jm's Adventure with Multiple Myeloma: 2nd Relapse Confirmed - Day 151 After 2nd ASCT - October 16 2012

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Tuesday, October 16, 2012

2nd Relapse Confirmed - Day 151 After 2nd ASCT - October 16 2012

I met Clay Smith, MD and Lindsay Davis, MD Fellow at the University of Colorado Hospital today and liked both of them. My sister, Jani, went with me to my appointment. I know I look too happy for a gal in her second relapse -- but, happy is better than sad.
As I suspected, Dr. Smith thinks I have relapsed based on my M-Spike of 0.4, increasing LDH levels, and increasing immunoglobulin G and wants to do a bone marrow biopsy tomorrow, Wednesday morning, to confirm the relapse. They also drew the SPEP tests today which take several days to get back.

Afterwards I will get my Velcade chemo, dex, and some fluids. My kidney function test done on my blood called creatinine, is sky high at 1.47 (norms 0.4 to 1.20) indicating that I have kidney damage of some kind, so they are going to give me fluids IV with my chemo today. I think the creatinine is up because of the Zolinza (vorinostat), but Dr. Smith thinks it may be due to the myeloma building up in my bone marrow. I probably should have stopped the Zolinza sooner.
My platelets are low at 80 (norms 150-400). However, my white blood cell count was fine at 4.3 (norms 4-11) and my hemoglobin okay at 12.1 (norms 12.1-16.3).

Since, Dr. Smith is sure I HAVE relapsed, he has already started the approval process for a the new multiple myeloma approved drug, Carfilzomib, aka Kyprolis, for me (it was only approved for use in July of this year - see link here Carfizomib aka Kyprolis). Dr. Smith will not wait the 7-10 days for the bone marrow biopsy results to be back. However, the approval for the drug may take 7-14 days. They called St. Luke's in Twin Falls, Idaho and I can get the drug there. It has to be given twice a week intravenously. I will also have to take Revlimid 10 mg orally and dex 20 mg.

I need to have some sort of intravenous access - a port in my chest or a PICC Line in my arm), but they are not going to do one because of my blood clot in my heart issues in the past – so, hope that my veins hold up for twice a week blood draws and the Carfilzomib. I will have to go back on the Fragmin (blood thinner) injections in my stomach daily (oh joy~) because of the Revlimid.

He also encouraged me to get a second opinion and gave me a couple of doctors to consider – one in Boston and one in Scottsdale, Arizona. He wants me to go see one of them as soon as it can be arranged after the bone marrow biopsy results are back in 7-10 days.

Technician Hank gave me an intramuscular flu shot in my right arm - it probably won't give me any immunity since my immuno system is still so depressed after 2 autologous stem cell transplants.
So, I will drive home to Mackay, Idaho this Friday, 10/19/2012 with Faye Hummel along to help me drive. She will fly back to Denver on Saturday, 10/20/12 from Idaho Falls.

I'll try to arrange travel for Jani and I to the 2nd opinion doctor.


  1. Sorry to hear about the relapse but happy to know there is n new drug available! Hope to see you on the mine hill soon. The weather in mackay is still wonderful. It was a tad windy yesterday but not bad.
    Dianne Parker

  2. Wishing you all the best!


  3. So sorry to hear this news JM.
    Regards Sharyn

  4. Well, I'm not down and out yet - I'm hopeful about the Carfilzomib and should be able to start it soon. Thanks everyone for your positive thoughts. jm

  5. My mom was treated by dr Richardson's partner Dr. Anderson. A wonderful place. Great care and cutting edge. Praying for you. Good luck!!

  6. Thanks Anonymous. Hopefully, I can get there and back soon. jm

  7. Hi JM, i'm so excited to find you. I have been being treated for multiple myeloma with 3 chromosomal deletions, for almost 4 years. what a journey. I love your attitude, as a mom of 4 children, I have chose to SMILE too. The blessings are endless. I am at Mayo Clinic in Scottsdale, AZ, their care in unparalleled. They are organized, efficient, state of the art. I did drug trials on carfelzomib a couple of years ago, it lasted for a little while. I just relapsed last week at about day 200 from my first asct. Kind of bummin, may start carfelzomib again now that its officially on the market. Theres a few other trial drugs available, those may help you. I have had lesion/tumor breaks, hip replacements, broken ribs, lesions throughout my body. You have a lot of blood issues, duh, but i mean extra fun stuff that I havent had to deal with, yet... call me 4809079091 if I can help you in any way. God Bless You. Keep smiling, ps. I like your hair, mines curly now, love it. Starting a blog this week. You inspire me, yours is excellent.

  8. I'm sorry to hear about your relapse. :c( I love your POSITIVE attitude, though. Enduring things joyfully helps us to endure things better! You're quite the example to those of us who have more trivial trials at the moment.