2/28/10

2/28/10 We are back from Boston and Joe's six month evaluation. Joe did not get the complete response this visit we were hoping for and he is not in remission yet but the doctors are optimistic that by our next visit in August he will have a complete response to treatment. He does not need any additional chemo right now, the test came back that there was no amyloid in the bone marrow or free light chains. Some of the other test still showed a band of amyloid which could be a surplus of amyloid his system is disposing of which means the stem cell transplant is still doing its job. There was a few other possibilities that the doctors explained to us one being a clone of the free light chains and the other being new amyloid but it is more likely the surplus of amyloid. We were told the stem cell transplant sometimes takes a year to get a response. We are happy with results so far, even though at first we were disappointed that Joe did not get a complete response. We need to be thankful that Joe did not need anymore chemotherapy as some patients do at this point of their treatment. Joe will need to get a ablation done to his heart to get it back into normal rhythm and hopefully this will help him feel better, he is always out of breath, dizzy and his blood pressure is low. While in Boston Joe came down with bronchitis, his doctor here put him on antibiotics and is watching him to make sure it does not develop into pneumonia. Joe will continue to see his hematologist here monthly to watch his blood levels. Joe's kidney failure from the amyloid is at 50% the nephrologist he sees in Boston said this is no different than someone with one kidney and Joe will just need to take very good care of his kidneys. Joe will need to see his nephrologist here every three months. We are both still processing all the information from this visit I will update you again in a few weeks when we get the hard copy of the report from Boston and to let you know how Joe is doing. God Bless and we love you.

Monday 2/08/10

2/08/10 Well two more weeks and we will be in Boston Joe and I are both very anxious. Joe will go through all the same test he went through for his evaluation including the bone marrow which he is dreading. We will be there for three days of testing come home on Thursday and wait for the phone call on Friday which will give us the news if he is in remission. We are hoping and praying for a complete response so Joe will not have to continue with any treatment. Joe will have to be tested again in August and than again every year after that. There is no cure for Amyloidosis so it can come back at anytime but hopefully not for many years. We both realize this is our life now and we are living each day to its fullest. We can't let the things we can't control run our lives. We have wonderful family and friends that love us and we love them, we have our faith and everything else will work its self out. Joe has been feeling pretty good these last couple of weeks, he looks good his hair has grown in darker. His blood work came back good this last time his triglycerides are down to 197. The shingles pain is just about gone. Well keep praying, God Bless all of you, we love you and I will let you know what the news is when we get it.