3 replies to this topic

[luvmybees24]

I am doing well on Tasigna (dx 11/2011) but am worried that I am somehow not going to live past ten years. Are there any people out there who have had CML for a long time and are doing well? My Dr. said I am doing great and will do well but I have anxiety a lot. When I was dx my WBC was 31 and now it's 4. So it wasn't too bad to begin with. Sometimes I forget I have cancer but lately it has really been getting to me.

Laura.

[jrsboo]

Dear Laura,

I am sure that Susan61 will chime in here.  She is going on 13 years or maybe it is 14 by now.  And there are a few other regular contributors who are doing just as well.  Remember, the drugs are only about 10 years old, so the most info we have is going to be 10 years............but they are predicting that we are going to die WITH leukemia, not from it. 

It is a very scary disease.  Not going to lie.  I am on month 14 now.  And there are flashes when things seem completely fine, then there are days that breathing is hard.  I wouldn't say I forget I have it, but it no longer the first and last thoughts of the day.  Dealing with the emotional side of this is just as important as the physical side.  I found that some friends were great.  Some were not.  And others simply disappeared.  So I talk to the great ones.  The not so great are still invited to parties, but they aren't there on a daily basis.  And the ones who disappeared have lost out on a wonderful opportunity to learn and grow.  

Keep in touch here.  This board has been an absolute life saver for me.  And if you can, reach out to others in your neck of the woods to meet in person.  I meet with someone here in Tacoma about once every other week, he has had it since 2005, and it is so enriching and helpful to be able to TALK to someone who knows EXACTLY what you are going through. 

Hugs,

Caroline

[Jamar]

here's a couple links you'll find interesting

http://community.lls.org/thread/5362

http://www.oregonliv...universi_1.html

[CallMeLucky]

As was mentioned, the majority of people in the TKI generation are going to be those around 10 - 14 years.  I've heard from some people who are upwards of 20+ years.  It is highly conceivable that you will live your normal life span and die with CML, but not because of it.