29 replies to this topic

[SunNsand]

Does anyone know what the longest amount of time is, that someone has been on Gleevec? 10 yrs.? etc.

SunNsand

[scuba]

Yes.  Susan.  From initial Gleevec trial over 11 years ago through today.  She's cured, but won't admit it.

[valiantchong]

Hi,

It is true that there are people over 11 years, since 1999 start of Glivec Trial till now, still alive taking them. However no one is ready to call it a cure yet. It is believe, on present medical data that Glivec could not kill the initial so call progenitor Leukemic stem cells. Hence they are still taking them, however there are about 5% of people could stop taking them still able to survive without medication. But they are closely monitored by doctors as in STIM trial in France and Australia. Hopefully one day most of us will be cured.   

[CallMeLucky]

I think it goes back to 1998 and there are people still on it today.

[SunNsand]

Michael -

   Do you mean cured as if she stops taking Gleevec she will never get CML again? I'm confused with your use of the word cured.  Cured means forever.

  It's good to hear 11 yrs. on Gleevec. I must not know Susan. How is she physically today?

SunNsand

[CallMeLucky]

Michael tends to throw that word around a bit.  Most of us, I think, are a little more apprehensive to jump to that conclusion.

I believe Susan has been on Gleevec for 13 years and she has been PCRU for many years. 

Wether or not CML would return if she and others in her position stopped taking Gleevec is unknown.  There are trials that look at that and the majority of patients who stop taking TKI relapse.  Recent studies show that TKI do not kill the stem cell.  Why a minority can stop and not relapse is not yet known but points to some type of immunological reason, perhaps because they took Interferon or something like that.  Again, studies are being done.  For now the thinking is you take TKI for life.  Will that change?  Maybe, I hope so, but we are not there.  On the up side, most people can take TKI for the rest of their natural life.

[cherylannes]

There are quite a number of people still on Gleevec from the original IRIS trial.  These are the patients that are updated every year at ASH.  I think there are over 300 of them....

Officially, I am not sure if there is anyone who was on the IRIS trial who has stopped taking Gleevec and not relapsed.  Unofficially, there is a lady here in Montreal who was on the IRIS Trial, and decided to stop taking Gleevec after a bout of pleural effusion that required hospitalization two years ago.  She has not taken the drug since then, and has not relapsed....I bump into her every once in a while as she is treated at my hospital.....

I am not sure which Suzan you are talking about, but if you are talking about the Suzan who did the petition which provided expanded access to GLeevec for all patients failing IFN in 1999, she is still on Gleevec and she is not cured..If she doesn't take Gleevec regularly she does see an increase in her PCR numbers....She lives in Montreal and Ottawa and i see her and communicate with her regularly....

Cured, in my book anyway, means no longer taking the drug and no relapse.  But in all honesty we will never know if we are cured until we die of an old age and from something else.  Then they can say, well I guess she/he was really cured.....

A delightful thought actually....

Cheers!

[SunNsand]

Thanks everyone for your thoughts. In my book, I can't see using the word cured until about 50 yrs. after Gleevec was released, then they will know more. I was just wondering about the person (whoever they are) that has been on Gleevec for the longest and how their health is from taking Gleevec for so many years. We are all blazing a new trail, and I was wondering how the Gleevec head scout was doing.

SunNsand

[valiantchong]

Since you are in PCRU, you may be consider functional cured too, however until someone is in the STIM trial, no one will know. Anyway, there is an experiment on 8 person who achieved PCRU only 1 is mRNA BCR-ABL undetectable. However, this does not mean the other 7 are not functional cured. Only time will tell... as what u mentioned 50 yrs to know the truth ? No one knows... I do hope will happen in < 20 years......

Will someone taking Glivec for > 10 years cumulate enough toxicity to cause other complication ? That is what I am afraid off, since most patients stop taking after sometime due to the complication...

Everyone will look forward towards the cure....

[Stevea]

In April it will be 9 years for me on Gleevec!

[SunNsand]

Stevea that is good news! Can you tell me how your side effects, if you have had any, gotten better, worse etc.? Has your liver stayed healthy?

SunNsand

[PhilB]

The Susan that Michael is referring to is of course our very own Susan61 who is the longest running G patient on these boards.  I too think Michael is somewhat optimistic with his statement that she must be fully cured - she may be, but the STIM trials all show that there's no way to be sure until you stop and very many do in fact 'relapse' if they stop - although they quickly regain response when they restart.  The only thing we can therefore say with a pretty high degree of certainity is that Susan could almost certainly have a nice long drug holiday any time she wants - with careful monitoring.

As regards VC's concerns about long term side effects, there isn't any evidence of this so far.  The majority of people from the original IRIS trial who haven't died of something completely different by now are still on G

[robbie]

I'm not the longest but was diagnosed at accelerated phase in 1999 & began Phase2 clinical trial on STI-571(gleevec) Oct.1999. Still doing great, able to work and participate in sports. I also wouldn't use the "cure" word even with hitting PCRU. I've had times when those sneaky little leukemia cells have shown back up....Robbie

[MACELPatient]

Well considering the 91% survival rate at 10 years on Gleevec, I am sure there are quite a few.

[jsmiddiebrush]

Susan61 posted last month about how she's doing - look for "Hope My News Inspires Someone" from January .  She truly is inspiring and gives us all hope!

[SunNsand]

Thank you, I will have Susan61 in my scope from now on.

[Stevea]

I was diagnosed when I was 19 years old and the only side effect that I can really remember was nausea and that went away once I started to eat more before I took my pill.  I also gained weight but I think that was from eating a big meal at night to take my pill.  I started taking my pill at lunch time and having my big meal at lunch and I have lost almost 15lbs.

I never let leukemia hold me back from doing anything I wanted to do, when I turned 21 it was a huge party and I was beyond trashed.  Since then my liver has held up remarkably from all the Jager that I drink!

I am tired but I don't know if that is from the gleevec or not, I'm very active and I don't like to sit at home.  I work full time at a software company plus I play pool at a very high level and that takes up probably 20-30 more hours a week.  I just never wanted CML to become an excuse for me so I live everyday the way I want to and I don't let the small things get to me!

[valiantchong]

Hi Steve,

Really admired your spirit of living, I do hope I have that kind of active and carefree life style like you. I just could not keep my mind off the sickness, it really make me feeling depress daily.

Wondering how are u able to do it and stay positive...

Hope all the best to you....

[Stevea]

Thank you!  I like most people on this forum saw how fast everything can be taken from you!  It was a blink of an eye for me, one second I was fine and the next I was on the way to a cancer hospital not knowning what was going on!  Now knowning how fast life can be lost, why take anything for granted?

There is a lot more to my story and I also wish to one day write a book!

"If you don't live for something... then you die for nothing!"

[helenet]

wouldn't this be Zavie Miller - from the famous Zavie Zero club?