Amazing news!!

[Guest guest]

This is my first post to this group although I have been monitoring all of your

information for several months. I am so thankful for the amazing information

all of you share with everyone. It is so comforting to hear that others are

going through the exact same side effects both physically and emotionally that I

am experiencing. I don't feel so alone.

I want to share my journey so far and the amazing news I received today.

I was dx March 29, 2007 after having a routine CBC because I was feeling so

exhausted and couldn't seem to shake a respiratory infection. Well, when my WBC

came back 173,000 my doctor told me he suspected CML and sent me to a hematology

oncologist for further testing and confirmation of the diagnosis. After

another, CBC and FISH the diagnosis was confirmed and my CML journey began.

Like everyone else I was devasted and very depressed.

My onc did do a Quant. PCR and my results came back 10.981 with a -0.424 log

reduction. Of course at the time I didn't have a clue what this meant. I have

been able to learn from this group and others exactly what all of the tests

mean.

I began taking Gleevec 400 mg on April 10, 2007. Except for a few side

effects things seemed to be going well and my counts responded very quickly with

my WBC going down to 18, 000. I had my first BMAon April 18 and at that

appointment noticed that I was starting to get a rash. (My BMA came back

showing the PH chromasome evident metaphases analyzed) The rash got very severe

with blistering on my arms and legs and

really bad edema in my feet, ankles and legs. Then my eyes and face started

to swell. My onc took me off Gleevec for several weeks until the rash got

better. I did try to go back on Gleevec at a lower dose but the rash started to

return so my onc decided that I was allergic to Gleevec and discontinued the

medication. Needless to say I was devastated and very frightened. Gleevec was

supposed to be my magic pill to get me to a complete response.

My onc then told me he wanted me to start Sprycel 100mg daily and see how I

responded to this therapy. On June 9th I started taking Sprycel 100mg once a

day. The side effects were pretty minimal with no rash but some nausea and

diar. My counts responded almost immediately and after two weeks was down to

normal. The only problem with Sprycel is that it took my counts too low

especially my RBC. When I started to experience some shortness of breath, my

onc cut my dose in half to 50 mg daily. An xray showed that I did not have any

plueral effusion which is sometimes a side effect of Sprycel so that was a

relief. But once again I was afraid that I would not be able to tolerate the

Sprycel either and then what. Fortunately I have been gradually increasing my

dosage and am now taking 80 mg daily. Things seem to be leveling off at that

dosage.

At my last appointment (two weeks ago) my onc did another PCR test. Today I

went in to see him and he showed me my results. My PCR was 0.000!!! I was

stunned and ecstatic at the news. To quote the report " The real time assay

shows no evidence of expression of the BCR-ABL fusion transcript... " Of course

I know this does not mean I'm cured but this is as good as it gets short of a

cure. I am truly blessed to have gotten this kind of a response so quickly and

I am thankful for the continued research and progress that has taken place

regarding CML. Just a short time ago these different options were not

available. Sprycel is truly amazing and now we have even more options to look

forward too.

I share this information to all of you let you know that if I can do it so can

you!! We have so much to be hopeful for and I'm confident in the not too

distant future they will find a cure for this disease without having a BMT.

Keep the faith and pray alot. Thank you for letting me share this amazing

news!!

Patti S