11 replies to this topic

[lolo]

Hi all~

I don't know why it's taken me so long to join in on all of the wonderful discussion and support found on these message boards! Recently I've been going through and finding so many reflections of my own experiences with CML.

I'm new here, but I'm definitely not new to CML.  Was Dx on New Year's eve of 2000. I started the Gleevec after a couple of months w/ Hydrea. Gleevec had just been approved-- the timing was certainly magical for me.

More recently, (Dec. 2010) I built a resistance to Gleevec which of course I did not want to believe. It hit me like a ton of bricks when I realized that I didn't have a "pinched nerve" in my back, but rather, I was relapsing with a lot of inflamed marrow in my spine. owwwww. These last few months of my life deserve a whole other topic thread. ; )

I'm glad to be here and glad to see so much love and support here.

Love to you all,

Lolo

[GerryL]

Hi Lolo,

Sorry to hear you have to start a new drug, but I guess the good news is there are another two available plus more in the pipeline. Can I be nosey and ask if you know why you became resistant to Gleevec. Most of the information I have read seemed to indicate once you got past 6 years, particularly if you had a good response to Gleevec, you would have a normal life span on Gleevec.

I'm glad you've decided to post.

Gerry

[MJL]

Hi lolo,

Glad you joined our group. I am curious though. How do they diagnose inflamed marrow? I am very neurotic about back pain since having fractures in my spine. Every little (sometimes not so little) ache and pain in my back makes me nervous. Always worry about another fracture. Other than the side effects I am responding well to Gleevec. I have been taking it for almost 2 years. Good luck with new meds.

MJL.

[SunNsand]

Lolo -

   I wanted to say hello and so glad you joined in. You have a wealth of experience from 10 yrs. and you being dx the same time Gleevec was coming out ... excellent timing! I am curious as to what your Gleevec dosage was and, if you'd like to share your back problem issue, I'm sure a few would be interested. I had an MRI on my back last week so I'm be one of them .

SunNsand

[lala]

Hi, Lolo!!!!!!  I post as Lala!!!  how funny is that?!  I really am Laura but my friends call me La!  welcome to the group---everyone is ssssooo nice-----at times they make me laugh/cry/ and really help me when others don't know how i feel!  my best friend says i need to wear a sign on my chest that reads:  remember, i have cml!  because i look good-well, not like i did in my 20's :-), and am happy, people forget.  after having the holidays, i came up with a new slogan.......if you knew how hard it is for me to do the things i like to do, imagine how hard it is to do the things i don't want to do!!!!!!!!!!!  i am a smart 54 year old woman!!!!!!  diagnosed 2006....get no sympathy from family!!!!!!!  :-)  issues issues issues!!!!!!  welcome to our club....it is a club full of good people!

[jrsboo]

Dearest LaLa,

OMG!  That was the FUNNIEST SLOGAN EVER!!!!!!!!!!!  And really made me understand myself a little bit more too!  I am going to print that slogan on everything I own!

"If you knew how hard it is for me to do the things i like to do, imagine how hard it is to do the things i don't want to do!" 

Brilliant, simply brilliant. 

And explains why I am "avoiding" doing some things.........sigh. 

Sending happy hugs to all!

Caroline

[Susan61]

Hi:  So glad you joined us.  Sorry you had to switch drugs.  What are you on now,and how is it working for you?. I started Gleevec in 2000.  I was in the clinical trial for it in New York.  I think becoming resistant is a worry for everyone who has been on a TKI for that long.  Did you get to PCRU during that time you were on Gleevec?  Share anything that will help you or someone else on the boards. I was diagnosed in 1998.   I did the Interferon an Ara-C Shots in the beginning, and when that did not work anymore I did the Hydrea until I got onto the Gleevec.  Hope your doing well on your present treatment.

[hannibellemo]

Hi, Lala,

Not only do we hijack discussions, we also hijack slogans! Just remember that "imitation is the most sincere form of flattery".

Thanks for coming up with best explanation ever for my actions!

Pat

[hannibellemo]

Welcome, Lolo! Glad you finally found this site - you must have been doing very well indeed to have missed us for so long.

Hope that continues for you long into the future, but that you continue to hang out here with us!

Pat

[Trey]

Hey Lolo,

Glad you joined.  You teased us with your promise to tell your story.  We are waiting impatiently, and require more LOLO INFO.  Yes, we are full of "love and support", and other things too.  Including impatience......and other things......

[lthouse612]

Hi lolo,

       By they way I think it's great we have a lolo and a lala! lol  Anyway, I thought I was being a bit aprehensive to switching drugs after 4 years of gleevec... having been on it since 2000 can't be easily dismissed.  I know I've heard some very good optimistical viewsand experiences about switching but I for one don't care for change to well.  Especially after having gotten "use" to the side affects with gleevec.. if that can ever really happen.  I guess just learning to live with the side affects is a better fit to describe it.  At any rate I feel for you and hope the switch to which ever drug is a positive step.  I'm on the verge of switching to sprycel but I have to get over a really bad cold first.  I'll go back in 2 weeks and then I'll know more about what the "plan" is.  Anyway... being here sick at home does have it's benefits.  I get to read in here more and see how everyone is doing!  Take care!

Mark

[lala]

Hi, ladies!!!!   I am so happy to hear that you love my new slogan:  it is a good one!!  :-)  It is so good that it reminds me to not have the next few Christmas gatherings at my house!! ------unless, of course, I want to have them!!  My husband's family thinks I can still do the parties.....OMG!  So, I too, will be printing t-shirts!!!!  FUNNY!  You all made my day!  ;-)  Hope you all have a good week---it is warming up!

~~~lala