2006

March 1 - I went to Overlook Oncology and had my 3 month checkup. Peripheral blood (RBC, WBC & Platelets) was all normal.  They are running a PCR study to look for the Philly chromosomes.  Results should be back in a couple of weeks.

March 7 - I just received the results, ALL MY BLOOD CAME BACK PERFECT.  The PCR/ABL (9;22) Fusion Test result was 0.000 ! They found Zero Philly chromosomes out of the 100,000 cells tested.  I am in total remission!!

Birthdays are good for you;
the more you have, the longer you live.


I don't go back for another checkup until the beginning of June.  They will be running PCR studies and liver function tests every three months this year.  If the Philly Chromosomes remain at zero or in the very low numbers and my liver holds up to the increased dosage of Gleevec, then it will be only twice a year.

July 20 - Just received another PCR result of 0.000. I am still in total remission!!!
The side effects, however, aren't so good. I am having lots of vomiting or dry heaves and chronic shooting diarrhea.  I need to get to the gastroenterologist as soon as things settle down with the move to PA. Still, things are good!

October 13 - Friday the 13th - YIKES!!  Went to Hackensack and saw Dr. G.  He is pleased with my status. Very few patients ever reach all zeros on their PCR tests. I told him I only accept A's!  He agreed I should try taking a whole Imodium each day and see if that helps. I have to call him back in two weeks for my results and to see if the Imodium helps. Then we will decide on whether I need to drop my Gleevec back down to 400mg or try the new Squibb drug that was approved in June. The Super Gleevec is hopefully going to be approved in February 2007 and he thinks that may work better for me since it is a "cleaner" drug with less side effects. I am afraid to drop my Gleevec dosage and hope to wait for the Super G.

October 27 -  Just spoke with Dr. G .  I received another PCR result of 0.000.  I am still in total remission!!!
The whole Imodium is helping somewhat and I would like to wait and see if the Super Gleevec is released in Feb.  He has OK'd me to go 6 MONTHS before I need to have another follow up.  HURRAY !

November 12 - I just saw an interview with Actor Ryan O'Neal on TV . He was commenting that the treatment for his Leukemia was taking a pill.  I immediately Googled him and see that he has CML.
See the article. This article has really excellent and concise info about CML. It is also interesting to read this article from 2001 that was published just before Gleevec was FDA approved.

I wish you all Happiness and Good Health!
Laura

2005

March 6 - Peripheral blood (RBC, WBC & Platelets) was all normal.  They are running a PCR study to look for the Philly chromosomes.  Results should be back in a couple of weeks.

I don't go back for another checkup until the beginning of June.  They will be running PCR studies and liver function tests every three months this year.  If the Philly Chromosomes remain in the very low numbers and my liver holds up to the Gleevec, then it will be only twice a year.

April 6 - I finally received a fax of my PCR study.  Drum roll please ....................................................
"No BCR/ABL rearangement was detected in the sample." In other words - they found NO Philly Chromosomes!

I'm having  a lot of numbness in my left leg and sporadic shooting pain.

May 2 - Received news about a possible new drug under development for CML.  More Info

June - PCR Study showed 1 Philly chromosome. An ultrasound of my leg showed no clots so I need to get an MRI.
An MRI showed the leg pain to be caused by one compressed and one herniated discs in my spine.
Right now the treatment for my back is rest and Chiropractic adjustments. REST?? yeah, lets be real here!

September 14 - Peripheral blood (RBC, WBC & Platelets) was all within normal range.  They are running a PCR study to look for Philly chromosomes, a CBC and a Liver study.  Results should be back in a couple of weeks.

September 23 - the Dr. didn't like the results of the PCR study so they pulled more blood today to repeat the test at a different lab.

October 11 - after two weeks of calling the Dr., I finally got a call back and spoke with the oncologist today. The second test confirmed I am going in the wrong direction. The PCR blood test study showed the Philly Chromosomes were coming back.  That is what causes my form of Leukemia. I am now out of metabolic remission, but the numbers are still low, so not to panic. He is increasing my dosage of Gleevec by half again.  We shall see what that does. Hopefully, that will take care of it. He doesn't want to examine or retest me for three months. However, I still plan on going in December to see the specialist in Hackensack as was originally scheduled.

Right now the only side effects are emotional.  I am scared and depressed.  I have stepped up my real estate search for a mini farm. I am no longer willing to wait 3 1/2 more years until Tom retires.  Those might be the best years I have and I do not want to waste them waiting for my dream.

December 7 - Tom and I went up to Hackensack for my annual checkup and they are running more tests.  We got some encouraging news. When I was started on Gleevec about 22 months ago I was only on 400mg a day (they just increased me to 600mg in October). The good news is that they are starting all new patients on 800mg, so it just may be as simple as my dosage has been too low since I started.  Let's hope that is all it is.

We are under contract on a farm and continue to negotiate on the issues uncovered during the house inspection.  The stress isn't helping, but Tom and I will get through it.

December 23 - Good news! My PCR study results are here and I am back in remission!
So, for now, the health issues are not an immediate problem.

Merry Christmas!