Cycle 4 Week 3 Day 2 Carfilzomib/Dex and Day 16/21 Revlimid 10 mg - February 14 2013

Couldn't sleep at all in the motel overnight because of the Dex 20 mg. Finally, at 2 AM just turned on the lights and worked on my computer until morning. Almost forgot to put my EMLA Cream on my Bard Power Port...I am such a weanie - I think I'm the only patient they have that uses EMLA.

Checked out of the motel and went to Walmart to buy bottled water - Nestle PureLife, which according to Consumer's Reports is one of the few bottled waters that is actually purified using reverse osmosis or distillation and not "just water in a bottle". Because of my non-existent immunoglobulins after  2 failed autologous stem cell transplants and abnormally low ANC (absolute neutrophil count), I am careful to drink only Nestle's PureLife water.

Arrived for my Infusion appointment right on time at 8 AM. Took the nurses some chocolate candy for Valentine's Day. 

RN Brittany was able to access my Bard Power Port and hurried my carfilzomib preparation from pharmacy. I took 4 mg of Dex orally. Was in and out in just over an hour. 

On the road back to Mackay from Twin Falls. Lots of traffic in the opposite direction with 10 hay hauling trucks and a steady stream of cars from Custer (Challis and Mackay) and Butte (Arco) Counties heading to Boise for the High School Girl's Basketball State Tournament today through Saturday. All three high schools qualified for the tournament. Challis and Butte County are in a Bracket ahead of Mackay. The games will be shown FREE on the internet and I plan to watch!

The injured elk was gone and in her place were BIG, temporary signs with orange flags warning of Wild Life Crossing on Highway 93 South and North.

Stopped to visit my father and then went to pick up Kemmer. 35 degrees and clear blue skies - WELCOME HOME. Snow is melting.

Home and one-with-the-sofa for a nice nadir. 

I email Clay Smith, MD (University of Colorado Hospital) and Raphael Fonseca, MD (Mayo-Scottsdale Arizona) each week with a summary of my lab values, chemotherapy received, and basically how I feel. They have been wonderful in responding back to me with their suggestions for my continued care directed by Phatama Padavanija, MD (St. Luke's Hospital, Twin Falls, Idaho). Dr. Smith thinks I definitely need to a MRI of my left hip and pelvis to look for a fracture and/or tumor since it hurts to lay on my left side...wants me to take less Tylenol and start on narcotic in low doses since my liver enzyme is high. He also thinks I should see a gastrointestinal doctor and perhaps have an upper endoscopy to look for an ulcer or other problem in my GI tract since I've had prolonged gastritis. I'll work on getting these scheduled through Dr. Padavanija, however, she is on vacation through 26 Feb 2013. I'm so lucky to have such a good team, especially since I live so remotely in Idaho!

Will start back on Cytoxan at a lesser dosage (300 mg vs 500 mg) for Cycle 5 beginning 27 Feb 2013....my poor hair will never grow. Stick with Revlimid 10 mg for Cycle 5. I'm not excited to take Cytoxan again it really lowered my counts and I was SOOOO TIRED while on it. 

Of course, this might change depending on my next bone marrow biopsy results being done next week under conscious sedation on 20 Feb 2013. My last percentage of plasma cells in my bone marrow biopsy done 20 Dec 2012 was 40%, so, I'm hoping for less than that  this go around. Should have partial results of the bone marrow biopsy by 27 Feb 2013 and the cytogenetics will probably take a bit longer. However, I don't expect any change in the cytogenetics 4:14 and 1q changes since they have been PERSISTENT through the last 9 bone marrow biopsies.

Bone Marrow Biopsy History:

1. 24 May 2011 (Diagnosis at Dr. Moore in Ft. Collins, Colorado; traditional trocar)
2. 20 Aug 2011 (1st at UCH with Glen, NP; traditional trocar)
3. 1 Sept 2011 (Karley, NP, UCH, traditional trocar)
4. 2 Nov 2011  (Karley, NP, UCH, tradition trocar)
5. 9 Mar 2012  (Karley, NP and 1st with OnControl Driver, UCH)
6. 3 May 2012 (Shannon, NP with OnControl Driver, UCH)
7. 12 July 2012 (Trish, NP with OnControl Driver UCH)
8. 17 Oct 2012 (Angela, NP with OnControl Driver UCH)
9. 20 Dec 2012 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
10. 20 Feb 2013 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar

Summary January 23 to January 29 2013

January 23-24 2013: Was bothered with a headache and did do much other than get the mail and work on my medical deductions for my taxes. Increased my water intake for the headache and took plain Tylenol. We have been having HIGH WINDS and freezing temperatures of late, so I couldn't walk Kemmer.

January 25 2013: I've had somewhat more energy today - either that or I JUST WANT TO HAVE MORE ENERGY. I ran the Denver Marathon (26.2 miles in 4 hours 32 minutes) when I was younger and I've always said, being active is more than 90 percent mental and the rest physical - you do what you THINK you'll do. I walked Kemmer today 0.54 miles for the first time in eons. It was bright and sunny - good for my Vitamin D.

January 26 2013: New snow here in Mackay overtime and all clouded over. Looking up Mackay Main Street toward the Lost River Range.

January 27 2013: Walked Kemmer 0.82 miles this afternoon to and from my father's house here in town. We just strolled along, but it was great to be out and about.

January 28 2013: Walked Kemmer to the Big Lost River Smelter Bridge (1.28 miles) this afternoon. She loves this walk. It is great to be a leash-less dog here.

 I continue with my WILD HAIR and tired look. January 28 2013.

January 29 2013: Snowing again in Mackay - still working on those medical deductions for my taxes - could be my lifetime achievement award if I ever get them done. I shoveled snow at my father's house and used the snowblower at my house. It was a good workout for me and had a nice nadir afterwards. Looking up Highway 93 North from Mackay Main Street.

2nd ASCT - Day 121 - September 16 2012

Was exhausted and slept well. Our forest fire smoke is BACK - ughhhh. I walked Kemmer on the Mine Hill and wore the N-95 mask...had to...look how  bad it is. We need RAIN or SNOW or something to put those fires out!

Kemmer ran ahead as she does and found a dead skunk. She rolled on it several times before I got there. I am SO LUCKY, because it did NOT smell of skunk...just strongly of DEAD ANIMAL.

So, when we got home, I gave Kemmer a bath in the front yard and de-smelled her. 

Except for being thirsty and having a DRY TONGUE (Zolinza side effect), I felt good today and had pretty good energy.

2nd ASCT - Day 117 - September 13 2012

I kept careful track of my fluids today by using Jani's counting bottle tops (I drink Nestle's Pure Life in the 500 ml bottles). In 24 hours, I drank 9 bottles of water or 4,500 ml. That's a lot of water, but I don't think much more than I drink on an average day. 

I am thirsty especially at night and most nights down 2 bottles of water.

My weight at the beginning of the 24 hours was 151 lbs and 149.8 lbs a the end - so, I am not retaining fluids.

My mouth is cotton dry and my sense of taste is extremely altered. I can taste really salty or really sweet things, but not much in between. I'm sure this is Zolinza (vorinostat) side effect. I've been chewing sugarless gum for the dry mouth. I'm trying to decide if I can live with such an altered sense of taste and I think I can - eating for taste has never really been one of the highlights for my life - I eat when I'm hungry and I often eat the wrong things unless I have the right things pre-prepared.

I'm going to keep up the counting bottle tops until my next blood draw on Tuesday 18 Sept 2012 to make sure I'm hydrated when the blood is analyzed to evaluate my increases in creatinine and BUN.