Peg's Update Page: 10/10 update

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, October 10, 2009

10/10 update

Dear Friends and Family,

I heard Friday that a match has been found and I will be leaving for Dallas in two weeks. We will be staying at Dallas in the hospital motel which is $40.00 per night. It is about the cheapest we could find and has transportation to the main hospital each day. I will go in for transfusions and lab daily.

Please pray that the stem cells take and for continued life for me. I appreciated all that everyone has done, all the prayers and help.

We still do not have the house unpacked as I get to short of breath when I do very much.

Love, Tony and Peg