9 replies to this topic

[dee145]

I am having a rough day and need to just vent.  Have had a stomach virus for like 3 days and I tried to take my Gleevec but it comes back up cause nothing is staying down.  Family dr says it just has to run it's course.  i hope this doesn't affect my PCRU.

Today is a feel sorry for myself and "why me" day and can't get past the crying.  This f**king anxiety won't go away even with taking xanax.  My new insurance has a team of nurses and pharmacists trained about Gleevec and I was told it could be the Elavil I take at night causing the anxiety, when your stopped cold turkey and then later try to go back on same med it doesn't always work the same way.  That's why I can't go any higher on dose or I get sick.  Maybe Trey can help me on that one.  But i need one that is going to increase my appetite and no weight loss and help me sleep at night.  If I don't take the Elavil and a 1 mg xanax I am up ALL night.  I just told my husband at lunch I am about ready to stop the Gleevec and just have a few good years.  Of course he said he won't let me but I get tired of hurting, fatigue and the emotional part and menopause doesn't help I guess.

I go see my psychriatrist next week so I will see what happens.

I am beginning to hate Christmas cause I can't do as much as before, just to damn stressful.  I did go out Black friday and had a anxiety attack in Walmart and had to take a xanax, couldn't stand all the damn people and that never bothered me before.  I told some lady to shut her mouth cause she was bitching about something, I was just tired of hearing her mouth.  About to start drinking here!!!!   But thats your department Phil...LOL  

I have to go to grocery store and I hate that too.  Can't stand people especially if it's someone I know and they say "Well, you look good".  I hate that totally!!!!  What am I suppose to look like?

Enough of my venting but welcome to any help I can get.  I really do need a depression pill I know that much but which one?    I feel like I am losing it!!!

                                                             Dee

[CMLSurvivor]

You may want to ask your doctor about not taking your Gleevec for a week until the stomach virus goes away. Gleevec stays in your system for about that long. My doctor told me when I had surgery that I could take up to a week break from the medication. (They were worried it would make me sick and I would rip out some stitches from being sick.) As far as your other meds. I really have no answer except to say I know some people at work who suffer from depression who don't have CML and they struggled to find the right anti-depressent medication to fit them.  I think alot of it is trail and error with doctors and prescribing meds.  Keep the faith! It does get better!

[Judy2]

Hi Dee. I can't give you much help with the technical stuff but I can offer my support. I know what it is like to feel anxious, it is an absolutely horrible feeling. I know it helps me to vent, however, only temporarily, I hope it helps you.I think it is so hard to deal with a major chronic illness. I know people say be thankful that we have meds that work for us, there are people who are in worse situations but dealing with cml is no piece of cake, we have our challenges with this illness. Dealing with this is a forever thing. I like how you told the lady in Walmart to shut her mouth, I know how you feel. When I was on a high dose of Prednisone, for another illness, I almost burst into tears when I was standing behind a woman who had more than 12 items in the 12 items or less line in the supermarket. Anyway, I'm glad you vented, hope it helped and know everyone is here for you.

Virtual Hugs,

Judy

[LivingWellWithCML]

Hey dee,

I'm with you right now.  I'm on the road with work this week doing training for a large number of people, and I ended up catching a stomach bug that's been going around our house, so here I am in a hotel room last night and without warning I started vomiting until 3am, then I had to turn around and report to a client site early AM ... and I'm standing and talking most of the day.  I am absolutely exhausted and feel miserable.  Ugh.

I was scared beyond belief this morning when I needed to take Gleevec -- I was so worried that I was going to throw it back up.  Somehow it played well with a banana, but my stomach is still killing me.  I'm only 9 months into treatment, so I am petrified about missing a dose this early in my journey.

Now today during the training, I feel like I have the flu - spoke to my wife over lunch (who had the bug a few days ago) and she said that I'm one tough SOB if I'm able to stand up in front of a room of people and do this with the flu-like symptoms.  Oh, and my lower back aches from the symptoms ... but is that ache from CML, or from the stomach bug?  Anxiety reigns.

Anyway, I'm going to grind it out and just deal with it, because it's one more day of life.  Fortunately, I'm working with a wonderful group of folks today and I let them know that I am "under the weather".  Venting with you dee -- we'll get through this!

[lala]

Hi, Dee.  We are lucky to have meds but they do come with big side effects.  Then, add a virus on top of that and you have a really bad day/week!  I relate to a lot of what you're saying...we look good so we must feel good....Christmas.......grocery store!  After having the extended family here last year while being the only one without perfect health, I realized a few things.  No more big parties here...not even for Christmas.  I can manage my family of 7 but not 20 more!  I have learned to keep things simple......very simple!  I no longer go to the grocery store!  My husband or daughter does.......I have had to really change my ways!  Dinner?????  Rarely do I cook.....I work 5 mornings a week, and that is all I can do.  I highly recommend 4 smaller Gleevec pills per day instead of that giant one that caused so much trouble!!!!  I save all my energy for my adorable 14 month grandson!  (I am 55.). Best of luck and keep doing what you have to do to handle this disease!  ~Lala

[PhilB]

Hi Dee,

If I wanted to take something to calm anxiety, relieve nausea and stimulate the appetite it wouldn't be alcohol   My problem is that now I'm in my mid 40's I wouldn't know where to go and get any nowadays!

[dee145]

Sorry Phil, I thought you were the one that told me to get drunk and run down the street naked when I became PCRU...must of been some one else. Sorry about that!!!!

                                           Dee

[janne]

Dee,

I am sorry you have had such a rough go of it with your stomach virus on top of it all.

I know MORE people who had had anxiety attacks at Wal Mart and it seems like it was always this time of year ! You are not losing it, you are just having an extremely difficult week. It will get better.

And as Judy2 says, dealing with CML is no piece of cake. Glad we can vent here.

[PhilB]

No, that sounds like me alright.  This time around I'm just suggesting a different drug for a different set of symptoms.

Hope you feel better soon

Phil

[GerryL]

Hi Dee,

From what I've read about missing your Gleevec for a few days it should be okay as you're at PCRU. During the trials to try and get people off the TKIs, these people have been off the TKI for a number of months and if/when CML has started to show up in the blood tests. They've gone back on the TKI and achieved PCRU fairly quickly.

I'm not sure what dosage you are on for your Gleevec, but if you're still at 400, would you consider reducing your dosage to 300? I'm hoping that I can maintain PCRU - which I reached at my last blood test. I'm going to reduce it to 300 (after two years of PCRU) my specialist is agreeable to that. Couple of days ago my sciatica started playing up - it is now the worst it has ever been, I'm blaming it on the Gleevec. So at the moment I'm giving my liver a slight workout with pain medication. But I definitely will reduce the dosage of Gleevec if I can.

I'm sorry I can't help with the depression medication - but I'm hoping that you can find something that helps.

Take care.