25 replies to this topic

[Susan61]

Hi:  I got my PCR results today, and I am PCRU again which makes it 8 years for me now.  My Oncologist told me that within the next 5 years they will be able to test to see if you will have a mutation after being PCRU for a length of time.  I am not good with all the specifics, but she said I may be able to get off the Gleevec some years down the road with no progression of the disease.  Many others on here , may know more about this sort of thing.  I have not heard about this.

     I told her I just feel so blessed to be where I am, and its okay if I have to keep taking the Gleevec right now.

Susan 61

[simone4]

Susan,our "CML" goddess, that is great news.  You are such an important

person on this board. You always are willing to share your journey and offer

comfort to those that have this journey ahead of them.

May you always maintain your PRU status.

I have a feeling you will be the "first" again in this game to report

your first days of leaving Gleevec and going ahead for the rest of

us to follow.

Peace,

Simone

[Marnie]

Yea!!! Congratulations!!  That is very exciting news!

Marnie

[LivingWellWithCML]

Congratulations!  Your ongoing PCRU status is an inspiration and gives us so much hope of what's possible with TKI therapy.  Keep it up!

[Susan61]

Hi Simone: Thank You for your kind words.  I just try to give as much positive to everyone to know that there is so much being done for cancer in general let alone CML  I have to think back very often to when I was diagnosed in 1998, and how people did not survive for long without that BMT.  I had no plans to go on when I found out I had no match for the BMT, and then there was this clinical trial in NY right on the front page of my  newspaper.  I said what the heck, let me try it.  I had no other alternatives except Hydrea at the time, till they could figure out what to do with me.

I proceeded to get into that trial for the STI-571 with no idea how long it would work for me.  I tell everyone not to give up, no matter what they are going through.   A Great Faith In God has gotten me to where I am, more than my Gleevec.

Susan

[Susan61]

Thanks Marnie And Your test results will be good too.

[scuba]

You don't have a single Leukemic stem cell, progenitor cell or any other Leukemic cell in your body.  You outlived it.  It's gone and dead.

Imagine all that Gleevec circulating in your blood with nowhere to go.  Nothing to kill.  It's like sending in the Marines with no one to fight.  They sit around, drink, smoke and tell bad jokes.

I envy your position - God bless you.

[Susan61]

Hi:  I actually thought about you today, because your always telling me that I am cured.  My doctor walked into the room, and she said  I Think You Are Cured.  Then she went on to explain what is going on in the research with regard to CML.  My original Oncologist never had much faith in the Gleevec, and thats why I got into the trial on my own.  He said that Cancer Cells are smart, and they find a way to get around the drug or whatever where the drug will no longer work.  Now when I think back though, he did not know much about TKI's as I was his first patient to go do what I did.  Still I feel that if my Gleevec has gotten me to this point, and I can tolerate it then I will keep taking it until I find something foolproof to stop it.

Maybe you will be the one to find the cure.  Thanks So Much for all Your Encouragement.  We both had good news, now lets hear some more from others.

God Bless You Too Michael

Susan

[Pin]

Susan, what wonderful news! You truly are an inspiration to be where you are now, from where you have come from.

My uncle was diagnosed with CML in about 1998 too, and he also started on a Gleevec trial. Sadly, he died from an unrelated second heart attack not long after starting the drug though (he was diagnosed after blood tests from the first heart attack). I really admire people who register in these trials, you are helping us all.

Pretty weird that I have two CMLers in the family though, I'm sure it's quite rare - at least that's what they tell me!

[grannyd]

Congratulaions on your wonderful results!!! I remember reading your posts when I was first diagnosed, I was so confused, nervous, anxious, and all my thoughts was negative. I had to read your posts a few times to actually get the date in my head of when you were diagnosed. I thought I was reading it wrong, that many years with CML, maybe I can deal with this too. I reached CMR in 6 months, I take tasigna, and I pray everyday I can hold onto it, you give me so much encouragement, and all the others on this site. I want to thank you for all the information you have given thru your experience. Congrats again!! Prayers to all granny d

[Susan61]

Hi Granny:  That is what it  is all about.  We need to encourage and share to help others, and even when we do not have a good day or good results we should post so others can help us to think good thoughts that we will get where we want to be.   I have said that we can talk to our loved ones and good friends, but only the people on here who are going through the same thing can truly understand and give the support that is needed.

Like you said you went through the anxiety etc.  We all do, and I still get very anxious when I have to get this test done and wait for the results.

When I walked into the doctors office today even after all these years of knowing what its all about, my blood pressure was up until we finished my exam and I got my results.

     So glad you feel encouraged, and yes you did read the right dates.  God Willing I will start my 14th year in Dec.  I always share the information so people can see that you can Live With CML.  Take Care and God Bless

Susan

[GerryL]

Congratulations Susan - may you continue to have many more years of PCRU and sometime sooner or later show that you've outlived your CML.

[Tedsey]

Dear Susan,

What wonderful news!  I really hope you are indeed cured!  But I understand what you are saying.  If the TKI keeps me alive with a decent quality of life, I don't mind taking it forever.  After reading your post, I have such hope that I will see my babies grow up.

Always wishing you the best and grateful to be a recipient of your wisdom,

Tedsey

[ChrisC]

Long live Susan and her golden heart!

[reedgirl]

~CoNgRaTuLaTiOnS~

You are always so encouraging to others on this board no matter what the situation is, and now this fantastic news alone gives us so much hope in beating this disease!!!  Hope you enjoyed your celebration, you certainly deserve a big one!  Thank you also for the faith you have and sharing it with others!

Audrey

[Cathy]

Congradulations Susan! What wonderful news you do keep us all going and your always so kind and helpful. I think you are cured and will be a stepping stone for the rest of us to follow you !

Best Wishes!

Cathy 

[BethG]

Susan61--

Congratulations! So happy to hear this great news!!!

Hugs,

Beth

[CallMeLucky]

Awesome!  Congratulations, you truly are an inspiration.

[gunner]

Susan-

Congratulations one the results, and Thank You for maintaining a presence on this board.

[SunNsand]

Wow that is great news for you and exciting news for all of us! You will continue to get plenty of thoughts & prayers that you may continue to have an excellent response & possibly stop the TKI. I am grateful TKI's are around, but I feel like I may get to watch the first person "be set free"!