FEMARA
Comments
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Jacee......I agree with EVERY word you said too. It sounds at least that the last three poster are all in a slumperino. Forced myself to put the tree up. So behind in shopping and the spark is not there. I always had to have Christmas music on too and din't bother this time.
As for scans I had a heel one that showed bad osteoporosis about 10 years ago and nobody has even mentioned that I should have another. I really don't want it because my insurance wont cover anything that has to do with osteoporosis, because it was a preexisting condition when I joined that insurance company.Also I had to go off the drugs for that because they gave me chest pains and ended up in the ER twice.
We have all been diagnosed some time ago....so why the feeling like this? FEMARA?
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I wrote to Novartis Canada asking how long does it take for side- effects to go away after finishing femara. They called me and the answer was 2 days. Unbelievable..... It is now 11 days since I stopped femara and my eyes feel better and I have lots more energy. I still have flushing and hot flashes and bone pain. I have not taken anything for constipation for 2 days......sure hope it is gone after all these years..... Unbelievable......
bc hugs jinky
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This has probably been addressed earlier in the thread - but 86 pages is just too much....
Anyway, I'm on letrozole by mylan right now. My hubby just picked up my refill and he said the pills are a different color - from a different company. I'm just getting accustomed to the SEs from the one I'm on (lots of aching, but still WAY better than I felt on tamoxifen), so has anyone noticed a difference in SE's from one generic over another?
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Hi Gardengumby,
I've been on pink colored Letrozole by Mylan for 3 months and the only real side effect I have is very loose bowels. My Onc. gave me a 30 day sample of the yellow/goldish colored ones (sorry, don't remember the manufacturer) so I could see if it made a difference. I didn't notice any differences at all in a month of the new pill.
Hopefully you won't notice any negative differences. Keep us posted and good luck.
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SeaShelley - if you don't mind me asking, how long does your oncologist say you need to take the letrozole? Mine says she wants a total of 5 years on "something". I had tamoxifen for 6 months before it tried to kill me (well, really it tried to kill me at 4 months, and it took 2 more for the doctors to figure out what was going on), so I've got 4.5 years to go on letrozole. But, I see that some people take it for much longer, and other than stage IV folks like ChrissyB, I don't understand why the differences.
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My Onc. said 5 years. I think the difference is that some studies are showing that taking AI's longer is beneficial. I will be interested to see what the studies say in 5 years about taking it longer and discuss it with my onc. more at that time. I'm only 46 and think I will be nervous about stopping it at 51. I do a lot of good things with my diet and supplements but like the idea of keeping the estrogen controlled as long as possible (as long as it's not taking too much of a toll on the rest of my body).
Sorry to hear of problem with Tamoxifen - Scary!
I just noticed that you're from Seattle, too. Nice to meet you neighbor!
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chrissyb - the drug that Anthunter 1982 is talking about is called FORTEO. It's a totally different type of med than Fosamax, Boniva, and the other bisphosphonates. It does build bone. I had severe osteoporosis prior to my having breast cancer, and FORTEO really worked. Well, unfortunately, the Femara plus the meds that I have to take for my COPD (some of which contain steroids) are really messing up my bone density, so now I'm on yearly infusions of Reclast in my onc's office.
If I could go back on FORTEO, I would, but the max is 24 months :-(
Jacee asked how often others have a bone density test - I have one every year.
Artsee - I could be wrong, but I think with the new health laws that are going into effect, that you may be covered for a bone density test. You might want to check it out.
Karen
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Gardengumby, the difference when taking Femara or any other med is, at an early stage it is used as a precautionary where as for stage IV it is constant treatment. We use these drugs until they no longer work for us and we have a progression then we change to something else. As a stage IV, I will be on some form of treatment until the day I say enough.
Karen thanks for the info on Forteo. I hadnt heard of that one.
Love n hugs. Chrissy0 -
Lulubee, you know I feel as if I have been so blessed. The support I have had is amazing. Today I received two offers to come over and help me make cookies or decorate, but the joy in life has just been sucked out of me and it feels good to have it back.
Today I met with the Dr. The pain is not from lympedema but until it goes away she offered therapy to make it better, in the mean time she ordered me two patches. One is lidoderm the other is flectorpatch. I have the lidoderm on my thumb and wrist,along with the thumb stabalizer she asked me to wear for a week and I am able to type with two hands. Its been weeks since Ive been able to do this. The lidoderm is put wherever the pain is and is kept on for 12 hours. Then I can pu t the other one one. The patch is a cloth backing and the inside feels kindof slimy, but the coolness felt amazing. She thinks that the aromiasin will make this go away....
Blessings to all: Onward
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Hi everyone
I've been reading everyone say that they feel like the life or spark has been sucked out of them by Femara.
Interestingly, I had a colleague say to me-" I am concerned about you because I can see that the spark in your eyes that used to light up a room when you entered is not there." This was before I started my hormone suppressing. I have to wonder if it is the Meds or the experience of all we have gone through and the unspeakable stress that comes with. I am on the generic form of Arimedex not Femara. Just for the record, it sucks too.
I Know one thing...I want my sparkle back and I am determined to get it!
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I heard this on the radio tonight and pulled it up on the internet. 1/3 of their study of almost 700 women quit using AI's due to side effects. http://www.bbc.co.uk/news/health-16107978 These drugs have been out for years, are they just getting it now????? Onward0
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kdeit..I have heard about those laws and I haven't heard about the year that will go into effect. My DH thought it was 2013? I'll have to check on that but....like I said the Osteo drugs...and I took three different ones made me VERY sick. Even if the insurance covered I would never go through that again.I thought I was having a heart attack and went to the ER a couple of times. Then the light went on after nothing was ever found. The Osteo drugs....went off and never had that happen again.
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Hi artsee,
I'm sorry you had such a bad time with the osteoporosis drugs - that's why FORTEO may be something that you should look into - it's totally different from the rest of them - it's a teriparatide injection that contains a synthetic form of natural human hormone called parathyroid hormone. It actually causes your body to build new bone, not just to strengthen existing bone. It is so different from the other osteo drugs, that you might want to talk to your doctor about it.
I hope you can at least get a bone density test soon so you'll know whether you need to be concerned or not.
Hugs, Karen
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Hi dear ladies,
It' really terrifying! Taking AI' is bringing about pains and depression - you should take medicines against! Causing height pressure and height cholesterol - take medicines against!
Taking all sorts of vitamins supplements on your own too, what are we coming to?
I'm really afraid sometimes!
Take care!
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What a cute picture slousha! Who is that cute little baby??0
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Hi Omaz,
This little baby is my granddaughter Lana, born last year during my cancer therapies!
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OK ladies, I haven't posted here in a little bit, but wanted to step up & be counted.
I hit my 2 full years on Femara on Nov 16. I ran out of my 3rd month of generic Femara on the 18th & didn't have money to pick up Rx until after T-Giving. I thought when I finally did pick it up, that I was just going to continue on a "no AI" routine until the beginning of the year. So here it is, almost a month without "the pill". Honestly, I would love to report that I feel so much better, but in reality, I'm still stiff & sore when I get up, stiff & sore after sitting at work for an hour or so, still having hot flashes (Maybe not quite as many). The one big difference I can report---I went to the mall today to Christmas shop! I avoid the mall like the plague, always have, but today I knew there were several things I wanted to get there so I went. I had fun, I people watched, I slowly wandered through almost every store (unheard of for me-before or after BC) & most of amazing of all, I was very much in the spirit of the season.
I will resume "the pill" Jan 1, but I am enjoying my self-imposed "sobriety".
Merry Christmas all!
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Joni- A day of fun!!! So glad to hear that. I'm still kinda "blah" about the Christmas season this year.
Something I have been meaning to ask....Since starting Femara, I seem to have a hard time crying. Not like it hurts are anything wrong with my eyes. But, rather, just kind of emotion-less. Have been to several movies in the last 2 years where my DH even shed a few tears...but not me. Then I've noticed situations where I know in the past, I would have cried, but now I don't. Has anyone else noticed this happening??
I'm glad you are getting a break from "the pill". I think it would do us all good to take one!!
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My crying game hasn't been affected, if anything it's worse & that's saying a lot because I cry on coffee commercials!
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jacee - I almost wish that I had a problem crying - it seems like I do it at the drop of a hat anymore. Whenever anything goes even slightly askew - I cry!!
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I understand about the not crying thing. I feel numb inside like no matter what happened in my life, good or bad, I would have no reaction. I am a walking zombie with no joy in my life anymore. I just go through the motions now.
No tree this year, minimal shopping done. Even wrapping the few presents I have seems like an overwhelming task. I'm not sure if it's the Femara or not. I've only been on it about 2 weeks.
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I wonder if the "not crying" is more a result of having no estrogen, rather than the femara itself. My estrogen is 0. It's definitely a tolerable side effect, just weird for me.
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Jacee, is having zero estrogen safe? It was a question I ask and my doc danced around the topic.I think she did not know the answer. What is your Onc saying. And wow, that is a testament to the Femera really working for you.
Interestig about the tears ladies. I am on anastrozole and the first two weeks I cried almost nonstop. Commercials, and even my own thoughts. I put my Christmas tree up and sobbed thinking back to when my children were little. I wonder also if it is the lack of estrogen playing with emotion.
My therapist tells me this is typical menopause emotion, but I have been in menopause for over 2 years snow since my first chemo.
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Jacee...I have no trouble crying and the reason being I"m so disgusted with the way I feel it makes me sad.So there are tears...I hear what you are saying.
Having no estrogen is NOT good. It has made my body have a numb feeling, no spark and get up and go. Can't wait till the Holidays are over.I feel almost like a stone pillar at times.
The temptation to go off of Letrozole is so huge, but I know I must suffer through this., I've gone this far. But the drugs to keep us well are crappy when it come to the rest of our bodies.
I've been in menopause for 15 years and still feel like PMS is my shadow. Ugh!!
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Merilee=My Onc said that was exactly what they wanted???? Yes, I guess it's good to know the femara is working, especially since I decided to only go on half a pill. Meet with ONC today. Really concerned about my bone health. My first dexa scan was perfect. Said my bones were like those of a teenager which was great. Anxious to see what 2 years of femara has done. Will report back.
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Jacee I am only taking 1/4 of a pill and can feel it. The onc team hopes I can build up a tolerance. I had a hideous experience with Tamoxifen a few years ago so I am trying to be more cautious.
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Ladies, why don't we all try together to figure out how to feel better? If we keep telling our stories and sharing our observations and insights about what helps us navigate Femara Funk and what doesn't, surely we can come up with something!
Let's see if we can't get happier!
I have mets now and zero estrogen is keeping me stable. So I love me some Femara because it's buying me TIME. BUT as long as I'm still here living on this stuff, I want to feel better and actually live.
I want to share some things I've been thinking about, and I would love your thoughts and feedback. First I need to give you some context so you'll understand where my thought stream is coming from... please understand when you read the next couple of paragraphs that it's not my purpose to recommend that you all try what I've tried, rather my point is to explain what I've been through in the past that led me to where I'm thinking now... particularly about how I might help myself get out of this funk. And I should probably mention that I take an integrative approach to my health -- meaning I do it all. I see two wonderful oncologists regularly, and I also consult a naturopath and occasionally a Chinese doctor. It all helps, and that's what I'm after.
Enough context; here goes...
I'm remembering something I learned a decade ago (before BC) about estrogen and seratonin. I had gotten in a "forties funk" that wouldn't lift and just generally felt tired and blue. I called a friend of mine who authors books and teaches seminars on herbal & nutritional healing to see what she would suggest. I told her I thought it was premenopausal hormone issues, and honestly I figured she would suggest something like black cohosh and wild yam cream... but instead her first question was, "When was the last time you had a dream?" Okaaaaay... whaa? But, funny thing, she was onto something -- I couldn't remember dreaming. It had been months. She said that was a clue that I probably needed a seratonin boost... that seratonin naturally diminishes mid-life and women often confuse the effects of that with the symptoms of estrogen drop. What I'm taking away from this experience is... I'm remembering that she told me if I had a seratonin boost, my hormones wouldn't bother me so much.
Sure enough, once I got some seratonin rolling (via 5-Htp), I started dreaming from the first night, sleeping deeply... and my happy came back. After a few months, I found I didn't need the 5-Htp anymore.
Fast forward a decade, to right after I had the ooph and started Femara and wanted help with learning to live with no estrogen. The ND I consulted told me to start taking melatonin every night, gradually building up to 20 mg per night. Well, guess what -- melatonin converts to seratonin in the body. It's not a magic happy pill or anything, but it does get me into deep sleep, and I feel better able to cope during the day when I actually remember to take it regularly.
So here's what all this leads me to wonder...
None of us here can belly up to the estrogen bar anymore, but I wonder if all of us on estrogen blockers need our seratonin jacked up so we can feel better.
Maybe this is why our oncs insist that we start on an SSRI when we start taking an AI??
SSRI stands for "selective seratonin reuptake inhibitor" -- meaning it makes whatever piddly amounts of seratonin you still have circulating in your system more available by making it pause in your neurotransmitter pathway gaps longer (that's a kindergarten explanation, I know, so if any nurses are reading this, jump in here and make this sound more intelligent! Haha!). And then, voila', you feel better.
Having said all of that, I tried an SSRI (Lexapro) for a couple of weeks a year ago, because three of my doctors (both oncologists plus my gyno) were urging me to start taking it when I was diagnosed with mets and immediately had the oophorectomy and started Femara -- wham-wham-wham, all in one month. On the pro side, Lexapro did ease the sudden onslaught of hot flash terror, and I felt further away from all my 'shock and awe.' On the con side, it made me feel listless, flat and sort of catatonic, but the worst se was I felt like it was repressing my respiration, particularly at night. That freaked me out, so I quit. I probably should have stuck it out for six weeks to see if those side effects eased off (and now I wonder how much of that might have been from my body adapting to Femara!). But I decided to just gut it out and experiment with natural remedies for mood lift. And I HAVE found some that help, but not as much as I would like. I still want to be happier if I possibly can.
SO... all that to say... here's where I am a year later...
What I desperately need now is 1) energy, 2) mental focus, 3) an end to the steady weight gain (20 pounds in the past year, HOLY COW!), and 4) a return of happy, lively me.
So once again, I've been reading my eyeballs out this week on the different anti-depressants.
Right now, I'm looking into Wellbutrin. It's not an SSRI type A/D, and from what I'm reading, it does not help with hot flashes like Effexor and Lexapro do (although you can take it in combination with Lexapro). But it DOES help with the things that are bothering me even more than hot flashes right now... energy, mood, and weight... and it looks like there's even a little cherry on top for AI gals in that it's reputedly bone-building, whereas some other anti-depressants can hasten bone deterioration. (But then again so can depression!)
I'm thinking it might be worth a shot.
I've been avoiding the A/D route for a year now, but you know what? Dang it, I think I need to live. The real me is/was a happiness rockstar. But this Femara Funk person I am now is sitting here looking at a pile of STILL-unpacked boxes that contain my beautiful, magical, enchanting Christmas village... boxes which have been sitting there for almost two weeks because I haven't mustered the gumption to set it all up even though it's one of my favorite things in the world and my children love it and I spent YEARS collecting pieces I adore... and I'm looking at those boxes and thinking DANG IT, I MISS ME.
So I think I might actually make that phone call to the psych today. I'm scared to do it, but I'm scared not to. 2012 has GOT to be a better year for me.
And I'm going to set out my Christmas village today. I AM.
Okay, I've blithered and blathered here long enough. Somebody else's turn now...
Thoughts on any of this, anyone?
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Lulu I love your double edged approach to combating the beast and will admit I do the same thing. My GP is also a qualified naturopath and often recommends the alternate when dealing with my finicky system. I can't take nasads as they give me stomach problems so I have been using boswellia, tumeric, fishoil etc for the relief of joint pain. I know I have very bad knees, in fact I'm going to see the ortho next week about replacement, but I also have a lot of other joint pain as well and even using all the alternates, I sometimes, well most times am not pain free unless I take a heavy pain med and I prefer not to do that as I know down the line I'm going to need my liver and kidneys at their optimal.
Almost three weeks ago I saw my doc and the with the usual complaint about the pain. He told me a story of one of his patients (no names just symptoms). This poor felow had bladder cancer, had had it operated on and continued to bleed and form clots in the bladder which caused excruciating pain.
There has been some research on Vit K as an anti inflamatory so after all the warnings that go along with Vit K, this man was injected. Three weeks later he was back for another. The doc was really surprised but the upshot is that that little jab gave this gentleman no pain, better sleep, more energy and he was happy for the first time in a long time because he was pain free. He now has that little jab every three weeks as that is about as long as the effects last.
He suggested I try it and so, of course, I said yes I'm happy to try anything that makes it easier for me to move. All I can say is WOW! Within a couple of days my energy levels skyrocketed and instead of looking at things and saying I must do that and never getting it done, I was looking and doing! In the past two weeks I have totally spring cleaned my house from top to bottom, changed two bedrooms around, cleaned cupboards and driven hundreds of miles without fatigue. I have always been a happy person but at times I was falling into the funk of whats it all worth but I will definitely line up for that little jab in a weeks time just to have the energy and lightness of heart that it gave me.
Lulu, I take melatonin regularly and that did and does help and I recommend it to alot of others as well.
Love n hugs. Chrissy
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Vitamin k, hmmm I am going to look at that. Coming out of chemo I used a b12 complex in drop form. That also gave me better energy but it is easy to over dose which would actually make me feel buzzy, which I did not like.
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lulu- "Maybe this is why our oncs insist that we start on an SSRI when we start taking an AI??" This never happened to me.
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