FEMARA
Comments
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Thanks for the encouraging words, Rosie! I'm hoping that my body aches are peaking and that they will slowly subside, too! I've been on Femara since end of Dec. 2011. I'll keep my fingers crossed with you that your tumor markers are good!!
Steph
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For those of you who have mentioned bruising what supplements are you taking? Fish oil,green tea, aspirin, ibruprofen can all increase bleeding and bruising.
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I noticed some bruising too, but I'm taking 4 fish oil capsules every day as well as 3 cups of green tea.
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other supplements that thin the blood are: curcumin, glucosamine and cinnamon - oh yeah, and Vitamin E.
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Just got my Dexa Scan results and I am Osteopenic AGAIN. I've had 6 infusions of Zometa in the past and keep loosing bone in my hip joints. So much for taking daily Calcium, Vit D, Mg supplements, 2 mile walks, exercise. I'm so disgusted with this dx and side effects of all the treatments and feeling like crap.....
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cp418 - I don't know very much about it but read on a thread that someone had their parathyroid levels checked and they were off and they said that might have affected their bones.0
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I have not logged on for a couple of weeks now, and I continue to be amazed at the number of posts regarding serious side effects of this drug. Do doctors ever read this? Are they listening? My mom was recently diagnosed with an A1 IDC. After her lumpectomy, I went with her back to her Dr. and they doc said she looked really good but she will probably need to start taking Femara. I burst into tears and told the doc there was no way she was going to do that to my mom. I have EVERY symptom that I have read on the last 40 pages of posts. No way my mom can take that. Of course my cancer was much worse and I have been on this drug since July 2009. Her doctor said something to me that was profound. We are all going to die, and I can still make decisions as to how I choose to live. After about 4 agonizing days of tears and prayers, I decided to take a vacation from Femara. I called my Onc and told him we could discuss other options at my next appt. in May (They were not happy of course). I have now been off the drug for 3 weeks. I have heard many say that docs have taken them off for a week to see if they get better. No way...that is NOT enough time to tell. I am just now noticing subtle differences, like rolling over in bed more easily and getting up out of a chair without groaning like a 90 year old woman. My hips and feet still hurt quite a bit, but the knees are already feeling a little better. I guess I should mention, I have been on constant steroids with my Femara for the pain as well as narcotic drugs. I am trying to cut back on these as I go. It is a slow, and yes still painful, process. Not to mention the 70 pounds I have gained in the last year and a half. But for the first time in a very long time, I have hope for something a little better. So here is the question I ask myself when I see that stranger in the mirror every morning. "How do I want to live?" What is the point of keeping me alive if I am not able to live my life to the fullest. If I stay on Femara, I am going to die from a heart attack or stroke way before the cancer can get me again. I see my Onc next week. I will post an update then. In the meantime...all of you brave warriors keep fighting with all you have in whatever way is best for you!0
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painh8hr, It really sounds like you should ask your MO for another AL. Maybe one of the others would be better. Hope so anyway.
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Heather....are you asking if I completely lost my 'mind' from Femara? Then the answer is YES!
The mind is something of the past and everyday something new surprises me......and it p---------me off I might add. But I don't like the alternative so here we...stuck!!
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after 3 weeks I am having no side effects[unless depression is a side effect] does that mean that it's not working because my bc has a high chance of recurring elsewhere ion my body anyway.
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painh8h, I hear You. I stopped Letrozole a month ago and I am finally my old me. No joint pain, back pain, no 20-30 hot flashes/day, my ear unclogged, my cheek is not numb...When I called my onc to tell him about these side effects (I started Letrozole in September every other day and numb cheek and clogged ear with constant sinus and ear inf started immediately) he just told me it would get better. It never did for me, but just worse. Maybe if I got real Femara and not generic I would feel better but it was never offered to me.
I am not sure anymore what to do and what to take. I gave up my breasts and my ovaries already.
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vicky....It took more than 4 weeks for the side effects to start kicking in for me, sorry to say. But many people do take it and have no SE's. Hopefully, you're one of those people. It doesn't mean it's not working...
The side effects are getting worse for me and I understand what you're saying, nikola. I'm going to give it a bit more time and see how I am. I'm sick of being tired all the time and feeling like I'm much older than I am. If it keeps getting worse, I don't know if I want to keep taking it. I gave up my ovaries too and I really didn't think when I was diagnosed a year ago that I would feel like this a year later...
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nikola and lovesChristmas - do you take any supplements along with the letrozole? I take a whole host of them and am convinced that they help. To be clear - they certainly do NOT remove the pain, but it is doable for me (as opposed to the alternative of no AI and fairly high certainty to have cancer back sooner rather than later).
Maybe I'm fooling myself about the supplements helping, but I have to go off them for the next week in prep for stage II reconstruction and am really nervous. I'll let you know if I see a difference without them.
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I do take Vitamin D3, magnesium, and calcium along with a multivitamin. I've been taking claritin for a week because several people on other threads say that has helped them but I haven't noticed any improvement yet. Most days I can deal with the pain I have; it's the almost constant fatigue along with the pain that's wearing me down. I started my exercise routine back up last week and I feel better earlier in the day but by midafternoon, I'm exhausted and have to have a nap.
What supplements work for you? I'm up to adding more...
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Right now I'm taking:
curcumin, ginger, quercetin, cinnamon, vit D-3, a multi-vitamin, indole-3-carbinole, biotin, cod liver oil, glucosamin sulfate and one other I don't remember...
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Wow.
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Are all of those for the pain? or are some for cancer recurrence?
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I take Omega 3, D3, Multi Centrum Silver, Calcium and b 1 baby aspirin. Recently I've added Forskolin...It's supposed to be good for the heart and helps burn belly fat. Which I have thanks to femara. Anyone heard of this supplement? Saw it on Dr. OZ.
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Nikola
I could not believe when I read about your side effects. When I started this drug in 2009 (and I started with the real Femara) I had terrible clogged ears and recurring sinus infections. After about 8 of them my family doc sent me to an ENT. He ran all kinds of tests and did a CT scan of my sinuses. He was on the verge of thinking he would be doing surgery when he discovered there was nothing wrong with my sinuses. He was completely stumped. He could not explain why they were inflamed all the time but I really had no infection. This was an eye opener for me. I have also been through every test the Rhumatologist could run, and he finally dropped me too. I have been on the Letrozole ever since it went generic. I really could not see any difference. My symptoms have gotten worse and worse over the last couple of years and now I am starting to see some relief after being off of it the last 3 weeks. I saw the other comments that I should try one of the other drugs, and I know my Onc will recommend that also. I just can't see the benefits outweighing the risks for me these days. The list is long...hot flashes, headaches, shortness of breath, sinus and ear problems, awful joint pain in all extremities, memory loss, fatigue, depression, +70 pounds, blurry vision, can't sleep at night, can't stay awake during the day. Not to mention all the extra drugs to combat all of these symptoms. Welbrutin, Elevil, Ultram, Vicadin, Decadron, Klonapin, Xanax, antibiotics for all those infections. All because of Femara. And I have tried several others like Neurontin, Lyrica, and Cymbalta. I also take medicine for high blood pressure. I gave up both breasts and my uterus. I have never been able to get my breast construction finished because of all these other setbacks. I am twice the size and half the woman I used to be 3 years ago. I am not sure anybody really wants to know all the reasons why I stopped taking my Femara (Letrozole) 3 weeks ago. That about sums it up. Every time I get on here and start reading, I learn something new about the drugs and about my symptoms that I could never figure out before. It is good to have a place to vent with people whole totally get it. I don't have the answers to my problems, but I just want to live my life in a better way than I have been. I hate that you are all going through this with me, but I am so glad I found you!
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painh8r......
If you've never read the book "the Yeast connection", please do. Sometimes we take to many drugs and antibiotics are one of them, that totally kill off our good bacteria and ruin our whole immune system. I think you need 'Probiotics' in you to get the good bacteria build back up before the bad breaks your whole body down. I've learned to much from this book and you can have a whole malady of things wrong...infections, constipation, Daria, depression, headaches, feeling of dizziness. The list goes on and on. It happened to me years ago and it mushrooms like a snowball coming down a big hill. Dr's.? They can't find anything wrong. All my throat Dr. kept saying is...yes, your throat is all inflamed...did you eat too many tomatoes? #%*! NO..it's the damn drugs that are killing me!! Health-food store have Probiotics in the refrigerator section. This could be yeast related.Everyone should take them to get the gut back in check. Just trying to help,,been there.
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THAT was the one I forgot - probiotic!!!
LovesChristmas - the Indole-3-carbinol is for cancer, the quercetin and curcumin are both for cancer and pain. The cinnamon is to help metabolize sugar as my blood glucose is a little high - and for pain. The ginger helps my stomach (as the letrozole gives me indigestion) and for pain.
Basically curcumin, cinnamon, quercetin and glucosamine are all anti-inflammatory. Once I'm off warfarin permanently I'll also start taking white willow bark (a natural form of aspirin) which is also anti-inflammatory. I believe they help me, but like I said, my DH thinks I'm crazy.
Fortunately he's nice enough to not put it quite that way... 0 -
Thank you for the explanation gardengumby! I'll have to look into adding some of those to my list..
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I am the most stiff and painful in the first few hours after awakening........then, I seem to come alive around 1PM. I saw where someone suggested taking this beast of a drug at night...so the SE's fade out by the AM. I'm switching to that. Good grief......I used to be one heck of an athlete...now I walk like I'm 101.
bummer.
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Viv,
You are gorgeous! Love your hair...wow. Very nice.
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I switched to taking it at night early on and it made a big difference....
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Night time is what does the best for me!
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I second the night time....I want the Femara to peak when I'm sleeping....and the other stuff I need (the feel better drugs) I take in the day and hope they kick in while I'm working and living.
I think it is working....
I also was dragging tired all the time....I started drinking a single cup of caffeine in the AM and I feel so much energy. I hope I don't get used to it so it doesn't work any more.
Happy week end, all!
Joan
PS - my thumbs still hurt (at the lower joint) and have since I started Arimidex. It didn't go away when I went off...switched to Femara and they still hurt. Not unbearable.... grrrrrrr
Also, I noticed that when drying my hair my arm gets tired so quickly....could be the surgery though.0 -
Ok, it is my hands.....my fingers are swollen, the entire palm on both sides.
Onc said Femara can exacerbate arthritis. All the women on my dad's side get it in their hands, fingers.....my knuckles are twice the size of normal...My wedding band has been super loose, almost falling off loose for years...now I can barely get it over the knuckle!
I'm only two weeks in...hope this changes.....it's not a deal breaker...but not comfortable.
On the other hand, the runner's knee I have from decades of running and which was very painful on Tamoxifen has let up....so much so I'm looking for running shoes...not to do a lot, maybe once a week...on a flat level surface to help with bone loss.
If I knew Tamox really worked for me, I'd ask my Onc to switch them back and forth for the 5 years...that way, one year my bones take a beating on Femara, but the next year they are built up with Tamox....and the symptoms are diff for each drug, so I'd get some relief .....I may still ask him about it...just to see what he says.
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That's a good idea TonLee - I'll ask mine too about switching back and forth when I go in next month.0
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Let me know Omaz!
My Onc likes Tamoxifen better, so he may be open to it.
And it should help mitigate bone loss....or it seems that way to me.
Plus I've read some research that say women do better with 2 years Tamox and 3 years AI. Less AI SE.
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