Week 2. Day 1 of Cycle 1 Carfilzomib and Dex – November 6 2012

Up in the dark this morning to walk Kemmer before I had to leave at 7:00 AM for my appointment at St. Luke’s Hospital MSTI at 7:20 AM. Kemmer waited for me in Jonah. My blood draw went well on the first poke.

I waited and WAITED and WAITED for my appointment with Dr. Padavanija and finally asked the receptionist Pamela if they might have forgotten me – they DID! I wore a mask in the waiting area because there was someone coughing.

2nd Dose of Carfilzomib – October 31 2012

Woke with a slight all over headache (1-2 on a 1-10 scale), but otherwise fine. Didn’t sleep very well because of the dex, so I worked on my computer several hours during the night.

Checked out of the motel and went to Walmart in Twin Falls, Idaho with Shirley Olsen. We arrived early at St. Luke’s Hospital MSTI for my 2nd dose of Carfilzomib for the week and they took me early. No blood draw today.

I took 4 mg of dex orally and then the RN Letia checked my IV that we left in overnight with heparin flush in it. The site looked bruised this morning, but it ran like a charm and we were able to use it today too.

Carfilzomib (Kyprolis) Authorization Completed – October 26 2012

I knew I posted a little early today – RN Peggy from St. Luke’s Hospital MSTI in Twin Falls just told me that my carfilzomib has my health insurance authorization and will be ready for me Tuesday 30 October 2012 and 31 October 2012. I will get it intravenously 2 days in a row! If my Revlimid really arrives Monday 29 Oct 2012 – I’ll start that for 21 days on 7 days off 30 October 2012 too.

Nothing to Update – 2nd Relapse Medication Insurance Authorization – October 26 2012

Have heard nothing about the Carfilzomib approval today, so I called St. Luke’s Hospital MSTI and had to leave a message for the nurse. I’ve decided to invest a LOT LESS angst in to this process – not good for me.

Curascript called this morning and said the Revlimid WOULD NOT be delivered today and I’ll get it Monday – again, chill Jude, chill~

Terrible night of leg cramps – nothing seems to help except stretching and walking around. I took a plain Tylenol 500 mg with some success. Also had a gripping gut ache for awhile.

Walked Kemmer on the Mine Hill 1.38 miles – cold at 34 degrees, but very little wind which was nice. I should have had a red bandana on Kemmer to show

Nothing is Going Easy – October 25 2012

I’ve had calls from St. Luke’s Hospital MSTI nurses, my insurance Case Manager, and Curascript – but, I still don’t have approval for the Carfilzomib. The Revlimid is scheduled to be delivered tomorrow – we’ll see~ And no news from the Mayo Clinic Scottsdale for the 2nd opinion yet either.

My 91 year old father was complaining of pain in his right leg below the arterial stents he had placed, so we called his doctor in Blackfoot, Idaho at Bingham Memorial Hospital. He ordered an ultrasound, so I drove my father the 90 miles to Blackfoot. After the scan we headed home through a HAIL storm on the desert of all things. Once we got into the Big Lost River Valley on Highway 93, it looked like we might go through a squall – but missed it.
My father’s doctor called and said all was okay with the scan for now, but may need some intervention in the future. We didn’t get home until after 6 PM – way past both my father’s and my bedtimes – HA.

Insurance Approval Delays and Walking – October 24 2012

Still do not have insurance approval for Carfilzomib and Revlimid. I called St. Luke’s in Twin Falls and they are still waiting on the approval. I called my insurance Case Manager (she is in Ohio) and had to leave a message. No one seems to realize I need these medicines sooner than later. I lost my patience a bit. Today was a hard day to forget I have relapsed x 2 high risk multiple myeloma.

So, I walked Kemmer 0.68 miles on the Mine Hill today – always calming for me. Our summer route was covered with snow and slick, so we walked the steeper Mine Hill road today beginning at 6,232 feet with a gain in elevation of 132 feet or the equivalent of a 11 story building to 6,364 feet. Cold at 37 degrees, but no wind and mostly blue skies.

My left foot and leg neuropathy continue to burn, but during the day when I’m active it isn’t too bad. However, during the night, it interferes with my sleep.

Lab Values, Dr. Visit, Velcade, and Review of Carfilzomid – October 23 2012

Up early in the dark for my trip to St. Luke’s Hospital MSTI (Mountain States Tumor Institute) in Twin Falls, Idaho. Left early because it snowed yesterday and so I could go more slowly watching for critters (deer, moose, elk) in the road, but I didn’t encounter any.

My blood draw went well and I was careful to hold the site for 5 minutes afterwards since I expected that my platelets were improving, but still below normal.

My white blood cells were almost normal at 4.4 (norms 4.5-11); hemoglobin normal at 12.3 (norms 12-15); and my platelets were up from 80 last week to a normal of 149 (norms 140-440). So, my bone marrow is recovering from the Zolinza (vorinostat) in these values.
My creatinine was lower at 1.16 (norms 0.52-1.04) from 1.47 last week on 10/16/2012 and 1.20 on 10/20/2012. My BUN remains normal at 11 (norms 7-170. So, it appears that my kidney function tests are on the mend. I will continue to drink lots of fluids daily (3,000 to 3,500 ml).

My LDH is soaring at 993 (norms 313-618) – goes well with the relapse.

After my labs were back, I saw Dr. Padavanija and nurse Kendi. They have been working on getting insurance approval for the Carfilzomib (Kyprolis)

Carfizomib, Revlimid (Lenalidomide), Dexamethasone Scheduled Plan For 2nd Relapse – October 17 2012

Dr. Clay Smith and pharmacist, Jenny at the University of Colorado Hospital (UCH) gave me a schedule they would like to follow with my new chemo Carfizomib intravenously, Revlimid (lenalidomide) orally, and dexamethasone orally. I will do this schedule in Idaho at St. Luke’s Hospital MSTI, Twin Falls, Idaho.