High-Risk Relapsed Nutrition Follow-Up at University of Colorado - April 16 2013

Didn't sleep well and fortunately didn't have to leave for the University of Colorado Hospital until 10 AM - back on the snowy roads. 

The roads had cleared and melted a lot and we made just over 1 hour trip without any snow issues.

I seem to have a tad more energy - perhaps from the almost 1,000 foot decrease in elevation between Mackay and Greeley.

Jani and I arrived at the University of Colorado Hospital and had lunch in the cafeteria before my noon appointment for a blood draw at the BIC.  And the ADVENTURE with multiple myeloma continues.

They drew all my labs including the SPEP myeloma markers and Vit D. The SPEP takes several days to get the results, even though I am a non-secretory patient, I'll be waiting for those.

While my labs were "cookin in the lab" I met with the UCH Nutritionist J.J. for almost an hour as part of the year follow-up after my 2nd Autologous Stem Cell Transplant. They have a new Tanita scale/machine that instantly measures your BMI and many other things. I've gained 30 pounds since my diagnosis 24 May 2011, probably because I have NEVER been off steroids in all that time.

 My Vitamin D level is still below normal at 23 (norms 30-100), but I am taking supplements. On 30 Jan 2013, my Vit D level was 21, so it on its way to normal since I doubled my supplement to 2,000 units per day.

Cycle 4 Week 2 Day 1 Carfilzomib/Dex and Day 8/21 Revlimid 10 mg - February 6 2013

Woke to my alarm this morning...so unusual for me that I took my picture!

Drove to Twin Falls in a heavy fog with visibility just 2/10ths of a mile for the most part...not very relaxing, especially since I passed at least 2 trucks with limited oncoming visibility.

The nurses had trouble getting my Bard Power Port accessed today. Part of the issue is the Huber needles they ordered JUST FOR ME are DIFFERENT than St. Luke's Hospital Huber needles. Had to have 3 pokes and at least one of those pokes was probably on the outside of the port vs in the port. My port is tilted at an angle under the skin and difficult to access. Plus, I have underlying breast tissue under the port which hurts when they mash down on the port with the Huber needle. Despite EMLA cream which I put on at home - it really hurt me...but, I am so weanie. It immediately bruised. Prior to today, I had no redness or bruising over the Bard Power Port site in my right chest. 

My white blood cell count is down some from last week to 1.9 (norms 4.5-11); hemoglobin up nicely to 9.7, but still too low (norms 12-16); platelets okay, but low at 92 (norms 140-440) and my Absolute Neutrophil Count (ANC) is up, but low at 1.23 (norm 1.9-8.8). My LDH went down from 529 to 459 in a weeks time (norms 313-618). Decreases in the LDH are good, increases NOT SO MUCH.

My kidney function tests are all normal except for the GFR which is abnormal at >60.

Results from last week blood tests done because my MCV (means average size of a red blood cell) was high.

sTSH (thyroid study) was normal at 1.66 (norms 0.47-4.68), so I'll continue to take levothyroxin 25 each morning at 4 AM on an empty stomach.

Vit B12 normal at 368 (norms 239-931); Folate normal at 7.5 ( norms > 3)

Methylmlon Acid normal at 251 (norms 87-31)

Vit D, 25-OH LOW at 21 (norms 30-100). Will take Vitamin D3 2000 mg per day (this is an increase of 1000 mg per day for me).

Vit D, 25-OH, D2 was 7 (no reference range)

Vit D, 25-OH, D3  was 14 (no reference range)

X-ray Results from 30 Jan 2013:
Skull: Done for palpable mass right forehead
Results: no identifiable bony erosive changes or destruction.

L Hip: Done for pain when lying on left side
Results: No bony destructive changes or expansile lesions, fractures or dislocation demonstrated. Clips noted both left and right inguinal regions. Mild dextroconvex curvature of lumbar spine with multilevel osteophytes. Pattern that may be reflect metallic coils over the lower abdominal wall from hernia repair (yep, I had 2 different hernia operations in the late 1970's and early 1980's).

Left St. Luke's Hospital Infusion Center just before 2 PM. They gave me a tuna sandwich for a late lunch - so nice. Went to Walmart (wearing a mask); Target (wearing a mask); and to a car wash to get Bart cleaned up.

Checked in to the motel for the night.

2nd ASCT - Test Results from July 12 2012

My M-Spike from July 12 2012 is <0.1 (less than 0.1) which is good (zero is normal).

Here is my M-Spike history since December 1, 2011 when I was in remission following my 1st autologous stem cell transplant (ASCT). I relapsed in late February 2012 and my M-Spike jumped up to 0.5. I received 2 course of VD-PACE in March and April 2012 and my M-Spike went down to 0.4, 0.3, and 0.2. I had my 2nd ASCT on May 18 2012 after a week of BEAM chemotherapy and on Day 55 my M-Spike is less than 0.1.

My Beta-2 Microglobulin is 2.5 (norms 1.3-2.9).

My Beta-2 Microglobulin history since June 15 2011 (prior to any ASCT) was 3.5 (norms 1.3 to 2.9). Dropped to 1.8 after 1st ASCT and only climbed to 2.2 at relapse. Day 55 after 2nd ASCT 2.5.

My free light chains are all low which is good.

I had a Vitamin D deficiency on May 15 2011 of 10 (norms 30-100). I took 8 weeks of Vitamin D pills (one pill once a week) and my deficiency is cured on July 12 2012 with 45 (norms 30-100).

2nd ASCT Day Minus 3 Lab Results 4 AM May 15 2012

My white cell count remains normal at 4.7 (norms 4-11.10; my hemoglobin is dropping to 8.8 (norms 12-1 - 16.3), so we could be taking lotto chances on when I'll need a blood transfusion which will be needed if the hemoglobin drops to 8 or below. My platelets are still hanging in there at 166 (norms 150-400).

The drew a new test today called the Vitamin D, 25 Hydroxy which I have have to idea what it used for, but my values are lows at 10 (norms 30-100).

Jane Koeckeritz came to visit and I managed to stay away the entire time she was here...Great to keep up with her.

 RN Jen giving me my intravenous Velcade.