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, August 12, 2009

Update

Just waned to touch base with my family and friends to let you all know what is going on.  I never could get MD Anderson to send notes or information to my oncology Dr in Tulsa.  Two of the doctors there remain conflicted with what each think of a diagnosis and just to say this made me real nervous.  After talking with Dr, Lynch, the Tulsa Oncologist, I am going a week from Thursday and Friday to Baylor at Dallas for a second opinion and evaluation for stem cett transplant.  Tony and I will be leaving on Thursday and return eithor Frid or Sat.
 
We have moved into our new house between Claremore and Pryor.  It is about 25 minutes from Tulsa and out in the country somewhat, at least enough to let Tony think he is in the country. However, I can see neighbors and other houses so feel ok with this.  Our new address is 1237 N 4266, Pryor, Ok 74361.  Our cells are the same. 
 
Cristy moved into our house at Siloam as her and Jason are no longer.  He has quit his job and moved to California.  This has been extremely hard on their three little girls so please pray for them.
 
I have lost more weight, and have felt a little yuckie lately.  Maybe I have done too much.  I still have boxes all over and hope I will get these undone before I am 90!
 
Please keep in touch.  I am trying to keep busy with quilting and  crafts but get tired easy.
 
Love, Peg

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