FEMARA
Comments
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Bosumblues, thanks for the kind words. My friend does not need to switch. She isn't having any actual problems with letrozole. Her need to get on it carefully is based on generalized anxiety, not any specific side effects. I think she needs to stay with the program of being on the phone and ramping up, and she was about to take a full dose when her PCP told her not to take it due to her mental health issues. I do not understand why an MD would discourage a patient from taking 1/2 pill when she is on the way to a whole. The MD also told her that 1/2 pill is not effective and the Femara website itself says that a 20% dose is helpful, and I saw a study that said 20% is 87% effective. So at least she is on something. I am afraid my friend now has no protection regarding her cancer. Her MO may tell her to get back on it at some point but she had her oncology appt. a few weeks ago and isn't due. I left a message with both PCP and oncologist after talking with my friend, at least explaining the partial doses and where they were headed and why. That's all I can do. I just wanted to know what the effect of an 8-12 delay post radiation might be. Thanks!
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Catsrus, I took it at night first and had terrible insomnia, so I changed to morning. Just be willing to change if needed,...we are all different in how we respond to medication.
Goog luck and hugs, MsP0 -
WindingShores -
I had my BMX in February. I had post-op complications and was told to start the AI at the beginning of May. The MO did not seem to have a problem with the delay.
Anastrozole did not work for me, even though I titrated my dose. I titrated letrozole to full dose and have done well. There are side effects but they are manageable.
So far, while there are issues with my sex life, it exists. No so with anastrozole.
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Windingshores, it is so good of you to help your friend with her pill anxiety. The only other thing I can think of would be to ask her if she would like you to go to a doctor or therapist appointment with her, so you could be part of the team as far as this issue is concerned.
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Windingshores, it's a difficult situation. You are a good friend. I hope you are able to get your friend's doctors working with you. I agree with Shetlandpony, perhaps a visit to the doctor with your friend would be beneficial, it would show to them that she wants you involved.
Thanks, MsPharoah. I will see how I get on with taking it at night, but for sure I will switch if I need to. I will definitely bear what you say in mind. I'm not the best sleeper, so don't need anything else keeping me awake
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I have been on Letrozole since Nov. 2011. When I saw my MO in May, he told me that he thinks there is no benefit to take it more than the 5 years, but then I was 68 when diagnosed and now 72. I continue to have joint problems, but those could also be arthritis. Just glad for the added insurance against the BC. I see the MO every 6 months.
Vickie
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catsrus- mspharoah reminded me I should have also mentioned I take 20-25mg of melatonin every night, usually 10 or so minutes after the Femara (though there's no set time in between). If I don't take melatonin I have insomnia (I also have ADHD so have taken melatonin for years anyway). Melatonin is something that's possibly very good for breast cancer patients to take anyway (lots of info if you google it). I've found this is the best melatonin for me, by far, though unfortunately it's not the cheapest.
http://www.amazon.com/gp/product/B000GFHPLQ?psc=1&redirect=true&ref_=oh_aui_search_detailpage Maybe it's more effective for me because it's sublingual?0 -
Texas- I was reading your earlier post about muscle and nerve pain post rads, and pain post oopherectomy. Where did you have your pain? I have muscle and nerve pain post chemo (5wks PFC)and am on rads now. Will be doing Lupron, and wondering if that putting me in menopause might cause more pain?
Trying to get this sorted out, as I know when I get to starting the AI, the potential for more joint pain may happen. Thx!
PB
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pboi- The muscle and nerve pain was from my ALND surgery. Mine was extensive, so I've had a lot of issues, and the radiation exacerbated all of them! During and after chemo I had pain all over the place, but the consistent pains has been joint pain, mostly in my hands, knees and feet (like arthritis). I know now it's a side effect from menopause, so I think when it was happening during chemo it was my body starting menopause (at least partly). I saw an increase with the oophorectomy and beginning Femara, but the pain leveled back to where it was rather quickly. Now it comes and goes but so far is very well controlled with the glucosamine supplement I mentioned in the post you read!
I will say this- I don't think you'll really know what kind of possible ongoing pain you're going to have until you're well beyond chemo and rads. I'm almost 4 months post rads and 7 months post chemo and only now am starting to think I'm finally experiencing what may be at least close to my "new normal," though I'm sure things will continue to change even now! The healing and improvement process is sooooooo much longer than I expected. To give you an idea, the muscles under my radiated areas are STILL very sore, as if the whole area is bruised. They've improved greatly over the past few weeks, but I'm still absolutely shocked at how long it's taking them to recover.
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Snow. Do not give up. My oncology team included a therapist from the start. If yours does not-find one. I still go and probably always will. There are drugs to help. I take Effexor ER. It almost cured the hot flashes and helps with the depression. And have lorazapam for anxiety as needed. I will be glad to talk to you alone if you wish.
My feet still hurt like @$%$. I actually woke up last night with them feeling like burning pits of fire. I took neurontin for a year or so--but didn't like the side-effects and could not tell any difference in my feet. My hands are better-but I still drive 1-handed. Had a couple episodes of both hands going numb at the same time while I was driving and had to use my elbow to get to the side of the road.
And hair. Only good thing is mine still has chemo curls and is easy. Thin and dry but easy. Thinning constantly. I used to have my hair thinned!
Since the day my first port was placed and my now *#%&^%&@*@( ex-husband walked out I have been a purist. No men. No boobs. No sex drive. Guess it all goes together.
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thx Texas, very helpful!
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thanks ladies for recommending V-magic for irritation of vulvar. Purchased from amazon as suggested and it works!
Only thing recommended by Urologist was estrogen creme - since I am Er+ I refused to take it. This group is amazing!
Thank you!!
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Are any of you experiencing hair loss since starting Femara? If so, when did it start? How much?
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Hair loss... yes. Definitely. I've been on it almost 4 years now. When I vacuum I get these piles of hair. I can't remember exactly when it started - since I've also lost a considerable amount of my memory.
I take biotin now and it does help a little. oh yeah - how much. My husband says I've probably lost 1/4 to 1/3 of my hair. I had always worn my hair long, but had to cut it, as it looked ridiculous. Thin and dry and frizzy instead of the hair I had been accustomed to. In regards to the length of time taking this foul drug, my MO says the studies all show 5 years at this juncture. there is a research study ongoing regarding 10 years, but I'm not sure if it will be complete by the time my 5 years are up. I was on tamoxifen for about 6 months, but it was brutal. I couldn't breathe - ended up with blood clots, but I've gotten them on letrozole as well, so I think my blood just likes to clot up since the cancer. I'll now be on warfarin for the remainder of my life. Cancer - the gift that keeps on giving....
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Poppy K,
My hair is not so much falling out as not growing, particularly on top. Pre bc I had the thickest hair, I mean it was mad thick
, now I just cannot believe how fine it has become and quite soft too. I try to keep in short now and I struggle with the fringe, if it sticks up at all my scalp is visible in certain lights. I find it really depressing. I have been on Letrozole for nearly 3 years.What is your hair like?
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I too belong to the HAIR LOSS CLUB. Started losing it early on (nov 11/2011). Probably about a third of it. I have natural curly hair and have worn it short for many years (wash/wear style) but some days have to do a bit of creative styling. My MO also says that for me, 5 years will probably be it....Will welcome being rid of the few SEs, even though they have changed during the years.
Vickie
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Thanks for the responses.
I had a lot of fine, wavy hair, which I lost with chemo. When my hair came in again, it was very soft, fine and extremely curly. Right now, it's about 3 inches long if I pull it straight. I've left it alone because I don't want it to fall out, so it's in curls close to my head. I don't know if it's my imagination, but it seems my hairline is "receding". I've always shed a fair amount of hair, but I don't know if that's what is going on. BTW, neither of my grandmas (or grandpas for that matter) had their hair thin as they aged.
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You're welcome, Deventi -
I'm at a loss that they offered estrogen cream. I got an emphatic 'NO' from my MO...makes sense.
I'm still researching this 'half dose' I hear about from time-to-time. I would love to half-dose my Femara. Interestingly, the product insert for Femara does cite different doses, and clinical trials found lower than 2.5mg daily to be effective. I am so confused. Sigh.
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hi Everyone! I've been taking exemestane since February but I stopped almost 3 weeks ago thanks to feet, ankle, knee, arm pain and swelling. I'm feeling better so my MO wants to switch me to Femera. So I guess I'm hair checking this thread out to see how people are feeling on it.
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My hair is like the finest silky stuff on the planet. It truly has gotten thinner so I switched to a bob which helped. As long as I cannot just see my scalp I am dealing ok, but for my daughter's wedding I thought it looked like crap. Between that and the weight gain I stay positive by trying to just do what I can and focusing on being alive and all I can do in life. The walking really helps with my attitude AND the joints, not to mention who knows what I would weigh if I did not do that.....
Kellogg- everyone tolerates things differently so don't let anything scare you, it is still a good enough drug that many of us take it so that should say something for it.
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My hair got pretty thin while on Femara. It came back nicely in the last two years that I have been off the drug.. However in April I had a Reclast infusion for Osteoporosis and it started to come out in almost handfuls. Sigh....
JUST KEEPS GOING DOWNHILL.......😩
Artsee
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Tell me about Rogaine. My DH used it years ago when it first came out. It left his hair kind of greasy feeling/looking.
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Hi all - I shed a lot of hair (dermatologist said 1/4 - 1/3) 3 years before BC dx, from going thru menopause (around 47) and going on Blood Pressure medicine. Apparently BP meds cause hair loss even though they don't tend to publicize this SE. I had short layered hair which became hard to manage. My hair is fine in texture but I had tons of it. I have since grown it longer and it has filled in pretty well except I have a little more forehead. The derm explained that we go thru 'shedding phases normally' and of course, the loss of estrogen makes it that much worse. Being on Femara has not seemed to cause more hair to fall out but then again, I already had drained my body of estrogen. My hair dresser tells me he sees a lot of baby hairs when I go to have it trimmed. I did try Rogaine but I didn't like how it made my scalp itchy. I might have been allergic. I also got scared by reading that it causes you to shed more hair before it grows new hair but I know many women use it with good results. The one difference I see since being on Femara is that my hair seems a little more frizzy.
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BC2015...i've always had frizzy hair but mine too seems to be more so on Femara...thinking of getting a keratin treatment
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Does anyone here know of a post-menopausal bc patient with osteoporosis being treated with Letrozole/Femara for more than five years? I was post-menopausal and diagnosed with osteoporosis before bc.
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Hi all, Is anyone on Femara and Faslodex?
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Hi Ladies,
I'm a newbie here. Was diagnosed with DCIS in January, stage 0, had a lumpectomy. Radiation (16 treatments) in March-April. I started Femara at the beginning of June. My side effects are joint pain and terrible hot flashes. When I get out of bed in the morning I feel about 90 years old. (I just turned 55 and have always been in good health.) I'm also having eye disturbances; terrible watering and swollen. Not sure this is related and am visiting the eye doctor today. I'm strongly considering discontinuing the Femara. When my oncologist gave me the information about it he said without it I have an 8% chance of reoccurrence and with 5 years of it my risk goes down to 4%. I'm not sure that is enough of a difference to feel bad for 5 years. Would appreciate some insight from anyone!
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mommafletch you might want to give it some time. I've had relatively few side effects - some joint pain, some warm flashes at first. The warm flashes are gone now, and the joint pain in manageable. Many of the posters here report the SEs are better with time.
I find staying active really helps. On the days that I am a couch potato the joints are much worse. I'm going to start yoga today as I've read that really helps a lot.
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Welcome mommafletch,
You may find this section helpful on Femara and SE's: Femara
We really hope the side effects get better!
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I've had minimal side effects with femara. I am stiffer if I don't do yoga and or walk regularly. No hot flashes for me but I was already 10 years post menopause and take magnesium regularly...seems to help some women with the hot flashes. Good luck!!
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