9 replies to this topic

[Beanie]

I am just interested to know from the people who were initially on Gleevec, and then had to switch because Gleevec stopped working for them,  how long they were on it before it stopped working?  From different things I have read, I have got the impression that if you make it to the two year mark your chances of remaining on it are pretty good. I am hoping that this is the case because I have been on Gleevec 400 for 1 1/2 years, reaching complete molecular response at three months, and hope that it will continue working for me indefinitely.

[CallMeLucky]

I think it is pretty hard to say, but if you were CMR on Gleevec at 3 months and have been CMR for the past year and 3 months, I would say you are in pretty good shape and the odds of you developing Gleevec resistance would have to be pretty low.  So while no one knows for certain, if I were you, I would be feeling pretty good about where am I am.

[Beanie]

Yes, while I totally hate this whole cancer thing, I consider myself very lucky so far.  I can handle my side effects and feel pretty good most of the time.  Every time I go to the doctor and get a good report I thank God and my lucky stars.

[donnadavis]

I was on Gleevec  for  two  years  and  never  reached  complete molecular response . It stopped working probably  at  about  18  months  although  i  didn't  know  it  at  the  time. I have  been  on  three different drugs  since and Sprycel seems to be  working best.

[threedprof]

i've been curious about this topic.  Not knowing the much about how the drugs work in our bodies I may come across as ignorant but when you were taking Gleevec did you miss doses?

[Tedsey]

It is not clear that I actually failed Gleevec (or it failed me, more like).  However, around 9 months it was clear that my PCR remained flat and I was not near CCyR.  

For the record, I have never skipped a dose of the TKI.  I have two toddlers I am desperate to see grow up.  How could I ever forget to take that pill which may keep this disease from progressing so soon?  My oldest just started pre-school this week and I am thrilled that I am alive to experience it (although he screams and cries each time I drop him off--but today he made a friend and now LOVES it)!!!!! 

I am happy you are doing so well!

Long life to you,

Tedsey  

[lala]

So glad YOU got to take YOUR son to preschool!!!  I hope you get to take him to college, too!  -Lala

[Tedsey]

Thanks lala!

You are always so kind to me.

All the best to you,

Teds

[lala]

Hi....I remember raising my 3 little kids PRE-cml and being desperate to raise them.  Always wondering who would love them as much as I did if  something happened to me.......I remember.......and now I pray my daughter lives forever because she has a little one.  Happy your little one found a new friend at preschool!!!  :-). Lala

[Susan61]

Hi Beanie:  I think your doing really good, and have nothing to worry about.  Keep in mind that they have other TKI drugs for those who fail the one they are on.

When I started Gleevec, thats all I had back in  2000.  It had to work for me as far as I was concerned.  I had no other alternatives except a BMT, and I had no match.  Just keep thinking about all the research that has been done since Gleevec was invented, and all the new things that have been learned.

Enjoy your life which will be for many more years.

Susan