FEMARA
Comments
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Well, I understand why "insomnia" is listed as a SE for both the meds I'm on... It's because you CAN'T sleep with the excruciating back and hip pain, debilitating shoulder pain, and night sweats (throwing covers off only to be freezing minutes later). I am always very stiff and extremely tired in the AM because I'm not getting enough rest and my body is feeling it! My head hurts continually and I feel as if I'm 100 yrs old. I have NO energy and quite frankly, I'm sick of of it! My MO took me off Femara a week ago and said she would try me on something else in a week. I'm scheduled for another Zoladex injection November 30th. I've only been on these meds for a month and I have already made the decision that I am not going to continue taking them. No meds of any kind. My Dr wanted me to be on these meds for 15 years. Well, there's no way in HELL that I'm going to live with this quality of life. I'm going to live out the rest of my years being able to have energy to spend with my kids. I'm going to allow my body to enter menopause naturally; not have it forced upon me. I'm going to lower my estrogen in a healthy / natural way, and I'm going to live the rest of my life to its fullest. Whether I live another 5 years or 25 years... I'm going to enjoy what is left and leave the specifics up to the one who created me! If there is anyone else out there who is rejecting the hormone therapy, I'd love to have a friend to talk to as I go through the rest of my journey. :-)
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Owens69 - sounds like you are young and your doctor is giving you the latest and greatest treatment based on SOFT and TEXT trials which state that OS + AI is better
instead of abandoning hormone therapy altogether why not try OS + tamoxifen? I found that to be a way easier combo than Femara + OS - I know there is increased survival benefit (4%) but better than nothing. If that doesn't help you can go to tamoxifen alone - still protects even if you have estrogen floating around -
just some options if you cant live with the instant menopause (agree it is HORRIBLE) and AI pains
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Owens69 - I am not rejecting it at the moment because I am stage IV and because I've been able to manage the SE's. Also, if you were hell bent to try to stay on the letrozol, I would tell you that the side effects evolve over time. The transition to no estrogen can be hard but after a while things can settle down.
However, if I was Stage I and I had taken care of the local tumors as you have, I would not take the hormone treatments. The statistical improvement in survival is not that much and, should the cancer return you still have the option of going on letrozol at that time. Doctors seem to underestimate the side effects and the importance of QOL and over estimate the significance of a small statistical improvement. You can certainly achieve that same benefit in healthier ways, like exercise and eating well.
>Z<
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Thank you for your encouragement, Zarovka. I am 47 years old and prior to meds, was in the beginning stages of menopause. Still having periods, but very light and shorter in duration. I'm just going to let this happen naturally, and if I do get breast cancer again, will deal with it at that time. My Grandmother had a Stage I breast cancer lump cut out 27 years ago. She refused chemo, radiation, hormone therapy, etc... She is now 84 and has had no reoccurrence. I'm hoping for the same thing!
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having surgery to take care of the tumors takes care of the cancer Locally - the reason they put us on hormone therapy is that in the event that some cells escaped - hormone therapy is our best defense to wipe these out (this is not a scientific explanation!). Owens with 2 positive LNs you most likely would have a much greater benefit to hormone therapy than someone who is stage 1 no nodes. Just food for thought. At the end of the day you have to do what is right for you.
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I was diagnosed stage 2a grade 3 and one sentinal made positive with extra capsulated extension. ( which my MO kept telling me not to focus on). I did the chemo and my MO kept telling me my biggest bang for my buck was hormone treatment. I ache but it subsides, my hair is thinning, I have now high cholesterol and the beginning of osteoporosis. But I fear not taking the drug. I also wonder why was chemo not the biggest bang for my buck??
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Femara ladies,
Need your insight....I tried Arimidex and had horrible SE's. Doc move me to Femara about two weeks ago and have tolerated it well until yesterday. I have the aches but try and exercise and take supplements but just started gettng sick..nausea (bad)...overheated and hot flashes that would never end. Could the side effects be fine for the first 2 weeks and then kick in? I went thru early menopause years ago but this feels awful all of a sudden. Bug or Femara and do these SE get better after how long?
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For me the side effects of letrozol were really bad in the beginning and then got better, then got worse, then recently got better with the help of a lot of complementary therapies.
The side effects were also compounded early on by an undiagnosed UTI. I was really sick, blamed the drugs, walked around with a nasty and dangerous UTI for 4 -6 weeks until a really smart doctor asked me to pee in a cup. Apparently, UTI's can be more frequent on letrozol because it makes the lining of your urinary tract thin.
Accupuncture, yoga, body work and lymphatic drainage have all helped with hot flashes. I just started magnesium as well but I can't say yet whether it is working.
I would definitely give it time, check for infections, and consider some alternative treatments.
Hang in there.
>Z<
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thanks for the insight on the UTI as a possible result of the Femara. I have been having issues with urgent, frequent urination since I started on letrozole. The only other SE I have is being woken up at night with hot pins and needles in my belly and forearms. This subsides in about 10 minutes. No joint pains, and I will be on it for one year Dec 15. I also take meds for rheumatoid arthritis, so this may be a reason I don't have the joint pain? Wishing everyone successful healing.
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10 minutes of pins and needles and hot flashes. Oh good lord. I was complaining and moaning over an occasional intense 30 seconds of hot flashes. It's worth exploring the alternative space for fixes. There are no end of ideas on the internet and from your doctor. Something improved things for me. Still not sure what.
>Z<
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Lots of UTI's here too going into my 5th year now on Letrozole. Some hair thinning too and I agree that s/e are worse in the beginning and then settle down to be manageable for me anyway. yes, also that horrid pins and needles feeling, sweating and flushes too, but I am on Venlafaxine which definitely reduces the frequency.
uti's have far and away been the biggest problem I have had.
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Carlson's vitamin E suppositories work wonderfully for vaginal thinning and preventing UTIs.
Carlson Labs, Key•E Suppositories, Natural Vitamin E, Soothing Inserts for vaginal or rectal application.
Of course, avoid all sugar and simple carbohydrates while fighting infections.
Unsweetened cranberry or black cherry juice can help too.
If you do take antibiotics, be sure to finish the full course, so you don't get an antibiotic resistant UTI.
The AIs are powerful drugs that deplete the body of estrogen. Only on depletion, do we recognize how important this hormone is for quality of life in many realms.
healing regards, Stephanie
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Owens....I have rejected hormone therapy also. I would be happy to talk more details with you.
Momine....I understand conventional docs feel this way. I just don't buy it.
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I refilled my ‘scrip a week ago, and squealed with delight when I opened the paper bag and saw the familiar square Roxane bottle. (It was a buck cheaper than Teva as well). I haven’t had a night sweat in days, and my startup stiffness lasts only long enough to walk into the next room. I will fight like crazy to make sure I get the Roxane version. If I can’t, I’ll dip into my stash of actual Novartis UK Femara. (at $588/90 days from canadadrugs.com, it’s less than 1/4 as costly as buying it from a brick-and-mortar in the U.S.). If Roxane ever stops making letrozole, I will try to get a prior auth appeal for Femara.
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dtad, that is your prerogative, naturally. I would only like to point out that it is not a matter of "feeling."
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Hi ladies: I've been following for some time. I have some questions for any who know, and also would like advice on what to ask my MO next week about side effect managment and the differences in risk reduction between Femara and tamo, (I listed my quests. below) and also on what to expect with side effects for me personally. If anyone has any insights, I would appreciate it. Posting this in the Femara and Triple Positive forums.
If you start out the gate with lots and lots of serious joint pain (head to toe), does it go away later? Did anyone try acupuncture? I know my med center has a clinical study going for acupuncture and AI joint pain but I don't know if I will qualify, etc. Also, I want something that works, not a placebo!
I started Femara (a generic though) Sept. 8, and within 2 weeks,day by day, with things getting progressively worse, I had serious joint pain in all joints from toes, ankles, knees, hips, hands , fingers etc. Stiffness was bad in the morning. I also had a terrible headache and muscle pain. I had started back to hiking and was going to yoga, but the pain was so bad I really didn't feel like going at all--and walking and hiking are favorite activities of mine! I also felt lethargic and had no energy, and my cognition seemed sluggish.But, I was also dealing with a long-term sinus infection, so it is hard to sort.
At 4 weeks on Femara I was taken off because of the persistent sinus infection (since June, when on chemo!) that I can't get rid of, and I'd at the 2 week Femara point I had also been put on a different, very broad spectrum strong antibiotic and they wanted to just give my body a rest and try to sort out what was happening. But, given that the joint aches started before the strong antibiotic( I only had that one during the last 2 weeks of the Femara), I am confident it was the Femara. Hot flashes were also intense--at least once an hour, 24-7 . And, within days of stopping Femara, the joint aches all went away; by a week out off Femara, they are gone completely. The sinus infection is still present, though improving I think. My headache is still present but a lot better; I think I had "two" headaches: the one I've had from teh sinus infection for some time, and a "Femara" headache on top of it.
I am wondering if switching to Tamo is a better choice for me. I'm talking to my MO next week. My doctor doesn't switch better AI drugs, just classes of estrogen blockers. I do have genes which promote growth for colon, head and neck and breast cancer, and I've had colon polyps on 2 occasions and a parotid gland pre-cancerous tumour and of course BC, so the genes are active in me and despite a healthy lifestyle (other than extreme stress at times, which I am working on to learn to manage better), I apparently am a growthy person. Also have an IGF growth factor gene so am now eating vegan. I am not sure how much my MO is weighing these genes, as I tested privately for them . But I will present them in writing to her. It just hasn't been front and foremost to date. I want the AI or tamo drugs, but also want a drug that I can sustain.
These are my questions (for my MO and/or if any of you know). Are there are others I should ask? If anyone knows, I would appreciate help. Or, if there is another better forum in which I should post?
1) What is recurrence risk for HER 2+ women without metastatic disease without use of hormone blockers? 2) What is difference of my overall risk of recurrence, of Tamo versus an AI? 3) What is risk of uterine etc cancer due to Tamo in post-menopausal women? (I have an ovarian cyst and one ovary removed years ago.) 4) What complementary treatments have helped people, besides keeping up exercise? Acupuncture? Supplements ? (if so, which ones--I don't know if she will know, and I already use B vitamins, D, K, alpho lipoic, co-Q-10, zinc, green tea, vit C, Omega 3); meditation and yoga (doing that already). I have CBD oil I was using during chemo and am not averse to using that if it would help manage SEs.
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Hi, Zoziana. I always bring my onc a list of questions, too. Your list looks good. I hope you are at UCSF or can get a consultation there, since you have the complication of the genetic mutation. I learned recently that I have one that confers an increased risk of endometrial cancer, and I am going to ask the genetics doctor at my cancer center if my having taken tamoxifen impacts my risk level. It would be good if you and your onc could get a cancer genetics doctor on your team
I agree with you that it is important to do the endocrine therapy, and at the same time address quality of life and being able to exercise. Definitely find out more about the acupuncture trial. I wonder if your side effects might lessen as your body adjusts. Aromasin is a different kind of aromatase inhibitor from letrozole/Femara and arimidex, so you might ask about trying that. I think it likely that tamoxifen would be easier on you, but it may not be recommended for Her2+ .
It's vitamins D3, right? About 2000 iu split dose?
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Hi Shetland: Your information is helpful regarding getting a cancer geneticist on board. I don't even know if our med center has one, but I am going to look into this. And I am going to present the info I have in writing; it may be helpful down the road in getting a second opinion, etc. I am not at UCSF but may be able to get a second opinion consult there later. First, I will try to work within my HMO. I do think my MO is intelligent and responsive, but it isn't a research center so there are limits. My Vit D is D3, but I was started on 4000 a day due to osteopenia. My levels now are around 75, which they like. I'm tired but realize I must forge ahead and figure out this next step properly, as best I can!
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Calcium Intake From Diet and Supplements and the Risk of Coronary Artery Calcification and its Progression Among Older Adults: 10‐Year Follow‐up of the Multi‐Ethnic Study of Atherosclerosis (MESA)
http://jaha.ahajournals.org/content/5/10/e003815
Could Calcium Supplements Be Bad for You?
New research shows that people who take calcium supplements are more likely to have calcified coronary arteries; dietary calcium is protective.
Terry GraedonOctober 13, 2016
People who take calcium supplements are more likely to end up with calcium in their arteries. That is the conclusion from a new study that took 10 years to complete.
The Multi-Ethnic Study of Atherosclerosis:
More than 5,000 people between 45 and 84 years old participated in the Multi-Ethnic Study of Atherosclerosis (MESA) over the course of 10 years. They filled out questionnaires about their dietary habits and supplement use. Coronary artery scans were performed to detect calcification. About half of the participants had a second scan at the end of the study.
More Calcium from the Diet, Less from Calcium Supplements:
The researchers found that those who got the most calcium had the cleanest arteries–unless it was coming from calcium supplements. In that case, they had the most calcification.
Calcium and Atherosclerosis:
Atherosclerosis is the medical term for hardened arteries. But, you may wonder, doesn't that have to do with plaque in the arteries? Well, yes it does. Even though doctors have focused most sharply on cholesterol in arterial plaque, these lesions actually contain more calcium than cholesterol. It is the calcium that makes plaque-laden arteries "hard."
When coronary arteries become calcified, people are more likely to develop heart disease. This study confirms the results of other research implicating calcium supplements in the development of hardened arteries. You can read what we wrote about some previous studies here and here. You may also want to read what else we have written about these findings from the MESA study.
Journal of the American Heart Association, October 11, 2016
What About Strong Bones?
Most of the people taking calcium supplements are doing so because they believe this will prevent bone loss and protect them from fracture. If only that were the case!
While a certain amount of calcium is essential so that young people can develop healthy bones and older people can maintain bone strength, it turns out that excess calcium from supplements is not associated with stronger bones that don't break. A meta-analysis of 59 studies found that people taking calcium had very modest increases in bone mineral density, one way to measure bone strength (BMJ, Sept. 29, 2015). These gains did not last beyond a year or two, however. The researchers concluded: "for most individuals concerned about their bone density, increasing calcium intake is unlikely to be beneficial."
The Take-Home Message:
The bottom line is complicated in theory, but (luckily) simpler in practice. To benefit both your heart and your bones, be sure to exercise every day. That gives your bones the resistance they need to stay strong, and it keeps your heart pumping and your blood vessels in shape.
Also, eat a varied diet with lots of vegetables and nuts, along with some dairy products if you tolerate them. You can get adequate calcium from almonds, beans, broccoli, bok choy, corn tortillas, kale, mustard greens, spinach and Swiss chard. Tofu is a good source, too. If you are not vegetarian, add canned salmon and sardines, with the bones.
Either the Mediterranean diet or the DASH diet will make all this easier. If you'd like to learn more about these dietary approaches, you might want to read our book, The People's Pharmacy Quick & Handy Home Remedy. It describes how to follow these diets. You might also want to listen to our Show 752: Bone Vitality, in which we discuss how to strengthen bones through diet rather than through calcium supplements.
Vitamin D is also needed for strong bones and healthy arteries. You can learn more about vitamin D supplements and the British recommendation that all adults take them here.
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Thank you for posting the calcium info! I had read that too. My first onc said my bones were thinning and I needed to add calcium to my supplements. I said OK but just upped my intake of dairy instead.
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I had my bilateral mastectomy at the end of December last year and started Letrozol in mid January. By April I was ready for the nut house. It messed with my brain terribly like PMS on steroids. I was so depressed I didn't care if I did die. (That's not me!) When I could stand it no longer I threw away the bottle and returned to my doctor. My friend had just switched from Letrozole to Aromasin and was doing better so I requested the switch and the doc agreed. It cost WAAAY more but I am me again on Exemestane (Aromasin). I have gained a LOT of weight
( and am VERY fatigued but I am ME again.I was diagnosed with Degenerative Joint Disease about 20 years ago so have known joint pain for decades and I do have some bone thinning. I began taking Reishi Mushroom capsules because a friend's son-in-law who is a doctor saw his stage 4 cancer patient go into complete remission with no signs of cancer after being on it. As a result of taking it I have almost no joint pain and do feel better otherwise!
About cutting pills in half - don't do it unless the pill is scored. Scored pills are designed to have the same amount of medication in each half - unscored pills don't have this.
For those hating Femara/Letrozol (like me) - don't just give up! Studies show we may need these meds up to 10 years to keep reoccurance at bay. I made a switch and it worked for me.
Dr. Marc S Miccozzi says this about breast cancer prevention - "ripe fruits and vegetables full of vitamin A, anthocyanins, and carotenoids -- which actively prevent and fight cancer.
Let the authentic colors of fall remind you about real breast cancer prevention. And follow this powerful, daily regimen for natural breast cancer prevention:
A high-quality B vitamin complex
10 – 15 mg each of carotenoids lutein and lycopene
500 mg of vitamin C (in two divided doses)
10,000 IU of vitamin D
400 IU of vitamin E
400 mg of magnesium
200 micrograms of seleniumAlso consider anti-cancer herbal remedies like curcumin (turmeric), ashwaganda, piperine, and others.
Take these supplements daily along with eating a well-balanced diet with plenty of fresh, colorful fruits and vegetables."
Hope this helps someone.
Adrienne
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Now am 2 weeks post op bilateral implants and doing okay. Scared to death to start the femara. Had switched from anastrozole due to side effects and put off starting the femara longer than I should. What is best time of day to take? Have trouble sleeping, so hoping does not cause insomnia. Appreciate you help.
Thanks for the calcium note. Very iinteresting.
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i started taking Femara in the am but was struggling with hot flashes. I switched to 6 pm and it's better, sleep through most of the flashes. I do wake up with hot pins and needles which take a few minutes to clear, but otherwise doing not so bad on it. I have been on it for about 10 months now. Good luck!
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I've had just about every side effect but hot flashes....up until a few nights ago. I've been taking Femara about 8 months or so and all of the a sudden I'm waking up hot and sweaty?? Also, this might be TMI, but my body odor seems to have changed. IDK, maybe I'm noticing it more because of the sweats, but it is odd.
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tangandchris, I was taking Aromasin and my body odor was awful!! I asked my MO about it and he said chemo and/or the Aromasin could be responsible for it. He said that chemo changes the body in ways we don't even know. I had to stop Aromasin due to back pain. I'm now on Femara which I take at night due to nausea that I had when taking in the morning.
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Haven't posted in awhile. But read often. I have had shoulder, arm pain for the past month. Nothing horrid, and only when I cross my right arm to the left. Of course being the hypochondriac that I am I of course am sure this is bone mets. (Which of course kind of raises questions why I only having pain in certain positions with my arm. Man I hate what is disease does to your mind) Then I read these post and realize that many of your have experienced muscle/bone pain especially on the side of your radiation. Which is where mine is. It is so easy is go crazy. It seems once you dip your toe into the cancer world every pain is a new cancer. It would be so nice to have my first reaction to a new ache and pain be that I'm 60 with a strong family history of arthritis, instead of always going to the darkest of places. Thanks to all of you fortalking me off the "edge" just like this whole organization did when I was first diagnosed. It's a great service that you all, we, provide
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"Stinkier" = yes when I was on Aromasin. Did not notice this with Femara.
Aches and pains that make your mind go places = yes. Sad.
Hugs to all that must endure this. We don't deserve any of it. At. All.
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kkuziel I'm currently undergoing physical therapy for shoulder / back pain, the PT says it's definitely radiation. A lot of it is stemming from tight pectoral muscles too. I've only had three visits but I got some good exercises, just learned about the joys of using a foam roller. Maybe see if you can get a few appointments?
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I have been taking Femara since December 2015 and have been on Zoloft since my diagnosis in March 2014. I have not had any signs of a harmful interaction between the two, and none of my many doctors (all of whom review my list of medications every time I have an appointment) has ever mentioned an issue.
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Does anyone here get Prolia shots to prevent bone loss when their T-score is still in the normal range? I just had my DEXA showing a 6% loss in lumbar bone density over the last 2 years. I have only been on Femara for about 8 months, so I don't attribute the loss to this drug, but worry about losing bone mass faster now that I'm on Femara. I'm still well within the normal range, but would prefer to stop bone loss before I reach osteopenia. I have an appointment with my PCP this afternoon and would like to ask for Prolia. My health insurance won't cover it, but I have prescription insurance that will cover it if prescribed.
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