Thursday, February 17, 2005

Starting the next phase with a great deal of anxiety, fear and hope.

My specimens showed that my numbers are still not great. My hemoglobin continues to drop and is now 7.9 so I will have a transfusion tomorrow before I go into the hospital. The transfusion will be at 1:00 in the afternoon. Some have asked me to give the “normal” numbers when I quote mine. Hemoglobin should be between 12.0-15.5 and mine today was registered at 7.9.

My creatinine serum has gone higher and now stands at 3.5. It should be between 0.8-1.5. Creatinine serum deals with the kidneys and the Secondary Amyloidosis is the problem with the kidneys and this is the main reason for the transplant.

We met with Dr. Anderlini this afternoon to finalize the plans for the transplant. To illustrate that M. D. Anderson is a 24/7 facility, I will be admitted to the hospital at 11:00 P.M. Friday evening. The high dose chemo (Melphalan) will be administered on Saturday and Sunday. Each day I will receive the chemo for about an hour. Monday will be a day of rest and then Tuesday I will receive my stem cells back. There were six days of collection and thus there are six bags of cells. These bags will be combined into two larger bags and will be given back to me on Tuesday. I will receive one bag in the morning and one in the afternoon. That will complete the chemo and the returning of the stem cells to me. I will be in the hospital for about three weeks total. The rest of the time will be to monitor my progress and to bring me back to a state that will allow me to function on my own.

Chemo does not "kick in" immediately and the estimate of the time before I will truly feel the effects will be a few days after it is administered. The last time I had chemo (2Cda) the fourth and fifth days were the worse. Melphalan is a chemo that will take its toll on the patient and it will not be an easy time for me. They will provide for my needs with medications to lessen the nausea, flu like symptoms and other effects of the chemo. They will do their best but will be unable to make it a “walk-in-the-park”. Dr. Anderlini does not “sugar-coat” anything but he is also not an alarmist. He has told us this will not be an easy treatment or an easy time for me but all concerned feel this is my best chance. The amyloidosis has not shown up in other areas but they will have to be aware that it is present in my kidneys and nothing can guarantee that it will not appear elsewhere. All tests have shown it is not in other organs so hopefully it is only in my kidneys. This is considered a “cutting-edge” treatment for patients with Waldenstrom’s Macroglobulinemia and Secondary Amyloidosis and there are so few of us with the combination of the two diseases that there are not many case histories to study. My hope is that my treatment will be successful and act as a teaching tool for the medical profession for others who follow.

I will go into the hospital the 18th of February and should be out by the end of March. I will then be an outpatient and will still be monitored daily with blood specimens. After a period of time, I will be monitored 2 or 3 times a week and when all is back in order; I will be released to return home. This should be about mid April.

The question has been asked on my web site if there is anything done to the stem cells while they are out of my body other than adding the anticoagulant. I did not think so but today I asked Dr. Anderlini and he said nothing is done to them but the anticoagulant and the freezing process until the time they are needed.

I had mentioned that the large line subclavian catheter was to be removed and a smaller line with three lumens would be installed. Dr. Anderlini preferred the present style so we did not change it.