FEMARA
Comments
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Hi Sam.....I'm 66 and still teaching. The aches and pains are doable for me as long as I exercise. I actually lost a lot of weight but now it is starting to stabilize.
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I had the weight thing explained like this: the Femara is killing the estrogen in your body that is generated by your fat, so----your body doesn't want to deplete all it's estrogen so it stores more fat. Weight loss can be done but you have to be very regemented & I'm not!
For the person who is afraid to start it (sorry I switched pages & didn't remember to note your name) I take mine at night, helps with daytime fatigue for me immensely. You just need to it...if you have too many SE contact your onc & have them switch you to one of the other ones. ChrissyB is a perfect example-she was having a VERY unpleasant time on her 1st drug. She was switched to Femara & has MUCH less problems. We are each different.
For me, I will do whatever is necessary to try to keep the beast at bay. My diagnosis will have been 5 yrs next year. I AM WAY EXCITED TO PASS THAT MILESTONE!
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Sam - I've been on Femara for over a year. I did quit working in December. I was a hospice nurse driving 45 minutes each way to see patients and then all over Ft. Worth. So it was the job hours and not the Femara that made me quit. I do have the aches/pains but as Scottie says totally doable for me. I am on short course of Celebrex for sternoclavicular costochondritis. I was taking 3 Advil every morning anyway b4 the Celebrex. Think I will ask for Mobic as much cheaper on my insurance and see what it does. I still carry hay/water every day to goats, move dog crates (my stinker dog barfs every night just about in hers) as needed. I'm about to turn 61.
Now weight is another matter. Have fought that most of my adult life and Femara seems to be making it worse. Of course will power has to be part of that. Wish I was tall/thin. Gosh Eph I've never heard it explained just like that. Amazing what our bodies do. I have considered - that's as far as I got - the 2/weekly 600 calorie days. But then would I just eat more the other 5 days? Is anyone passing out will power?
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sbab - what Momine said. The pain is certainly not horrific, even at it's worst. There are a number of supplements that I'd recommend you take to help, and if you have allergies, try to avoid whatever you are allergic to, as that seems to exacerbate any issues. (I don't eat wheat or pork, as those two items make things worse for me - cured meat in general seems to increase the aches.) Increase your vegetable intake, and drink a lot of water. If you have to sit long periods of time (for example, I commute for about 45 minutes) when you first stand, it can be problematic (like Momine said - you feel creaky). It's better when you exercise regularly - which I have not been doing for about 4 months now. (bad on me).
Swimming is great - and (at least for me) heat helps. We are thinking of purchasing a sauna, though I've heard from some people who have LE that it's not a good thing - so I'm of two minds about it. I'm much better during the summer than the winter. I try to get a massage every week or so, as that helps (though I also heard from LE sufferers that this isn't a good idea - still I've continued the practice as it gives me relief), and I've heard from others that acupuncture is great, but I haven't given it a go myself, yet. And in the end, aches are just aches - choosing to not take the drug can be a death sentence. I'll take the aches.
Sammiryan - I've been taking it (letrozole) for almost two years, and am still working fulltime - plus a fairly lengthy commute in each direction. It's getting more difficult, though, and I have decided that I'm going to retire this autumn (unless something comes up to prevent it). I have gained weight on it, but I don't think that's the drug so much as the lethargy that I have allowed to creep over me. I get up at 0500 now to get to work and don't get home until about 5:30 PM. I just don't feel like exercising at either end of the day. My plan is to begin a regular regime once I'm not doing this commute thing anymore. Last winter I took an extended vacation (6 weeks), walked and/or swam every day and felt marvelous - I also lost weight (which I have since regained, of course). I don't know your age, but I am 63. I had originally planned on continuing working until I was 65, but simply having cancer does rather throw your mortality in your face - so hubby and I have decided that even though we're going to be pretty broke until SS kicks in that we want to spend our time together doing (cheap
) fun stuff instead of going to work every day.0 -
Sbab, I have only been on Letrazole, for about 4 months now, but i have no problems at all. I know it's not the same as Femera, but it sorta is. Just take that sucker and see how it goes. Perhaps it will be bad but it could be good too.
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Sbab, I've been on Femara for almost three years after doing fifteen months on Arimadex. The first made me, at that time 58, move and feel worse than my 85 yr old mother. I was in a lot of pain, no incentive to do anything and my DD's said they didn't hear me laugh or see me smile the whole time I was on it. My doc changed me to Femara and within a couple of weeks I felt so much better! Things improved very quickly.
In the time I have been on it, there have been the usual SE's ie nausea, tiredness, dizziness, achy joints and muscles but none of these has stuck around longer than a couple of months........now, I have no SE's other than the constant fight with the weight. If I put my mind to it I can and have lost weight while taking it. Last year I had a complete knee replacement and knew that some weight loss would aide in my recovery.......I lost 26lb in 10 weeks. I did put some of it back on during recovery but I am back to loosing it now.
I don't exercise much other than going to the store near my house and the occassional trip to the heated pool to swim.....but those trips are few and far between now that I no longer to hydrotherapy for my leg as I just don't feel like driving the 80k round trip.
OMG! I have raved on.......really, the main thing I want to let you know is that it is possible that you have no or very few SE's and those you have can be easily managed but like everything else in life, you never know if you don't give it a go and if the worse comes to the worse, you can ask your doc to change you to something else.
Good luck!
Love n hugs. Chrissy
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Thanks everyone for sharing your experiences with HT. I see RO and Nutritionist on Monday so I will talk with them about my concerns also. I keep telling myself to just get over this anxiety but so far no good. Hopefully I will come to a decision soon so that I can relax and hopefully get some good sleep. Thanks for being here even though we would all rather not be.
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You dont need to commit to taking it forever, can you ommit to six months then review it! If ok continue, if not re rebiew and weigh up or look at another AI. .?
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The Femara, or any AI is going to kick you right into menopause and old age. Menopause is the natural course of being female, if we are lucky enough to live that long. Some women make it to 90 with a full head of hair and no serious health issues and others get arthritis, heart issues, osteoperosis, cateracts, hair loss, lose of libedo, the list goes on...............you've all experienced some. It's part of our genetic makeup. The only thing to slow that process is to hold on to our hormones and possibaley feed the cancer. We have to embrase menopause whether its natural or AI induced.
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Thanks chef127 for the pep talk. I do need it. Already did the menopause thing and doing that again is not the concern. I start LIVESTRONG at YMCA Aug 5th. It is for cancer patients who have completed surg/chemo/rads. It is balance and muscle strengthening. I think I am going to start that first so that I have the techniques to hopefully handle the bone/joint/muscle pain should it occur and I will know where I am before and after starting med. If only there weren't so many horror stories out there regarding AL's but I also know it is my fault for looking and wanting to be informed. I can't take statins, or any pain meds (opiates) due to allergic reactions. Have also reacted to antibiotics and this all adds to my fear of the Letrozole after reading the LARGE number of people who have reacted strongly.
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Sbab - i was very fit and letrozole reduced that BUT I am someone very sensitive to hormones and many drugs, so it does not mean you will have awful reaction......i also cannot tolerate statins, but remember you can have holidays from it which helps reduce impact of side effects without risk
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Michele, femara and letrozole are the same thing, exactly. Femara is just a brand name, whereas Letrozole is the active ingredient.
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Sbab, I was scared silly too, and then it just wasn't that bad really. Also do keep in mind that the SEs tend to seem more severe when they first appear. I think it is partly that they are new, so you are not used to it, but also they do seem to get milder with time and some even go away.
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You need to give it a good six months.....in my case i was fine at first but after eight months got really bad........so took a break but my reaction may have been complicated by a lot of rads damage which reduces wbc count.......
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Hey, a little more background knowledge because I am going crazy. I was up for the last 2 nights going crazy with worry and the aching. I am 45 and due to sort work in just over a week. I was I taxol for 9 months, stage 4 gone to my liver and lungs. I am it ready to retire. I am thinking would it be better to stop all medication and just enjoy my life or go back to taxol. I have. No one else to talk to as there are no support groups in singapore where I live. I am trying to be brave for my kids but it is getting too much. I take the femara in the morning and have only been on it for a month.
Please as much help as you can give me as I feel at the edge.
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Try taking it after your meal at night Sammiryan and give it a few more months as the beginning is usually the worst......good luck
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Sammiryan - as Lily said, try the evening. Also, are you taking any supplements? I'd urge you to take at least curcumin and boswelia.
Lily - I spoke with my MO about taking an occasional "vacation" from it and she told me absolutely not to. Is it OK with your MO to give your body a rest from it once in awhile?
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Yes the private one I pay to consult with is a leading BC Specialist Professor at the Royal Marsden Cancer Hospital in London and he volunteered this info, it was not a response to a question I asked
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Am home from 2nd mastectomy yesterday. It was for safety sake-as I am considered very high risk. I started femara after 4 rounds of dose dense cytoxin and adriamycin, 9 weeks of Taxol--then on to mastectomy number 1. More taxol until toxic. Then taxotere until toxic. Herceptin started with taxol. Radiation. Have had bone pain since mid AC chemo. Bad pain. Femara increased bone pain and now have joint pain. I am considered an "outlier" as I should not have breast cancer and have a virulent form. And have had all the weird and unusual side effects. My medical oncologist and I will discuss a change from femara to another drug in 2 weeks. I have been on it since beginning of April and "should" have acclimated to the side effects. Should. I also had a 0.3 nutraphil count and was banished to my house during chemo. No one goes that low. HA!
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Good to hear, Lily. I'll keep it in mind.
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I put myself on my own Letrozole/Femara vacation at Thanksgiving 2010. I didn't have the money to fill it at the time, so I took myself off for 6 wks; started back on Jan 1 '11. It actually helped the minimal SE I was having with joint pain, etc. Since starting back on it, I'm pretty much symptom free, altho I do get tired easily, but it's not the body numbing fatigue I had when I 1st started taking it & was taking the pill in the A.M. I find if I stay up much past 10PM, I am dragging butt toward the end of the work day the next day, so I try to be laying down by 9:30, read for 1/2 hr then lights out....doesn't work all the time of course.
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It has been great reading all the advice here. I'll be starting Letrozole in about 4 weeks when I'm back from vacation and I now feel really prepared.....thanks to all :-)
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Thanks to everyone for responding with your personal experiences with Letrozole/Femara. It has been very helpful. I am working on the anxiety and know what I have to do and just need to do it. I am so grateful for this discussion board. You are all so willing to share and that helps those of us who are just stepping into this journey. One that none of us want to be on but here we are.
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Sbab......don't be afraid....as Lilly said, try it for a few months and see how you feel.
I actually begged my MO to let me start before rads, which is a little unusual. My thinking was, the sooner I get started, the sooner I will be finished....lol0 -
It's like pulling a bandaid off. just thinking about it is the worst. LIke I said, I have had no problems what so ever...easy breezy..
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Hi Ladies,
I went off Femara after being on it for 4.5 years(shhh... not 5 but I was not going to stop my oncologist for congratulating me) I thought I would drop a note here I really forgot but I guess my first year or so had some side effects, mainly on hands and feet. Either I got used to this as the new normal or the SE's went away but for the past couple of years I felt normal.
Now cant wait to see whether I feel different when off it.. so far nothing, actually I am getting more hot flashes go figure!Good luck !
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trigeek - Someone else I know completed her course of femara and went off it about 4 months ago. She said that her symptoms got worse for a bit and then cleared up totally after about 6 weeks. Please let us know what happens with you. I've still got 3+ years to go, but am SO looking forward to getting off this medicine, and want to be mentally prepared for whatever.... I really like to hear personal stories instead of what ya get from the oncologist (or worse, her PA).
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I have 140 more days and my 5yrs will be up taking femara. It has been rough but with GOD'S help i am doing one day at a time.
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Nanna. Has your medical oncologist talked to you about doing the 10 years? This has been published in newer research (probably since January). My MO has already discussed this with me. However-since I have had so many crappy side effects will be discussing an alternate @ my surgical follow up week after next.
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Ladies - I need some encouragement. I am so decrepit and my bod just aches. I do NOT want to stay on this stuff, but have another 3+ years to go. So.... need encouragement. Please.....
Susan - I just met with my MO, and she said that the studies haven't been completed yet (for 10 years on AI), but that she's expecting that they'll show a 2-3% gain. She said she'd talk with me about them as I get closer to the 5 year mark - though she always seems a bit surprised that I'm still steadfastly taking the stuff. She says she loses most women at about the 3.5 year mark. She's been trying really really hard to encourage me to stick with it for a full five years (which I have promised her I would do).
(To be honest, I think my husband would force feed me if I tried to stop, but still I need encouragement.)
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