18 replies to this topic

[Susan61]

Hi:  I just had my 6 month appointment with my Oncologist yesterday, and I think she was more excited than I was.  My blood work came back very good, and my PCR showed that I have been PCRU now for 7 years.   She said she wished the Gleevec worked for everyone.  She said that the fact that I have been on it since Oct. of 2000 was a good thing that it still works for me. I just started year #13 Living With CML

     I do feel very blessed,and that is what I told her.  I cannot do anything more than take one day at a time.

     I just hope this will help someone just starting out on Gleevec or any of the other new TKI's.  We just have to keep doing what we are doing, and pray for a cure in our lifetime.

[Marnie]

Congratulations!!  Your numbers are inspirational, and really helpful to those of us not so far along on the journey.

Marnie

[jenn]

Thanks for the news,makes everyone hopeful and belive it's not a death sentence.

[MJL]

Great news Susan, I am sure you have lived through many issues and side effects during all these years. It certainly encourages me, I have been on Gleevec since May of 2209, so far so good, but in the back of my mind there is always that little worry that the Gleevec will stop doing the job. Your news gives me hope that it will "keep on going".

MJL.

[PhilB]

Congratulations Susan.

Assuming you have always been on 400mg a day that means you have got through pretty much exactly one and a half kilos of Gleevec which is amazing.

[CallMeLucky]

Congratulations Susan and thank you for your participation here.  I think it would be easy after all these years to stray away from the boards and not participate as much.  Your involvement is so helpful.  I recall early on when I was feeling hopeless, you were one of the first people to respond to me, I read your story, shared it with my wife, and it gave us hope.  I will always appreciate that.

I wish you many, many more years of PCRU results.

All the best....

[CallMeLucky]

Thanks Phil for breaking it down Tony Montana style....

[reedgirl]

It is inspiring hearing your news...13 years FANTASTIC!  Thank you for being on here and giving us some hope and something to strive for, everyone can be a 10+ year survivor

[John]

Hey Susan,

That's AWESOME!!!

Great news.

We're all hoping to join you on that long road of success.

John

[Susan61]

Thanks Phil and Everyone Else who has gotten something out of my news.  You always make me laugh Phil.  Laughter is one of the best medications anyone can have.  I do look back at when I began with all of this, and wondering where it would all lead.  I like to share all my positive experiences, and also to try to help those who still do not know what to expect.

I am always around, even if I do not post sometimes.  I do try to read the posts on a regular basis, and give my advice when I can.

I still depend on Trey for all the knowledge that I do not have.

God Bless Everyone

[hannibellemo]

Congratulations, Susan! That is very inspiring news indeed!

Pat

[scuba]

Wonderful news, Susan!

Of course - since you had Interferon first for quite a while and then continued with Gleevec and the fact that you quickly went into PCRu

and now for over 7 years - means your are CML FREE!!  There is most certainly not a single cell left.

Baby - you are cured!

Of course - taking the magic pill every day gives you peace of mind - but Gleevec circulates in your blood with nothing to find and stop (except c-kit and produce annoying side affects).

Some day your Onc will probably suggest that you discontinue Gleevec when the results of other PCRu trials for people who did what you did (Interferon first followed by Gleevec into PCRu) show that they can remain in remission CML free ...forever.

Personally - I believe you now have immunity to CML.   Even if some cells are around - when they show up, the body now can get rid of them.  Something about that Interferon + Gleevec combo.  There is a lot of research now looking into the immune response side to give the body it's own natural way to spot the bad cells and eliminate them long before they become detectable.  That is where the cure will be discovered for the rest of us.

You are in the ZERO club.  As in Zero CML cells.

[Trey]

Michael,

Susan meant to be inspiring (which she is to all of us), but not to drive irrational exuberance.

[scuba]

Yeah - yeah - you're probably cured too.  Math model working in your favor.

[Susan61]

Hi Billie:  Glad my posting made you feel good.  That was my intention, because I know what it feels like to wonder what is going on and what will be.  Its so natural, and like most of us we think of this and that with every little pain or cramp that we get.

     I still find myself worrying at times.  I do have a lot of other health problems that are not related to my CML, and I feel like I live at the doctors office most of the time.

    Having a good Oncologist is half the battle in  my estimation.  Mine retired, and I left his associate who took over for him.  I am with a new doctor now, and its okay, but I miss my original doctor so much.  Sounds like your doing good.  We can only do one day at a time.

    We are always here for you.  Just ask anything you want at anytime.

[threedprof]

Congratulations on your longterm success, Susan!  I recall looking forward to your posts for longevity potential since I was diagnosed in '06.  I'm very pleased to hear you are still PCRU and for seven years.  Amazing.  I'm in my fourth year of PCRU and look forward to following your track record.  - joel

[Susan61]

Congratulations on your many years of PCRU.  Lets pray that we do continue to read great progress for us and many others too.

Susan

[dolphin]

Congratulations Susan, I am so so happy for you. This is truly inspiring for all of us and I wish you loads of luck and health in the future.

I sincerely pray that each and everyone of us and my mom of course get cured someday and lead a long healthy and happy life.

God bless

Surabhi