I can hardly believe that it has been 8 years since my diagnosis with dialysis dependent kidney failure, and then found out this was the good news. The bad news, which I found out later was the kidney failure was caused by a cancer of the bone marrow called multliple myeloma. I was first treated at Mayo Jacksonville and then went on to do a modified off protocol version of the UAMS-MIRT University of Arkansas Myeloma Institutes TT3 (Total Therapy 3) program. So now I return once a year to see if my complete remission continues. In the first week in February I will have blood drawn, a 24 hour urine analysis, MRI, PET scan, and a bone marrow biopsy, and a new test called MRD or Minimal Residual Disease test.
Bart the Wonderful Wizard of Arkansas The bone marrow biopsy is usually the one test that most people dread. I have found that if I have a fentanyl lollypop 30 minutes prior to the procedure, I don't have that much discomfort. If you actually want to find out what the nurse is doing back there during the biopsy you can see a video of the process if your CLICK HERE.
However this time I am more apprehensive of the new MRD test. All the current tests for light chains, lesions, bone marrow biopsy, M spike, etc. have always indicated that I was in CR. The MRD test is a far more sensitive test, and will be able to see if there are any myeloma cells left in my system. So a MRD negative result would confirm that my disease is under control based on the most sensitive tests yet available for multiple myeloma diagnostics. And a positive result would just SUCK. Other diseases use a MRD test to determine if a patient's treatment has been successful, and when or if it should be changed. MRD is used for acute lymphoblastic leukemia (ALL), and MRD status is one of the most powerful predictors of disease-free and overall survival for children with ALL. The promise for myeloma is that we are able to use this test in the same manner. The International Myeloma Foundation has developed a program called the Black Swan Initiative intended to use a test for MRD with enough sensitivity that a MRD negative result would define a multiple myeloma cure and develop treatment protocols that can achieve this goal.
So now I am off to see the Wizard (Bart Barlogie). I like Bart, respect their program and the people at UAMS but as I have found, "There's no place like home, there's no place like home!"
For information on the UAMS MIRT myeloma program from a patient's perspective you can CLICK HERE, or go to Nick's Myeloma Blog which gives a detailed explanation of the program as Nick goes through it day by day if you CLICK HERE.
Added after my checkup at UAMS
So how did my visit go. For a little reference, where did I start out in Feb of 2006. I was fatigued, and a checkup which showed dialysis dependent end stage kidney failure, which at the time with myeloma had a three month life expectancy. My bone marrow was 90% myeloma cells, I was anemic, few platelets, five lytic lesions on my chest, low red and white blood cell counts, and in the emergency room for 5 days of continuous dialysis with a special filter to remove the light chains that were clogging my kidneys.
The result of my current tests, blood tests showed a normal hemogram, improved creatinine, normal liver function, CD4 counts recovering, light chains within normal levels, bone marrow biopsy with no morphological evidence of myeloma, MRI and PET scan showed no lytic lesions or infection, CT bone density did show osteopenia in my spine and I will start low-dose Zometa.
And the MRD test by 8-color flow cytometry was negative. YEA!!!! The statement from Dr. Bart Barlogie "Thus, the patient qualifies for the highest level of complete remission." YEA!!! With a final few jokes and laughs, and as always a hug for me and my wife, we bid farewell to The Wonderful Wizard of Arkansas.
For more information on multiple myeloma survival rates and life expectancy go to the web site www.myelomasurvival.com, or you can follow me on my twitter account at: https://twitter.com/grpetersen1
However this time I am more apprehensive of the new MRD test. All the current tests for light chains, lesions, bone marrow biopsy, M spike, etc. have always indicated that I was in CR. The MRD test is a far more sensitive test, and will be able to see if there are any myeloma cells left in my system. So a MRD negative result would confirm that my disease is under control based on the most sensitive tests yet available for multiple myeloma diagnostics. And a positive result would just SUCK. Other diseases use a MRD test to determine if a patient's treatment has been successful, and when or if it should be changed. MRD is used for acute lymphoblastic leukemia (ALL), and MRD status is one of the most powerful predictors of disease-free and overall survival for children with ALL. The promise for myeloma is that we are able to use this test in the same manner. The International Myeloma Foundation has developed a program called the Black Swan Initiative intended to use a test for MRD with enough sensitivity that a MRD negative result would define a multiple myeloma cure and develop treatment protocols that can achieve this goal.
So now I am off to see the Wizard (Bart Barlogie). I like Bart, respect their program and the people at UAMS but as I have found, "There's no place like home, there's no place like home!"
For information on the UAMS MIRT myeloma program from a patient's perspective you can CLICK HERE, or go to Nick's Myeloma Blog which gives a detailed explanation of the program as Nick goes through it day by day if you CLICK HERE.
Added after my checkup at UAMS
So how did my visit go. For a little reference, where did I start out in Feb of 2006. I was fatigued, and a checkup which showed dialysis dependent end stage kidney failure, which at the time with myeloma had a three month life expectancy. My bone marrow was 90% myeloma cells, I was anemic, few platelets, five lytic lesions on my chest, low red and white blood cell counts, and in the emergency room for 5 days of continuous dialysis with a special filter to remove the light chains that were clogging my kidneys.
The result of my current tests, blood tests showed a normal hemogram, improved creatinine, normal liver function, CD4 counts recovering, light chains within normal levels, bone marrow biopsy with no morphological evidence of myeloma, MRI and PET scan showed no lytic lesions or infection, CT bone density did show osteopenia in my spine and I will start low-dose Zometa.
And the MRD test by 8-color flow cytometry was negative. YEA!!!! The statement from Dr. Bart Barlogie "Thus, the patient qualifies for the highest level of complete remission." YEA!!! With a final few jokes and laughs, and as always a hug for me and my wife, we bid farewell to The Wonderful Wizard of Arkansas.
For more information on multiple myeloma survival rates and life expectancy go to the web site www.myelomasurvival.com, or you can follow me on my twitter account at: https://twitter.com/grpetersen1
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