulting in death at an early age. I brought that up to my PCP and will bring it up again. The last echo and stress test was 5 years ago. The blockers also shot up my cholesterol levels ridiculously high and I fought going on statins thinking foolishly that I could control it with diet. I have since succumbed to statins and their need. As always thanks for your feedback.
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I also have noticed being out of breath at times but the last few days I have noticed how pale I am. I look like death. Remember how simple life was pre BC? Now everything is so complicated and I feel I have to figure this stuff out on my own or at least direct my doctors on where we need to go.
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What is the brand of your statin? It could be a side effect? Or you could be coming down with something and don't know it yet. Cq10 has helped me a lot with energy. We have to be our own medical detectives.
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I am on Atorvastatin since insurance denied Lipitor but that is not it since I felt like crap thru chemo and thereafter, and only started this 6 months ago... but I will tell you that my neuropathy is much worse which is why I refused stains as long as I did. My PCPs say it does not cause or worsen neuropathy and that is BS! There is tons of info on the net that it does! My choices it seemed was to die of clogged arteries, go off of blockers and risk recurrence, or try to cope with neuropathy as best I can. Doctors love their drugs. Now they want me on two neuropathy meds, antidepressants and Metformin for high glucose. Who knows how many more to deal with their SEs.
I am worn down and dreading finding the energy to cook a meal. Anyone else tired of being dosed but afraid not to?
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Notbroken- how is your iron level? With the super paleness and the fatigue low iron could be the culprit. On the antidepressant front, low levels of serotonin, dopamine and/or norepinephrine in the brain can cause fatigue without “classic” depression symptoms. Stress (physical and emotional) are triggers for drops in these necessary brain levels. So when they want to treat it with an antidepressant, they’re not necessarily saying you’re depressed but that your levels are likely low and need to be increased. Fatigue is an early sign/symptom. If that is the problem the fatigue will recede with the medication.
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NotBroken, your post about extreme fatigue hit home for me. I have been on letrozole for about a month, and the old familiar, debilitating fatigue I had on tamoxifen is starting to set in again. I took a lengthy break between the two drugs, but even during my break, never completely regained my pre-treatment energy. Like you with cleaning a bathroom, I am done after one or two physically taxing activities for the day. And I sleep 8-9 hours a night. It's so frustrating. I try to accept it and manage my activities around it, but it's hard sometimes.
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As a contributing factor to the extreme fatigue, have you had your calcium levels checked? Extreme fatigue is a symptom of hyperparathyroidism. If your calcium level is higher than the 9's and you are extremely fatigued, get your PTH and Vitamin D levels checked. There is another conversation thread that discusses parathyroid problems that can provide additional guidance.
This website is also very good: www.parathyroid.com
Hope you get the fatigue figured out - I understand and I empathize - it's very frustrating.
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I am.having severe fatigue too. I see MO on Thursday. I also have high liver function levels, so I am.curious what they have to say about that. My general body aches are there, bUT my hands are killing me.
I went to a lecture by a local cardiac doctor. He spoke of the cardiac effects of chemo mainly. I'll look to find the information.
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2ndGenBCA, yes, my calcium levels do run just slightly over the parameter norms. Lula, perhaps it is my serotonin levels. HapB, Also maybe my heart given a strong family history. 2Fun, my liver enzymes are a bit high also yes, I too have pain in my hands but I had assumed that could be neuropathy. Kiki, I completely understand. Hang in there.
Thanks all for your thoughts. They are much appreciated. I will get this figured out yet.
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How do you sleep NotBrokenJust Bent? Sleep apnea is another cause of fatigue and daytime sleepiness.
Yesterday I read that high calcium may be an indicator of multiple myeloma (not saying you might have this), it's a bone marrow cancer....
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Two of the more common causes of hypercalcemia are:
- Hyperparathyroidism, an increase in parathyroid gland function: this condition is usually caused by a benign tumor of the parathyroid gland. This form of hypercalcemia is usually mild and can be present for many years before being noticed.
- Cancer: cancer can cause hypercalcemia when it spreads to the bones and causes the release of calcium from the bone into the blood or when a cancer produces a hormone similar to PTH, resulting in increased calcium levels.
Some other causes of hypercalcemia include:
- Hyperthyroidism
- Sarcoidosis
- Tuberculosis
- Prolonged immobilization
- Excess vitamin D intake
- Thiazide diuretics
- Kidney transplant
- HIV/AIDS
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I'm going on a 3 week vacation from femara under direction of my MO. Then if I improve I wI'll change AIs.
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2FUN, Hope you get some relief. I was off for 3 weeks and did not improve but I wondered if that was enough time. The fact that your MO suggested the same time period, perhaps that was not just a random period but based on fact. GL and please report back.
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Anyone on Letrozole AND zoladex monthly shots? I am having trouble figuring out if the side effects are from one or the other, or both. I have been on Zoladex for 14 months and letrozole for 12 months. My side effects are: bone/joint pain, peeling nails, and acne. Will most likely get off zoladex first as they want me on AI for 5 years. Also worried about osteoporosis. Has anyone been on both and found that getting off the zoladex helped? Not sure why but I feel like it is more from the zoladex. Can anyone share their experience? MO seems more open to trialing off the letrozole then the zoladex, I am just not sure it will help.
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So all of those side effects are from lack of estrogen. Zoladex is doing the most in that regard as it's stopping 80% of your estrogen production. The good news is that most of it should level off as your body adjusts to its new normal. In the meantime here are the strategies I've used: 5000mg biotin everyday for hair & nails, Clinique acne serum + their acne wash daily or the Clinique acne serum and alternating neutrogena clear pore cleanser/mask and neutrogena pink grapefruit foaming cleanser, Clinique also makes a mattifying moisturizer that helps a lot too. (I'm not a big department store/designer skincare/makeup kind of girl but after trying all the other stuff I broke down and tried the Clinique products mentioned above and it helped tremendously.) Solgar brand curcumin for joint aches and hot flashes. For the osteoporosis risk, make sure you're taking calcium and magnesium everyday. It's a bunch of big pills so if you'd rather take a liquid, Solgar makes one with both calcium and magnesium in it and it comes in 3 flavors: orange, strawberry and blueberry. Vitamin D is important too. I get the solgar products through The Vitamin Shoppe.As long as you're premenopausal they will continue the zoladex in combination with the AI. The AI is only taking care of20% if the estrogen your body makes while zoladex takes care of the remaining 80%. The alternative is no zoladex + tamoxifen.
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Lula, where did you get these percentages? Zoladex stops estrogen production by 80% and AI by 20%? If that were true they would be prescribing Zoladex for all of us.... please add a link.
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Thanks Lula, you gave me some good ideas to try. I was dx at 51 and it was unclear if I was post menopause or not because I was on continuous use of birth control for severe endometriosis (which is why they didnt want me on tam). Either way they decided to do the zoladex until they were more confident I was postmenopausal and do the AI. But now the challenge is figuring out when to stop the zoladex. I am at a large University Center and my gyn and MO are not in agreement. Gyn says most likely safe to go off zoladex then a month later have blood tests to confirm. MO says stay on zoladex for maybe 2 more years then try to go off. MO says the danger of going off too soon is that if blood tests show not in menopause then have to go back on shots and that can cause a rebound overproduction of estrogen and "tumor flare". Makes sense but gyn thinks I probably am post menopause so why stay on a med that further jepardizes my bones. I just feel my quality of life stinks right now. Was hoping that at least things might get somewhat better when I was able to get off the zoladex.
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marijen- ovaries produce 80% of our estrogen. Fat conversion by aromatase is responsible for the other 20% of our estrogen production. Since AIs only work by inhibiting aromatase they don't address the vast majority of estrogen production. That's why they only give it to women whose ovaries are no longer producing estrogen (women who are post menopausal, ovaries shut down with zoladex or ovaries surgically removed). They don't do zoladex for all of us (although that's certainly a valid & reasonable option to ask your MO about doing)because most women can take tamoxifen who are premenopausal. The bone deterioration issue with AIs can be a big factor in deciding which way to go especially for younger women. Then there are those like me and gkbuser who can't do tamoxifen and have no choice. All else aside, in post menopausal women AIs had lower rates of recurrence/mets vs tamoxifen by about 7 or 8%.
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And where did you get those percentages pls
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And aren't the adrenal involved? I have high levels of DHEA but testing shows it is not being turned into estrogen due to the femara. I have limited understand but this is what my endocrinologist has relayed.
And yes gk, my skin got a bit oily during the onset of menopause and then when the blockers were introduce I was having a terrible issue with extremely oily skin, clogged pores and bumps under my skin. It is definitely hormonal driven. Either the skin can get dry or adult acne can happen. Lula, I love that Clinique mattifying moisturizer also. Good stuff! Also Obagi makes a nice mattiying sun screen.
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The brain makes estrogen too. And ovary removal can increase risk oflung cancer. Tubal ligation has adverse effects too like migraines and suppression of progesterone which allows estrogen dominance. Still looking for Lula’s percentages...
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Sorry for the delay as i was busy being baseball mom. Here you go...(you may need to get your calculator out for the links to studies as they don’t do the math for you)
- 2 different GYNs gave me those exact numbers. In most of today's literature you don't see percentages only that ovaries produce the vast majority of estrogen. The adrenals via aromatization of androgens and fat synthesis and brain production being minimal.
Link 1- see page 70 under heading 'Sources of Estrogens and Androgens' : https://books.google.com/books?id=7DSYBwAAQBAJ&pg=PA75&lpg=PA75&dq=handbook+of+physiology+vol+2+extraglandular+estrogen&source=bl&ots=VpddIXE_13&sig=gxG7QHK6UwAlT2-ZftsVAIitDV0&hl=en&sa=X&ved=2ahUKEwiVtoucuvLZAhVY5mMKHdYaBhoQ6AEwAnoECAgQAQ#v=onepage&q=handbook%20of%20physiology%20vol%202%20extraglandular%20estrogen&f=false
Link 2 - BCO page on Ovary Removal - includes discussion on ovary removal + AI being more effective: http://www.breastcancer.org/treatment/hormonal/ovary_removal
Additional excellent information from BCO on all sources of estrogen and how the adrenals and aromatase factor in: http://www.breastcancer.org/treatment/hormonal/what_is
Link 3 - Percentages (90%+ made by ovaries) are quoted just under the yellow chart: http://holistic-online.com/remedies/hrt/hrt_estrogen.htm
Link 4 - decrease of E2 levels after menopause on page 9 & in table 1 on of 72: www.researchgate.net/publication/290477121_estrige...
Link 5 - Figures 1 & 2: www.academic.oup.com/humupd/article/13/6/559/68298...
Link 6 - Figures 1 & 4: www.ncbi.nlm.nih.gov/pmc/articles/pmc3197715/
Link 7 - www.obgyn.onlinelibrary.wiley.com/doi/abs/10.1111/...
I have more if these aren’t enough...
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What time do most people take letrozole, with breakfast or dinner. When is it better tolerated? My MO said it doesn't matter as long as its the same time of day. Any suggestions would be appreciated. Thanks!
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Hi Mudd. I take mine at 7 pm. That is nearly always a while after my dinner.
I have memory challenges -- especially with but not only with short-term memory. My husband has a daily reminder alarm function set on his cell phone to remind us that it is time for my Letrozole. As I take the pill, I put a little mark on a date planner calendar there to signify that I have taken my Letrozole for that day. My husband observes and reminds me (as I may need it) to mark the calendar. Soon after that time, I start wondering whether I remembered to take it, so I have to check the calendar for that indication. I make other marks on the calendar to signify dosing with other medicines with which I need to follow my dosing.
N.B.: My memory issues are unrelated to and had long preceded my Letrozole treatment.
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i take my letrozole in the morning with my calcium, vit K, and vit D. At night I take melatonin and magnesium. I(because I heard magesium can be a mild muscle relaxer). I dont know if taking it at night leads to better tolerance. I am interested to see what others say about that.
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I take all my pills at bedtime with a snack. Vit D, calcium + mag, synthroid (yes I know AM 30 mins before eating but I’d never remember it), letrozole, curcumin, etc.
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