Scared to death. Diagnosed in July. On Gleevec. Been watching this site from the sidelines. My first 3month test failed miserably. More tests tomorrow. 3rd day in a row for tests.
Posted 18 January 2012 - 12:17 AM
Welcome to the board - it is scary stuff particularly in the beginning. Have you got any test results that you could put the info on here for the brain's trust to review? Don't forget there are a couple of other drugs available if Gleevec isn't the drug for you.
Posted 18 January 2012 - 12:28 AM
Hang in there. It is horribly scary. But there are so many here who will try and help. And so many new drugs to try. I hope you have someone with you to help you through this.
Posted 18 January 2012 - 04:26 AM
Welcome here, hold on things will get better, it actually is very scary.
Could you share with us the results you got? (both at diagnosis and now?)
You must know that if gleevec doesn't work well enough sprycel and tasigna are two options that do very well also.
Posted 18 January 2012 - 10:33 AM
I don't know where to start. I am obviuosly going to have to learn what all these tests mean. All I concentrated on was my wbc count. I took a bunch of tests Monday. My test on Monday was my first 3 month wait in between blood tests test. I was doing good on Gleevec. At least that was what my onc was telling me. Then Tuesday AM I got a call from my wife telling me that wbc was up and they wanted to take more tests. I did that. Tuesday night I got another call from my wife. She seemed vey concerned and that I had some sort mutation thing going on with a blast. I have no idea what that meant but I have to go back for more tests today. Someone on this site asked me to post my test results. So I had them print out everything. What should I be posting so I can get some info from this site. I am meeting with my onc tomorrow afternoon where I am sure I will get some bad news. With the way my wife is acting and constantly having to go back and get more blood tests to say I am little worried is a understatement.
Posted 18 January 2012 - 06:24 PM
Hi, Jimit, and welcome.
I can certainly understand why the last few days has you freaked out a little bit. The CBCs are a good place to start, especially if you can share the overall WBC, then the breakdown, like the %blasts, %baso, etc.
If you have any FISH results, at diagnosis and 3 months or 6 months, that woul be good. Those are usually expressed as a percent, or something like " XXX/200 cells" were examined. But if you haven't had that with this last round of tests ordered, it might not help to know what it was 3 mo ago.
Have you had any follwup BMBs since diagnosis?
HTH, it can be a bewildering alphabet soup of tests!
Posted 18 January 2012 - 07:06 PM
Hey, Jimit.. .hang in there and try not to freak out (easier said than done). CML is typically a slow moving and easily controlled disease, so you have time to get things figured out. Make a list of questions before you see your doc, and write down his answers (or have your wife write down his answers). Sometimes it's easier to get all of the information with another person along to take notes. Be sure that the doc explains the tests to you, and don't be afraid to ask questions. Even if you feel stupid asking the questions. My line to the doc was, "I know this is a stupid questions, but. . . . ." and the doc was always good about answering my stupid questions (well, one doc wasn't, so I fired him). The doctor is working for YOU, and you are paying for his services. Don't leave until you are sure that your questions have been answered. Then when you get home, start a list of questions to bring with you on the next visit.
There is a lot of helpful information on the link that Trey posted. Read it in bits until you've made it through. Try not to be overwhelmed. It will be o.k.
Best of luck,
Posted 18 January 2012 - 07:20 PM
Hi Jimit: First let me welcome you to a group that will help to answer all your questions. Glad you decided to post to us.CML is a complicated disease, but has been found easier to treat now than it was years ago.
It could possibly be that Gleevec is just the wrong drug to get you where you should be. Not everyone can take the same drug. Take one step at a time, and try to post the test results when you can so someone can break it all down for you to explain it. Ask your Oncologist questions, and make sure you get answers that you can understand?
Until you give some more information, its very hard for any comments. Sometimes it takes awhile to get you stabile as you said you started Gleevec in July. As soon as you post all the information you can, you will get some answers to help you deal with everything. Being scared is very normal, but you can live with CML after you get the proper treatment. Hope we hear from you real soon, so we can ease your mind on what is happening.
Posted 20 January 2012 - 01:53 PM
Thanks for your concern everyone. I met my onc yesterday and it looks rather grim going forward. No point in giving out my tests because the doctors have already got me going on a way to fight this. It looks like not only am drug resistant to Gleevec but my bone marrow chromosones have mutated and are in a blast crisis. It's either going to be acute cml or acute cll for me. I am going in for another bone marrow test next week and meeting new docs at the University of Chicago Medical center to map out my treatment for which ever path of treatment is needed based on identifying which type of mutation has taken place. Trying to stay strong but it's been tough lately. I own my own business with several employees and this is really going to put a strain on my business with me gone. I have not been very good at delegating over the years. I am kind of a one man team. I generate all future sales etc.by myself. I never would have thought this would happen to me but here it is. The docs are telling me either bone marrow transplant after 3-4 months on sprycel or tasignia or chemo in about two weeks. Either way I need something to eventually go my way to get better
Posted 20 January 2012 - 02:03 PM
Hi: Easier said than done, but try to take care of one situation at a time. As for your business, maybe you can delegate work that you have been taking care of to one of your good employees. You can always oversee what is going on, well you are taking care of your health. If you do need a BMT, its going to take time before you can do what you do now.
You have time to figure out a plan before the doctors decide what to do. You might do well on another TKI drug, and not need a BMT.
My husband was self-employed for many years, and we had some real rough areas to get through back then, but somehow you survive it and it works out. Let us know how things work out, and what your next plan of treatment will be.
God Bless and Take Care. Prayer always does wonders too.
Posted 27 January 2012 - 09:01 PM
Bumping this post up to go with your "Scared Two" post.
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