7 replies to this topic

[dee145]

Ok I went yesterday and saw a Certified Registered Nurse Practitioner about the shaking.  I called all the psychriatrists on my husbands insurance and when i called this place I told them what I had and my issues and they said yes she could treat me.  She knew nothing about CML or Gleevec.  Is that normal?  She put me on Klonopin, a half of a .5mg every 4 hrs for the shakes.  Said my crying for no reason here lately is depression, said people can be depressed with out the obvious signs.  I still go and do things but I am also depressed and she said it could be that realaity has set in.  Maybe the shock of being diagnosed has wore off and now I am dealing with the diagnosis.  Since the 1st onc. was so bad that now I have all these issues to deal with and fix.  She did say he should have his license taken for stopping me on a dose of 150mg of Elavil at bedtime, I could of had seizures.

She would like to get me higher on the dose of Elavil, but i am stuck at 60mgs.  My new onc. has been trying but if I go to 75mgs I get sick to my stomach.  I was on 150mgs before and now can't get past 60mgs, I don't understand it.   I am not sure about the Klonopin, I woke up with nausea this morning and I don't have a appetite.  I forced a bagel down this morning and I have to eat or I will throw my Gleevec up.   Has any one been on Klonopin and if so is this just a temporary thing till my body adjust to it? 

Like I said I called all the psychriatrists in our county but should I call some one else that deals with cancer patients?  I am on the county line so I can go into the next county and there were some on his insurance in that county.  i was bothered that she didn't know anything about my CML.  She did look it up and also Gleevec while I was there so she could see side effects and drug interactions.  My appt. yesterday was very long but she said from now on they will only be like 20mins. long.  That is all their allowed to spend with a patient, she is in a Community Service Group.  She wants me back in 2 weeks.  Any suggestions on what to do?

                           Dee

I have typed this 3 times and when I am finished it says error occured and won't post.

[HeatherZ]

I took Klonipin when I had severe post partum depression and never had any side effects.  Although at the time I was inpatient at Philhaven (mental hosp) because of a manic/psychotic episode.  I wouldn't be worried that she didn't know anything about CML or Gleevec; as long as you feel comfortable with her that is what matters.  I have always had a good experience with the doctors and therapists at Philhaven and they have offices on Rhorestown Road and in Etown so it isn't that far from us.  The thing to remember is that the Psychiatrist is only there for your meds - there isn't much talking at the appointments.  You may want to see about talking to a therapist on a regular basis.  Meds are great but I have always found that talking it out really helps.  The meds can only do so much.

Heather

[cpsn0000]

If you think it's possible that you're dealing with depression, you may also want to consider making an appointment with a qualified psychologist. While they may recommend drugs, they're more likely to approach depression from a counseling perspective and may be able to provide you with some very effective strategies for dealing with the stress that comes with CML.

From what I've seen, it's pretty common for people with CML or other chronic diseases to deal with phases of depression and/or anxiety during this process. After all, this is a HUGE thing to have as part of your life. In one of the Leukemia Society videos, they interviewed two patients who dealt with some level of depression -- both months or years after the original diagnosis. The first few months/years are dealt with just trying to get through it all -- learning the disease and what it means for you, dealing with different meds, trying to understand all the tests, adjusting to side effects, etc. It's often when you get through the shock and some of the disease management that all the emotions start to overwhelm you.

Like oncologists, there are both good and bad psychologists or counselors -- if you can get someone good, it could make a huge difference. Often insurance will cover the cost. Also, many cancer centers and hospitals have social workers on their staff that can also help -- dealing with this disease is a unique kind of emotional adjustment, and those connected with the hospitals (social workers, chaplains, counselors, etc.) deal with cancer patients and their families every day.

I wish you the best.

[VickiW]

morning Dee!

sorry I didn't catch your previous posting about the shakes, but I developed the shakes too, early last summer?  But, unlike you, I know the cause.  If you haven't caught any of my other threads, I was dxd last year with sensory/motor neuropathy.  The motor part is probably where my shakes are coming from.  I actually had sensory neuropathy prior to initial dxd for CML (tingling, pins&needles, and pain in my feet) which was a side effect of the CML, but didn't know what it was til later.  Anyway, after 2 years on Gleevec I switched to Sprycel.  One year in on the Sprycel my peripheral neuropathy (PN) suddenly got ALOT worse and I was dxd with motor neuropathy as well.  During that time is when I developed the whole shaking thing as well as losing  muscle strength and some  control of my right arm.  (I have been on Neurontin since last June and it has helped a great deal with the pain).  Anyway, sorry if I am rambling.  I  hit a sort of remission in January (which can happen with PN) and doing much better (as long as I stay on the neurontin!), even regaining some feeling in my toes and a little strength in my arm, but I still get the shakes.  However, if I pay attention, I am  able to control them.  Has anyone talked with you about PN?  It is a potential side effect of CML as well as the drugs we take to control it so it can be a real "double whammy". Fortunately I have an Onc that's always willing to look past the depression to the cause.  In my case, I thought I was dealing with depression when it was just being sick and tired of the pain I thought was just the CML and nothing could be done. Just a thought.

Prayers and hugs

Vicki

[dee145]

I tried the klonopin all day Friday and was sick to my stomach all day so i called the CRNP and she said I shouldn't be sick, in a tone like she didn't believe me.  Said thats not a side effect, well excuse me but it's making me sick, I can't help it.  She prescribed half of a .5mg every 4 hrs and said to take the whole .5 at bedtime Friday night.  Well, i did and didn't get a wink of sleep, was up all night long!!!  So my onc. was on call over the weekend so I called him and he said the dose she gave me is much lower than my xanax and if I couldn't sleep then go back to the xanax.  I lost my appetite also on klonopin, maybe cause i was so sick to my stomach, i am not sure.  But my onc. said I have to eat so go back to the xanax and try to find a psychriatrist that deals with anxiety and meds for it.  I called all day yesterday and no one, either not accepting new patients or only practicing in the hospital with patients or a 4-5 month waiting list. I even tried the next county.   I guess i am stuck with the shakes and will be on xanax the rest of my life.  This process of trying to get help is causing depression.  I will be a basket case just trying to do this.

I just got a call from the CRNP that gave me the Klonopin and she said I could take a .5mg in the morning and a .5mg in the afternoon and the 1mg at bedtime but I said that doesn't help with the nausea.  I said my onc. told me to go back to xanax for now and she said she would not give me xanax and if my onc. isn't going to work with her then there's no reason for her to treat me.  He's working against her she said.  My onc. says he's in charge of my helath and doesnt want me to suffer with the shakes but also doesn't want me to be sick to my stomach and not be able to eat either.  I have a little orange Gleevec pill that i have to eat to be able to take.  if klonopin was taking my appetite away then it isnt for me.

I may be PCRU but I am going crazy trying to get rid of the shakes.  I had a friend ( I thought) over the weekend tell me she was tired of hearing me and my issues, just stop the crying and get over it.  Don't you think if i could I would?  And i have to talk about my feelings or i keep them bottled up and then explode.  I am sure people on here are tired of me too!!!!

I will go for now but thanks for letting me vent!!!!

                                                                       Dee

[grannyd]

Hi  Dee, I haven't posted too much, mainly because all I talk about is my depression & anixety, PLEASE don't quit posting, this is what this board is all about!! Each time I have posted the most wonderful listeners reply back-----they all are so kind with their words!!! NOW--for your so called friend? Ask her if she were in your shoes woiud she come to you? Of course she would, and you would be there for her--some people are soooo stupid. I read this board every day, don't like having CML but don't know what I would do without it!!!!!! I take lexapro & ativan, seems to help but everyone is different. I still am dealing with depression & anxiety. I just stared my 10th week on tasigna, the fatigue is my major complaint, can't seem to go past the couch or bed without both calling for me to LAY DOWN!!!!!! Hope things work out for you soon, you have so many friends here, post a s often as you want, always here for you!!

prayers to all, grannyd

[MJL]

Dee,

We are not tired of hearing about your issues. We all have them in one form or another. You are not alone with your depression and anxiety. I am dealing with terrible anxiety and it is ruling my life. I know I need to get help and if I have to pay for it "out of pocket" then I guess I will have to. My insurance pays for my Gleevec thank goodness but does not have good coverage for mental health issues. About looking outside of your county for a mental health professional, try going farther afield in your search. I know it will be a longer drive for you but it will be worth it. I too live in a small town and sometimes we need to travel to get what we want.I think about all the people who travel over an hour to see a specialist for one thing or another.

Hang in there, and take care.

MJL.