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.

Wednesday, July 15, 2009

7/14/09 Update

Just an update to let everyone know that I found out today that Carol, my sister is not a match for the transplant.  Very disappointing but I know God will provide.
 
I am requiring fairly frequent transfusions and becoming tired a lot earier than the last few months.  My pain is fairly well controlled.
 
We are moving to a new house closer to the doctors and hospital located outside Claremore.  Will send information in a week or two.Phones will stay the same.
 
Please pray for our family, finances, as this will cost about double than if we could have had it in St. Frances.  MD Anderson also requires a 24 caregive for 90 days while you ar ein Houston.  Please pray for my family and friends who will help with this.  Please pray for continued wisdom in making these decisions.
 
Thanks and miss everyone.
 
Peg Lewis

Each day is a day that God has given us, and each moment of that day is in HIS hands.

No comments:

Post a Comment