Myeloproliferative has three phases of this disease group.  The first two phases are non-cancerous and many people live a normal life with minor adjustments.  The third phase however, is a very serious form of cancer that is not treatable and considered terminal.  This is the form I have.  It is called Myeloproliferative dysplasia, JAK 2, idiopathic fibrosis.
This cancer changes your bone marrow into a fibrotic material much like cement.   It also causes more work on your spleen and liver which have to monitored very closely.
 
The main problem right now is to find out how much fibrosis has taken over the bone marrow.  If you are in the beginning phase of this cancer you may possibly be able to have a stem cell transplant.  However, if the disease has progressed too far there is no further treatment.
 
This disease affects your appetite, taste, liver, spleen, causes increased weakness and tiredness consistently, and creates severe anemia, requiring frequent blood transfusions.  There is also increased joint pain. 
 
Becauses of the Factor V blood disorder that was diagnosed eleven years ago, I have needed an oral chemo to help keep platlets (causes you to clot and can create blood clots if not monitored) at an acceptable level.  I have also been on coumadin and aspirin to decrease chances of clots.
 
Now that I have been diagnosed with Myeloproliferative dysplasia, I have had a hard time adjusting the oral chemo due to the low blood counts.  The Doctor is having to take me off and on the oral medication trying to walk a fine line between keeping my platelets down and keeping my blood counts up.
 
The life expectance of this disease is 2-5 years.  However, we know all things can change and there is always a positive side and people who respond in a positive way.

Saturday, December 5, 2009

Update

Hey everybody - I'm sending for mom but wanted to let you know that she did have the transplant today and everything went well.  She tires easily but is keeping in good spirits.  We found out the donor was actually in Germany - isn't amazing that they found her match halfway around the world?  Pray for blessings and good health for her donor too.  We will never know who he or she is, but s/he has given mom a gift we can never repay. Your calls, e-mails and cards are very much appreciated.   Thanks everybody for your support and your prayers!
 
We love you all!
 
Cayti Burch nee Lewis
 
P.S. We are having a Pampered Chef fundraiser online - the invitations said the party was Tuesday, but it is an ongoing thing on-line and you can place orders up until December 15.  A portion of the proceeds will be donated to National Foundation for Transplants for Peg Lewis so check and see if there's something you might like for yourself or for a gift. 
Each day is a day that God has given us, and each moment of that day is in HIS hands.
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