FEMARA
Comments
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I haven't started any treatment yet. I have been prescribed Letrozole. After reading about all the side effects don't know if I want to. I'm mad at the onc. for instilling fear into me about the cancer coming back, telling the side effects are minimal. I'm already did my time with hot flashes and am stating to already have bone loss and joint pain. Why inflict more on my body if I don't have to. I don't know what to do. It's so easy for a man doc to say it 's what he would do if it would bring the chances of cancer coming back, and then he tells you the % of effectiveness is really rather low. I'm going to do radiation and am praying for real direction on the letrozole.0 -
gilbert - I started Letrozole last week and I was told by my female onc to take it every other day for 2 weeks then everyday. Also, take it at night with 8 oz of water. So far no SE but I will keep you posted. After rads I felt like my "safety net" was gone; I knew the rads were killing the cancer cells so I was very ready to start the Letrozole the keep killing any cancer left in my body. As you can read on this thread, everyone has had different experiences. Keep doing your research and follow your instincts.
Regarding the bone loss, I had a Reclast infusion which didn't go very well. I have a reaction and was sick for 3 days. Again, this doesn't happen to everyone and I just won't have the Reclast again. I worry about my bones as I have osteopenia in my hips so I take calcium regularly to help the Reclast do it's job.
I hope I have helped......if even a little bit.0 -
Gilbert, there are lots of people that have minimum side effects or even none at all. I have been taking letrozole for about 6 months now and I will usually have only one or two hot flashes a day (they only last a few minutes) and some occasional joint stiffness--doesn't keep me from walking 21/2-3 miles a day. Lots of people will not post or keep coming here if they have no side effects. You won't know how you react unless you try it--we are all different. If SEs are too bad you can then think about decreasing your dose or stopping it.
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I agree with BookWoman. My SEs are annoying sometimes, but really nothing crippling. I do get quite a bit of exercise and it definitely helps.0 -
Hello ladies. I have a question/concern. I have been on letrozole since late August and have been doing pretty well until this week. I have not had hot flashes but have sleep disturbance (difficulty staying asleep) no matter taking night or morning...but I am managing. I also have the "old lady" gait when I first get up from bed or a chair. But, I am now experiencing what feels like a wrenched hip and knee on my left side. It isn't crippling pain and doesn't ache or hurt often...only when I move my leg in a certain way...then I get zapped. I also have gotten zapped in the other knee but not as frequently. I started taking 1200 units of Turmeric last week but my research indicates that tumeric is not likely causing my symptoms. I know that Letrozole can cause joint pain, but is this the kind of joint pain that others experience? Just wondering.
MsP0 -
Pharaoh, I am not sure. I do have joint pain on letrozole, but I also have a bad back and have had various kinds of pain in knees/hip/back since adolescence. In other words, I am never quite sure what is the letrozole and what is my rickety skeleton.0 -
Thanks, Momine!!! Is your joint pain constant aching type or are you being zapped?? It's very frustrating to be unsure what to pay attention to. Not sure why and maybe I am lucky but I have a high tolerance to pain, annoying people and difficult situations. LOL I think people like me have to be more careful with cancer.
MsP0 -
Pharaoh, I get both types of pain. Thing is, I used to get both kinds before cancer and letrozole too. I have more sort of achy joints pain with the letrozole though, that much I can tell.
Any chance that you messed up your back? What you describe can be a symptom of certain kinds of back problems.0 -
gilbert, My experience with letrozole (been taking for 1 year and 7 months) was that the SE's I had peaked at 6 - 9months and then began to taper off. Now My joint pain is minimal. I do still experience stiffness in the morning, though. I do take 3000mgs of omega 3 fish oil a day and I'm sure it's helping, too. I'm also taking curcumin (8 grams a day). Only have about 1 hot flash a day, but I do find that I seem to be warmer than most people. When friends are complaining they're cold and putting on sweaters or coats, I'm just getting comfortable. I was fearful at first, too, but was inspired by many women here to at least try it. It appears to me that the SE's are temporary and from what I've read goes away after you're finished. The fear of the SE's are worse, than the actual ones. I encourage you to try it to see how you react to it, and if it's bad for you, you can always stop.0 -
Good grief! I just had another medical professional tell me that sleeping issues and depression are NOT side effects of this drug. Do they even know what they are prescribing for us? Do they read any of the research on these drugs or even glance at the side effect list? We are not crazy! We are our own best advocate. I am glad I am in charge of my own care and just not going blindly where they push me. Sigh.0 -
Bayou, sleep issues are DEFINITELY an SE from femara, I don't care what any damned doctor thinks. I never had these kinds of sleep issues prior to femara.0 -
Same here. Always slept like a baby in my days before Femara. On Femara I was lucky to get 3 at a stretch straight through. My depression during my ninth and last month on Femara was horrible. I am positive it was a combo of side effect and my body just no longer being able to take the immense bone and joint pain I was experiencing. Ladies, do not write off your side effects. You are not imagining them. Luckily, there are other AIs to try. Femara was not for me. Hoping for a better run on the Arimidex. Hugs to all of you as we navigate these drug issues.0 -
Bayou, thankfully my sleep issues eased up after about 6-9 months, and now it is completely tolerable. But it was pretty bad for a while. Now I just sometimes get this weird thing where I fall very fast asleep, but for 10-20 minutes, and then I am wide awake for an hour. It is odd, but not daily and not that bad anyway.0 -
Mspharoah, I started getting the zapping pain in my hip about 2 months after starting the letrozole. I'm not 100% certain that its not a coincidental back pain, but I'd never had it before and it hasn't gone away. I guess I won't really know until October of 2016 when Igo off the drug.
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Thanks, Gardengumby for sharing your experience. I'm going to try and say this in a non-complaining tone....I never felt as bad when my cancer was growing as I do now that I am trying to kill it! And isn't it ironic that all the side effects from treatment are also symptoms of CANCER!
Have a wonderful weekend! MsP0 -
Well said, MsParoah! My thoughts exactly!0 -
Mspharoah, I would get that checked out. Don't ignore pain like that. We are not doctors here. I always think it's best to get things checked out just to rule out any nasty things. I was having bad hip/joint pain which I ignored as just aches and pains. Turns out I have a tumor the size of an egg on my pelvis. I wish I had that checked sooner.
Michele0 -
Since I switched to Femara from Arimidex I've noticed a good thing and a bad thing. I don't feel as foggy brained which is definitely better but I also have my hands really aching and they weren't before so....I guess there is tradeoffs in SE's. The other pains I have pretty much stayed the same. I think I'm going to try to omit wheat (gluten) and see if that helps me. It's a tough one because I love bread and butter.0 -
Lee7,
I am a Coeliac so I do not eat gluten. On letrozole my biggest problem is sore hands and joint pain (knuckles). This is especially in the morning.
I think you should continue to enjoy your nice scrummy bread.
Not eating gluten makes no difference to my sore hands.0 -
SEs sure are hit or miss. I had no problem with my hands on Femara. 3 days into Arimidex, my fingers were already bothering me immensely. No rhyme or reason to this AI nonsense. Sigh.0 -
Went to my onc .He said I could stop my femara Dec 16 which will be 5yrs on it. He said since I had no cancer in lymph node that it would be ok to stop after 5 yrs. He also said no more zometa infusions and my bone density scan was great. So I have 40 more days to take the pill. Thank you God for helping me on this journey.0 -
That is great news nanna. I too expect to stop at the end of June. Hopefully all these minor se's that keep popping up will finally stop. I have high hopes they will. Keep us informed like Artsee does to let us know how you are doing without the pill. Good luck.
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Nanna, good news. You should celebrate in some way.0 -
I save all the empty femara boxes. I want a record. Maybe if I am ever let off this drug, I will make a bonfire of the boxes
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Congratulations, nanna!!!
Momine:
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Congratulations Nanna!
Does anyone know when you switch from one AI to another due to side effects how long it should take for the side effects for the old AI to last?0 -
i was told to leave a good six weeks between them at least0 -
My MO gave me a two month break after she took me off Arimidex, and all my SEs went down to baseline. Then I started the Femara.0 -
My MO never gave me a break between any of them (I've been on Tamoxifen, Arimidex, Aromasin and now Femara). It was one day I was on one and the next day I was to start the new one. I just switched to Femara last Thursday from Aromasin. I've been having problems with nausea that starts around mid morning. If anyone else is having this problem or had it, does it get better or is it just another side effect we have to put up with? I take my pill with breakfast at around 6 AM or so. I'm thinking of trying to take it with supper and seeing if that helps.0 -
Cowgal, when I first started with Femara I did have some nausea but I started taking my pill at night and found that the nausea disappeared and I slept better and so the fatigue was way less as well.
Hope you do well on the Femara.
Love n hugs. Chrissy0
