10 replies to this topic

[Lodie]

Hi everybody!

I was diagnosed with CML almost one month ago.  Boo.  On a better note, after ten days on Hydrea, three day break, then one week on Gleevec my onc. says I have reached CHR.  Look out, cancer, I'm on a roll! 

My question is, how long after starting Gleevec did you start having all the famous side effects?  I am one week in and still pretty much feel like my old self.  I am practically holding my breath waiting for the issues to start!  I know everyone is different, but just wondering how quickly the Gleevec affected all of you.  Maybe I am just one of the lucky ones?

Thanks!

Laurie

[Trey]

Having written this posting will certainly bring them on quickly.  Update us next week.

[Happycat]

Laurie,

Trey's right, you probably just brought the side effects on, lol!  That's what happened to me.  I was exactly 2 wks into Gleevec when I went on vacation, started feeling it on the way down in the car.  Felt it the whole dang time, too.

I also reached CHR in one week, too, so if you and I are on the same timeline, you'll get them soon.  Here's hoping they are mild for you.

Traci

[Lodie]

Well, me and my big mouth!  lol

I guess I would rather this post bring them on than continue with this nervous waiting!  Seems to me that may be the worst part of this disease... all the waiting (test results, date of next test, etc.)!  I think I need to work on my patience. 

[GerryL]

Hi Laurie,

You never know - you might be lucky and not get any or have something happen at such a low level that you hardly notice.

But I have also read on another MB, where someone didn't experience any side effects until a couple of years after starting Gleevec. So it is anyone's guess.

I had the rash/es straight away, but didn't get the fluid retention until about 3 months after starting Gleevec.

Gerry

[Susan61]

Hi:  Everyone is different.  You probably have read all the different posts.  Some have a rough time with rashes or more severe side effects, and then others get through easily with the side effects they get.  I have been on Gleevec since 2000, and I have to say Fatigue was my worst side effect.  Also leg and foot cramps.  Now here it is over 10 years, and I still get fatigued on some days where I just cannot do anything.  Then I will get a burst of energy, and clean the whole house or whatever else I want to do.

     Like everyone is saying, just post in a few weeks and let us know how your doing.  Glad your doing so good.  Could be your attitude and some positive thinking.  It does work wonders.

[Lodie]

Well, shoot.  I was really hoping you all were going to say that I must have won the Gleevec Lottery and should be showing any side effects by now!  (Not really what I was expecting, but it sounded good!)

I just remembered something that I wanted to ask...  My doc told me that my BMB showed a secondary chromosomal mutation of my X chromosome (along with the standard 9/22 mutation).  He said this is nothing to worry about and it shouldn't change anything for me.  Anybody (That means you, Trey!) had any experience with this or know anything about it?  I haven't been able to find much info on exactly what that means and why it wouldn't affect anything.

Thanks everyone!

Laurie

[CallMeLucky]

Sorry about your diagnosis, welcome to the forum, and glad you are already off to a good start.  In my case the side effects came on slowly, in some ways they weren't noticeable and I can't pinpoint when they started it was just one of those things where after a while I looked back and it seemed like certain things had been with me for a while.  My two big ones are fatigue and some muscle aches.  Try to exercise if you can (get dr ok first) it will help with muscle and fatigue.  I've been pretty lucky with stomach and only get occasional cramps.  A few other passing side effects now and then.  I find the side effects cycle, so something may ramp up for a few days, be with me for a week or so and then pass, then a few weeks later come back again.  My hope is that as I continue on the drug hopefully the cycle intervals will get longer and the peaks will lessen.  I've been on Gleevec for about a year now.

Wishing you all the best.....

[CallMeLucky]

Oh yeah and in reponse to your initial question, no I'm Lucky!  LOL

[Bessie]

Hey Laurie,

Welcome to the community and sorry about the diagnosis.

I was diagnosed and have been on Gleevec since December 7, 2007.  My side effects came on like Lucky's...gradual but the worst for me are fatigue, muscle cramps (esp. in my feet...ouch!) and lots of rib pain!  I know!!!  Weird, right?  Ribs!!!

Anyway, I'm praying you do win the Gleevec Lottery and are the exception.  I'll try not to be too jealous!!! Ha!

Just hang in there.  The people on this forum are great and give me lots of good advice and help.

Take care,

Bessie

[Trey]

Regarding the issue your Onc discussed about a "secondary chromosomal mutation of [your] X chromosome".  Women have two X chromosomes and men have one X (plus a Y, which women do not have).  Sometimes there can be either a partial deletion of one of the two X chromosomes, or maybe an entire deletion of one X.  Whether this is associated with the CML or is inherited as a genetic instability would be hard to figure out.  Generally, loss of one X in women is not much of a problem.  But ask your Onc what the specific issue is with the X chromosome.