FEMARA
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Butterfly....completely agree! We should not have to decide between poor QOL and an increase in recurrence. We need to speak up.... Also I agree that exercise helps but unfortunately too many women find it difficult due to joint issues and other SEs. Good luck to all.
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I have no answers....just want to chime in with agreement. I think we are given very poor options and something needs to change. I have tried tamoxifen and Femara and had major problems on both. I don't know how to take these medications and feel okay, but what is the other option?? Not good!!!
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I'm curious about what determines which AI we're taking. My MO told me to choose one. I went with Arimidex because he said it was the least expensive. After reading anecdotal evidence that name brand Arimidex may cause fewer SEs, I'm paying out of pocket to try it. Too early to tell as I just started.
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Butterfly- The best I can tell is they all offer the same amount of protection IF it works for you. Femara/Letrozole is thought to be a tad more effective. My MO told me that. Don't know why. GL with it.
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Regarding comparative efficacy, I am aware of these head-to-head studies of aromatase inhibitors in the adjuvant setting of early (invasive) breast cancer, which may be of interest. There are caveats and limitations as usual. Those with pending treatment decisions should be sure to confirm understanding and applicability of any outside information with their medical oncologist:
(1) "FACE" - Letrozole versus Anastrozole
Smith (2017): "Comparative Efficacy and Safety of Adjuvant Letrozole Versus Anastrozole in Postmenopausal Patients With Hormone Receptor–Positive, Node-Positive Early Breast Cancer: Final Results of the Randomized Phase III Femara Versus Anastrozole Clinical Evaluation (FACE) Trial"
FACE Trial Results (2017): http://ascopubs.org/doi/full/10.1200/JCO.2016.69.2871
(Free pdf version available for downloading under PDF tab)
Note: Patients in this study had node-positive disease.
(2) NCIC CTG "MA.27" - Anastrozole versus Exemestane
Goss (2013): "Exemestane Versus Anastrozole in Postmenopausal Women With Early Breast Cancer: NCIC CTG MA.27—A Randomized Controlled Phase III Trial"
MA.27 Trial Results (2013): http://ascopubs.org/doi/full/10.1200/jco.2012.44.7805
(Free pdf version available for downloading under PDF tab)
See also, this more recent 2016 ASCO Meeting Abstract looking at ductal versus lobular histology:
Strasser-Weippl (2016): "Outcomes of invasive ductal (ID) or invasive lobular (IL) early stage breast cancer in women treated with anastrozole or exemestane in the Canadian cancer trials Group MA.27"
http://meetinglibrary.asco.org/content/165026-176
Findings in abstracts may be preliminary in nature.
[EDIT 1/2018: See also, Strasser-Weippl (2018): "Outcomes in women with invasive ductal or invasive lobular early stage breast cancer treated with anastrozole or exemestane in CCTG (NCIC CTG) MA.27"
http://www.ejcancer.com/article/S0959-8049(17)31411-9/pdf]
BarredOwl
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Hi, has anyone had bone loss while being on Femara? I have mild bone loss after being on it 10 months and my colesterol has also increased a lot. My doctor says I can switch back to Tamoxifen but I have been told by a previous Dr that is is less effective in preventing reaccurance in post-menapausal women. Thanks
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ndgrrl - all three AIs have been found to cause bone loss and increased cholesterol as possible side effects. I can only share my personal situation. I started taking arimidex this week and wiil begin Prolia injections next month because I'm borderline osteopenia. You can find articles on aromatase inhibitors on this site which will give you more information. Since I'm also post menopausal my MO wants me to go with an AI. It's like BC dominoes with one med sometimes leading to another.
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Thanks Butterfly, Did you doctor say why he felt you should be on an Ai instead of Tamoxifen? My MO says it is up to me. I really do not like her not telling me why she feels one way or another. My GP did tell me that statins will not work to lower cholesterol if the AI was causing it.
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ndgrri - from my readings and research aromotase inhibitors are typically offered to ER+ post menopausal women. I can't speak to the higher cholesterol levels and effectiveness of statins since elevated cholesterol is not presently an issue for me. As with any medication there are potential side effects. We have to weigh risks over benefits. If it were me, I would speak to my MO to discuss your specific medical stats and the risks and benefits of Tamoxifen, which is a SERM, over an aromatase inhibitor (Arimidex, Aromasin,or Femara.)
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My totally amazing BS freely recommends me staying on Tamoxifen although I am now 2 years post total hysterectomy. He says an AI would reduce my recurrence rate by approximately 3% and feels the definitely worse SEs are not worth it. He said almost all his patients complain of severe joint pain and many have hair thinning and higher cholesterol. He doesn't think it's worth it. However, note that at my last appointment last week, he did say I should definitely take the Breast Cancer Index test before I made a final decision as that test would give me my true numbers for my recurrence rate. My dad's best buddy is an oncologist and says he does about 50 BCI tests a week and feels they are accurate to almost 100% (.001 percent off). So September I get the test and decide then if 5 more years of Tamoxifen, swap to an AI or totally drop all hormone therapy completely.
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Hi, I have asked about the breast cancer index test and it is not available in ND yet. I am hoping in 1.5 yrs when I need it, that it will be available. Does insurance pay for it?
Lala I see your Dr gave you a percentage of how much more an A1 would protect you over Tamoxifen, I e-mailed my MO as she was gone when I was at the cancer center and had to see an NP who told me to just take statins for the cholesterol and when my bones thinned enough I could be treated for that too. My MO told me in the e-mail that there was no way to know the percentage that an Ai would benefit a person over Tamoxifen. I knew there was as my old MO told me the percentage that is why he talked me into going on Arimidex when I wanted to stay on Tamoxifen. Is that percentage based on a persons own risk or is it a general percentage? I am sooooo frustrated!!
I am currently not on anything as I was taken off Letrazole because of ear ringing- My ENT suggested I go off it, MO agreed, 2 weeks later still ear ringing. I been trying to get my MO to give me her opinion on what I should do not tell me it is up to me and there is no way to tell me what the percentage of benefit it would be to stay on an Ai.
UFFFF...
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I need to correct myself= My GP told me a heart healthy diet, that the MO NP suggested would not help my cholesterol level if it was being raised by the Femara, which appears to be the case as it has raised a lot in one years time with no changes, such as weight gain etc....
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Butterfly, I wish they would I did well on Als for about a year and then suddenly things went down hill fast. I switched to Femara and that added back and hip pain to my other issues. Don't know what I am going to do next. I did have an allergic reaction to one brand, tounge and throat swelling. I don't feel like I have a choice right now but to stop the Als.
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Brutersmom- have you tried Tamoxifen? I had minimal side effects on it.
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I did well on tamoxifen but changed to letrozole because it has slightly better efficacy. My thought process was that I could always go back to tamoxifen if I develop issues with letrozole, but so far, I haven't. Yesterday I ran and lifted weights. Today I rucked for an hour. Point is, not everyone "suffers" for five years on AIs. Some people do ok. So far, the only thing I've notice is occasional trigger finger and occasional difficulty with word retrieval or spelling. Basically nothing. And not everyone's MO strong armed them onto AIs or discouraged coming off if they are having issues. My MO gave me the information and full agency to make the decision with no pressure either way. He also agreed to switch me back if I ask, so I know it is entirely up to me and how I feel.
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Has anyone been put on Femara BEFORE radiation? For some reason, my MO started me on it before I ever saw the RO or had radiation therapy set up. I met with the RO today and she said it wasn't a good idea since the Femara could increase SEs of the radiation and would talk to my MO and let me know next Monday when I go in for my radiation planning, tattooing, etc.
And how soon do SEs usually start? I started on the Femara last Saturday. It's only been 5 days, but the only thing I've noticed is more hot flashes than I usually get, interrupted sleep at night, and fatigue. None have been debilitating, except today, the combination of poor sleep and fatigue caught up to me by mid-afternoon.
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Susan have you noticed any change in your Cholestrol, BP or bone thinning while being on Femara?
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Nancy618 - I didn't start Femara before Rads but started a week after starting Rads. I had finished the last of my 12 weekly Taxol a week before starting Rads so it was 2/weeks after last Taxol when I started Femara. My Rads Dr had no problem with me starting Femara and my Chemo Dr wanted me on as soon as possible. We are each different though -as are our Drs also.
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ndgrrl - I've been on Femara/letrozole for 7+ yrs and have had no changes in my cholesterol or BP.
My total cholesterol is high (has been for 20+ yrs) but is high because of the HDL level being quite high. The LDL is well within the normal range. Has remained stable since being on Femara/letrozole.
BP - Quite normal.
Osteoporosis - well, since on Femara/letrozole my osteopenia did progress to osteoporosis. Had been osteopenia for yrs so the progression to osteoporosis was expected anyway. (I have a huge family HX of osteoporosis on both sides of family. . Thus I can 'blame' Femara/letrozole on what would have happened anyway. I was 63 when DXd and now 70 so the body would have aged during those years anyway. Fosamax is apparently doing a good job of keeping 'it' from progressing.
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Kicks - - I didn't have Chemo, so that might make a difference too.
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I didn't have chemo either. Been 17 mos. for me on letrozole. Seeing my PCP tomorrow. At 8 mos. in, my LDL had soared and my HDL dropped (from 95 to 70, still considered “good" but not as protective). Triglycerides down, total chol. about the same. BUT weight gain has been my worst symptom. (I deal with insomnia by taking melatonin and alternating between Xanax & Benadryl, and using blue-blocking glasses for nighttime computer work & TV watching in order to have a more normal biorhythm).
Tamoxifen is not an option for me—I'm long past menopause, need Wellbutrin for depression (none of the Tamox-safe antidepressants work well for me, and especially Effexor, which was a nightmare. They don't call it “side-Effexor" for nothing). And heart disease runs rampant on both sides of my family—in fact, by the time my paternal grandma and maternal grandpa were my age, they were dead from heart attacks (it was grandma's second). My dad had two at 50, and the third one killed him at 72. Do I really want to take something that doesn't protect against recurrence as well as an AI and can cause fatal blood clots (not to mention endometrial cancer)? Nope. I'll deal with being fat on letrozole. As to bone loss, I was already osteopenic pre-rads. Can't take Fosamax because of GERD so bad that it'd put me at risk for esophageal cancer. Had one Zometa infusion, then switched to Prolia. Next Prolia is due in Sept., next density scan Nov. Hopefully, though letrozole can cause bone loss, it’ll show the two (by then three) treatments I’ve had will cancel it out.
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I sure don't need my cholesterol to go up. I've been at 260 for years, no matter what diet I'm on. I refuse to take statins. But currently my HDL is high in the 70's. Forgot what my LDL was, but I don't tink that was so good. I have been osteopenic in the past, but after taking Vit D3 regularly, I'm back to normal. I'm also taking calcium, so hoping that will help with bone health. I have my first bloodwork in August. I'm going to ask for a bone density at that time. I think it's been at least 2 years if not more.
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I had heard that letrozole can raise cholesterol levels, affect/effect(?) thyroid and cause weight gain. I was off my statin for almost a year (surgery & rads, then liver levels went way up). I was put back on last November because cholesterol was high. MO wants a bone density annually because I have osteopenia which is supposedly normal for my age. He also has me on calcium with D3. I am having labs on Monday. I'll see how the cholesterol is doing and if my thyroid is still normal. Will have my PCP order the bone density.
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Ndgrrl, No change in my BP. I haven't had my cholesterol checked since starting - will probably do that in a couple of months. I had osteopenia before starting, so my doc got me started with xometa. That stuff was a worse kick in the teeth than chemo. I couldn't get up for two days, but reportedly the bad SE for xometa are much more common with the first dose and it is only every six months, so I'll tough it out. I am not due for a recheck on that for a while.
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HI- Thanks everyone for the replys.
I have had two infusions of Zometa. THe first one was the worse, I felt like I had the flu. I am not sure why the CC does not warn a person this could happen. 2nd time I took Benedryl before and after the Infusion plus loaded up on water and they gave me some though the IV before and after that infusion- My side effects were much much less. I do not have Osteoporosis yet thought my bones are thinning from the Femara. I take Zometa infusions every 6 months for 3 years because of a study my MO had heard about that it would help prevent cancer from moving to my bones. I have not heard of many people doing this.
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all people are different, you may not get side effects. I can say that the only side effect that i recognize is insomnia, maybe a higher elevation of BP. And possibly my sugar, otherwise i cant complain. Been on this one for almost a year. Now my forgetfulness could be a possibility but not sure, been scattered since chemo.
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I have had sleep issue for years and tried various medication for it. Took a low dose of Elavil/amitriptylline for years before that quit working. Two months ago, my doctor gave me a prescription for hydroxizine, which is actually an anti-histamine, but it doesn't leave you feeling sluggish like benadryl, which also didn't work for me. For the first time in I can't remember when, I've been able to sleep well, and when I wake up early,easily go back to sleep. I've been getting 7-8 hours of sleep, have a clear mind, not tired during the day and have energy. However, since starting Femara, that has all gone to hell. I now wake up and can't fall back to sleep, my mind racing, and only getting 5-6 hours of sleep. This also causes brain fog and fatigue.
Has anyone else experienced sleep disturbances with Femara? Has anyone switched to a different AI and NOT had this issue? I've only been taking it for 10 days....so, do the SEs get worse? Or do they even out? I'm willing to give it a couple more weeks, but the disturbed sleep is a big thing for me.
Of course, I'm going to be starting radiation next week sometime, so I guess I'll be fatigued anyway, but I sure would like to sleep more than 5-6 hours a night.
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Nancy, I'd be inclined to give the femara a few more weeks before making a call. As for the radiation, I did it concurrent with my taxane chemo. It didn't make me fatigued at all. The rad onc told me that the fatigue was much more common in people who were less busy and more anxious. I don't know if there is any study on that, but I was definitely busy at that time and expressed concern about the possibility of fatigue because I just didn't have time to be fatigued. At least in my case, he was right. Having a positive mental attitude going in is half the battle.
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I get sudden onsets of fatigue even being very active. Will need to sit in recliner and close my eyes and stop moving or i feel like I'm crawling through molasses
Also now need 9 hours sleep at night to function. On this stuff 22 mos now
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My shrink would rather I take 1 mg. Xanax and 3 mg. melatonin than either Ativan or Benadryl for sleep. (Doxylamine doesn’t do squat for me; valerian root drops me like a plugged buffalo, but my MO says it’s estrogenic). Xanax has a short half-life so unless I am anxious all the time, it’s better than Ativan for sleep. And not only can Benadryl cause a hung-over feeling (as can Ativan), it carries an increased risk (at least statistically) of developing dementia. I need all the wits I can get—too often, I’m shy by half.
The blue-blocking lenses allow the body to make more of its own melatonin at night (blue light can confuse the body into thinking it’s daylight). That’s why if you can’t sleep after tossing & turning for > 1 hr., experts say you should get up and read till you’re sleepy…but read an actual physical book or magazine, not on a digital screen, and not watch TV
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