29 replies to this topic

[Berkalvee]

Hi Marc, great to see that you are doing well with treatment so far!  If you have learned anything about the statistics of CML so far, us 30-something's are more on the rare side.  But if you have any questions about things like having kids while on Gleevec or other things of that nature, feel free to drop a line whenever.  I have seen it all; changing jobs, not having health insurance, getting health insurance, going back to school, keeping life insurance, having a kid, you name it... all while having CML since I was diagnosed in April of 2007.  Well, good luck and keep on kicking CML's ass!

Berkley

[mcfowler33]

Thanks Berkley,

I may definitely have some questions about a few things in the future and look forward to using this forum as a resource.  I have found that most cases of CML are people "middle age" and over.  Lucky us - to get this so early in life.  I just wish they knew more about what causes it.

Ive got a blood test tomorrow and ive been on only Gleevec since Monday, so im hoping the numbers still look good.  Had the WBC down to 18000 on Monday.

Thanks for the replies everyone!

Marc

[Susan61]

Hi Marc:  You should see your numbers coming down gradually.  When I started on Gleevec I had one blood test where my numbers went up, and I heard that happen to many others.  Never did find out why,but then they just continued to get into a normal level after that.  Your body is adjusting to the Gleevec, and sometimes it will take awhile.  My prayers are there for you. Please post as soon as you get your results back.

Susan

[cometbro]

Hey Marc,

To join in on the Gleevec vs. newer TKIs:

31 yrs old, Dx Oct. 2010, 209,000 wbc 2.5% blasts.  Did Hydroxyurea for a few days, then gleevec for like another week and have been on Tasigna ever since.  Hydroxyurea side effects were muscle and bone pain, Gleevec about the same with the side effects.  Tasigna has been pretty much a smooth ride except for minor bumps.  Have been for like 2 months now in the full swing of things, going to the gym and lifting just like before.  I've even started playing full court basketball again within the last 3 weeks and that takes a lot of energy.

The doctor wanted to put me on Tasigna because he believed in the lesser side effects (especially those of muscle and bone pain).  Most patients have less of those side effects.  Just keep your options open, and find some information if your insurance supports it, just in case.  Not everyone has the same experience but its good to have options.

[mcfowler33]

I had many of the same side effects when on Hydroxurea too.  I stopped the Hyrdoxurea last Monday and so far, there are no real side effects from Gleevec that I notice.  Ive gained energy and have been playing basketball too.  I actually feel like I have more energy on the court now then when I was undiagnosed. 

So my blood test yesterday showed the WBC is down to 6500 - NORMAL!  So hopefully it stays in that range on the Gleevec!

Marc

[CallMeLucky]

Hi Marc - I'm around same age as you and on Gleevec for about 8 mo.  I just posted my results from last test.  If you are interested you can take a look http://community.lls.org/thread/10025.

[lolo]

Great!! Down to normal, getting exercise! Eating well, I presume!

Congratulations!!!

[lolo]

Thank you, Susan!

I will be posting a lil' something about my journey from Gleevec to Sprycel in a few days. I'll relay my theory re my health decline, etc etc. Hopefully all my info will be helpful : )

Lots of love to all

Laura

[cometbro]

Marc, that is great to hear.  Now i'm kind of jealous cause Gleevec is much easier to take than Tasigna as far as scheduling around food.  As long as we don't get lazy we should continue to have good energy.