Peg's Update Page: November 2009

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.

Tuesday, November 24, 2009

Thanksgiving Day

I am going to Dallas at 5:00 am Tuesday morning. I will have central line placement and physician visit wednesday and admitted to Baylor at Dallas on Thursday. I will start IV chemo for six days (which is a big change) and will have the stem cell transplant a week from Friday. Tony is staying at the Twice Blessed House on the Baylor campus.

Say a prayer please.....

Love, Peg

Wednesday, November 4, 2009

Transplant Update

Today I was notified that the donor will not be able to come in until the 16th. It then takes seven to 10 days to clear her to be a donor. I will be going to Dallas about a week before the actual transplant date which is now tentatively the first week of December. Please keep praying as we keep trying to increase transplant funds, try not to get to nervous and pray for Tony's work. This is the 3rd time he has had to change his vacation and time off. This also means i will not be home for Christmas.

Thanks. Love, Peg