My CML Log

 


Laura Dedering

Hi,
Thanks to all for calling and for writing, for good wishes and for praying.
In order to pass along accurate info about what is going on, and to reduce the number of times I have to repeat the story by phone or by email, I felt it would be a good idea to set up a website journal.  Anytime anyone is interested in seeing how things are going, please just drop by this page for the latest update.  THE LATEST NEWS IS AT THE BOTTOM.
Warmest regards,
Laura


2003
Dec. 1 - I lost 20 lbs. without explanation over the last few months.  While you hate to look a gift horse in the mouth, I go to my Doctor of 25+ years for a physical to make sure everything is OK. She does a physical and pulls blood.  She tells me I have an enlarged spleen.  She gives me a script to get an abdominal CAT scan.  I make an appointment for Friday Dec. 12th.

Dec. 2 - My MD calls. I have an enlarged spleen and high white blood count and she thinks I have CML.  I need to go see a Hematologist (AKA Oncologist).  Talk about a life changing experience.
She has already made the arrangements for me to see him on Dec. 4th.  I confirm that appt. and Tom and I Google search the web for CML.  We learn a great deal of info. It means Chronic Myeloid Leukemia. It is cancer.  I call my friends, a Chemist  and a Hospital VP.  They do research and what they find out doesn't look too good.  One of them Fed Ex's 40 pages from New England Journal of Medicine dated Oct. 2003.  Based on what we learn, I move up my CAT scan to Thursday the 4th. 

Dec. 4 - Tom and I go to Overlook Hospital. I have an enlarged spleen and also an enlarged liver confirmed by the CAT scan done that morning.  They do more blood work which shows my white count is so high the lab machine can't count it.  It just comes back >>>> instead of a number!  They need to get a better lab machine.  The Doctor puts me on Hydroxyurea, a pill form of Chemotherapy and on Allopurinol which is to avoid side effects of gout caused by the Chemo.  He gives me the names of three Oncologists/Bone Marrow Transplant doctors.  I try to make appointments but they are all away in San Diego, CA at a conference.  I call my Oncologist back.  He arranges an appointment for me on Friday Dec. 12th at The Cancer Center at Hackensack Medical Center.
We tell my parents the bad news.  Probably the hardest thing I have ever done.

Dec. 5 - My 5 youngest dogs go to a friend's kennel to help ease the load at home.  I contact more friends and start to arrange potential foster care for all of my dogs.  The response is overwhelming. Every dog has a place to go, if need be.

Dec. 9 - I see the Oncologist in the late morning. My brother goes with me to arrange having his blood tested as a possible Bone Marrow Transplant donor.
I have been chromosome tested, but they do not have that test result back yet.  They do more blood work but their machine still reports my white count is so high the lab machine can't count it.  The Doctor doubles my Chemo pill dosage.

Dec. 10 - My brother gets blood drawn.  I call the Oncologist's office and my lab results are in but the doctor is not, we have to wait until tomorrow.

Dec. 11 - The oncologist calls in the afternoon, the chromosome lab results are in and my diagnosis is confirmed as CML - Chronic Myeloid Leukemia. I have several of the Philadelphia chromosomes present in my blood. Tom and I have the worst night of our lives.

Dec. 12 - We see the specialist at Hackensack.  He is very straight forward and an excellent teacher.  He is speculating that I am still in the Chronic stage based upon my clean blood work from a physical 18 months ago.  He writes me a prescription for Gleevec and renews the Chemo pills.  They do both bone marrow and bone chip biopsies (withOUT anesthesia I might add - I almost passed out from the pain). He also is running additional chromosome tests, the reason for which we didn't discuss, which was OK because Tom and I could only absorb so much information. I have been on Hydroxyurea (oral Chemo pills) and Allopurinol for about 10 days so far. I will start adding Gleevec to the regiment.  Not to forget my 40 mg of PROZAC daily!

Hopefully on Tuesday, Dec 16th, I should get the results back about which stage of the disease I am in.  If I am still in the 1st so-called chronic stage I have a 70% chance of remission using the Gleevec drug.  If I am in the acute stage, the prognosis is not too good and most likely a bone marrow transplant would be the only option.  However, even with a BMT few survive.

Still, Tom and I leave Hackensack with renewed hope and we have lunch with a friend to celebrate getting a prescription for Gleevec.  I call family to inform them of what we have learned and the pharmacy to ask them to get the Gleevec ordered.  We drop the scripts off at the pharmacy on the way home. The Gleevec should be in on Monday.

Dec. 14 - The pharmacy calls that my Gleevec has come in a day early.  Tom shovels out the car from under the snow and gets the pills, a 30 day supply.  The kid at the counter hesitates because the CO-PAY amount is $563.55.  Tom gives him our trusty Master Card. The actual cost before insurance is about $2700.00 for a One Month supply. We go to Sunday Dinner at Mom and Dad's house.  My brother has told his kids, ages 7 & 11, about my disease.  At dinner,  as I take my 1st Gleevec pill, I ask everyone to make a toast to Novartis and the research scientists who created the Gleevec drug.

Dec. 15 - I write this webpage journal since info is spreading so quickly that it is getting passed along inaccurately. Also, while it is great to hear from my friends and I welcome the amount of love and wishes I am receiving, I do need to get some extra rest right now.  I hope my friends will think this journal is a good idea.

Dec. 16 -  I called Hackensack and the nurse just told me the blast cell count from the bone marrow biopsy had less than 2% blast cells.  They are still waiting for the rest of the biopsy results and I am to call Dr. G. back tomorrow.
I am cautiously very optimistic.

Dec. 17 - I called Hackensack Univ Med Ctr and left a message for the doctor.  4 hours later, the nurse called back and told me that Dr. G. said my marrow looks fine under the microscope.  I asked if that meant I was in the Chronic Stage.  She says that the doctor says he is optimistic, but cannot say for certain until he gets all of the test results back. They are still waiting for the genetic studies to come back.  They are looking for any other abnormal chromosomes, besides the Philadelphia chromosomes they have previously identified.  I am to call them back on the 23rd.

So we wait another week..........

She also informed me I have to have weekly CBC counts done, so that is now arranged for every Friday morning at Overlook Hospital Oncology Dept.

Dec. 19 They say never underestimate the power of prayer.
I went for my 1st weekly follow up blood work at Overlook Hospital. Good News!
My White Blood Count is back to normal after exactly two weeks on the Chemo and only 6 Gleevec pills.  Dr. L. also looked at the peripheral blood under the microscope and it looked good.  He says that I can stop the Chemo now and just continue taking the other two medications, Gleevec and Allopurinol.  I will continue to have follow up blood work done every week so we can adjust my meds accordingly.

Dr. G. at Hackensack just left a message on my voice mail.  He said "GOOD NEWS". The cytogenetic results came back and they showed just the Philadelphia Chromosome.  The Bone Marrow, the Flow Cytometry and the Cytogenetics all show that this is early in the disease.  He is writing me a long letter explaining everything and that the treatment of 400 mg a day of Gleevec is the right treatment at this point.  He is turning my care over to Dr. L.

Allogeneic Bone Marrow Transplantation (BMT) is the only known treatment that results in cures of CML.  That means a sibling donor match.  My brother Tommy's blood test results have not come back yet.  BMT is not recommended at this time.  The best we are hoping for right now is remission.  Then we hope I can stay in remission until they discover a cure other than BMT.

Tom and I have a deal.  If I am in remission by March, he is going to buy me a Ruby ring.  I think he had better start saving his allowance!

Thanks everyone for all of your prayers and good wishes.  They seem to be working! Have a great weekend, Laura

Dec. 26 - Went for my weekly blood test.  Now my white cell count is too low.  That means my immune system is depressed and I need to be careful about not getting exposed to anyone who is sick. Also my blood pressure is up.

If the WBC is still low next Friday, then I may have to stop the Gleevec for a while.  I'll know more next Friday 01/02/04.

2003 Info    2004 Info    2005/2006 Info   2007/2008 Info    2009-Current
FMI: http://www.nationalcmlsociety.org/