Today marks Bill's 60th Birthday, exactly two and a half years after his transplant. Before I get emotional, I would like to catch everyone up on what has transpired since the last post.
Sept 2012 - Bill did not have any relapses with the pneumonia. He progressively improved and as of the last chest x-ray his lungs look clear.
Nov 2012 - Bill had his two year check up and bone marrow biopsy. The CD33 is 99.6% donor (down from 100% last year), the CD3 and the bone marrow are both 100% donor. Dr. Ayala said that Bill is in remission!!! Here is what the nurse wrote me in an e-mail
"I have attached all the reports. He is in remission! The reports are exactly as expected, with a full chimerism of 100% in the marrow, 100% in the CD3 line, and 99.6% in the CD33 line. Normal XY male chromosomes noted in all cells analyzed. His T-cell gene rearrangement is still positive, and in T-cell malignancies, that is very common post transplant, and sometimes you will find that patients alternate between being positive and negative. These are NOT malignant cells, but could be pre-markers (COULD, not ARE)."
For the past few years Bill has been having trouble with his hip. Pain, discomfort and trouble walking at times. In April Bill started to get testing done to determine the condition of his hip. The MRI test showed that Bill's right hip was severely deformed and needed to be replaced. After much research Bill decided to go down to Pampano Beach, FL to have Dr. Steven E. Naide perform an Anterior Approach Total Hip replacement. Wednesday May 8, 2013 Bill had a hip replacement. On Friday May 10, 2013 Bill was discharged from the hospital and went home walking with a walker. Within a week and a half Bill was only using a cane to assist him while he walked, by three weeks Bill was walking with no assistance. Throughout the entire process he only took one pain pill and that was the day after the surgery.
On May 29, 2013 Bill had his three month follow up with Dr. Ayala at Moffitt. All of his counts were perfect and Bill is feeling great. We asked Dr. Ayala how his other T-PLL patients were and he shared with us that he had four patients that had T-PLL and Bill is the only one that is still living. We asked the Dr. what the chances were of the disease coming back and he said less than 5%. He said Bill is a miracle and will be with us for a long time.
Today is Bill's 60th Birthday. His is 2 and 1/2 years post transplant. Many emotions go through my mind as I think about where we are and where we have come over the last four years. The best emotion is that Bill is with us today to celebrate his birthday. Bill may you have a happy day and continue to have many more healthy and happy birthdays.
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Want to bring you up today date on some of the other folks that we followed that had the dreadful T-PLL.
April 2012 Max Fischer (T-PLL Support Net Blog) went back on Campath due to his T-PLL starting to show signs of recurrence, 2 1/2 years after transplant. Max's response to the Campath was impressive.
Aug - Nov 2012 - Max went through 3 DLI's (donor lymphocyte infusions) in hopes of getting mild GVHD (Graft vs. Host Disease) as the assumption is there will be GVL - Graft vs. Leukemia which will obliterate the T-PLL. The third DLI put Max into acute GVHD impacting his Liver, intestines and Stomach. Max was admitted to Roswell.
Jan 2013 Shirley Fischer shared the news that she learned that in June of 2011 Mark Vancura (Curing Vancura Blog) passed away, one year and one month post transplant.
Jan 20, 2013 - Bill and I had the opportunity to Skype with Max and Shirley. Max was very weak, but still in fairly good spirits and we were thrilled to finally get to see him and speak with him since his admission to the hospital. At times he seemed a little confused but all in all it was a great conversation.
Thursday January 24, 2013 Max Fischer passed away at the age of 68 (three years and five months post transplant). As a caregiver I can only begin to imagine what Shirley is going through after fighting the disease side by side with Max for five years. We keep in touch with Shirley and know that she is coping with her loss the best she can. Only time can heal the pain of loss. We are looking forward to Shirley coming down to Florida for the next winter season so we can meet her in person.
Please keep Shirley in your prayers.
