Tomorrow first day on gleevec. I was diagnosed with cml about a week ago. Supposed to see some music in a club this friday. Worried about side effects ruining my night. Bought tickets month ago. Any advice? I know I should blow it off but want to try any way
Posted 05 July 2011 - 10:12 PM
My side effects for the first couple of days were very mild, almost not noticeable so hopefully they will be for you too
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Posted 05 July 2011 - 11:10 PM
Wait and see - you might not get any side effects.
Posted 05 July 2011 - 11:46 PM
Thanks. I am just nervous about all of this. My life has just turned on its head and it is hard getting used to it.
Posted 06 July 2011 - 12:45 AM
Jim, it is really life turned upside down. After awhile, though, you will get adjusted to Gleevec and learn to live with leukemia. I'm about a year and three months into this; today, my manager remarked that he was amazed that I seemed to have no effects at all from CML. (If only he knew!)
Posted 06 July 2011 - 01:33 AM
It took about six months for my world to stop spinning. Just jump in here when you have a question and we will see if we can help.
As for your night out - the only thing that might inconvenience you first up might be nausea and diarrhea. Imodium will help first up if this is an issue, also start taking probiotics if this happens it will help settle things down and for the nausea make sure you eat a reasonable meal when you take your tablet. But as I said earlier, some people don't get any side effects.
Posted 06 July 2011 - 06:51 AM
One thing you may want to think about is the timing of your Gleevec on Friday. If you normally take it with your evening meal you may do better to wait and have it with a snack after you get back. Other than that all you need is a couple of immodium for the sharts and a friend to wake you up at the end of the evening if the fatigue gets you - most of us really don't do late nights any more!
Posted 06 July 2011 - 08:08 AM
Why blow it off? Life is for the living.... You may have no side effects, especially early on. When I took my first pill I was waiting for my head to explode (or the other end). It was quite uneventful. It took a few months for the fatigue to ramp up, but even that ebbs and flows. I say go, it's not like you can't leave if you don't feel well (just like you would have done before CML).
Posted 06 July 2011 - 09:08 AM
I was like Lucky -- I thought that the Earth was going to explode when the first Gleevec pill went down the hatch with breakfast back in April, but I felt nothing. Rumor has it that the power in my home flickered briefly ...... hence the amazing healing power of a TKI .......
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Posted 06 July 2011 - 09:40 AM
Hi Jim, first I have to ask you what music are you going to hear on Friday?
I am like Lucky in that the fatigue did not kick in for a few weeks so I
got alot of things done before that. But going to a club to listen to some
good music will lift your spirits. Good luck on this journey. I like that your
main concern is if you can go to the club on Friday. It was one of my
main concerns (and continues to be) as well.
Take care and enjoy.
Posted 06 July 2011 - 10:06 AM
Thanks for the cheer up. I am going to see Elizabeth Cook. Country music you could say. I am going with my best friend who I have not said one thing to about any of this. I can tell he knows something is going on. I would love to tell him just to get it over with but I hate the thought of starting every conversation talking about cancer. I am already tired of it.
Posted 06 July 2011 - 10:15 AM
Go to the concert and have a good time. Just be sure that you know where the restroom is, so you don't have to hunt for it. It will take awhile to adjust to your new normal, but you will discover that life goes on and things get back to pretty nuch the way they used to be. No reason to miss out on the fun.
Posted 06 July 2011 - 10:25 AM
Jim, sounds like you're going "Honky Tonking", right? (I am French and
this is one of my new words). I live in the South and have learned so much
about music here. Miss Cook plays "old" country and that can't be bad.
Message was edited by: simone4
Posted 06 July 2011 - 10:31 AM
With regard to the friend I have found that we (the patients) set the tone when telling someone about our situation. If you lead in with "I HAVE CANCER" or "I HAVE LEUKEMIA" people are going to be understandably shocked and have various emotions. Most people do not know what CML is and when they hear you have leukemia they are going to assume you are dying and need chemo and will be sick in the hospital for a long time, etc. You may want to soften the blow by using more general terms that don't evoke such strong emotions initially.
Instead of "I have leukemia" you can say "It turns out I have a blood disorder. The doctor says it is serious but they have medication for me to take that will keep it under control. Most people do well on the medication so I am expecting things to be pretty normal going forward although there may be some side effects, but shouldn't be anything too bad." At this point you have given them the bad news without knocking them over the head, they will be concerned but not necessarily scared. From that point as the conversation progresses you can get a little more specific "I have something called CML, it is actually a type of leukemia, but apparently it is a bit different from the typical leukemia where you get very sick very fast. This disease moves very slow and the underlying problem that causes it to progress is very well understood, that is why they have such good treatment options. They are telling me I should live a normal life span. Only thing that kind of sucks is that for now I have to stay on the drug for the rest of my life".
People react differently. You can read other threads where this has been discussed. Some people will shy away from you, but I would not expect that from a good friend. Some will choose to ignore it and others will be valued confidants. Overall you can't control how someone feels, but there are ways to soften the blow. Looking back, I wish I had thought about it like this. At the time I was scared and I hit some people over the head with it. I feel bad about that, but like they say, cancer is a disease that affects the whole family.....
Posted 06 July 2011 - 01:42 PM
Hi...good advice! Don't knock 'em over the head!!!!! I often used the blood disorder/blood disease intro. Leukemia is a scary word, for sure. We are lucky to have wonderful medicine.....twenty years ago, my next door neighbor wasn't so lucky. He was a great guy in his early 50's so I do know how lucky we are! . Lala
Posted 08 July 2011 - 09:22 PM
Hi Jim: Just saw your message, and its Friday Night, and your probably enjoying your night out with no problems. Glad you got all the other advice just in case. I have been on Gleevec for 11 years, and I still get some side effects. Try not to think about what could happen, that will probably never happen.
We are all different with how our bodies react.
We are always here to answer any of your questions. Its all new to you, but you will be just fine. Let us know if you enjoyed your night out.
Posted 09 July 2011 - 06:57 AM
You guys were spot on. Little tired that's all. I had a great time it was as if the prior three weeks never happened. I am a pretty cynical guy but I am learning that there are some very thoughtful people out there. Thanks for the encouragement
Posted 09 July 2011 - 09:19 PM
See I told you that you would have a good time with no incidents. You might have some side effects as you go along, but I think you will look at it all differently now just knowing the Gleevec is doing its job. Keep us posted on your progess.
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