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, May 16, 2009

Fundraising Opportunity!!!

Check out Peg's Partner page for an upcoming fundraiser -- that YOU can help with!
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Sunday, May 10, 2009

Mother's Day Update

Just a note to say "thank you" to everyone who has helped with prayers and donations. It is a good posibility that i WILL be able to have a stem cell transplant. However, the transplant doctor says I need to be more unstable than I am now due to a 20-30% mortality rate with the transplants. I have not needed a blood transfusion for 2 weeks now. Hooray!!!
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Friday, May 8, 2009

MD Anderson Update - Thursday

We were very encouraged today by the transplant physician.  He told us he didn't want to be in a hurry to do the transplant.  He felt my lab numbers were stablizing requiring less transfusions.  He is also encouraging about the new drugs to be released next month that will be started as clinical trials.  I am to come back to Houston in a month hopefully to start the clinical trial drugs.  The insurance has to approve it and the cost is $55,000.00 / year.  We will see.   These drugs have shown good promise of slowing down the progrression and alleviating the symptons such as fatigue, pain, etc.  Say a prayer.
We will be driving home tomorrow.
 
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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Tuesday, May 5, 2009

Tuesday - MD Anderson Update

This was a very good day....
 
I was at MD Anderson all day.
The transplant doctor thinks I will be a good candidate for a Stem Cell Transplant.  I will not have to take as high of dose of chemo as most people due to the 'good' condition I am in.  If Carol, my sister, can be a donor, we hope to do this in about six weeks.  Pretty scarey....
That also means I have to have funds available for use.  (scarey).
I have also been accepted in a clinical trial for a new drug therapy for this type of cancer.  As it will not proably cure the disease it hopes to alleviate the symptons such as fatigue, dec. appetite, etc. 
I feel very good about this!
We talk with the social worker tomorrow and have a bone marrow biopsy done in am
The transplant will cost somewhere between 250,000-500,000.  (Can you believe that?)
Continue to pray.
 
Love, Peg
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Update from Cayti

MD Anderson thinks mom is a good candidate for a bone marrow transplant - the hunt is on! There's a small chance that a family member will be a match so please go get tested and listed in the bone marrow donor registry. More updates at the www.partnerwithpeg.blogspot.com. Bone marrow registry @ www.marrow.org. They started her on a trial drug that will help suppress the disease while they look for a donor.
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Monday, May 4, 2009

Houston - Monday Night

We have finally made it to Houston.  On the way down here rec'd a call from MD Anderson that one of the insurance companies only approved 'consult' and would not approve 'evaluation'.  These two words are normally the same thing in the medical field.  After several calls think we have this worked out.  
 
Will be at the hospital all day tomorrow.

Please pray for the doctors, the details for the insurance companies, continued financial needs for travel, medical costs, etc., and for wisdom about the future.
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