J. Michael Jones

Stem Cell Transplant

Tomorrow I enter the Seattle Cancer Care Alliance’s autologous (meaning, using my own stem cells) transplantation program. It is one of the first in the world and highly regarded. I will give a tentative schedule.

• This week, I will start my work up, including exams, labs, bone marrow biopsy, MRIs and bone scans. We will stay in a hotel room just for the program and then be released to come home on Friday.
• Next week I will continue daily appointments as the work up continues. We will stay in the same hotel room.
• Somewhere toward the end of next week, when all the tests are done, a final decision will be made about my approval for the transplant. We will be released to return home on Friday 10th for the week end.
• If approved, I will return to Seattle Monday morning May 13th. I think I will be admitted to the U of Washington Medical Center, where I will have a catheter placed in the left side of my chest (I still have one in my right). I will be given drugs to stimulate my bone marrow. After a few days, my blood will be drawn off and processed, removing stem cells. The goal is to gather 2 million stem cells. If we can’t get that many, then family members will be contacted as possible donors and the process will be put on hold.
• After the collection of my stem cells, a harsh chemotherapy drug, melphalan, will be given to burn out my present bone marrow, and that could be around May 22nd. This is one of the most difficult times of the process as most patients are quite ill and 5% do not survive, based on my diagnoses.
• After a couple of weeks, if no setbacks, my stems cells will be thawed out and infused back into me. During this time, before they set up house keeping back in my bone marrow, I will be at risk for catastrophic infections. I will have to remain in isolation, inside the hospital, until mid June.
• Then I will be discharged to a local residence, where I have to be very careful until my bone marrow rebuilds. If things go well through July (I will be seen in the clinic daily through July, with readmissions any time I run a fever or get too ill), I will be discharged on August 9th.
• The subsequent months I will be at home but with limited contact with the outside world.

Kidney Function

My latest labs were yesterday. My kidney recovery has been as disappointing as hell. The word frustration is too mild of a term. So, in summary, when you look at one main toxin, creatinine, it had dropped slightly a few weeks ago, but has now plateaued. My algorithm, showing the accumulation of creatinine per hour, must be at zero for me to ever get off dialysis. See the chart below:

If you combine the fall of creatinine with that of BUN, you get a little better slope of decline as seen in the graph below. The yellow line shows the slope of the line. This one must be at 40 to get off dialysis.

As I had mentioned in a previous Ramblings post, it has been a very discouraging week, emotionally, regarding my kidney function. I was re-diagnosed, without any discussion with me, as “End Stage Renal Failure.” That is a billing code so the dialysis center gets more money from insurance, but it implies that you are never getting better, and the people here treat you that way. I did find one study of people exactly like me, finding out they are in renal failure, caused by Multiple Myeloma, and the average time to kidney recovery was 6.1 months. I’m half way there now.

As soon as I get to the University of Washington, I want to pursue getting a catheter in my belly so I can start home, peritoneal dialysis and get this catheter out of my chest. While I hate dialysis more than you could ever imagine, if I do it myself at home, I think I can more tightly control the toxins in my blood. By doing so, I might be able to reduce some of my neurological symptoms, which are my worst symptoms, and a big part of the nightmare I find myself living in. It seems that my neurological symptoms are getting worse rather than better.