UPDATE: 3/29/19

  • After a long delay, we finally got the correct labs done to show if the chemotherapy is working. I will put a link to the graph below (if you are so interested) to show the changes over time. In summary, it appears that the chemo is working! The bad, cancer, cells (AKA IgG Lambda Light Chains) has gone down from 2658.9 mg/l to now, 129.5 mg/l. Normal is below 24 mg/l. My change represents over a 95% reduction and anything beyond 90% is considered “remission.” We don’t know if 129.5 mg/l can still damage the kidneys, so our goal is always toward normal. So this is good news. If the chemotherapy was not working, and the fact I have renal failure, it would have created a much more difficult course. We will keep me on aggressive chemotherapy until we reach the lowest possible number.
  • My renal function seems to continue a very, very slow road to improvement. However, I will not be able to discontinue dialysis anytime soon. I find that very depressing and still a major area of prayer.
  • I will be going to the University of Washington for a consult with a Multiple Myeloma specialist within the next few weeks (they have to review my case first). The hope is, that they will consider me a candidate for autologous (where I’m my own donor) stem cell transplant. This treatment, while has risks (see my brother’s story below) has the best chance of giving me a few years of survival and possibly without minimal or no chemotherapy and its troublesome side effects.
  • My older brother, Gary, has his own bone-marrow cancer (although different from mine). Ironically, he called me in December about being a stem-cell donor for him. It was only ten days later that I was diagnosed with my own cancer. Gary was preparing for a donor stem cell transplant, which could give him several good years. However, in the process, he developed a systemic, methicillin resistant staphylococcus aureus (MERSA) infection, which has caused multi-system organ failure. He is on life support but is now stable. There is still hope for his recovery and that he can continue with the stem cell transplant, which could save his life. Please pray for Gary too.
  • Today I did my longest walk, about 4 miles. It was mostly flat and slow in an old-growth forest.
  • I had very severe side effects from chemotherapy over the previous two cycles of treatment. This week’s cycle we tried a new approach of adding more high-dose steroids on two days rather than one. It seems to have worked as I’ve had minimal side effects (except from the steroids) today.
  • I want to write about this in my next “Ramblings” but I’m facing a dilemma in how I respond to well-meaning friends and family.  I keep hearing from people (who have the greatest of intentions) “Mike, you look good. I’m so glad you are feeling better.” If I answer honestly, “I’m actually feeling worse,” it seems I am coming across as seeking pity or that I’m a “Debbie Downer.” I am not. I am just being honest. You would think that after 2 plus months since I was discharged from the hospital and have had tens of thousands of dollars of treatments, that I would be “better.”  But you must understand that my treatments, chemo and dialysis, have been targeted toward keeping me alive, not helping me to feel better. Actually, I feel my worse immediately after dialysis and the side effects, until now, from chemo has been accumulative. So far, none of my neurological symptoms, caused by living in renal failure, are better. So, I’m getting out of bed in the morning, I’m walking on trails, I go to work two mornings a week, out of pure discipline . . . not because I’m feeling better. I say this not for pity, but for the sake of honesty. I do pray that some day I will start to feel better. Mike

 

Table of Light Chains

 

3 thoughts on “UPDATE: 3/29/19

  1. Mike, a positive in blood tests and killing of cancer cells! Yeah, but I understand you have a huge battle ongoing to keep your counts well enough to endure the treatments. So appreciate your honestly because I hear how much you are fighting to stay alive. Will pray also for your brother, so very sorry for all your family suffering thru watching two brothers battle this horrible disease! Hope , prayers and strength for stem cell appts soon for both you and your brother.

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