Monday, March 14th at 2:00 p.m., Dad had his follow-up appointment with Dr. Ayala at the main campus of the Moffitt Cancer Center. The appointment started with Denise, transplant nurse, reviewing Dad’s current medications. She also asked about Dad’s current symptoms. Denise noted that Dad’s last blood transfusion was two days ago on Saturday.
Dad immediately asked Denise if she had a new transplant admission date. She did not. Denise said that Dr. Ayala had not allowed her to schedule the donor until he saw Dad. Denise anticipated Dr. Ayala would now allow her set a new admission date with the donor based upon what she was seeing and hearing during the appointment. She sought to manage Mom and Dad’s expectations by saying that the admission date would likely be at least seven days out. Dad expressed disappointment with the week long wait. According to Denise, it is common courtesy to provide the donor time to make plans to accommodate the transplant date. Denise also shared that Dr. Ayala had reached out to Dr. Sokol, hematology oncology, asking if Dad needs another dose of Brentuximab Vedotin.
At 2:45 p.m., Dr. Ayala came in and asked how Dad was feeling. Dad’s biggest complaint was in regards to his feet and legs due to their over radiation. They burn, tingle and randomly go numb. Dr. Ayala inquired of his appetite and his fitness. Dad has been going to the fitness center, exercising in a mask and gloves, every few days. Dad spends 20 minutes on the bike and does some free weights. I imagine that Dad has no problem getting on a bike nor accessing the weights. Others, in the fitness center, probably scurry away thinking Dad has some highly infectious disease when they see him wearing his mask and gloves. A perk of being immunosuppressed.
Dr. Ayala conducted a physical examination of Dad. The egg, which now looks like a black mushroom, on Dad’s head is starting to reduce in size. Dad calls it a “head decoration.” Dr. Ayala said that Dad’s skin looked perfect. Dr. Ayala checked Dad’s lungs, legs and feet. At the end of the physical exam, Dr. Ayala asked jokingly, “What are we going to do with you?”
Dr. Ayala observed that Dad has gotten weaker. Dr. Ayala said that he doesn’t have a solid reason not to proceed with the stem cell transplant. He stated that without a transplant, Dad has no chance for survival. Dr. Ayala increased the risk of Dad dying from the transplant to 30-40%. Dr. Ayala predicted that it will be a bumpy road, and it may not work.
Dad wanted to know about the status of his disease. Dr. Ayala said that Dad still has CTCL. It is well under control, but no for a long time. It will come back and in full force. From a CTCL point of view, Dad looked “beautiful.” Disease control was excellent. His blood and skin had cleared.
Mom inquired about Dad’s weight loss. We reviewed the trends displayed in Dad’s weight graph on the exam room computer. Since January, Dad has lost 14 pounds. Dr. Ayala instructed Dad to continue going to the gym, walk, get stronger, be cautious about infections, eat, and fatten up.
Dr. Ayala recommended that Dad not do another round of Brentuximab Vedotin since they are targeting an admission date of a week or less.
Denise will work with Mark, PA at Moffitt Cancer Center at International Plaza (MIP), to setup appointments for regular blood support and a daily line flush until
Dad’s new admission date for transplant.
Dr. Ayala and Denise will determine the proper Bactrim dosage (the script says one amount and the medicine bottle says another). Denise will notify Dad about the donor and the confirmed admission date. Denise will develop and send Mom a new, custom calendar containing Dad’s key activities during the transplant.
Hopefully, the fourth time is a charm!
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