FEMARA
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I have just skimmed a few dozen posts and I appreciate the humanity and love and humor we are all sharing in this... I started Femara in December and felt instantly old-ladyfied. Creaky, achy, tired.
In early February my period suddenly came roaring back after having been suppressed by chemo, so I went off Femara for two months (I simultaneously but apparently coincidentally developed a cardiac issue and was hospitalized so we delayed Lupron). Anyway, I am now on Lupron, i.e., chemical menopause, and have back on Femara for about 6 weeks and so far I am not experiencing the nasty side effects!!! I am taking it in the morning now, so I have no idea if that's helping, or if it's the fact that I am on steroids (which I hate but need due to this pesky pericarditis), or if it's because I'm not getting radiation anymore, or something else, but it is welcome! Maybe a two-month hiatus would do some of you some good??
I'm with momine and others on the diet thing. I love the book The Cancer-Fighting Kitchen. Straightforward info on foods to eat and avoid, great pics and recipes! And less overwhelming than the endless naturopathic websites that confuse the piss out of me.
I'm also getting acupuncture. A clinical study found about 36 percent of women on AIs for breast cancer reported improvement in symptoms with acupuncture -- and nearly as many women in the control group reported benefits from "sham" acupuncture, so I say, heck, why not!
Best to all.
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"And less overwhelming than the endless naturopathic websites that confuse the piss out of me."
LOL, I hear you. I have concluded that it is because half those guys don't know $%^& from shinola. My mom went to a couple when she had cancer, and they all gave her stock advice (no sugar, no gluten, no dairy, bla-bla - much of which has little or no basis) augmented with whatever special tricks the particular guy had. One was into herbs, another believed in waving a pendulum in front of mom's nose, a third gave her acupuncture.
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WHOA! ***smacks head*** I forgot to wave a pendulum in front of my nose! BBL...
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Don't know how much of it is in my head, but I am convinced that acupuncture does help - somewhat, at least. It's not a side-effect cure by ANY stretch of the imagination, but I seem to feel better when I go than when I don't go. I actually didn't know if I "felt" any better or not, but my husband says that I move MUCH better - so I guess moving more easily translates overall into feeling better....
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Here's the NYT article that I very sloppily summarized, about acupuncture's effectiveness in treating side effects:
http://well.blogs.nytimes.com/2013/12/26/acupunctu...
The acupuncture people get very defensive (see comments) but honestly I read it and thought, "Great, it works!" Even if it's partly the idea of it, or the idea of someone giving my body attention and care. I talked recently to a physical therapist friend who is getting trained in a more western-based version of acupuncture, and she agreed with the traditional acupuncturists that the idea of "sham" acupuncture is misleading, as the body is highly sensitive.
Anyway, perception is reality, and if changing our perceptions improves our realities -- without a lot of drugs and money -- I'm all for it!
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I think psychology might have some effect on hot flashes. I have noticed that when one starts, the intensity and duration can be reduced if I relax and drink a sip of water. If, on the other hand, I sort of freak it tends to get worse.
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Momine, you are right about the hot flashes. Mine are well controlled now except if I get stressed!
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I'm on my second box of Femara and this past week have started getting shooting pain in my stomach (upper abdomen) in the evening when I lie down. The side effect listing does say upper abdominal pain... Has anyone else here had this? If so, did it go away?
Jenn
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Jenn - I have that too, off and on. I thought it was the ibupropen basically rotting my tummy, but it may be the Femara. Will be interesting to see if anyone else has the same issue.
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jenn,
I am 18mths on Femara, I had terrible abdo pain around my lower left rib for ages. I did not realise Femara could give you abdo pain. my medics could find no cause for the pain. I wonder if it was/is Femara?
The pain has largely gone, aside from the occasional twinges.
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I saw my oncologist 10 days ago and he had me discontinue Femera due to my severe SEs. I'm now on a 1-4 week cleansing period and then will try Aromasin. I'm hoping the SEs won't be as bad....if they are, then it's on to plan C....tamoxifen. I'm starting to feel much better though!
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jenn, i did start having random upper abdominal pains about my 10th week, and now i am in my 13th week. mine come in a pill bottle with 90 day supply. yours come in a box? this week, it seems like every bone in my feet hurt like crazy, but i am not depressed like i was last week. i didnt even get out of nightclothes if i didnt have to, but, i am not getting enough excercise on the days when my joints hurt, especially on the days when enthusiasm and joy wanes. so far, better than my 4 mont tamoxifen, and also my 6 month arimidex.
what i loved best? my 8 week break from all of them, before starting femara! i actually began to feel much like my pre-bc self!
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kathec, I'm starting to feel more like my old self after being off of Femera for 11 days. I'm not looking forward to start Aromasin in about 3 weeks (I'm taking my entire 4-week cleansing time)
My feet still hurt but it does get easier after walking for a bit. I ordered me some comfy walking shoes....I hope that helps.
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bronski, i so love good walking shoes! i love SOME of the merrils, especially! i just was in really good shape before all of this, i guess i am mourning the loss of of my pre-treatment self.... but it is weird when i get up in the morning, when my feet hit the floor, it sounds like snap crackle and pop, or rolling dice, but louder!
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Kathec, have you tried Go Walk? Bliss.....
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OOOOh, not YET, Tammy M43, but i guess i will go try! Thanks!
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For those of you wondering and deciding which hormonal medication to take, I would like to try to ease your mind a bit. First advice....Think positive! Not everyone gets side effects! Don't start worrying about if you'll get them before even starting the med....better for some of us not to even read the included information. Your oncologist should know your complete medical history and will make a recommendation. I just listened to mine as she briefly told me the main side effects of each. I decided on Femara and against Tamoxifen because I heard the word "cancer".... previous to BC I've had appendiceal & colon cancer and also had cervix pre-cancer cells and a large ovarian cyst back in my 20's I have been on actual Femara (not its generic Letrozole) since March. I take it at bedtime just in case it decides to make me tired. I sleep fine and the slightest side effect I may have from it is I feel I'm a little extra stiff in the morning upon rising but only for about the first 5-10 minutes...I'm fine the rest of the day. I have some friends who also take AI's...and some have been on them for over a year with no major or debilitating side effects. If I do ever get more serious side effects, I'll probably stop taking medication. If cancer returns or appears somewhere else, I'll deal with it then....just like we all had to deal with this BC curse upon discovery. So many cancers are treatable and even curable nowadays....just make sure you have frequent and all recommended checkups and blood workups with Oncology! God Bless You All for a healthy future :-) Sam
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Bonski 68
I too am on an AI break for about 10 days now! I first tried Arimidex for about 3 weeks and was so achey, tired and felt like I walked like a 90 year old. MO switched me to Letrazole. I used that for about 3 weeks and then tried the brand name Femara to see if it made a difference. So after about 2 1/2 months of achey pains I got a break and will be trying Tamoxifin.
I've already had a hysterectomy, so some of the cancerous side effects don't seem as relavent to me. MO said Tamoxifin has been shown to be slightly less beneficial than the AIs. But when you think about quality of life (at least how the AIs have been taking away from my personal quality) I am excited to try Tamoxifin. I've also been worried about the bone health side of the AI's. It is truly hard, individual choice, with NO single one correct solution.
Kathlec
I totally know what you are talking about with the crackling. I am having a hard time returning to being back in shape..... I find it really hard to run even at a much slower pace than I used to.
On a general side note: This weekend I had swelling in my knee. I've had pain in it for about 4 weeks now and have kept MO in the loop. I called my nurse line to report it as out of the ordinary. I was ok taking motrin and using ice, but wanted to feel "safe". They wanted me to go in immediately. I was kinda surprised, but went in. They called in the ultrasound tech on call and had her look to make sure I didn't have a blood clot. DVT, Deep-vein thrombosis is more common if you've had some of the types of chemo. I am glad to have found out that I am fine. I was able to continue about my plans and just took motrin. MO is looking into the underlying cause of the continual knee pain. It is suspected to be SE from the AIs though.
Take Care Ladies.
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Hi Ladies,
Have been away a bit. Moved my youngest to Boulder to start law school-a very bittersweet time.
I see my MO Thursday for another discussion about Femara. Since this is my 3rd round-and have already tried another AI and Tamox I really want to discuss the risk/benefit ratio and Quality versus Quantity. I have used the numbers tool and plugged in with and without the AIs and/or Tamox. As you know there is not a slot to use Herceptin-but I was only able to have 20 of the 52 weeks before my heart decided to hate Herceptin. I tell myself I can deal with the big belly, weight gain, insomnia, depression. Even the horrid horrid nightmares now that I have drugs to help with those (got a new drug today-was still having with Minipress). But the pain. OMG. The joints, muscles, bones. The pain is every single day. Narcs take the edge off. OTCs do not touch. If I am REALLY REALLY busy at work and no one bothers me and I get in the zone----I do Ok for a bit. But I really hurt. And I am tough. It was a year in April with a couple of breaks. I know it will come back. Every doc I see tells me I should not have BC. That I am an outlier with one of the most aggressive forms of BC they have ever seen. My MO smarted off one day and told me maybe I had fibro. Fortunatly for him his voice did not rise. I like his wife. Only reason he does not walk with a limp. ......
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Ha! Susan! Welcome home! i did have my regular meeting with onc today. He's pretty good. He was very concerned especially with the shoulder and ribcage unrelenting pain. he would like me to wait at least two months to do a pt/cat scan just to take a look, on the bc side where nodes had all busted open. during which time he would like me to continue with femara which i was agreeable to. my nightmares and depression have abated. so i think the femara for me is just going to be the thing that keeps just doing a different thing each week. i think i will be able to keep doing it, as long as i tell myself, oh, thats just the femara...he didnt say if he would have me try another after that. but it was the best clinic visit we have had yet. and, he asked me please to start wellbutrin. i have been putting it off.
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kathec,
I'm so mourning my pre-cancer life right now and started therapy yesterday after revealing dangerous thoughts to my GP yesterday. I'm hoping it will help with the depression....they are also ready to help me deal with SEs of the AI when I start up again. I too was very active before treatment and now I can hardly get out of bed....physically, I'm starting to feel better, but now mentally I'm having a tough time. If it's not one thing, it's another
. I'm looking forward to getting my walking shoes in the mail (hubby is military and we're stationed in England....takes a bit longer for mail to get here). I ordered Sketchers Women Go 
Livin-in-sunshine,
I had a hysterectomy 13 years ago, but had blood clots during chemo....tamoxifen is plan C if AIs don't work out. I'm willing to give the second AI a chance and tamoxifen if the AI doesn't work out but hubby is with me that quality of life is more important to me. It's a tough decision, that I hope I won't have to make.
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Bonski:
Hang in there! I'm glad you opened up to your GP and shared your thoughts. If it helps to know, some women have reported that feelings change often from the AIs. So maybe your depression will leave quickly, if not, I hope you find the group support to be of help. Awesome women here!
Exercise throughout the whole process has helped me tremendously. I hope those shoes arrive quickly!
Take care.
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Bonski68, I hope your shoes arrive soon and you can start to do the "happy dance". I echo livin-in-sunshine....exercise has been my best friend throughout treatment, chemo, radiation and now hormonal therapy. It's often hard to get started, though. I used my walks as quiet time to think about my treatments, think about my friends and loved ones, and commit myself to a healthy life. I used to "mantra" over and over....."Me first, me first, me first." Because I was always the person that put my job or my family or my household first...definitely had my priorities messed up to the detriment of my health. Start out slowly, you don't have to race anyone. LOL
MsP
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Bonski. Be proud and stand tall for opening up to your GP. Part of my treatment plan is seeing a therapist. I balked and fought @ first. I am a nurse with a master't that includes clinical child and adolescent psych in addition to other clinical certs. Told the team i a not going to someone-people come to me. Well-let me tell you. It is a good thing. And I take drugs. Effexor ER for the hot flashes. With the SE of helps with depression. A good choice. And I have lorazapam for the anxiety or whatever. I have 2mg tabs and can bite them in half. Yes. I am a nurse. And bite them in half. I am almost 2 years out-and it still sucks big green weenies. We are fighting the Big C. Do not screw with us. We will do what it takes.
Let us know how you feel as the days go on. Because we really care. A bunch.
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Bronski, you are still pretty fresh out of everything, and probably really just beginning to process everything, it's alot to go through. wow, i would have been so scared to have blood clots during chemo, but then again, every little thing freaked me out during chemo! it was the scariest part for me.
When i talked with my onc yesterday, i think that he is starting to believe that i just be one of those women who do not tolerate them. And i guess then, i would just have to take my chances too, because the quality of my life matters to me very much.
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kathec - I am making that difficult choice myself right now... quantity or quality of life. Complicating things is the fact that my husband has a serious incurable illness; the prognosis of which is unknown. According to the calculators, my life expectancy can be increased by Femara by 31 days.
With a Stage I diagnosis, and a risk recurrence of less than 1%, it is difficult to justify staying on a drug that is starting to cause my quality of life to deteriorate rapidly.
In the beginning, my MO said that with my dx, if I tried the AIs and found that the SEs were too severe (they are) she would feel comfortable letting me go off drugs completely.
With that said, I have no intention of trying either Aromasin or Tamoxifen.
HOWEVER - I still remain a cheerleader for all those women out there who are just getting their prescriptions! There are thousands upon thousands of ladies who have NO side effects! They are not posting here... they are out living their lives.
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31 days!!!!! Seriously! What calculators are you using? The ones that hit with google.
31 days!
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SusanHG123 - I'll have to find the thread where the link to the calculator was posted. Had something to do with AIs and mortality rates. I just sat here and stared at the number.
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Blessing. Thanks. Very much. If mine is anywhere near that-Femara is being kicked to the curb.
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i think its probably more than that for some one at a later stage,but if you find that bessing i would like to see it. i think it mostly prevents reoccurrance during the time you take them, and for a while after that. anybody dare ask their onc?
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