Here's what cheezed me off today

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  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    Be careful of effexor.  If you go online and look at reviews from real ppl. it has been dubbed " effects or " and has some of the most hard hitting SEs of the anti Ds.

    The number one complaint is that those who are on , feel like they cannot get off .


    Obviously some ppl do , but others remain on for life as they go thru bad withdrawal and hop back on. 
    Proceed with caution.

  • Rockym
    Rockym Member Posts: 1,261
    edited October 2012

    I would give that same warning to Benzos such as Ativan, Xanex, etc.  The doctors will tell you they will help calm you and they are right.  The thing they don't tell you is they are physically and mentally ADDICTIVE!  If you take them as prescribed (god forbid), you can get hooked in just a few weeks.  The body gets used to them and then more is needed for the same effect.

    I've never had an addictive personality, but Ativan got me good for a bit.  My body was in the worst habit.  Fall asleep at night, wake up at he magic 3:00a hour, take Ativan and go back to sleep. Breaking that cycle was one of the toughest things I had to do.  I still keep them around for an "as needed" situation, but I'll stick with my multi-vitamin and fish oil only!  Hopefully not taking Tamoxifin doesn't come back to bite me in the ass (or boob).

  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    True, Rocky.


    Having said that , I have a close  friend who has been on xanax for about 15 yrs. One pill a day and has never increased the dose.

    Her attitude is : " I have no SEs , I'm not anxious, it's like a daily vitamin to me or okay , maybe more like glucophage for a chronic disease.  If I  end up taking until I die ( which she believes ) so what ?  It helps what ails me, it doesnt hurt me "

    I see her point.

    At first, I was very concerned for her as the months went into years , but it was not like  a ' gateway drug' and unlike effexor it really did seem she had no SEs at all- except no more panic attacks for her.

    Perhaps this is the difference between ativan and xanax ? I dont know - maybe just between ppl.

    I do know I did a LOT of research on effexor app 3 yrs ago as it was suggested for me, and I am sooooo glad I read up on it.

    That is all I am suggesting- is that ppl really look into that drug before they take the leap.  The SE profile did not look good to me.

    Best wishes to all.

  • TallM
    TallM Member Posts: 1,596
    edited October 2012

    Purple-totally agree to look into the drugs SE that will be taken. The Dr/nurses/med team is to caution or let the pt know about the SE but because of info overload or whatever it is hard to take it all in let alone remember everything:o Often the med team will send home info on meds but it doesn't hurt to gather info.



    AND we are all made up so differently. If something works for you, like your friend purple, thats great. Why fix it if it 'ain't broke:) glad she has something that helps her. Now we can find something for this dang cancer:o



    Happy Saturday to all. Hope you're able to enjoy it:)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2012

    My DH says I don't need Effexor. It's all in my head. Duh! He says what I need to do is just go hiking and camping with him and three other guys next week. I started to lose it until I thought, Hmmm don't they dump bodies in woods? Maybe I should go!Yell

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited October 2012

    Ro------hey swinging to the Blues and some ordinary voldlka-----effexor sucks ----way big time,  but it's the docs, little mama camma downer of this last decade.  Previous drugs --- to many too list.

    I personally believe in Savella/ milnapricin. I take it at a <recommended daily dose. 25 mg BID versus 50 mg Bid-twice. It was used in Europe for ten years before our FDA approved it here---so it has a track record. If it was here for that long it may be close to moving to generic---forget what proprietary time is. What pisses me off--is the drug intoduced to the USA market in 2009, after ten years use in Europe was given Proprietary rights to Forrest pharm until 2021. Duh, not a new drug, Forest just bought the rights to it. FDA approves as a new drug. FDA---sucks-------The future will show The Fda as a tool to Pharms.

    Comment s about Effexor are sooooooooo true.....But the ones prescribing it are not taking it. PLus are they getting kick backs of some nature for prescribing it or are they just on the train-----everyone else is prescribing it---can't be held accountable if it's the drug of choice of X number of prescribers.

    SSRI and SSNRI's are great, but each has it's quirks. Just like the Benzo's Xanax is aprazolam----can be highly addictive--glad to hear above friends has kept it at one a day.---cool---remember the Blues are on. Next benzo valium--best skeletal muscle relatant ever that was invented, but then found out that it was an anti-anxiety agent---so soon forgotten about skeletal muscle relaxation--only a short few years after introduction early 60's. Has in the last decade been refound for what it was invented for--could make more of the story, but want to check Insomnia thread

  • Rockym
    Rockym Member Posts: 1,261
    edited October 2012

    Rohanna, our husbands are so clueless.  When I was way down a few years ago, my husband told me I should just masturbate in the evenings because that is what helps him!  They just don't get it :-).

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2012

    Rocky, all I can say is AAAAARRRGGHHHH! My theory is that testosterone kills brain cells. At least he's gone camping and is out of my hair for 10 days. Ah, sweet peace! And I ain't washing his nasty, stanky clothes when he gets back!!!

  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    the ones prescribing it are not (the ones)  taking it


    OMG ....this should be a  quote  that is etched into all of our brains before we pop the first pill if ---anything. I hate being pressured to take  a bunch of crap with potentially deadly or life changing SEs and told :" You'll be sorry if ....."
    Yeah, and I'll be sorry if I take the pill, get osteoporosis and break a hip- but you wont dr!

  • Rockym
    Rockym Member Posts: 1,261
    edited October 2012

    Here's what cheezed me off this week... not knowing what symptoms are from chemopause, menopause or simply normal!!  I want to know if the aches and pains are typical of a soon to be 48 year old.  What about the eyesight, etc.  I don't feel old, but my body feels way older this year than last year.

  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    Rocky

    I went thru meno at age 41.  My best guess is ' not just normal meno'.... and as for eyesight, its very gradual.


    I think its the ' something else ' going on .

  • Rockym
    Rockym Member Posts: 1,261
    edited October 2012

    purple, was your meno at 41 from something other then typical meno.  41 sounds very young.  I think I read 52 is average, so I felt okay that I'm there.  I'd be way bummed if I was a 30 something with chemo and had a permanent meno.

    Anyway, my eyesight is okay except one day a couple of months back I found I couldn't read small print on bottles anymore.  Bought those 1.00 glasses at CVS.  I've always had great eyesight and could thread a needle in literally "a blink of an eye."  Not so much now.

  • chatter99
    chatter99 Member Posts: 49
    edited October 2012

    Rockym,



    Spellcheck thinks 'Rockym' should be rockumentary!



    I had perfect eyesight until mid 40's, except i just remembered, doctor prescribed glasses in late 20's but I did eye exercises and didn't need reading glasses for another 20 years. Eye exercises work for those whose lazy eye muscles are to blame.

  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    Oh yeah, your eyes are fine, Rocky.

    No...it's odd. My mom was 41 and my sister was 41  too!  When I started with hot flashes etc ...my gyn said I was way too young. I explained the family hx and he said thee is no such thing.  I finally convinced him to test my hormones, and lo and behold!

    I was out of whack for app 1 yr with symptoms and then it was like it never happened.

    Early meno is supposed to be very protective against BC.  ( HA!)
    I just found out my ER PR status is ER 100% and PR close to it .

    Go figure.

  • Reality
    Reality Member Posts: 782
    edited October 2012

    Here's what got me this week - I was in my MO's office, receiving med education for new chemo from PNP. She actually told me that I should do well as BC responds well to chemo. I did not say a word and she turned red and looked down at my chart - hopefully she realized that her canned, routine statement did not fit the situation  as I was sitting there with mets in my lungs after having "incomplete response to chemo" - grrrrrrr I know she was trying to "reassure" me. Let's face it - I need honestly now - not reassurance - Stage IV with lung mets a year after BC surgery - Give me the whole story and keep the rehearsed assurances for someone else. Sorry - just having a tough time accepting new dx. Thanks for listening. 

  • TallM
    TallM Member Posts: 1,596
    edited October 2012

    Reality-Sorry you had that experience & that you are going though this recent dx. It isn't fun. I wish I could say it gets easier but it just becomes more manageable or that we accept it? Not sure how to describe this life changing event. It's just plain bad luck. 68-70% of people who get bc have no family history. RRR. Whatever is my new word for cancer events, changes etc. It's out of my control. I wish you luck.

    What cheezed me off-trying to put pictures on BCO! OMG! Has anyone found a secret? 


  • Rockym
    Rockym Member Posts: 1,261
    edited October 2012

    TallM, you have to post your pics (upload) them to a Facebook or Photobucket type website first.  After that, you can write a post and click on the tree icon (next to the smiley) where you would paste the location (image URL) into the box.  I believe when you are on Facebook, you right click first on the photo and left click the "copy image location" and then that is what gets pasted into the tree icon spot.

    Hope this helps.

  • TallM
    TallM Member Posts: 1,596
    edited October 2012

    Thanks Rockym! I'm going to try that again now:) I'll let you know how it goes:) I think I missed a step, or two:0

  • Reality
    Reality Member Posts: 782
    edited October 2012

    Thanks TallM - I appreciate your honesty and for sharing your feelings.

  • TallM
    TallM Member Posts: 1,596
    edited October 2012

    Testing...

    Rockym you're a genius! I tried before & couldn't get it to work. Even following the "help" info. Thank you SOOOO much:)

  • chatter99
    chatter99 Member Posts: 49
    edited October 2012

    Rockym, it concerns me you have to upload pics through Facebook as any pics you load to FB pretty much become their property. Just a little paranoid aside...

  • Rockym
    Rockym Member Posts: 1,261
    edited October 2012

    TallM, your welcome and beautiful picture!

    chatter99, I can be paranoid with the best of them... that is why my Facebook account is under an alias name and I have no friends, boo hoo :-).  I only use it to upload pics to BCO and to see what some Facebook people are up to from time to time.

    P.S.  I never post a pic of myself, although I did post a picture of my hair that was cut off and lying on a table in 14 braids.

  • TallM
    TallM Member Posts: 1,596
    edited October 2012

    Thanks:) I posted some more to "any LDS women with BC" if you want to take a peak. I'm so excited it worked:)



    Good idea about the alias.

  • purple32
    purple32 Member Posts: 3,188
    edited October 2012

    what about snapfish ?

    Maybe it would post the same way thru them ??

  • TallM
    TallM Member Posts: 1,596
    edited October 2012

    Mmm don't know about them. Rockym might. She seems to be techno savy:)



    Maybe I should be more concerned about Facebook & putting info online but I just try to be careful.

  • Rockym
    Rockym Member Posts: 1,261
    edited October 2012

    I feel that I can be very outspoken sometimes and just like to keep my anonymity.  Also, with what I have been though (and all of us for that matter) and what I have shared, I like to keep that kinda hush hush too.  I could only imagine if people I know in my day to day life knew some of what I share :-).

  • TallM
    TallM Member Posts: 1,596
    edited October 2012

    haha rockym:) Hidding under a rock I see:) Couldn't resist. Understandable. I just put it all out there & thought what the heck...esp when people asked isn't what you have a death sentence. I let them know how I felt & that I didn't even want to know what the life expectancy was because no one knows except the man upstairs.

  • Reality
    Reality Member Posts: 782
    edited October 2012

    Hello to all - Had to share this one with you - One busy-body, who is not even a friend of mine, told another busy-body, also not a friend - in fact, someone who "stabbed" me in the back several times when we were teaching together, decided that I was "terminal" and decided to spread their diagnosis for me around our small town and adjoining small town. A good friend told me what was happening and advised me that I do not even have to deal with it as she took care of it. She emailed the offenders and advised them that at this point, even though I'm stage IV, I am not labeled as "terminal". My diagnosis is currently, "chronic disease in treatment" - my God, give me some hope - idiots! So glad I have a protective friend, who is very active in the community.

    Off to care for grandchildren - Have a good one.   

    Sher

  • Reality
    Reality Member Posts: 782
    edited October 2012

    I have to share this with you guys as I love my adult daughter, who lives with me, and do not want to hurt her feelings. It is one of those mornings where the tub is clogged, the fridge light is out, the internet is slow, and the kitchen sink is broken. (She also hates her new job). Believe me, I understand when things are not going well! Here I am, just dx Stage IV = very aggressive triple neg.-informed I will most likely be bald forever, etc....So a friggin faucet is no big deal to me - When I made light of the whole situation and joked about it this a.m., she set me straight about how none of it is funny. I did not say anything the first time - but the second time, I went off - I told her that not much is a big deal when you are on chemo, have no hair and live in constant fear and pain! I know she is hurting too, but I do not need petty crap right now. Thanks for listening so I don't argue with her. It's early in the a.m. so I'm pretty much stuck in the house for awhile. You can bet I will be out and gone asap today! 

  • Reality
    Reality Member Posts: 782
    edited October 2012

    Just had a nap and thought about my previous post when I woke up. I really am not a bi**h. I rarely even mention my dx or complain to anyone but those on these threads. Was just having a tough a.m. My daughter apologized and all is well. Best wishes to all for a good day- that's my plan!

    Sherry

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