I say yes, you say no, OR People are Strange

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Enjoyful~If the dressed up cheese doesn't work, have you tried Unisom? I use the generic one and have for years, also 10 mg of melatonin without fail. The Unisom is different from the other OTCs. It's not Benadryl like most of the others.



    Paula

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited January 2013

    While it's true that not everyone experiences the same S/Es on the aromatase inhibitors, what Sunflowers says seems to be borne out -- the longer you're on them, the less you suffer!  I did have the joint aches, various trigger fingers and so on during the first year on Femara, and now that I'm into my "final" year, it's mainly my wrists that occasionally give me grief, especially when the barometric pressure changes.

    Having said that, when my pharmacist filled my Rx with a TEVA generic by mistake last year, the original symptoms returned.  I got back onto Femara and they levelled off.  Now I've found out that my supplementary insurance has decided to NOT cover brand names if a generic is available, and so, not wanting to spend over $500 for 100 pills, I've decided to try out a different generic (this one made in Canada).  Crossing my fingers that I don't notice a differenceUndecided.  BTW, if I were over 65 and on Cdn medicare, the same would apply.....no brand names if generics are available.

    E -- Wish I could give you a surefire answer for sleeping.  I take a very low-dose Ativan and it keeps my RLS at bay.  Also tried Unisom (as per Paula's suggestion) but it left me with that college-age hangover feeling in the a.m.!

  • gardengumby
    gardengumby Member Posts: 7,305
    edited January 2013

    Kam, have you checked the price at Costco?  I take letrozole (generic form of Femara) and my last refill was less than $20 for a three month supply.  The ones before were $36 for three months worth.  Those prices are without using insurance - as with insurance I can get only one month and the minimum OOP is $10, so it's often less expensive for me to not use my insurance, and it's always more convenient, as I hate having to get a refill each month.

  • gardengumby
    gardengumby Member Posts: 7,305
    edited January 2013

    About the symptoms going away - I honestly don't think they do - I think we simply get accustomed to how we feel and it becomes the new "norm".  Now I am basing that upon my own recent experience only - but I had actually thought I was basically symptom free - then spent a month in Hawaii, had relief, and now realize just how much I am actually affected by this @#$%.  But, as I say, I am sure that I'll grow re-accustomed and think it's no big deal again within a few more weeks (or months).

  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited January 2013

    I stopped taking Arimidex 6 months ago but the pain didn't go away.  But I don't have ovaries either.

    http://www.breastcancer.org/treatment/surgery/prophylactic_ovary/risks

  • gardengumby
    gardengumby Member Posts: 7,305
    edited January 2013

    E - when you have insomnia do you get out of bed and do something, or do you lie there and stew, or what?  I used to get up and do something, as I'd get so frustrated laying there and having my mind race.  My husband asked that I not do that anymore, as he'd worry when he woke and I wouldn't be there, so now I tend to stay in bed and think the happiest thoughts I can muster up - usually I fall back asleep.  (Though to be honest, sometimes I do get up and get on the computer - those nights I NEVER seem to get back to sleep.... ).

  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited January 2013

    I take clonazepam for sleep.  Some times it works some times it doesn't, but I get night terrors (thank you Mr. Parkinsons) and it does help for that.

  • pip57
    pip57 Member Posts: 12,401
    edited January 2013

    Blue, I take that at night too.  It just quiets my brain down.

    What I wanted to say next door was...

    Re father saving son with gun...kind of scary that he had a loaded gun at the ready, even when he was completely taken by surprise while removing his infant son from the car.  I really hope that the same son doesn't discover it when he is two or three years old.  

  • RetiredLibby
    RetiredLibby Member Posts: 1,992
    edited January 2013

    GG, I always lie there, because my mom used to say it was better to just lie there and "rest" than to get up and do something. If I wake all the way up and my brain wakes up, it takes me 2 hours to go back to sleep. I used to take Valerian (foul-smelling stuff!) and it worked nicely, but one day I mailed off a bill with no check and another one with the wrong check and forgot to seal the envelope of the check I was sending my mother, so I stopped taking it. Not sure if that was the cause of my spate of serious absentmindedness, but was too shocked to continue.



    Sometimes I can fall asleep if I give my brain something else to do. For a long time, I mentally counted all my white blouses (at the time I had 25) and that worked for months. I don't have anything like that now. I do know that I can't watch anything too exciting or too interesting or read anything too exciting or interesting before I go to bed, because it gets my brain all excited and it wants to play. Really, it is like having a separate two-year-old in my head!



    L

  • gardengumby
    gardengumby Member Posts: 7,305
    edited January 2013

    2 separate two-year olds - what a fantastic description!  I used to rage at being awake - THAT really helped Laughing.  I've found that the less I fret about being awake the more likely I am to go back to sleep.

  • IllinoisLady
    IllinoisLady Member Posts: 29,082
    edited January 2013

    Wow...maybe now I know why I can have a really bad day when the weather changes but after four yrs. don't feel enough se's to feel any concern of needing to do something.  Down side....I'll be two months shy of 68 when I reach yr. # 5 on the Arimidex.  Don't know what if anything will come next.  Also, don't know how brave I will feel if the Doc says to go without then.  Certainly is a welcome thought to give it up on the one hand.  I'm not much of a pill taker and the longer I can go with the least amt. of little round goodies to keep me going , the better.  But, for now, I notice very little and I am grateful for that.

    Enjoyed hearing our President speak today.  He made such wonderful sense.  It is too bad that extremists still are looking at this like the biggest threat that ever happened to them.  Civil war again, REALLY!!!!  Ok, I may as well admit it, my mental faculties these last few years leave a lot to be desired, but there are a whole lot of people who still can't tell that the Second Amendment is still the second amendment and no one is taking anything away from them.  They should be far more worried that the criminals will break into their house and get their guns.

    Seems to me that any excuse to cast Presidential authority in the worst light possible is still uppermost.  At the same time, it is my feeling when people behave ( sadly even some in local and state & federal government  ) as they are doing, it is just my opinion, it allows them to disperse some anger and upset with many other areas of life.  So sometimes I fear it is about several things and the new gun issues are the catalyst for just letting go.  The rhyme and reason just isn't there.  These measures will all take time....so worth it in the end.

    Jackie

  • alexandria58
    alexandria58 Member Posts: 1,588
    edited January 2013

    HL - get a book on tape, something you know really really well, but like, and play it.  I've heard the first few chapters of Lord of the Rings about two hundred times.  I like it enough to listen, but know it well enough that there's no suspense.  Usually, don't get past Gandalf's arrival in the Shire.  There's something so soothing about the sound of a book being read. i periodically trade it  off with Pride and Prejudice.  Pretty much the same thing, not worried that Elizabeth's going to find true love.  If not sleeping alone, (my DH and I both snore terribly, so separate bedrooms) downloading onto an i-pod and listening with earbuds works, too.  I do that when I travel.

  • RetiredLibby
    RetiredLibby Member Posts: 1,992
    edited January 2013

    Ooooh, Alexandria, you just may have something there! I used to listen to music to fall asleep (my mother always had a radio playing classical music in my room from the time I was born to make me fall asleep). DH can't go to sleep to music, but we now have separate bedrooms, too, because of megasnoring (his) and "active dreaming" (mine). Music is still out because the doors are open, but mp3 player might indeed work. I just need to give the 2-year-old something to do while the rest of me falls asleep. Once the rest of me is asleep, the brain (sort of) follows -- I dream extremely vivid dreams all night because the brain is bored all alone and tells itself stories, but as long as the rest of me can get good sleep, everyone is happy. I would be a neurologist's pet project!



    L

  • pip57
    pip57 Member Posts: 12,401
    edited January 2013

    I listened to books on tape when I was getting my chemo.  Now it brings back an uneasy feeling when I try to listen to them.  I do find playlists on my ipod and some podcasts do the job though.  I have the SleepPhones headband and it is quite comfortable for sleeping.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited January 2013

    ((((E)))) Been there, felt that, as you know. Arrrrghhhhh! Ask you doctors whether you are a good candidate for any of the following (which don't have a contraindication for cancer that I know of:

    --Neurontin (Gabapentin)

    --Risperdal (risperidone)

    --Seroquel (quetiapine)

    --Sonata

    --Lunesta

    Only the last two are "on-label" for sleep, but the first three are often used off label for that purpose and may be very effective, although risperidone can accumulate in your system, like so many of the meds.

    Your insomnia may possibly be related to the rads marathon you went threough. I know most people feel fatigued after rads but your ability to regulate sleep may also be compromised.

    ((((GG)))) Perhaps it is a combination of things? The climate bringing out more stiffness. I'm sorry it is so bad.

    Off to read the last page of our fast-moving thread....

  • kayfh
    kayfh Member Posts: 790
    edited January 2013

    There was a time, before electricity when people slept in two phases. First sleep, lasted about 4 hours, then they woke, talked with family, had carnal knowledge of their partner ;-), or just quietly stayed in bed. Then came Second sleep. Lasted about 3 hours. That was how, we used to sleep.

    Now we really want to sleep 6-8 hours. Maybe we should try to adopt the First and Second Sleep of our fore bearers. Instead of raging against not being asleep in the middle of the night, maybe we could quietly contemplate what we do have. The good luck to even have a bed. I'm not saying that I have figured it out, how to live on not enough sleep, how to go to work and be productive, how to deal with the overwhelming fatigue that seems to accompany this disease and its treatments. I haven't. But I am trying to figure out how I can live with it without adding any more medications to my life. I have been there and done that.

    So. For just tonight I am going to try to enjoy being like my Victorian ancestors. But unlike them ( my ancestors were poor and they likely slept 3 or 4 to a bed on uncomfortable mattresses in really cold rooms) I am incredibly privileged. I can snuggle under my down duvet, on my very comfortable mattress, in my centrally heated home with only my DH for company.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited January 2013

    Couldn't agree more, kayfh.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited January 2013

    Another med - often prescribed for sleep even though it is an anti-depressant - Remeron (trazadone).

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited January 2013

    As for sleep:  We keep hearing (and reading) that we "should" be getting 8 hours of sleep each night.  But sleep needs are individual, and age-related.  When I was going to school, I was in bed no later than 9 p.m. and up at between 7 and 7:30 a.m.  In college, I was usually in bed by 11 and up by 7:30 (unless I had an 8 a.m. class).  When I was working, I was in bed by 11 and up by 6:30.  Even on the weekends (darn it!).

    Now that I'm retired, I'm a night hawk, and find that I do quite okay with between 6 and 7 hours nightly.  Can't nap during the day.  Dh on the other hand can fall asleep at the drop of the hat.  not fair!! The only thing that bothers me is if I just "cannot" get to sleep, no matter what time I go to bed.   Usually the problem is RLS, hence the ativan.

    GG -- I also suggest that the weather has much to do with your aches and pains, considering that you continued to take letrozole while in Hawaii -- besides which, it apparently takes several months for the AI to be totally out of your system.  Methinks you really should retire to the Pacific!  What do you think planes were invented for?!!!!

  • River_Rat
    River_Rat Member Posts: 1,724
    edited January 2013

    I take a low dose of trazadone at bedtime and it helps me get to sleep and get back to sleep when I wake during the night.  But the biggest reason I take it is to help with horrible leg spasms that I used to get at night.  I still get them occasionally but it used to be a several times a night thing.  To clarify, I didn't have that issue until after chemotherapy for my lymphoma and after a certain antibiotic for a pneumonia I got during a nadir.  I was having leg cramps from the chemo but then after the antibiotic I developed spasms of the ankle tendons that were worse than the leg cramps.  Once in a while I try to stop taking the trazadone but the spasms come back.  I do have the spasms sometimes during the day but then I just put on ankle supports and grit and bear it.

    Edited to add that trazadone is also used for RLS.

  • Chickadee
    Chickadee Member Posts: 4,467
    edited January 2013

    I was going to add Trazadone to your list Athena. My son found that effective for a time.

  • gardengumby
    gardengumby Member Posts: 7,305
    edited January 2013

    Kay - I never knew about the 2 sleep phases. It's incredible how much I learn from all you wonderful ladies!

  • gardengumby
    gardengumby Member Posts: 7,305
    edited January 2013

    Linda - retirement in the Pacific is looking quite good right now!

  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited January 2013

    Would any of you ladies be offended if I were to say I'd rather live in Canada, because of the atmosphere in the U.S.  I don't think I'd even like to visit right now.  This is in response to next door.  It is totally ridiculous.  How can you guys learn to love your neighbours if there is so much hate and so many guns.

  • Chickadee
    Chickadee Member Posts: 4,467
    edited January 2013

    I understand Blue. All one can do is remember they are not the majority and hang onto that hope.

  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited January 2013

    I went down to Vegas about 15 years ago and loved it, but times were different.

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited January 2013

    I can say, Blue, that luckily the extremists do NOT represent the US - they'd like to, but they are a losing political force. There are many, many places where reasonable people live.

    Remember the shock value - the media always publicizes the most scandalous views because that is what gets viewership and readership. Some people, having a tin ear, publicly go out and repeat those crazy ideas. They may scream louder, but that doesn't mean their views hold more sway. I don't know any extremists myself.

    The wonderful thing about the US is that there really is room for everything - for right wing extremists but also for the people who can't stand hem.

    Come on over, Blue. We on this thread are American too. It's still a great country. So great that it can accommodate all views and still stand tall. That says a a lot about a republic.

    I am not always proud of my fellow Americans, but this country does give me enough to be proud of. (ETA this sentence.)

  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited January 2013

    I don't think Jesus would be a gun-tooting nut!  Oh the hypocrisy of it all!

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited January 2013

    Blue - I think you'll find those politics in certain geographical areas.  After our last election, I think we are slowly "growing up" as a nation. Not sure why we are so recalcitrant, but we are a very diverse nation...hmmm, thinking....not that diversity is the actual problem, just those who don't like diversity.

  • Chickadee
    Chickadee Member Posts: 4,467
    edited January 2013
    I'm having a hard time watching th local news. Even though Austin is a liberal haven in a nutty state, the local news has been leading off with how the gun shops are selling out, everyone is stocking up on ammunition and the concealed weapon training centers are overwhelmed with applications.

    They are not the majority, they are not the majority, they are not the majority.

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