FEMARA
Comments
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Tryn2, I believe you are starting the Palbo trial. Maybe that's why you say you can't go back on the tamoxifen. Anyway, Kathec is correct; honeybair and you should not look backward or beat yourselves up. I was diagnosed in 2007, had bilateral mast, did my 5 years of tamoxifen and looky what 2014 brings- a spanky-shiny local recurrance with unclear margins and bone met to a rib.
Kathec is correct too in saying it's all a mystery. So far since my diagnosis I have been lucky to remain living in gratitude. That is also a mystery.
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kathec - ty... I am suppose to be starting a drug trial and if my onco put me back on Tamoxifen then I wouldn't be accepted into the trial as you can't yet have been treated for your mets. My onco said one of the drugs in the trial everyone gets may be even better than Tamoxifen (Letrozole) and the other drug is known as Palbociclib and it is randomized as 66% get it and 33% get a placebo. My onco said the feed back coming in is very positive. And yes your very right.. one oncologist here in London said take 100 cases of breast cancer and you'll have 100 different cancers.
intothewoods - yes it is a mystery and yes that is the trial (hopefully Thurs. I start) as long as the ECG's and bloodwork is ok. Hopefully your cancer is very very slow moving!
Cathy
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tryn2, you probably did already say so, i just forgot! i wish you the very best, and hope you keep coming here to tell us how you are doing? femara is not so bad, sometimes i think i complain too much, and i am tryn2 (!) get better about that too. bc really turned me into a scaredy-cat wimp for awhile. i will be certainly hoping for you very much on thursday, that you will be getting the goods!
intothewoods! my bad memory again, please whereabouts are you, again? you probably told me that already, too! i am in silverlake, between glendale and hollywood. a real little neighborhood, where we do know and watch out for each other...
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Kathec, I have lived in Silverlake twice!!! Last time on Lucile Ave north of Sunset. I've been in Playa del Rey for past 12. Silver lake IS a wonderful neighborhood. Do you remember the Sunset Junction Street Fair?
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yes! it was fun, altho some years it did get kinda crazy! I knew i couldnt drive my car that weekend, or i would never be able to park again! many good memories, it's funny, i was thinking about it, yesterday. sort of like mardi gras lite! i know exactly where lucile is, 2 blocks away! they have a farmer's market at that little triangle, i guess it's called sunset junction, every saturday now. o man, if you lived here now, i would be sitting on your lap! fandango salon moved, but there is "morning and night coffee there now, a hub of activity. sort of reminds me of northern exposure somehow. ive been her 15 yrs now, longest i've been anywhere. im not even sure where playa del rey is, i'll have to go look!
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Ha! such an eastside girl. Playa is just north of LAX and south of Marina del Rey
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kathec - thanks so much! I love and need this place for learning and venting and sharing, I will be here and posting. Sometimes I post same thing in a more that one thread and I forget who I told what. So many threads and so many really wonderful ladies!Cathy
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Tryn2staycalm - thanks for your words of wisdom... I'm so sorry to hear about the lung developments.
You are absolutely right - wanting to get off the AI just because of a few aches and pains is just not worth it, considering the potential of these drugs to prevent recurrences in so many women. That's one of the thins my MO told me before I started: that I was lucky to have these drugs available to me, because many women - depending on their diagnosis - do not.
But my situation was a bit different... A year on Anastrozole resulted in life threatening SEs, and a change to Letrozole was putting me in the same position. Given my "less than 1%" risk of recurrence (very tiny, early stage cancer, maximum surgery, no evidence of IDC in final path report) and my personal situation (DH with incurable illness) my MO gave me her blessing to stop all drugs now.
And the reality is that even after faithfully taking the drugs for the requisite 5 years, there are no guarantees.
But I do want ladies to know that even though I stopped the Letrozole last month, and do not plan to try either Tamoxifen or Aromasin, I AM a very strong advocate for both the AIs and the SERMS.
It breaks my heart to see newbies on the boards reading horror stories - mine included - and say "I'm not taking this drug because I don't want SEs."
Here's the truth: you won't know until you try, and even if you do experience some SEs there are options. You keep moving and you stay in close contact with your MO. There are meds you can take to mitigate SEs, and there are different drugs you can try. BUT AT LEAST TRY!
There are many women who have few or no SEs at all, but they are not posting here. They are out living their lives.
Thanks again, tryn2staycalm, for a timely reminder.
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...that is why i am glad tryn2staycalm told us her experience,too. not to scare us or any newbies,but just to remind us that we are lucky to have such a powerful tool. it does help me to get past any issues with it. look at chrissyb! she's goig great on it! and i hope the same for tryn2, for sure.
haha,intothewoods! so funny, i am such a kind of hermit, and i never asked or was told, that i am an eastside girl! but i guess now that i think of it, i have been to several parts of what i guess they do call the westside, and it's pretty nice too. i have only been to lax a couple times, but my man's one sis lives in beverlywood.
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Hi ladies, I just want to echo what Blessings says about these medications and how fortunate we are that they are available and are so powerful! I wanted to add that I am one of those who are out "living their lives" on this medication but I definitely post when appropriate even though I am not suffering....Because I want everyone to know that it is highly probable that you will not have side effects and if you do, there are things you can do to feel better. I hope that we are all protected by this tiny pill and that the future will bring better and more powerful treatments.
Love, MsP
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hi,MsP!
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Hi ladies....can't remember now who asked about back pain......lol....I had severe back pain for over a year after starting L....mostly upper....I finally started having regular back massages with magnesium oil.I had them once a week for about 4 months and I am pain free now except for the occasional pain in my lower back that if I exercise more on a regular basis, disappears.
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I was having terrible back pain, it was getting progressively worse. My pharmacy ran out of the generic I was taking and switched to a different brand - voila - no more back pain. It could have been coincidental, but this drug is weird, so I'm thinking it was probably the change in medication.
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do you know which one that is good for you? i am curious, because my 2nd bottle of 90 is different than the first bottle of 90
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Blessings - Your so welcome. This is the nice thing about this place. We can share and learn from each others mistakes. I'd love to think I helped even just one person. That is why I donated my DNA for research in Sudbury and why I'm doing the same here in London. Donate blood here for studies and they are going to ask Sudbury to send them a piece of my original primary (yes saved there). I also signed up for further studies (other than this drug trial) that they can use any of the above. I'm off shortly to my cancer center and get my final tests done. Can't wait till Thursday to get the meds!Cathy
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Scottie and gardengumby - I asked about back pain
Thanks for your comments. Scottie -I go for regular massages like you - what a great idea to use magnesium oil!0 -
Ladies...I have 6 bottles of Femara that are unopened, but expired in 2012/2013. I can't bring myself to throw them away, due to their cost for some. I just don't need them. Would they still be beneficial to use? My pharmacist told me it is fine to mail them to someone. If someone can use, please let me know.
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jacee - did you quit taking letrozole altogether? I thought you were doing a half a pill a day?
Kathec - this is the third generic I've been on. First was Mylan, Second was CARA, This one is APO. However, just because the back pain went away, doesn't mean it won't come back. When I moved from Mylan to Cara, the SE's changed as well. It was awhile ago, and I cannot remember exactly what changed, but do remember there was a difference. I've another 2 years, 4 months and 13 days to go on these things, so I would expect that I'll still have more changes. As I said, back pain - gone (for now anyway). Weight gain and hands hurt, though, with no change in eating. So, I guess I'll have to bump up my exercise.
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hey gardengumby! it's funny, i have the weight gain,too, and i hardly eat anything at all! I am trying to eat more, though, iv'e been told that if your body thinks it's "starving", then it tries to hang on to everything. i am planning on amping up exercise though, too. gonna head over to the "let's post our daily exercise" thread, and introduce myself!
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gardengumby.....I am still taking 1/2 a pill a day of the generic letrozole. I thought my side effects got worse when I went from Femara to the generic. Another BCO member sent me this Femara that she never used, so I could see if my s/e's went away. I actually ended up doing better on 1/2 pill of the generic. The extra Femara I have are sealed and never been opened.
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i am gonna go see if i can find some magnesium oil too. i do soak in epsom salts, all the time, and i did find this cream called "topricin" its all natural, and it really seems to work for me. i love the stuff, not stinky, not greasy, and it is much cheaper on line than the store, when you can find it. for my feet, hands, and ribcage, that always hurts, and affected breast, too. i have told lots of people about it. i was sceptical too. my BF says it doesnt do a thing for him. he just uses a little dab, tho, and doesnt really spend any time rubbing it in. next time he asks me to massage his back, tho, i am going to use it,and maybe alternate w/ magnesium oil.
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Oh - got it.
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Found someone who can use the Femara. Glad to help0 -
Cathy tryn, I've just read your post about the hot flashes on Tamoxifen. When I was on Tamoxifen, I had terrible hot flashes. If I went to get a sandwich at lunch time, a short 10 minute walk, I would be soaked with sweat when I stopped. Not good when I was working at the time!
I have had no such problems on Femara. A warm feeling at the most....definately doable!
Best wishes for Thursday and I hope if you get Femara your SE are mild :-)
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I was on Femara for 2 years, after being on Tamoxifen for 5 years, as a result of my first DX. Looks like I may be on it again due to this second DX. I'm hoping for mild SEs, but time will tell. Nonetheless, I feel blessed, and I truly believe that my previous 7 years of Tamoxifen and Femara as adjuvant therapy played a large part in keeping my recent local recurrence of BC at bay. So, I'm willing to do it again for as long as it proves effective in preventing a recurrence.
One love,
tp4ever
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kathec - thanks for the tip on "Topricin"
I've been using Aspercreme on my lower back; this Topricin looks like it might work better (even on "trigger finger"!) and the price is reasonable!
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Tammy - Thanks for your info reguarding s/e not bad with Femara vs Tamoxifen! I go back to cancer center yet again today and if all goes well will start my first day of my drug trial. So will know soon.Cathy
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Has anyone ever taken a break from femara ? I've been off for 1 week today . My body feels so good and my mind is much clearer. I'm not going to stay off but I had reached a point I felt I needed the break. I'm not sure how my Mo would feel about this or what the reprocutions may be. Just nice to feel somewhat normal for a minute. Tina T
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I haven't taken a break. I was planning on one with my MO's permission, but she withdrew permission, so I didn't do the break. I'm really looking forward to getting off the stuff in a couple more years, though. I just noticed your Dx, so assume that femara is a lifetime medication for you?0 -
I have taken a one month break and a three month break.
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