T-PLL Update


Last week was a long week of treatment, one sometimes two every day. Bill is very happy that the 5 days of Cladribine are behind him for another month. The sores in Bill's mouth have healed, and other than being fatigued he is feeling good.


Friday night we had a phone call with Max and Shirley who live in Buffalo, NY. Max is 10 plus months post bone marrow transplant. His first birthday is coming up soon and will be a great celebration. During the call Max and Shirley shared their experience from getting to remission, pre-transplant, post transplant while in the hospital and then at home. There is nothing like first hand information when it comes to preparing and what to expect. Bill and I had many questions and Max and Shirley were great. I was able to type all the main points and developed a question sheet we will bring to our bone marrow team meeting at Moffitt this Thursday, July 15th. We are grateful to Max and Shirley for taking the time to help, words cannot express our gratitude.


Tomorrow Bill has his 16th Campath injection and then a follow up with Dr. Castro's office. Maybe the flow cytometry reports will be back. We are curious to see where Bill's blood levels are and if he will need a Neulasta injection to help bring up his WBC.


As promised, I have attached some links for information on bone marrow transplantation. The links can be found to the right of the blog, just below the followers under that heading "Bone Marrow Transplantation".

The first link (Blood and Marrow Stem Cell Transplantation Guide) is a document I read on the Leukemia & Lymphoma Societies website. The document explains the entire bone marrow process in layman's terms. Bill will be getting an allogeneic transplant. Bill's siblings are his best chance for an HLA match (human leukocyte antigen system). A person's HLA type is governed by genes on chromosome 6 in tissue cells. A sibling match is one in four due to each parent having two identifiers, only one from each is transferred to the child. See below:




http://www.bmtinfonet.org/ The second link: "Blood & Marrow Transplant Information Network" is a great site full on information and free reading material on bone marrow transplant that can be mailed to your home.

www.leukemia-lymphoma.org/hm_lls The third link: "The Leukemia and Lymphoma Society" home page. Do a search on bone marrow and many articles are returned.

http://www.marrow.org/ The fourth link: "National Marrow Donor Program" contains information on how to become a donor as well as information for patients and families.