FEMARA
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As to stuff like green tea, curcumin, and antioxidants in general, how long after cytotoxic therapy (systemic like chemo and local like radiation) is it safe for us to take them? After all, the point of such therapies is to promote, not prevent, oxidation because free radicals are basically the catalyst for cells--especially cancer cells--to be damaged to the point where they can’t proliferate. Hormonal therapy is a little different, as it seeks to starve estrogen-dependent cells either by blocking the receptors or eliminating the estrogen.
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My oncologist told me it was ok to drink green tea even during treatment. The amount of antioxidants wasn't high enough to make any difference. I didn't ask about curcumin, etc.
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So can someone explain more about what this Osteostrong program is? In particular, is it any different from what you can do at any physical therapy/fitness center? I need to devise a do-able program to maintain bone density.
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Shetlandpony....it is different from what you can do at a gym. It's osteogenic loading. I can do almost 800 lbs on the leg press. I woukd not be able to do this is a gym. You are exerting pressure on your bones and muscles that kind of break them down...and then they repair and get stronger. I go once a week. It's kind of hard to explain. They do have a web site and a Facebook page that can give you more info. I researched before I tried it and saw a lot of negative remarks...but they were from people who never tried it. I decided to try this first before taking any more meds. I'm on my 2nd month as so far I feel like my strength is improving and my hip pain is just about gone. My hips have bothered me for years. Of course it takes much longer to build bone. I won't know if it's working until I have another bone density test. I have never been disciplined enough to do the resistance machines at the gym and never knew if I was doing them correctly. If there's an Osteostrong in your area they give a free demo. I figured it was worth a try. I haven't seen anyone else on these boards who have tried it. I'm not endorsing it...just sharing what I'm trying.
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Thanks, Nash. A free demo is a good idea--if they don't do a hard sell.
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Thanks on the green tea tip, Nash54. I have two bags everyday.
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ShetlandPony...no hard sell for me. The founder is from Nashville (where I live). I understand it was something he developed for his aging mother. It has a very good reputation here in town. I know one other person (actually a friend of a friend LOL) who is also doing it and loves it. It's not a gym. It's basically 4 different exercises that take less than a minute each. You press the maximum weight you can and hold for 5 secs..you're watching this on a computer screen. I go at the same time each week and love the gal that assists me. She makes sure I'm in the right position for each exercise. I have osteopenia in my hips and osteoporosis in my lower lumbar. I was given a prescription for Fosamax and told to come back in a year or two....that didn't sit well with me so I started researching other options.
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Well, they finally faxed my DexaScan report to me--the worst score is -2.1 in my left femoral neck, which is wild because it’s not my left hip that sometimes bothers me but my right (and that’s -1.8). Oddly, my lumbar spine is normal. What’s even weirder is that I have NONE of the risk factors they list for osteoporosis: I’m not underweight, don’t have too low a BMI, never smoked, only occasionally took a glucocorticoid (maybe 6 or 7 times since age 26 have I taken prednisone, never longer than 6 days at a stretch), and the only fracture I had as an adult was when a car knocked me down as I was crossing a street.....and it was the right leg. The report didn’t mention montelukast or PPIs as risk factors.
So I have raised my calcium citrate to 400mg TID (even the “petites” are effing horse pills), 2000 IU of D3, and 400 mg of Mg. I have added a glass of milk per day (FairLife 2%, to cut down on the sugar and get another 370 mg of calcium) and after I get back from my cruise will be starting OsteoStrong.
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I have osteoporosis and three thoracic spine fractures from a fall (trauma many years ago, not from osteoporosis), as well as cervical stenosis (neck) and myelopathy. There are many weight-bearing exercises I cannot do. In fact, I cannot lift a half gallon of juice without consequences. Would OsteoStrong be possible for me?
My osteoporosis is pretty severe but I cannot take meds: I have tried Fosamax and Actonel (GERD), Calcitonin (salmon allergy), and Forteo (respiratory reaction with 1/20 dose). The MD will only start me on 10% dose of Reclast in the hospital office, premedicated and I am resisting. I used to take Strontium. Now concerned about heart and stroke risk with both calcium and strontium supplements.
I have lupus and cannot go in the sun so D3 supplements are important. Have dairy allergy so have to take calcium supplements, but based on recent new of risks with calcium supplements am going to switch to algae-based, though expensive.
I am on Femara. I can tell things are getting worse though I don't necessarily blame Femara. Things were getting worse before breast cancer.
Anyone else with limitations on exercise, diet, sun etc? I should post this on the bone forum but it was brought up here. Sorry for the tangent. I have a wonderful MD for this who has not yet abandoned me but I am not following through with the Reclast out of fear of side effects. I am 64 with imminent dental work.
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Windingshores....what recent new risks of calcium supplements are you referring to?
I think you could try Osteostrong , but it would probably just take you longer to build strength since you are starting from a more weakened state.
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I’m going to ask both my primary and my MO whether, if non-prescription measures are insufficient to prevent progression of osteopenia, I might be a candidate for raloxifene rather than an AI. By the time I start, I will have been 2-1/2 yrs out from my second knee replacement surgery, don’t have a-fib, and do take 81mg. aspirin daily--so perhaps I am not in danger of blood clots. And seeing how raloxifene is a SERM (keeps estrogen from the tumor cells but not from bones), its side effects might be milder--and since it was developed as an anti-osteoporosis drug it might be preferable to Femara. I have the ‘scrip for Femara but have yet to fill it--perhaps I should move up my MO consult to the week after Christmas? (It’s in mid-Feb., and I’m supposed to start Femara Jan. 1). Bisphosphonates are guaranteed to exacerbate my GERD to the point it becomes erosive esophagitis....which could lead to blood loss at the least and esophageal cancer at worst.
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I would take the Femara and investigate options for your bones. You don't have osteoporosis yet but if you do get it, you can do Forteo or Prolia. Reclast is an IV biphosphanate that won't aggravate GERD. But see what your oncologist says. I have severe osteoporosis and still take Femara. But I would rather be alive and disabled than the alternative. (I have afib so calcium and strontium worry me, as do some meds)
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My primary is leery of Reclast & Prolia, especially Reclast--he’s seen terrible fevers as a side effect, and any of the biologics & monoclonal antibodies such as Prolia can immunosuppress as well. He’s also seen horizontal femoral fractures after bisphosphonates. Forteo has to be (ugh) injected daily. No way. And ALL of them carry risk--not rare--of jaw osteonecrosis, usually triggered by dental work such as extractions & gum surgery (even root-planing) but sometimes spontaneous. My friend who is currently dying of a hip fracture after COPD began her slide 30 yrs. ago when she had osteonecrosis of the jaw, requiring surgical removal of the diseased bone and replacement by plastic prosthesis. But osteonecrosis of the jaw caused by bisphosphonates doesn’t respond to surgery. It means having open festering bone sores poking through the gums--and perhaps never being able to eat or speak again. And immunosuppression has even resulted in oral and other cancers. And at the very least, these drugs amplify the bone pain that AIs cause.Thanks, but no thanks.
If I can take raloxifene, instead of an AI with or without osteoporosis drugs, I’ll probably have to discontinue my antidepressant, Wellbutrin--but apparently, Effexor and Lexapro don’t interfere with the enzyme pathways by which SERMs work.
If I can’t safely take raloxifene instead, I think I’ll take my chances with osteopenia. At our age, there are always tradeoffs--and the big takeaway for me is that I’d rather not die of mets if I can help it, and I don’t want to add insult to injury.
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Hi ChiSandy
You might be interested in this study http://www.hindawi.com/journals/jeph/2012/354151/
I had increasing osteopenia for 8 years (I'm 62) and stabilised my hip and spine scores (actually increased spine), despite being on an AI, based on September's dexa scan.
From April 2015, I took daily Vit D, DHA and K2 at the levels used in the study, and strontium and magnesium a couple of times a week at the levels used in the study. Recently I bought an MK4/MK7 combination K2 supplement and take it every other day (it's expensive and dosages are not exactly defined). Calcium from diet.
My gp had wanted me on prolia early this year and I really don't want to do that – already coping with a pile of AI side effects. He was completely disinterested in my stabilised September scores but hasn't mentioned prolia again.
I like the approach/attitude of these researchers - interesting points in the discussion. Good luck with finding the right solution for your body. Increasingly I am trusting my own judgement about what is right for mine.
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Hi Starwoman! And Chisandy! I checked out your article and comments. I too am concerned about calcium, reclast and osteoporosis. I'm on reclast, supposed to get a treatment soon but endocrinologist cancelled due to reincision surgery. He said shouldn't do it while immune system is down. I may also may need a root canal and new crown. So far, I've had no side effects from two years worth of infusuions but... Now I'm worried, that was before cancer dx. It did improve my bone density but Femara has taken it down. Started at -1.9' up to -1.5 and back down to - 1.7. I like the holistic natural approach. And I very much appreciate your posts.I'm already taking, D3, K2, and magnesium so I ordered Vitacost stronium today. It sounds promising. Starwoman do you have a special summplement brand you like?
From drugs.com
Cases of osteonecrosis (primarily of the jaws) have been reported, predominantly in cancer patients taking this drug. Many of these patients had signs of local infection including osteomyelitis, and the majority of the reports refer to cancer patients following tooth extractions or other dental surgeries. Osteonecrosis of the jaws has multiple documented risk factors including a diagnosis of cancer, concomitant therapies (e.g. chemotherapy, radiotherapy, corticosteroids) and co-morbid conditions (e.g. anemia, coagulopathies, infection, pre-existing oral disease).
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I’ve had “problem gums” for decades (I go for tooth cleanings 3X/yr, and have a couple of “pockets” of 4mm), so that's a comorbidity increasing my risk for osteonecrosis, as is my having had radiation. I also am allergic to penicillins, sulfonamides, and the “floxins” (e.g., Cipro), so I’m leery of anything with immunosuppressant effects. I’m also asthmatic, and most of my colds turn into sinus infections & bronchitis. Not to mention GERD that NSAIDs turned into esophagitis and a gastric erosion for which I had to d.c. NSAIDs and take iron until my hemoglobin/hematocrit went back up to “low-normal.” But my T-score is -2.1 in the left femoral neck and -1.9 in the right, which isn’t even mild osteopenia, but more like veering dangerously toward osteoporosis. My friend who had osteoporosis broke her hip/upper femur (greater trochanteric fx) and wouldn’t come off a vent should she even survive a surgical repair, is currently in home hospice at an assisted-living facility--catheterized because she can’t even use a bedpan, since she’s immobile except for nurses occasionally turning her. And she’s just 3 years older than me. I’m terrified that could be me in 10 years, since my risk for hip fx is 22%. So I can flip a coin and choose how I want to be disabled for the rest of my life.....and they caught my cancer early. (This assumes I won’t get a recurrence or mets in the next 15 yrs.--but even on Femara the chance of that happening is 8%, almost my risk of having developed bc in the first place).
I’m still trying to wrap my head around the fact that from hereon in, there will be no more win-win treatment scenarios, no more zero-sum games. No more “if we do x, y will disappear and everything will be okay.” I WILL be disabled, starting after beginning Femara or any other AI. And I’ve had a much, much easier time thus far than most women here. DH has urged me to get my traveling in ASAP--including taking that next Bar Assn. trip to London/Lausanne/Paris in March, and--hopefully--the Tuscany trip we’re planning for July if I can still walk unaided. By this time next year I could be back to using a cane or even a walker.
The only bright side is that I will be able to ask my doctors to sign a medical-marijuana-card and HC placard application without feeling like a fraud. My HC permit for my bursitis from gluteal tears expired at the end of August, and it’s been liberating to have to park in normal spots just like everyone else. (Before my permit expired, I once got chewed out for parking in the only remaining normal spot because I was having a good day and wanted to save the HC spots for those in wheelchairs--I was chided, “you can park anywhere you want, so how dare you take away a regular spot”)!
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Starwoman, thanks for the link. But the study specifically excluded those taking medications that could impair bone health (and AIs fit that description--though the person thus excluded was receiving chemo). Also, the recommended exercises were all not only weightbearing (good) but high-impact, namely “jumping jacks and rope-skipping.” High-impact/ballistic exercise is specifically forbidden to me, as I have dual knee replacements which could be loosened as a result (and revision surgery could reintroduce the dangers of infection and blood clots, and that’s aside from cancer treatment complicating matters).
I’ve added 1200 mg./day of calcium citrate, which in effect is introducing calcium de novo--I’d been occasionally chewing Tums, but since I’m on a strong PPI for GERD don’t produce enough stomach acid to make calcium carbonate bioavailable and I might as well have been chewing Smarties or Necco wafers. I currently take 2000 IU of D3 (plus whatever’s in my multi) and 400 mg. of magnesium. Not sure how much K is enough--there’s some in my multi and whatever dark green leafies I eat. Not sure about strontium & DHA, or whether there are special contraindications for me.
But I am terrified of bone-strengthening meds (except perhaps raloxifene, assuming I’m not at risk for DVT or PEs), and so is my primary. He was DH’s chief resident, and DH says he’s one of the best doctors he’s ever seen. (After a battery of sophisticated heart tests came up negative, he was able to diagnose my intermittent mitral valve prolapse with just his instinct and a stethoscope). He’s been treating me for over 6 yrs, and my MO has seen me exactly twice, for consults.
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Uh Oh, I've been thinking about how it's become more difficult for me to read instructions and spell, and then I got to wondering what affect lowered estrogen has on the brain. It's not pretty.
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If it’s any consolation, I forget things (such as actors’ and athletes’ names, restaurants I’ve visited in other cities, stuff on my shopping list, my shopping list itself, taking the tote bags out of my car before going into the grocery store, friends’ birthdays, and sometimes even lyrics to my new songs or those I’ve not sung in years). And I haven’t even filled my letrozole ’scrip yet.
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I couldn't think of the word air bag, I could only make due with with pillows last time at the auto shop. That is becoming a daily thing. I do have a great memory for who said what when and where, but it seems to be a word thing and name thing. I can stare at instructions like windows how to and just can't deal with it. Constantly sending feedback, No This Doesn't Help! : ) and Too Complicated! Actors names are a big one. So somewhere down the road maybe there will be a third generation med. I want my estrogen back but maybe I had too much, who knows. I think women should be tested for estrogen levels routinely. I never was
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Marijen, that’s been bugging me for quite a while---why DON’T they test us for baseline estrogen levels before we start endocrine treatment and then periodically? Can it be that they just think that the worse the SEs then the more effective the treatment? Can anyone here give a more scientific explanation?
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lol - yes Cezar was able to interpret me without rolling his eyes. He was such a sweetheart I sent a raving review : )
Today I had to figure out instructions at USPS to print a label, egad, I faked it!
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Chi Sandy, you may not progress as much as you think, on an AI: not everyone does. I am on Femara as of last April but even a year before that my hips were -3 something . I did Strontium (Doctor's Best) but stopped due to blood clot risk, that was publicized in Europe. Trying to find an alternative practitioner to advise.
I cannot take oral biphosphanates- GERD. IV biphosphanates supposedly only cause osteonecrosis of the jaw rarely, but even my endocrinologist won't give me more than 10% at a time, premedicated, because I react to everything. You might try calcitonin spray- I am allergic to salmon and can't do it. I would most like to do Forteo and the shots are no big deal (somes in a small pen) but have a major respiratory reaction to a 10% dose premedicated with Benadryl and steroids.
Watch out for the MK4/MK7, which is usually soy based so estrogenic. I eat prunes.
I found it takes about 3,000 units D3 daily to keep it up but I cannot go in the sun due to lupus.
I recently heard that calcium in mineral forms is not good for cardiovascular health, that it can form plaques in arteries etc. That is pretty much what the reports on strontium were saying. I have a dairy allergy and am looking in to calcium from algae.
I feel like my goose is cooked, so to speak. I try not to think about it but the pain is worse all the time and I already am feeling somewhat handicapped. But the fractures from the fall, in my spine, are part of that too and in a weird way they protect me from doing things that could cause a fracture.
I do Tai Chi. Can't do anything else really. I tried last week- a cancer exercise group- cannot do.
You aren't too badly off yet in terms of bones. Some people don't get worse on Femara. I would take it if I were you but maybe your oncologist can tell you the risks on raloxifen. Let me know okay? I am going to ask mine in January.
Femara side effects in terms of joint pain, are worse in winter folks. Planning on mall walking soon.
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I've been on Femara for a couple of weeks now. I can not shake the nausea and heartburn. I take prilosec, and have for years...but have been eating Tums on top of that and there is no relief. It's still better than the debilitating bone and joint pain from Arimidex. This just plain sucks!
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maxdog, you can take the Femara with food and it might be better not to take at night when you're laying down - heartburn.
Windingshores thank you for all the info you posted. I have very thin blood - do you think strontium is ok in that case?
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What's MK4/MK7? I don’t take vitamin K--I eat green leafy veggies, use olive oil liberally, and drink green tea.
Went to my primary today to see about treating a giant zit on my back (basically, can't aspirate it yet so I'll sanitize it, treat it topically and take an antibiotic to make it resorb w/o coming to a head and popping). Asked him about taking raloxifene instead of Femara + bisphosphonate or biologic. He said the data about its SERM effect is equivocal, that it doesn't work as well as AIs or Tamoxifen for that--some docs use it in much younger women (starting about 30) at risk of osteopenia and/or bc (but not yet diagnosed with either) as “chemoprevention." He said my osteopenia, except for that left hip, is fairly mild and might not get worse, especially if I keep up the calcium/magnesium/D3 and especially do enough weightbearing exercise. Though running, rope-skipping and dancing is the best, I can't do jumping or bouncing or anything high-impact lest I loosen my knee replacements--so lots of walking will have to do (better, he says, than elliptical). He did warn me that I will probably get hot flashes even though I didn't get anything worse than night sweats during menopause. And he thinks I should start Femara as soon as I get back from my cruise, rather than waiting for Jan. 1. (Were I not going to Europe in 10 days, he'd have had me start right after rads ended). He also said that at 1200 mg./day, the cardiovascular dangers of dietary calcium are overstated for those with healthy hearts and high HDLs, as mine are. (I had the whole battery of tests 3 yrs ago and everything is normal). DH is a cardiologist and agrees (though he’s still lobbying for me to go on a statin).
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So many bad reports about Lipitor, I'm glad I refused to take it. A couple halves of walnuts each day really do the trick. There are other special foods that lower cholesterol. I did it so I know it works
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ChiSandy thanks for the info on calcium. The news has these reports all the time, yes to this, no to that, and I am distrustful as we all are.
I am glad you got the advice you did about Femara (and the reassurance about your bones). Why can't you take it before your cruise?
For exercise, I highly recommend Tai Chi, and also Nia. You can look it up. It is low impact as well.
Marijen it would seem that Strontium might be okay for you. I cannot find an endocrinologist anywhere, including some top docs, who know anything about it, which is weird because strontium ranelate has been used for years in Europe.
There is a disconnect between women and doctors on biphosphanates that is very disconcerting: I don't know anyone who wants to take biphosphanates. In my case, I said "what is the point of strengthening an already too thin bone structure?" That sounds more hazardous to me: at least my bones still flex. I wanted to do Forteo to strengthen and then fortify.
By the way strontium is supposed to both build and strengthen. But it does not work as well after biphosphanates.
Good luck everyone!!
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does most everyone who takes Fermara have higher level of cholesterol? My doctor has not checked for this yet I've been on it for eight months I just got a script for my cardiologist to have the levels checked. I'm just worried that it's pushed me into high cholesterol like I've been disgnosed with the start of osteoporosis
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My cholesterol is in normal range. My MO said any increase would be minimal and nothing to worry about.
This is from drugs.com adverse effects
Lipid Sub-study: In the extended adjuvant setting, based on a median duration of follow-up of 62 months, there was no significant difference between Femara and placebo in total cholesterol or in any lipid fraction at any time over 5 years. Use of lipid lowering drugs or dietary management of elevated lipids was allowed [see Warnings and Precautions (5.2)]. http://www.drugs.com/pro/femara.html go there for more info on Femara sides.
I worried about it too, but not now, after all what's worse. I am really against taking statins because of their sides and refused them when I had a problem years ago with cholesterol years ago. I lowered my cholesterol by changing my diet.
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