Relapsed High Risk Myeloma - Update June 20 2013

Slept well last night, wore my plantar flexion boots all night and no leg cramps - YEA!

Woke to 31 degrees and new snow on Mt. McCaleb above Mackay, Idaho. Glad Jani put the porch flowers in the garage last night so they didn't freeze.

Jani walked the dogs on the Mine Hill and saw the cowboy rider watching over the cows up there (left upper portion of photo - click twice to enlarge photo).

When Jani got home, she did the weed eating around the yard.

Then, she went golfing at the beautiful 9-hole River Park Golf Course here in Mackay with the boys next door. 

L to R: Jani, Griffin, Kobe, Shelby, and Jackson. 

While Jani was gone, I discovered several bills that I had not attended to - related to my health and health insurance. Around 4 May 2013, I quit writing appointments on my 2013 calendar. I guess, I thought, well, if I'm near the end of my life - why bother???

I need the information about medical appointments for my health insurance travel and lodging benefit. So, I sat for several hours and created my calendar from 4 May 2013 through today using my blog entries online. I found a couple of "DENIED" health insurance claims and wrote letter of appeal for them. I almost hate the insurance paperwork more than I hate having relapsed high risk myeloma! I'm still not finished and will have to work on it tomorrow AGAIN - UGH ... I know, I'm whining, sorry - especially since overall, I have such SUPER health insurance coverage.

Drove my bills to the Post Office. I also mailed an ancient glass negative slide from my Gram's Mt. Pleasant Utah things to the museum in Mt. Pleasant.

I folded a load of laundry and developed a spasm in my low back. Remembered that I had NOT taken my 10 mg of Dex due today and took it promptly which helped a lot.

About this time, Jani returned and helped the guy who mows my lawn and warmed my dinner (left-over steak and canned beets).

Another cold forecast for tonight at 36 degrees and 30 percent of chance of rain tomorrow...but, in Idaho, just wait 20 minutes and the weather changes.

Each evening, I have mule deer visits like tonight, 20 June 2013.

Dex, MRI, Pomalidomide Approval Sought For Relapse - February 28 2013

The 40 mg of Dex I had yesterday pretty much kept me awake all night, but I kept busy with watching television and doing computer work.

Went to Walmart (wore my N95 mask) before my MRI of the hip and pelvis appointment at 10:15 AM. I'm so used to wearing this mask, it doesn't phase me when people stare.

At St. Luke's Hospital Radiology, I discovered they had me come 1 hour early to fill out 3 pages of paperwork (fortunately, I had a written summary of all my previous tests with me, which helped in filling the form out), get my clothes changed with no metal, and be ready for the MRI Exam. The MRI Exam took 1 1/2 hours and technician Melissa was very good about explaining time frames to me. I was happy to have the ear plugs and ear muffs.  I must have fallen asleep in the MRI Scanner because it didn't seem like 1 1/2 hours.

Had a call from the St. Luke's Hospital MSTI (Mountain States Tumor Institute) Pharmacy and they are working hard to get me approved for the pomalidomide. I have to call Celgene and complete a Pomalidomide SURVEY - basically to assure I cannot get pregnant and will not share the medication with others and not donate blood since this medication is a derivative of thalidomide (known to cause severe birth defects). This SURVEY has to be filled out every 6 months. I called and talked to my Anthem Insurance Transplant Coordinator RN letting her know that they were requesting pomalidomide for me. Now, I just have to wait to hear about the decision. Pomalidomide (Pomalyst) costs $10,500 for a 21 day supply.

Drove home to Mackay on dry roads. Just as I arrived home at 3 PM, it began to snow.

The 40 mg of Dex has my face puffy with bright red cheeks. Don't look at my weird hair....

Fell asleep on the sofa late afternoon and slept until 9 PM. Got up and went to bed and couldn't sleep AGAIN...but, I stayed in bed all night without any technology to keep me awake.

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. 

The reason the authorization process takes so long is probably related to the cost of the drug.

"Onyx announced the price of Kyprolis (carfilzomib) on 20 July 2012. The drug will cost $10,000 per 28-day cycle at the recommended dose for a patient of average size.

At that price and based on FDA-approved dosing schedules, Kyprolis will be the most expensive drug approved in the U.S. for multiple myeloma.

In comparison, Velcade costs between $4,000 to $8,000 per 28-day period, depending on the frequency of dosing, and Revlimid costs $7,900 per 28-day period at the FDA-approved 21-out-of-28-day dosing." From: http://www.myelomabeacon.com/news/2012/07/20/fda-approves-kyprolis-carfilzomib-for-relapsed-and-refractory-multiple-myeloma/

Things may be looking up for me if I don't have a heart attack from it  !

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 that she is NOT A DEER during hunting season. I wore a bright red coat and hat, but Kemmer is often ahead or behind me and running the sage brush.

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. 

Medical Insurance and 2nd Opinion Care - October 22 2012

I have excellent health insurance (Anthem) and I've been very thankful for that in the last 15 months since I was diagnosed with high risk multiple myeloma. 

Last night, out of the blue, but timely, my health insurance nurse Case Manager called. I filled her in on my need for a 2nd Opinion with my current relapse to 60 % plasma cells in my bone marrow and told her I wanted to go to Boston. She explained that Boston's Dana Farber is OUT of MY NETWORK and I could only go there if my doctor first wrote the insurance company doctors a letter of medical necessity explaining that Boston provides care that no one IN MY NETWORK could provide. After the insurance company receives the letter, it takes at least a week for the insurance company doctors to rule and it is not a given that they would rule in my favor. This doesn't mean I couldn't go to Boston, just a lot of hoops and a possible denial. 

My Insurance Case Manager explained that the Mayo Clinic, Scottsdale, Arizona is IN MY NETWORK and was one of the places my University of Colorado Hospital oncologist, Dr. Clay Smith had suggested last week for the 2nd Opinion. In addition, because Mayo is IN MY NETWORK, they will help me with the expenses involved in travel there (airfare, rental car, and hotel).

So, I called Jani and we decided it would be best to seek the 2nd Opinion at the Mayo Clinic, Scottsdale vs Boston. I emailed my nurse Transplant Coordinator at the University of Colorado Hospital and explained all of this. Unfortunately, they had already started the ball rolling at Boston, but Dr. Clay Smith was willing to change gears and contacted Rafeal Fonseca, MD at the Mayo Clinic for me. In addition, my Transplant Coordinator contacted the Mayo Clinic, Scottsdale, Arizona and let me know that that she has already started to fax my records there.

I am grateful to Clay Smith, MD and Lindsey McMenimen, RN, my University of Colorado Hospital doctor and Transplant Coordinator for their timely and hard work on my behalf. It helps to have people in your corner!

2nd ASCT - Day 90 - August 16 2012

Up at O'DARK THIRTY (4:15 am) getting ready for my trip to my chemo and doctor's appointment at St. Luke's MSTI in Twin Falls, Idaho...135 miles each way from Mackay, Idaho.

I have to make lists to remember everything that I need to accomplish before I leave...I attribute this to "chemo brain". The lists work for me in the most part, but not nearly as well as Jani reminders...  

I left just after 5:15 AM and headed out in the dark. I live in mule deer and moose country and I have to be ultra careful and ALERT not to encounter any on the road. For the last 30 miles or so, I drain 2 bottles of water so I wouldn't be dehydrated for the blood draw.

Made it to my appointment for my blood draw at 8 AM on time. Lab technician Anita got my blood on the first poke with a small butterfly needle and I was thankful for that. Technician Matt did my vital signs and weight - I've gained 3 pounds since Tuesday - Dex! My vital signs are terrific with pulse of 68 and 99 % oxygen level. My blood pressure low at 105/68.

I waited for Dr. Padavanija in the exam room for a long time, but RN Heather explained to me that they were WAITING to hear from Curascript about my Vorinostat approval and RN Sandy was on the phone with Curascript.   I made MORE LISTS for things that I need to accomplish in my life  NOT related to multiple myeloma while I waited.

While I waited Curascript called me and EUREKA, I was approved by my Anthem Insurance for a 14 day supply of vorinostat (Zolinza brand name). I will need to take 400 mg daily for 14 days requiring 56  - 100 mg capsules.

The cost of the drug is $4,664.17 and will be totally covered by my Anthem Insurance with NO COPAY. They cannot deliver the the medication to my home in Mackay, Idaho until Thursday, 23 August 2012. So, Dr. Padavanija and I decided that it would be best if I waited to start the Zolinza with the beginning of my 2nd Cycle of Velcade/Dex on 4 September 2012. 

As usual, Dr. Padavanija  spent a lot of time with me and listens to my concerns. My main concern is trying to schedule my appointments within the 10-11 AM time frame which will make the 5 hour roundtrip mostly in the daylight. 

My CBC was good today. WBC 5.1 ( norms 4.5-11); Hg 12.9 (norms 12-15); and Platelets 290 (norms 140-440). So, the Velcade/Dex has not caused my lab values to trend downward which is excellent.

After the appointment, RN Heather took me back to the Infusion Area for my subcutaneous Velcade injection. RN Brittany greeted me and let me know that the Pharmacist was assisting another patient, but I'd be next. I really liked the communication. It is cold in the Infusion Area and even though I have SOME hair now, I use the hoodie on my sweat shirt to stay comfortable.

The Velcade was ready quickly and given...so, I was on my way to TACO BELL! Today is Day 90 and I can finally eat out CAREFULLY. I got a chicken burrito supreme and enjoyed every bite of it!

On the way back to Mackay, the air quality worsened and I couldn't even see the mountains in our Big Lost River Valley from Darlington (18 miles south of Mackay). And the mountains are over 11,000 feet high! We now have 2 forest fires blazing about 66 miles north of Mackay and our AIR QUALITY is NOT GOOD. I'm wearing the N-95 mask all the time when I'm outside and I'm mostly staying inside. 

Paco and Jeff watched Kemmer while I was gone and Jeff brought her home in the MackayTownCar.

Around 5:30 PM, the air quality looked a tad better, so I walked Kemmer to the Big Lost River Smelter Bridge and Hill of Dreams (1.38 miles roundtrip).

Big Lost River Smelter Bridge with Louis Rukavina Access.

Anthem Medical Insurance Calls September 12 2011

My health insurance case manager, Carrie, called this afternoon to inform me that I have been approved for a second (known as a tandem) stem cell transplant if one is warranted after I am evaluated with a bone marrow biopsy on Day 60 of this first stem cell transplant I'm hospitalized for now.