FEMARA
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I have gained as well. Trying to lose it is hard. Also trying to get cholesterol down. Was approached by Someone to try the 21 day fit program with shakes from shakeology. They recommended the cholcolate vegan shake but I am afraid to try since its packaged and worry about its contents.
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ThinkingPositive...I took a shakeology packet to my MO and he said I would be able to use it. You may want to take a packet to your doctor and see what he/she says based on your diagnosis.
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really. That's great news. I want so bad to try it but was fearful of all the stuff that could be in in. The girl that was trying to sell me the program told me to go with the chocolate vegan. It had no bad things in it. No soy no dairy.
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Grandmax3 - Re: your question about the Sun Pharmaceuticals generic and side effects: I've used Sun as well as Teva and Breckenridge generics and had no issues with any of them.
I will admit that I'm fortunate in that I don't seem to experience many SEs from letrozole and don't seem to be sensitive to the differences in fillers, etc., either. I hope it's working out well for you, too.
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thank you, Hopeful! I have been on the Sun Pharm Letrozole for just over a week and no SEs (yet) other than some drowsiness. I take it at night so it has not been a problem. I know that it takes a while to build up in your system but it's helpful to know that not everyone experiences SEs with this generic!
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I'm glad it's working out for you, and hope it continues that way for the long run. (I, too, take it at night and welcome anything that causes drowsiness at that point!).
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Has anyone had side effects from Accord Letrozole? I get joint pain after sittin or laying down then gettin up. Also trigger finger . Hair growth is very slow.
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I am taking the Accord and my pharmacy won't order Teva or other brands. I am having pretty bad joint pain recently. My thumbs are very painful and am worried a bit about that. It is STILL better and less hard on me than exemestane was (Aromasin) and I hope I can get through the next couple of years with this drug but so far, not faring all that well. My eyes seem to be taking quite a hit and blurry vision has become a problem at times. We shall see...
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I am taking the Accord brand. Every time I rise from a chair, the car, the bed...no matter how long I was sitting/prone, I walk around like a 100 year old woman, sqeaking "Ooo, Ooo, Ooo" Then within a short distance, I am my same old bada$$ self with no pain or stiffness. It is annoying to constantly be asked...."Are you OK?"
And as far as hair? I have decided to keep my pixie....not because I want to wear a hairdo that reminds me of cancer, but because a longer do would look like a stringy, thin, dried out mess!
I just try to focus on the fact that this is all I got. Until there is a cure. Sigh!
MsP
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I have been taking the Accord formulation and don't seem to be having any unwanted effects, unlike my first two times through with letrazole. I do have very advanced breast cancer, so it can be difficult to sort out the causes of different effects - wanted and unwanted.
healing regards, Stephanie
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For everybody wondering about the filler ingredients in generic Femara----
So Letrozole of course is the active ingredient and so most or all of the side effects you may experience like joint pain, vaginal dryness/atrophy, weight gain, hair loss, raised cholesterol levels, hot flashes, increased sweating, feeling weak, tired or generally unwell, pain or stiffness in the joints, etc.---those are unavoidable because those are from the letrozole. Of course it is possible for some people to be sensitive to the inactive ingredients so that's why a couple of months back on this thread I posted a long list of generic manufacturers--Teva, Roxane, Sun Pharma, etc and the inactive ingredients in each of their formulations. As I recall, Roxane has the least number of inactive ingredents--even less than Novartis, who makes "Femara".
I've taken Teva, SunPharma, and Roxane and for me I don't notice a difference.
If you go to this site: https://dailymed.nlm.nih.gov/dailymed/search.cfm?l... find your manufacturer and click on it, scroll down to Ingredients and Appearance an you'll see a listing of the inactive ingredients.
And for reference, brand name "Femara" tablets contain 2.5 mg of letrozole as the active ingredient. The tablets also contain: silica - colloidal anhydrous cellulose - microcrystalline lactose magnesium stearate starch-maize sodium starch glycollate hypromellose iron oxide yellow macrogol 8000 talc - purified titanium dioxide
Hope that helps!
Ellen
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I am new to this thread so I apologize if this question has been ask before. I just switched from Arimidex because I had horrible hand cramps. I also had numbness and tingling like Carpal Tunnel. After a month off the hand cramps went away and I can type now. I am on Gabepentin for the tingling.
I am wondering if anyone has ask their doctor about splitting the Femara pill in half? I plan on taking 1/2 dose for the first month along with anti-inflammatory Medication( my doctor gave me napraxon) I am hoping as the Femara builds up in my system I may avoid the horrible hand cramps I had on Arimidex,.
My MO is useless but I really want Femara to work rather than switching to Tamoxifen. I had an oophrectomy in January and I suspect I am feeling the double jolt from the loss of estrogen.
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Exercise Guru, I cut my femara in half for about 18 months. On Sunday, Tuesday, Thursday, and Saturday I took a whole tablet, on Monday, Wednesday, Friday I took 1/2 tablet. I needed to do something to get some relief from side effects, but was too "chicken" to take only 1/2 pill all the time or to stop totally . When I got my last refill, the pills came from a different manufacturer and these won't cut, they just crumble. I'm back to taking a whole one daily.
I asked my oncologist before I started taking less that the full dosage. He said he couldn't recommend it because "the dose is what it is because that is what was studied and worked." I asked if he would "fire me" as a patient if I did this and he said "Of course not. You are an adult, you are responsible for what goes into your body. You do what you think is best for you."
Since my diagnosis, I have cycled through tamoxifen (had to have hysterectomy because of that), and all three of the AI's. Femara has given me the least side effects, but I'm still a pretty miserable gal. My five years will be up this year - don't know if I get to stop at my April appointment or if it will be in the fall. Docs have said that in my case, there is no need for me to continue beyond five years. That is the good news, and if I'm honest, the scary news.
Please, DO NOT take what I did as a recommendation in any way, shape, or form. I will never know if only taking 1/2 pill for that amount of time gave me the benefits needed. I could very well have left myself under-protected. Please talk to you doctor some more.
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Hi Exercise. I hope Femara works better for you. I have been on it for about 5 weeks. Feel some achiness when I get out of bed or from a long time sitting position. It goes away after just a few steps though. Otherwise nothing bad for me. I take a full pill at night. My letrozole is manufactured by Teva. There is a thread further back discussing which manufacturers use which non active ingredients. Based on what I read, I requested Teva or Roxanne. Walgreens ordered it for me. Also there has been discussion about cutting pills in half but taking 1/2 in morning and other 1/2 at night. Worth a try?
Good to hear from you. Have you started hiking again
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Sloan, I am from PA. Is there a teaching hospital with a cancer center near you like StanfordUniversity. My choices were Penn Medicine or Fox Chase which is run by Temple. They are both well established teaching hospitals with very good reputations.
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My pharmacy sold me Teva for my last refill, and I noticed no difference from the Roxane except for heavier night sweats (and sweats in general from exertion & stress) and more pronounced carb cravings. Ran out of the Teva while on vacation in Europe three days ago, and so I have started the branded Femara I got from CanadaDrugs.com. Same effects thus far as Teva. (Tried to get it OTC in Paris--the “pharmacien" sold me OTC Celebrex, Ventolin, and aureomycin ointment because licensed pharmacists have some leeway--but they draw the line at selling anything other than a symptom-relieving drug sans an Rx). Will refill the Teva tomorrow--the Femara is pricey stuff and I’d prefer to use it sparingly.
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Hi everyone. Started on MAR-LETROZOLE this evening. Really don't want to be taking it but once I weighed all my options decided to at least give it a try and see what side effects I get. Sounds a bit different than what some others are on but probably they are all very similar in the end. not sure of the difference is that I am living in Canada.
Anyone on the same AI?
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Here comes a rant or whine. I am so tired of feeling such pain in my joints. It's not a 10/10 pain, just always there and always keeping me from feeling good. I was taking 1/2 Norco tab once a day and advil once a day. My MO says he won't refill the Norco. I am a nurse and understand the risks of addiction, however, I make sure I never take more than 1/2 tablet a day. I am so tired of this medication affecting my quality of life to the point that I will risk reoccurance just to feel normal again. I have ordered Cosamin DS that was recommended on this site. I'll see if this makes any improvement. I don't mind the hot flashes but the joint pain is a deal breaker. Sorry, just needed to vent.
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I understand, I have mild joint pain and even that is a nuisance. Lately I've been getting diarrhoea as well as other SEs and really sick of the whole thing.
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Mormon, completely understandable. Optimist52, thank you for your candid comment. You are very normal to feel this way. Each step is a personal choice!
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Moeman, rant away. You are feeling exactly as I do. Always feeling lousy. Joint pain and general feeling of illness. Sort of like having the flu all. the. time. Gets very tiring when it is happening to you. I was so hopeful that letrozole would be different for me than exemestane was. At first, it was better. Now? Not so much. I have not quite reached the levels of joint pain I had with the exemestane, but I am getting there. I have different aches/pains from this drug. Hot flashes are way worse on letrozole. Had very few on the former but this drug? If I exert myself at all, I am drenched in sweat. Cooking used to be my favorite thing. Now, I get sweat in my eyes just chopping veggies. Awful!
Hugs to all of us who have to take AI's. We are blessed they exist, but what a lousy existence it is.
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Moeman--Have you tried turmeric and ginger? I'm actually still on Tamoxifen but my MO is planning to swap me soon, probably to Femara which is why I'm here. I started having joint pain on Tamoxifen about 2 or 3 months after I started. I was really affecting my sleep and my exercise routine. My MO suggested Osteo BiFlex which didn't touch the pain. I finally saw a naturalistic doc who suggested the turmeric and ginger. Within a week I went from a 9/10 on the pain scale to a 1-2/10. I now sleep through the night and am back in the gym lifting weights, running and doing yoga. It may not work for everyone but it was a lifesaver for me. My BS actually thinks my MO should leave me on Tamoxifen since I do so well on it and he says the AIs are brutal for joint pain. I actually told him about turmeric and ginger and he's now trying it for his arthritis!
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I just started Letrozole in March but plan to have a PMX of my right breast in May. I got my pre surgery instructions today which said to discontinue hormone therapy 1 month before surgery. I know that Tamoxifen lasts s while in your system, but Letrozole has a half like of 2 days. Does anyone know why this has to be discontinued a month prior to surgery?0
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Does anyone worry about the joint pain ever?? That it could be something else???? How do you ever know. I have joint pain mostly after laying down or sitting for a long period then getting up. It hurts until I start moving around then its gone. I do have pain in my shoulder opposite the cancer side, its not always there and I would say it feels more like shoulder blade pain but only when I move it certain ways. I also started getting diarrhea but wasn't sure if it was from the Letrozole, which i have been on for 13 months, or from Actonel which I am on for 7 months. Also have trigger "thumb", high cholesterol and weight gain from the letrozole. If the letrozole is increasing the cholesterol is it possible to lower the cholesterol through diet or is it inevitable that I will be taking another med??
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ThinkingPositive - I did lower my cholesterol with diet (low carb) and exercise but it's still not where it was before letrozole. So, I'm still working at it. I don't want to take a statin. Also have lost 40 pounds. So it isn't impossible, but very hard to do.
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I began Letrozole (Femara) a couple of weeks ago and stopped taking it today. The hot flashes have been awful, I've had trouble sleeping, rapid weight gain, and the worst part is I'm in a crabby mood all the time. I am not like this normally but I'm snapping at everyone and generally hate myself.
It's so hard to get an appointment with my MO. After 30 minutes on hold today, I gave up, I left a message and they never called me back. So I can't ask them questions or even make an appointment although I am supposed to see her this month.
Does anyone know the data on how much this drug helps? If it means my cancer recurrence rate goes from 1% to 5%, I can live with that, but I can't live with these awful side effects. I really hate this drug. What happens if I just don't take it?
Thanks very much.
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Warning, very long! Sorry, it's a summation of 25 years that were a whole lot more complex than indicated here!
Although I've marked this topic as a favorite, I seldom participate in it, because I have very useful information to share that might help others.
This morning, I would like to offer a very different perspective by sharing my thoughts on quitting Femara for a third time.
Yes, you read it right.
I've lived with advanced breast cancer for many years. At first it was ER+/PR- (there was no HER2 testing then, nor were there aromatase inhibitors). Shortly after bilateral mastectomies in 1991, I faced a local recurrence that's continued since. I pursued largely alternative approaches with some surgery that seemed to multiply the tumors. Finally, I tried tamoxifen and it did zip. Then Megace, same thing. Then radiation, better but not all gone, then growing again. The tumors became ER-/PR- sometime around when the AIs hit the market.
By 1999, I had a lung tumor, but because of a cascade of other medical problems, we decided to wait and see.
It didn't really trouble me until 2008 when pleural mets and effusion knocked me off my feet. On a whim, we tried Femara and it worked to achieve partial remission and then stability until 2011. While the unwanted effects were quite unpleasant, I preferred to breathe better and use a variety of natural substances and practices for those unwanted effects.
After it stopped working, I cycled through a variety of treatments including Aromasin, Faslodex, estrogen and testosterone. Only the estrogen curbed the cancer, a happy period of about 2 years.
In early 2014 the cancer had spread to my liver. In early 2015 to the outside of my liver and belly.
In 2014 did try femara again, hoping that the estrogen had re-sensitized the cancer to anti-hormonals. I hated the side effects and figured I'd die with or without the femara, so stopped after a couple months.
In 2015 I decided to try it again and I've been without unwanted effects and with a slowing of the disease process.
Today, I visit my oncologist of 24 years. Though I'm on hospice, I'm allowed both femara and to see my oncologist. I'm thinking of asking him whether it's time to stop with the femara already. It's tiny dam holding back back the flood waters of cancer. Though it's not harming me, I wonder if it's keeping me from dying, which seems to be the task at hand as I feel my body on a slow, but steady path of decline.
I will ask and imagine that he'll say it's a palliative measure to keep me feeling as well as possible as long as possible.
I know it controls the lung and pleural mets, though not the liver and belly mets (I've drained a liter of ascites daily for 7.5 months). If I stop, I'm likely to suffocate to death. If I prolong this leaving, I'm likely to die of liver failure.
Friends, I share my story, because I read so many of you pondering whether taking femara is really worth it for you.
For myself, I honestly don't think I would have taken it to prevent a recurrence, unless the unwanted effects were acceptable/manageable.
While it's not a lot of fun to die of breast cancer, I'm glad that I chose to maintain my quality of life by engaging treatments in harmony with my inner wisdom. I trust my intuition and now my oncologist does too!
So grateful that I'm not fighting the establishment or the established way of doing cancer. It's better for me to live outside those bounds.
And I feel for you in your struggle to find what's right for you.
There are so few good, clear answers in the course on cancer.
warmest healing wishes, Stephanie
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neen56 - I don't think anyone can really answer that question. Your risk would go up, but by how much, who knows. I used a Breast Cancer Treatment Outcome calculator to get an idea and for me the numbers indicate 2 years improved average life expectancy after 15 years. That seems like it's worth it to me to put up with the se's I've had. But you have to realize it's just a number and has very little value for the individual. There's no right or wrong. Everyone's different. Your se's may be much worse than mine. Here's a link to the calculator if you'd like to see what your numbers are:
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Neen, it really depends on how estrogen positive your cancer is. Has your MO tried you on prozac for the hot flashes? I had a hysterectomy so had surgically-induced menopause. I dealt with the awful hot flashes for years before my doctor put me on prozac for it and it worked INSTANTLY. Now that I've been diagnosed with breast cancer, they put me on the letrozole to block what little estrogen my body is still producing. I'm starting to have mild hot flashes at night again. I'm going to talk to my doctor about increasing the dose of prozac and see if that works.
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I stopped taking Tamo after the first of the new year, I just got tired of being on so many other drugs to deal with the many side effects. I took a 2 month vacation and started on Letrozole March 1st and so far, I am doing great. I no longer have any hot flashes (so far) and no other side effects have occurred. Actually, I feel pretty good, the best I have in about 2 years. I am active again - training for the AVON 39 mile walk, bought a stand up desk for work and eating a lot more healthier. I hope I continue to do this well after the honeymoon faze has worn off with the Letrozole as I know it can take a while for SE to rear its ugly head.
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