FEMARA
Comments
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Btw, I don't know if any of you have ever perused the weight lifter/body builder blogs on the topic of AI's, but it is immensely instructive. These people (mostly younger men) really know their P's and Q's about the effects of AI's and it's interesting to read how they caution each other to not stay on them longer than a few months before a competition because of concerns of long term damage to their joints, immune system and libido, to name a few of the areas that they all mention problems with when they start taking AI's.
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I'm glad I have the opportunity to take Femara?. I thank goodness every day that we have this drug to stave off this horrible disease. Sure I have side effects, but I am almost grateful for them, to me they say the drug is working and hopefully keeping cancer at bay. I am also giving myself monthly Zoladex injections to stop my hormones from working. When I get hot flushes I say to myself that's great, the Zoladex is working and I am not getting horrible periods any more either. It's funny really I've always been a glass half full person and thought side effects would be a problem for me. I don't know if it's my attitude or if I am really lucky to have minimal side effects.
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maybe its worse after chemo.
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kathec, Yes, I did mention the family history (mother, grandmother and 4 maternal aunts - the men all died of heart disease) and the fact that I was noticing some cognitive issues since starting the AI. He's a great denier of side effects and shrugged and said "you're getting older, it's not the medication".
I gave myself an AI holiday in May when I felt that the toxicity was getting overwhelming. Much to relief my thinking ability improved by the third week. My ability to focus, short term memory and executive function all were significantly better. I felt like myself again. By the way, many other issues improved, even some I hadn't connected to the AI.
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Kathec, I don't think it is so much that it is worse after chemo. I think it is more that it is just very individual. It may also be, to some extent, a matter of perspective. I have looked forward to my "crone years" since I was 15. I am enjoying the crone part so much that it makes up for some of the SEs.
That said, I also think that I have been lucky with the various treatments. I have no lasting SEs from the chemo and rads. I have extremely mild LE from the surgery, but not anything that slows me down. I do have bone loss, but we are monitoring and my docs are OK with not treating it for now. My other SE is joint pain, especially in my feet. The foot thing can be really annoying, but I find that if I just walk through it, it will ease up after 20 minutes or so.
Speaking of that, I hear you about making the docs "enjoy" some of these drugs and their SEs up close and personal. Last time I saw my onc, he asked about SEs and I mentioned the feet, to which he asked some nonsense which showed that he had no clue why women on femara get foot pain. I had to explain to him that the feet have many joints so when your foot joints ache, it means that your whole foot is painful. He winced. It had never occurred to him. I repeat, my ONC, not my GP or dermatologist.
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Momine - Did you read Mary Daly's Gyn/Ecolgy to find out about being a crone?I could never remember if it is hag or crone that comes first but feel I have earned whichever is the senior rank there.
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thanks, Momine, for that thoughtful response and revealing stuff about how your onc never thought of the feet joints! i also was kinda looking forward to getting older, just not all at once! kinda what it feels like... when i get old, i always wanted a clear purse or bag so i could find everything more easily. there's really no reason i can't do that now, except for the fact that i hope when i get older, i could care less about what people thought. not sure they care now. but then, maybe by then, there will be 3D printers everywhere, so you could just print out what you needed when you got there, eliminating the need to carry anything! so that is one reason to want to get older, too, just to see what happens...
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Lassie, no, no "manual"
, but I hear you on having earned whatever the highest rank is.Kathec, the overnight super-double-plus-menopause was definitely not fun, and there were times I despaired. Somehow I managed not to lose hope and even when it was bad, I worked on feeling better. Come to think of it, that was also pretty much how I got through chemo, actively seeking ways to feel better. Thing is that 2.5 years after having my ovaries out and going on femara, I really do feel a lot better for the most part. It is largely luck, but I like to think that steadily sticking to a decent diet, getting exercise, cutting boring and toxic people out of my life etc. have contributed as well.
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I just took my last letrozole yesterday!! I can't wait to see is side effects subside. I have only been able to tolerate 1/2 pill a day for the past 4+ years. I am so glad to be finished! I will report when/if things improve:)
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Yay Jacee!!! Good for you that you have gotten through and yes, please let us all know if there are any improvements.
Love n hugs. Chrissy
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jacee - that's great news.. Would love to hear if the side effects subsided!! Have 3 more years on my end.
Curious also, did your MO know you took 1/2 pill a day and was he/she ok with this?
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Just to reinforce what we all already know- I had my regular every 3 months oncology checkup today and all she kept saying was to "take your Letrozole, take your Letrozole!" which of course I faithfully am.
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dventi....Yes, my MO knew I was taking 1/2 a pill, though it wasn't his idea or preference. But, he agreed that quality of life was important. And he felt 1/2 was better than stopping it completely. I had gone to the Novartis website and read the trials that were done on Femara. The trials showed that total estrogen suppression occurred with doses as low as .5 milligrams. A 1/2 pill was 1.25 mg. So based on that information, and the fact that my side effects were so bad....I chose myself to go to 1/2 dose. Seems as though the overall survival or disease free survival rates were better taking the full dose. It was the right thing for me at the time!
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Jaycee, well, good for you, we all have to make decisions based on what we know and go through. I have often wondered, if there is only 10% of my breast tissue left in me after DIEP, why do I even need the Letrozole? That being said I will continue it at this point for my 10 years since it is recommended by my oncologist.
The hard part for me is that I have now gained 9 lbs since starting it in March, obesity is a risk factor for breast cancer as well, so which is worse? Ugh. Don't mind me, was up at three and now going to get ready for work. Insomnia is thankfully not happening every night but when it does, it certainly affects my outlook a bit..... yuk.
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Does anyone know if femara can cause muscle cramps?
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Yes, Yes, Yes on the muscle cramps.So my latest attempt to alleviate the letrozole side effects seems to be working. My husband and I sat down and had a long discussion about our diet and decided that we would both cut sugars, grains and potatoes our of our diet. I am very happy to report that I can move much more freely, my joints don't ache nearly as much and I'm no longer getting the muscle cramps that I was getting many nights. My husband is losing weight, but so far the change in eating hasn't helped me in the weight arena - but I don't care as long as I don't hurt as much!
In regard to the bone loss, I had a DEXA scan done a couple of months ago. For the most part my bones are in pretty good shape, though where the leg bone goes into the socket (I cannot remember the name of the area) I do have some loss. I feel comfortable waiting another two years before my next scan, though.
And yes - why oh why to oncologists - when we tell them what is going on with us - say, "Well, you are getting older". Yeah, I am, but pre-letrozole it was a pretty manageable issue.
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I say yes, too. Doctor told me to take a magnesium complex, which helped me. Sometimes eating bananas was enough though.
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For those painful cramps I take magnesium and extra calcium. I have also eliminated sugar and grains from my diet and am happy to report that my cramps have ceased. Taking the bedtime calcium did it for me.
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Hello, everyone. This is my first post on the boards, although I've been reading since my diagnosis in May 2011. Can't tell you how much helpful information and encouragement I've gotten!
I've been on Femara for nearly a year now, after 1.5 yrs of tamoxifen and a complete hysterectomy (thank you, tamoxifen) . I couldn't take the other 2 AI's -- side effects just too great. At times, the femara side effects seem too much. My onc told me SE's usually level out after just a couple of months. Not the case for me! They got much worse after about 6 months. Some days I'm just a basket case of all-over joint pain, swollen hands, fatigue, insomnia, hot flashes, nausea, and depression. Other days are pretty good and I feel much as I did before all this started.
I know the SE's I am experiencing are normal -- but I'm surprised that they come and go as they do. I take the pill at the same time each morning. I'm wondering how your SE's present themselves.
Thank you for 'listening',
SissyK
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hi SissyK - I've been on Femara/Letrozole since Oct '12; I didn't realize the morning nausea, sensitivity to smells (coworker's scents made me ill & I couldn't wear perfume anymore) and then after about 8 months, increasingly lengthy dizzy spells that graduated to a couple of days of all out vertigo. After the 2nd all day vertigo my MO sent me to an ENT - he ruled out any sinus or inner ear, so the MO allowed me to take a month off Letrozole and sure enough, all symptoms went away, including joint and back pain that I also had not associated with it. Unfortunately my risk would go back up without an AI, so I started taking it at night to reduce the dizziness and nausea. That worked, although I am still a bit dizzy and sensitive to smells like greasy foods or strong perfumes in the early morning. In August I took myself off it for 2 weeks when I reached a maximum pain level in my joints and back. Went back on after 2 weeks but I got some pain relief in the meantime. My pain comes and goes; I take a boat load of supplements every day including glucosamine/msm, now 2x daily. And I try to walk/jog when I can, and take the stairs at work, and get up from my desk and walk around and stretch. It's a continuing process of discovery, this drug and its effects. I agree, they seem to come and go.
Take care and hope you do well.
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Welcome, SissyK, and thank you for your first post on our discussion boards. We hope you'll continue to let us know how you're doing.
Warmly,
The Mods
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Hi Sissy and Margo and welcome! Yes the SE from the AIs sure can be horrendous for some and as Margo of is doing, taking them at night can help with some of the SE. Sissy, play around with the time you take your Femara as you may find taking it at a different time will help if not a lot then a little and every little bit helps a lot.........lol.
I have been on Femara for 4 years now and most of the SE have disappeared for me. The only ones that I notice are the hot flashes although they are greatly reduced and not nearly as intense as they were and of course the joint pain..........mine is not so bad now and a lot of it I usually put down to arthritis as I have that everywhere so not sure is its a SE still.
Hang in there girls, as bad as the SE are, they sure are a lot better than the alternative!
Love n hugs. Chrissy
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Thank you for your response, Margo. Hearing from others who actually take the meds is much more reassuring than from the docs who don't! My docs are wonderful and caring, but they just don't know some things.I originally took Femara at night, but insomnia and night sweats were horrible, so I switched to morning. I'll give noon a try . . . .
I, too, am trying to be more active -- walking, stairs, and picking that far away parking place at the store! And I've started Yoga, which I love. I have started taking fish oil and turmeric in addition to calcium daily. One doc wanted me to take an antidepressant, can't remember now which one, saying that it helped tremendously with hot flashes and would help level out my moods so I could better deal with other SE's. I detest taking pills, and antidepressants add their own SE's, so I'm trying to handle the situation with supplements and exercise.
Interesting about your heightened sense of smell. That has happened to me, too, but I hadn't put the two together!
Wishing you the best,
SissyK
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Thank you for the welcome, Moderators. This is a wonderful source of information and I thank you for all your efforts.SissyK
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I appreciate your encouragement, Chrissy. It is good to hear that SE's have lessened with time. I'll hold that thought!
Hot flashes are a huge aggravation. After the hot, I frequently feel sick and then get really cold. Without going off Femara, I'll never know if it is the drug causing them or the fact that I went through surgical menopause. Probably a combo effect. Ah, well. Winter is coming -- I'll just try to enjoy my own personal summers! Hubby laughs and says we're saving a boatload on heating bills!
Hugs back, SissyK
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Sissy, the intense hot flashes are most likely a combo of the AI and surgicl menopause. I had the same treatment, and the first 12-18 months were a bit rough. It has gotten better though. I get the occasional hot flash, but it is mild and infrequent. So there is hope.
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Hi Ladies,
Have been absent--but read constantly. Jumping back in after the question about muscle cramps. I have tried all the AIs and tamox and am back on Femara. Right now I am on a 4-week break. The SEs become out of control with pain--muscle, joint, bone; fatigue that is almost relentless-sometimes I have actually slept 36 hours; nausea, vomiting from a smell or a taste or a texture, insomnia alternating with the fatigue. I am 2 weeks into the break now and the SEs are slowly decreasing--but not all. My MO-I love this man-still talks some about fibromyalgia. i argued against it until I listened to a section on Doc radio last week. Increased numbers of fibro with low (actually does not have to be very low) thyroid and either a trauma or stress. The associated stress is commonly unexpected, relentless, sustained, and sudden. As was my diagnosis with BC as Mega Mass moved into my previously unoccupied Right Breast in 15 days. I will speak with my MO about a repeat thyroid profile.
I have tried taking Femara morning, noon, night-no changes in insomnia, the later fatigue, pain, nausea, or vomiting. I swear the drug was created by some skinny snot-nose PharmD who hates his mom. Otherwise something would come along without so darn many SEs.
Hot flashes. That is the only area I have the rarest of warm flushes. I started Effexor ER mid-toxic waste chemo to allow for a slow increase in dose. There is an off-label use of decreases hot flashes associated with AIs or tamox or surgical menopause. And-it has the lovely SE of helping with depression. I will NEVER stop taking this drug. NEVER.
I do find it a tad irritating that middle-aged and older men on testosterone supplementation are given an AI and told to take 1 tablet, break it in 1/2 and take each half over the course of a week. Had a male tell me he had no problem taking it. As in what was my problem. Lets see, 1 versus 7. He is on hormonal supplementation and takes it to decrease his man boobs and hope he does not lose too much hair or get too much back acne. Overall purpose is to get it up a bit longer. We take it to stay on the right side of dirt. Could I see a show of hands to administer harm to said male? Thank you.
The AIs make me older-I look old, feel old, act old. I have trouble moving around. Getting up from a chair is hard sometimes. Hurts to walk. I hate taking drugs. The narcs don't really work. I have now taken enough NSAIDS to kill my kidneys. Moving back to acetomenaphen to work on my liver a bit. Those barely take the edge off.
I know I should not complain. I am above dirt. And it is also freaking Pinktober. Seriously pink on potatoes is quite enough thank you. And my bank receipt. Spend the money on research instead of stickers. And don't shave your head in solidarity. It really does not help. There. Vented. Thank you.
Much love from a rare posting person.
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Hi Susan,
Thanks for the post - made me laugh out loud. Love the "creator" hating his mother. I feel that way some days about Femara. Especially when the hand pain started; it just sucks. But I must say that the new arthritis med I'm one has helped a lot with SEs. And my hot flashes have tapered off a lot. Still get the occasional one, but nothing like the first year, which was bad. I had chemically-induced menopause and Femara start up concurrently, so it was probably a bit more challenging than to have one at a time, but maybe not. No fun in any event. The fatigue is probably my biggest complaint. If I had to choose between chronic fatigue and chronic pain, I'd choose the pain as it's manageable. But there's not enough sleep in the universe to give me the energy I had pre-Femara. But at least I'm on the right side of the dirt!
Hugs to all,
Terre
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Hi Susan - thanks for a good laugh to start my day - you have the right attitude. You and others may have already discovered this but if not, it was very interesting to me when I had googled AI's and side effects I stumbled upon some body builder's blogs and their comments about AI's. Those guys are very wary of these drugs and caution each other not to use them more than a few months before a competition as they recognize the damage done to their joints, libido (yes, even these virile young men!), fatigue, and immune systems. One guy mentioned how he noticed his knees were starting to hurt just going downstairs.
Small wonder we all have so many problems when we are taking them for years.
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yeah! i found those blogs too! i think i am going to print them out for my onc for when i see him next. and just also they probably have a different effect on men too. its like i almost want to try some testosterone, just to help me build up my strength again, and my meaness....
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