Relapsed High Risk Myeloma – Update July 2 2013

Jani and I arranged to have Andrea Marinac come and stay at the house with our 3 dogs and her cute little dog, Koko since we were anticipatingag a 2-day stay in Twin Falls, Idaho with a motel stay to begin Cycle 3 of Bendamustine, Revlimid 5mg/Dex 40 mg. 


My chart below may not be correct – I have to study the original documents.


We arrived in Twin Falls just in time for my 9:40 AM appointment. Everything was running late in the MSTI Infusion Center. Had my blood drawn and then we waited in the examine room while they searched for the results of my bone marrow biopsy done 26 June 2013.

Dr. Padavanija came in and said the bone marrow biopsy results weren’t any better – at least 95% and/or 100% plasma cells. However, the M-Spike had dropped from 1.3 to 1.2. I didn’t get any hard paper copies of the bone marrow biopsy results and will have to wait until next week.

My white blood cell count (fights infection) is low, but okay for me at 1.9 (norms 4.5-11); ANC (absolute neutrophil count determines if I should wear a mask or not) is low, but okay for me at 1.24 (norms for 1.9 to 4.8); platelets MISERABLY LOW at 17 (norms 140-440) and I have not been on any chemo for the last week. They don’t like to intervene with a platelet transfusion until the platelets drop below 10 because you make antibodies against platelets and they only last 1-2 days in your body; They did not draw a LDH today.


My Chem Panel was good for my kidney function – continued mild kidney failure.

I continued back to the MSTI Infusion Room for my monthly Aredia 30 mg intravenously. I remembered to take my Claritin and Tylenol by mouth. This always helps the aches and pains that Aredia can cause post-infusion. They cannot tell you take Claritin/Tylenol because no evidence based (research) data exists on its use – but, IT has ALWAYS helped me with Zometa, Aredia, and Neupogen infusions.

While I was infusion, Dr. Padavanija called Clay Smith, MD at the University of Colorado Hospital. He was involved in an emergency, but did get back to Dr. Padvanija. Since the Bendamustine/Revlimid/Dex doesn’t seem to be working, they decided I should switch to:
Option: carfilzomib intravenously 2 days in a row/pomalidomide 21 out or 28 days orally/dex 40 mg weekly

I’ve been on both of these chemotherapy medications before, but not in his combo.

Summary of Chemotherapy Agents I’ve Had Since Diagnosis 23 Months Ago:
  1. Revlimid (lenalidomide)
  2. Velcade (bortezomib) 
  3. Decadron (dexamethasone)
  4. Thalidomide (took a couple of days and discontinued due to neuro complications)
  5. Cisplastin
  6. Adriamycin
  7. Cytoxan
  8. Etoposide
  9. Carmustine
  10. Cytarabine
  11. Melphalan
  12. Vorinostat (Zolinza)
  13. Carfilzomib (Kyprolis)
  14. Pomalidomide (Pomalyst)
  15. Bendamustine
  16. Carfilzomib Kyprolis)/Pomalidomide (Pomalyst)/Dex

I will still require “rescue blood and platelet transfusions as my platelets are not not likely to recover on this chemo cocktail. They will have to get my medical insurance approval first. That, along with 4th of July 2013 Holiday probably will delay the start until next week. The carfilzomib (Kyprolis) is given intravenously 2 days in a row and the pomalidomide (Pomalyst) is given by mouth for 21 out of 28 days.

After the Aredia ran intravenously, Jani and I went to get my hair cut. My hair has been looking like a very messed up Einstein look.

Taco Bell and Shopko. I needed shorts for a “michelin-tire-sized” girl.

On the way home, we saw a grass fire near Richfield, Idaho, called the Jim Brown Fire (below).

Then, once in our Big Lost River Valley, there was a larger fire just south of the King Mountain roads (I think they are calling it the Beaver Creek Fire). It was raining north of the fire in Leslie, Idaho – so, hopefully the moisture will go south and put the fire out.

My post-hair cut look once home – my post-chemo hair continues to have its own curl and fuzz to it, so it is HARD to control – but, my ugly Einstein look is better.


We had dropped Jonah off at M&C Lube for an oil change when we left town, so we stopped so I could pick him up and drove him home.