High-Risk Relapsed Myeloma Update University of Colorado – April 16 2013

Met with Clay Smith, MD right on time. He is always such a good listener. We went over my lab values for today. My LDH is high at 367 (norms 98-192).

My Immunoglobulin G value is sky-high – NOT GOOD at 1247. Looks normal according to the norms of 700-1643), but my cancer is carried on the IgG. My IgG value was 3,422 on 18 Jun 2011 just after my initial diagnosis on 24 May 2011 prior to any treatment.

 My immunoglobulin is still way too low at 10 (norms 66-436).

 My immunoglobulin M is still way too low at <25 (norms 43-279).

My CBC shows white blood cells low at 2.3 (norms 4.5-11); ANC (absolute neutrophil count low at 1.00); hemoglobin low at 8.5 (norms 12-16); platelets very low at 39 (140-440); LDH 367 high.

 My Chem Panel shows mild kidney failure with creatinine at 1.28 (norms 0.52-1.04); BUN 18 (norms 7-17); and GFR 53 (norms > 60). My glucose is high at 192 (norms 70-112), but they won’t want to intervene until the glucose exceeds 200. I can control the glucose by reducing my sugar intake.

I will have to wait for my SPEP myeloma test results, but since I’m a non-secretory patient, they are not that valuable. Dr. Smith wants me to schedule a bone marrow biopsy with Dr. Padavanija at St. Luke’s Hospital in Twin Falls, Idaho as soon as I return to Idaho on 18 April

He thinks my low wbc’s, platelets, and hemoglobin are due to either too much pomalidomide suppression and/or my cancer plasma cells are unresponsive to the pomalidomide and growing uncontrolled and squeezing out the the normal bone marrow elements (wbc, platelets, and hemoglobin). Only a bone marrow biopsy will determine this.

For now, we hold the pomolidomide. So, I won’t be on any chemo for now. Dr. Smith will also discuss with Dr. Padavanija raising the low threshold of hemoglobin for packed red blood cell transfusion. I’m not sure what hemoglobin value he was thinking of. Typically, they do not transfusion until the hemoglobin is less than 7.0. But, since I am symptomatic with shortness of breath, it merits raising the hemoglobin value for transfusion for me. Will give me more energy – hopefully.

If the pomalidomide is not working, Dr. Smith admitted that I’m in a “tough situation”. If this is the case (as determined by bone marrow biopsy), I could look for a clinical trial somewhere that does NOT require total relocation to the trial location and see if they would accept me or I could opt to just stop all treatment. However, Dr. Smith warned that many of the clinical trials have minimum lab value requirements and I might not meet those at this time. He is will to help me with the clinical trial application if I go that way. He will also contact Mayo Clinic-Scottsdale for any suggestions they might have. I told Dr. Smith I didn’t think I was ready at this point to stop treatment.

As far as the Dex 40 mg and spreading it out over 4 days goes – this is not optimal, but he said I could do it. Might want to switch to Prednisone in the same dosage taking it every other day. Will discuss with Dr. Padavanija.

Dr. Smith does not want me doing much until my platelets recover to at least 60 – currently at 39. (Norms 140-440). No riding the 4-wheeler.

Dr. Smith did a thorough physical exam and I told him about my left-sided neck and head pain and how it responded to migraine medication, Frovea. He worried it might be due to the low platelets and warned me about Fragmin use with such low platelets.

Discussed the right eye “floater” deal and he also worried that his was due to low platelets and encouraged me to see the ophthalmologist again if it changed at all. It persists as a brownish blotch in the shape of “Africa”.

Just before we left, we met Dr. Smith’s RN Sare.

All the snowy roads were dry on the way home to Greeley and we made it just before 4 PM…long day. Stopped for take out Chinese Food – yum!