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need help on meds?

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#1 dee145


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Posted 28 February 2011 - 12:50 PM

I don't know who can help, maybe my dear friend Trey?  He doesn't always say what I want to hear but I know he has alot of years invested in this damn CML.  I know about the drugs.com site, I use it but this I need some one that can dig deeper for me.  I am still dealing with the shakes, tremors, what ever you want to call them.  There not as bad as they were since I got the new onc. this past April but why won't they stop?  I thought maybe something isn't mixing with the meds I am on.  Both of my drs. say I am ok.   My meds are Gleevec 400mgs, Zofran 8mgs (nausea pill), Elavil 60mgs (bedtime for control of migraines), xanax 1mg taken every morning and try not to take one in the afternoon but sometimes I have to and then 1 around 8-9 pm to help with the elavil to relax me to sleep.  I don't know how to really dig deep to see if any of these are causing my problem, if they are not mixing together.  Some days are better than others, yesterday was awful but today I am a little better but can feel them inside.  There not always where you can see me shake, I feel them inside of me and it's a awful feeling.  I have dealt with having CML and tomorrow I go for my PCR test to see if I am still PCRU so I should be jumping for joy but I still cry alot too.   Between the Elavil (anti-depressant) and the xanax why do I still cry at the drop of a hat?  I don't want to switch my Gleevec to something else.  I finally have it down to a routine, I take my nausea pill and wait about 30 mins. then eat and then take pill and then I eat a yogurt every time.  I was told about the yogurt and maybe it's in my head but it seems to work for me.  I have tried to take pill without the nausea pill and get sick every time so my onc. said to just take the pill and not take any chances.  He said "God made everyone different so we all handle things in different ways".  If I lay down to take a nap I don't feel the shaking, it's only when I am up and moving around.  I am under a little more stress right now, my 15 yr old is having health issues with his stomach but as you all know I was this way before he got sick.  I think I am going to go talk to a professional but what kind, therapist, psycologist, I don't know which one does what?  Never had to go to one before in my life.

I really do blame my old onc. for this mess with my body cause I didn't have them till he started messing around with my meds, putting me on something for a month then stop that and put me on something else.  He would stop my Gleevec and then he had me on half doses for a little.  I was diagnosed March of 2009 and had the normal side effects, fatigue, aches and pains till around Nov. or Dec. he stopped me "cold turkey" from the Elavil and then started with all the different meds.  That's when I started going down hill and the shakes, anxiety whatever it is started and hasn't stopped since.  Gotten better but still there.  New onc. tells me to take the xanax but i think my body is getting used to the dosage and their not helping much anymore.  I will be PCRU but addicted to xanax is what I am afraid of if my body isn't already.   Does ayone else take xanax or something in the same category every day?  If so are you afraid of becoming addicted to?  So if any one knows how to tell me how to dig deep to see if my meds aren't mixing or they can do it I would so appreciate it!!!   I know I have been a complainer since I joined this group and a pain in the butt but you guys help me alot.  Like I said not always what I want to hear but some good info so I want to thank every one that has dealt with me along my way!!!!!!


#2 Trey


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Posted 28 February 2011 - 09:01 PM

Gleevec can rarely cause tremors.  Also, Gleevec can interfere with sugar metobolism, which can also cause tremors.  Thyroid issues can cause tremors.  So I would suggest you ask your PCP doc about a glucose tolerance test and thyroid testing.


#3 dee145


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Posted 10 March 2011 - 12:28 PM

Trey, my thyroid and glucose have been checked and all are fine.  It's just me I guess going crazy!!!!  I talked to a nurse in the psychiatric field for 30 yrs and she talked to her boss and he said it's all from the old onc. stopping me cold turkey on that Elavil.  That can screw me up for years cause of the way he did it.  I was on a 150mgs, started on 25mgs like 10 yrs ago and was raised over time cause of the severe migraines.  She said that was so dangerous I could of had a heart attack which was worse than the QT interval they found especially since I have my records showing I had the QT at least in June of 2008 when I had a outpatient procedure done.  He could of easily weaned me down to a dose where the QT corrected itself.  She said I need to get back to the original dose of Elavil to help with the shakes but I can't get past the 60mgs without getting sick to my stomach.  Plus my onc. thinks anything past 100mgs might cause the QT again.  My heart is fine now, no signs of the QT interval at all.   My xanax is prescribed 1 pill every 6hrs which I was doing when I first started seeing new onc. cause I was so bad but I have cut myself back and she said that is a mistake.  I need to take it as prescribed and when you want to cut back you have to do it 1/4 mg daily not miss whole pills which i do cause I am afraid of addiction.  The last 3 days I feel like I could pull my hair out, the shakes have been so bad and I cry all the time.  She said her dr. feels I am not ready to cut back but they don't seem to work any more any way.  I think my body has gotten use to the dose of 1mg.  She said if I take it every 6 hrs it will be in my system all the time cause it is a short one for staying in your system.  Does this make sense to you?  I don't want to be a addicted to them if my body isn't already.  Her dr. said I should of filed a malpractice suit against the old onc. I had but I am not that kind of person plus where would it get me?

I go tomorrow to see if I am still PCRU so cross your fingers and toes for me!!!!  If I could just stop the shaking I think I can handle the rest.  I have come to terms that I have CML but my life has to move forward and I am trying but when the shakes start then I get all upset and start the crying.  I think coming to terms with having CML is progress for me considering what I have been thru.  You probaly know more about me than my own family does. LOL

It's been a rough road since the day of diagnosis on March 6, 2009!!!!  I will be PCRU but a drug addict on xanax, that's what I am afraid of.

I use to take Vicodin before diagnosis for break thru migraines and lower back pain but when i started Gleevec i was switched to Oxycodone, they don't work as well as the Vicodin.  What is wrong with taking Vicodin, i see where other people have or are taking it?  My liver counts are great!!!!   Cause I am getting some bad headaches and my back hurts all the time.  I tried therapy for my back but no help, they say its all in the muscles and just have to live with it.  Sometime in my life i must of pulled something and now i have to live with it cause i don't remember ever doing anything to it.  Could be age too I guess.



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