Summary 11 January 2013 to 16 January 2013

On 11 Jan 2013, my blood counts were all very low and I HELD my Revlimid 10 mg oral dose and my Fragmin subcutaneous injection dose. I also had a pretty good case of post-shingles pain over my left mid-back area. I took an extra famciclovir (anti-viral) and the pain almost went away. When this shingles pain comes, it is SO TEMPTING to take a pain pill like Percocet, but it is just not necessary if I remember the anti-viral.

Over the weekend 12-13 Jan 2013, I was TIRED and other than doing some laundry, I watched a LOT of football on television. Revlimid speeds my GI Tract up and I end up needing to take Imodium every 3-4 days to keep the crampy diarrhea in check.

My father turned 92 years old on 14 Jan 2013. I went over to his place to wish him a Happy Birthday and did his dishes…not much of a celebration and I felt badly about that. His friends brought him a chocolate birthday cake that afternoon.

My hair is WICKY…won’t go straight and is frizzy at the ends – I’m sure changes from Cytoxan that I had just 2 doses of.

Monday, 15 Jan 2013, continued tired. Would like to go out and walk with Kemmer, but the outside temperature has hovered from MINUS 11 to 10 degrees above for the last week and it just isn’t possible.

Tuesday, 16 Jan 2013, we had another inch of new snow and I was able to shovel the front walk and in front of the garage doors – but, not the driveway. My pulse soared to 125, but came back down to 98 when I sat down.

Today, Wednesday, 16 January 2013, I packed Bart with my stuff for an overnight in Twin Falls, Idaho. My oncologist Dr. Padavanjia faxed an order for blood work to Lost Rivers Medical Center in Arco, Idaho (just 30 miles down the road) for this morning. Then, I was to call the results to see if I needed to proceed on to St. Luke’s Hospital in Twin Falls for my weekly chemo (carfilzomid/dex/Cytoxan).

My white blood cell count was low at 2.2 (norms 4-11.2), hemoglobin was low at 9.1 (norms 12-16); platelet count was at 69 (norms 140-440); and Absolute Neutrophil Count (ANC) low at 1.08 (norms 2-8).

 

All of the values are low, but slightly higher than they were on 11 Jan 2013, so that means they are treading upward in the direction of normal.

I spoke with RN Anne at St. Luke’s Hospital and she spoke with Dr. Padavanija who decided that they would HOLD my chemo for today and tomorrow (Cycle 3, Week 3, Days 1 and 2). I need to continue to take my Revlimid 10 mg tonight and I took 20 mg of dex this morning. Dex has anti-myeloma action in multiple myeloma and it helps with my energy too. Will continue Fragmin (anticoagulant) at:
Platelet Count Greater Than 50 - Take Fragmin 15,000 units
Platelet Count Less Than 50 - Take Fragmin 7,500 units
Platelet Count Less Than 30 - Hold Fragmin and Revlimid

My kidney function blood tests remain normal and I am happy for that.

Late this afternoon, I shoveled parts of my driveway and I’m sure the dex helped with that. And the 11 degree above helped too!

2nd ASCT - Day 130 - September 25 2012

Got up at o'dark thirty and left for Twin Falls, Idaho at 4:45 AM to make my 8:20 AM appointment time with Dr. Padavanija at the St. Luke's Hospital MSTI.  Had to stop once to let a female mule deer cross in front of me just below Mackay. Almost the entire drive was in the dark, so I had to be extra cautious.

Technician Anita drew my blood on a single poke - since I have no central access, I have to have my blood drawn from my arm each week. Anita uses a small butterfly needle and a light tourniquet and has great success reusing one of  2 of veins in the elbow area of my left arm.

My CBC was good. My white blood cell count was 4.9 (norms 4.5-11.0); hemoglobin normal at 12.8 (norms 12-15); and my platelets are recovering from last week at 167 (norms 140-440). Last week my platelets were low at 128.

My comprehensive chem panel is improved this week too. My creatinine is still slightly high at 1.06 (norms 0.52-1.04), but really came down from 1.26 last week. My BUN is normal on the high side at 17 (norms 7-17) - So, these reflections of my kidney function are good this week. The transient increases I've seen were probably due to Zolinza (vorinostat).

I was careful to drink lots of fluids again this week:

9/19/2012   3,400 ml

9/20/2012   3,500 ml

9/21/2012   2,500 ml

9/22/2012   3,000 ml

9/23/2012   3,500 ml

9/24/2012   3,500 ml

9/25/2012   3,500 ml

I waited for Dr. Padavanija, but not too long after technician Mark took my vital signs. My pulse never acts up when I'm at the doctor's office. I was tired.

I had my list ready for Dr. Padavanija.

Notes to Dr. Padavanija  25 Sept 2012 (My Day 130 Post 2^nd ASCT)

1.    Velcade neuropathy in L foot, leg, and fingers is terrible. Experienced as like stepping on a HOT IRON and radiating up the back of my leg behind my knee (STILL waking me at night, necessitating ½ Percocet), with only slight radiation up to my left groin area. I’ve rated the neuropathy 9/18/2012 as 4 and today as a 6-7. Consider decreasing dose of Velcade or skipping a dose. Will try neurontin or some other drug as I cannot sleep at night due to pain.

2.    Continued post-shingles pain R back at lower scapula with no shingle outbreak.

3.    Zolinza Experience (1^st Cycle Completed started 4 Sept 2012 and ended 17 Sept 2012)

·      Improving dry mouth and tongue.

·      Taste improving

·      Sustained tachycardia (90-98) and weakness

·      Leg cramps and charley horses in both legs and feet when stretching in bed

·      Continued fatigue, but still able to do all activities

4.    Creatinine and BUN Concern (Need CHEM PANEL today 25 Sept 2012) See Zolinza (vorinostat) causing “transient increases in Creatinine”'
  Creatinine 4 Sept 2012  1.09 (norms 0.52-1.04)   BUN nl.
  Creatinine 6 Sept 2012  1.26   BUN 19 (norms 7-17)
  Creatinine 11 Sept 2012 1.23  BUN 26
  Creatinine 18 Sept 2012 1.26  BUN 17

Dr. Padavanija and I decided that it would be best to HOLD the subcutaneous Velcade today September 25, 2018 because of my neuropathy complaints. I will take the dexamethasone 10 mg today and tomorrow as scheduled. I hate holding the Velcade because I think I am very responsive to it in the multiple myeloma department, but I cannot live my life with the degree of neuropathy that I'm currently experiencing. 

Dr. Padavanija thought it best that I try a neuropathy medication and we settled on Neurontin 100 mg once a day at night to begin with and gradually increase if it helps. So, I went to Walmart and picked up my prescription of Neuroton - one more pill to take - ugh...but, I'm hoping I can tolerate it because I CANNOT sleep at night due to the neuropathy. 

I will continue to go to Twin Falls every Tuesday to be evaluated and treated. I'm glad I have Dr. Padavanija on my team because she always listens to me and is responsive to my needs.

When I got home from Twin Falls, the air quality was much improved, so I wore my N-95 mask and walked Kemmer on the Mine Hill for 0.51 miles because someone was shooting down the road from us and I decided it was not safe.  Kemmer managed to find the same decaying skunk before I saw her - tried to roll on it - now smelling of SKUNK. I managed to stop Kemmer, but not before he had the smell of SKUNK on her face. When I got home I used Nature's Miracle SKUNK ODOR REMOVER on her face and it worked!

2nd ASCT - Day 82 - August 8 2012

Drove 135 miles to Twin Falls St. Luke's MSTI for my 8:20 AM appointment with Dr. Padavanija. I left at o'dark thirty and kept an alert eye for deer on the road...always a threat in this county. It is a very pretty drive with varied geographic changes including the Craters of the Moon National Park founded in 1928.

Rolling roads and lots of farm land with ranchers cutting and baling hay right now. Little traffic until you get to Shoshone. That last 20 miles to Twin Falls always has a lot of traffic and RARELY going the speed limit...and they aren't speeding!

I arrived in Twin Falls with just enough time to dash in to Walmart for a rolling cart. Jani packed all my things and lunch and I needed a way to maneuver it all in with me. The cart we used in Colorado was Jani's.

Got my blood on the first poke which is always nice since I have no port access anymore. They drew CBC, Chem Panel, and my multiple myeloma markers. The markers have to be sent to Boise, so it will be a next week before I know those results.

My CBC continues good. White blood cell count 4.2 (norms at MSTI 4.5-11); hemoglobin 13.8 (norms 12-15); and platelets 298 (norms 140-440).

My appointment with Dr. Padavanija went well. She always gives me a lot of time. While I was in the exam room with her, she talked to Dr. Han Myint (my transplant doctor at the University of Colorado) to discuss my continuing chemotherapy. Dr. Myint's note July 18 2012.

We are still waiting on the vorinostat approval from my insurance due to a mix up with a fax delivery. I will get Velcade 1mg/squared subcutaneously on Days 1 4, 8, 11 each month. I will take dexamethasone orally 10 mg on Days 1 and 2; Days 4 and 5; Days 8 and 9; and Days 11 and 12 each month.
When the vorinostat is approved, I'll take it orally 14 days and 14 days off. Hopefully, my blood counts won't FALL too much from these agents, but they will monitor them.

I will also start 81 mg of Aspirin orally today.

This chemo schedule will require that I drive to Twin Falls twice a week for 2 weeks and then I'll have 2 weeks free.

After my appointment with Dr. Padavanija, they took me back to the MSTI Infusion Room - which is very large. It seems even larger than it is with a 2 story ceiling and a floor to ceiling bank of windows on the far side. 8 recliners around a central round nursing area is the area I was directed too. 

A volunteer came by with a quilt for me that I get to keep. I'll keep it in Bart and use it each time I come.

Just like UCH, the infusion area is COLD. The nurse wrapped my area in a heating pad prior to her IV attempt. And, the television is too high for comfortable neck viewing.

My veins were NOT cooperative and I had 4 different pokes by 2 nurses before success. I needed an IV for Aredia (bone building) which they run over 2 hours 10 minutes. I took a Claritin tablet to help reduce the bone and muscle pain from Aredia.

The nurses were surprised that I packed my own lunch because they provide lunch for all patients in the infusion area - WOW.

I was able to leave MSTI around 1:15 PM. Went back to Walmart to pick up my dexamethasone prescription and a few things we needed back in Mackay. I took the dose of dexamethasone in the Walmart parking lot since I had just had a sandwich. I arrived home in Mackay just before 4 PM - a very long day, but I held up. My stomach was already upset form the dex and I took more Zantac which helped.

My brother, Jeff, arrives tomorrow night for a visit and Jani is scheduled to DEPART for her home in Colorado on Monday...oh, how I hate to realize that!

2nd ASCT - Day 46 - July 3 2012

Jani drove me to Twin Falls, Idaho MSTI today for my blood draw and appointment with Dr. Phatama Padavanija. My blood values continue to be excellent. My white blood cell count is 3.6 (norms 4.5-11); hemoglobin 12.5 (norms 12-15); and platelets 307 (norms 140-440). My only new complaint is my sinuses and I started Augmentin the evening of July 2 2012.

My comprehensive metabolic panel is all normal except for a VERY slightly high chloride at 108 (norms 98-107).

2nd ASCT - Day 32 - June 19 2012

Jani drove me to Twin Falls, Idaho to the Magic Valley St. Luke's Hospital Mountain States Tumor Institute (MSTI) for my 1st appointment with my new oncologist, Phatama Padavanija, MD. Twin Falls is 135 miles from Mackay, but an easy drive with little traffic - IN FACT, Jani said we drove 72 miles before we even saw another car traveling in our direction! 


MSTI is a brand new facility having opened just about a year ago.

Dr. Phatama Padavanija, MD aka Dr. P spent a lot of time with Jani and I. UCH (University of Colorado Hospital) had sent her a pile of my records over an inch high. Dr. P seems very in tune with UCH's requests for my care and very willing to share the results with UCH and ME! MSTI does not have a system for sharing lab values with patients, but said they could FAX them to me. I had to have my labs drawn from my arm since I have no central line now, but the lab technician was EXCELLENT and had no trouble getting my blood on the FIRST POKE!


They drew my SPEP (with M-Spike), Immunoglobulins, and Free Light Chains - these tests must be sent to St. Luke's in Boise and I won't have the results for several days.


My CBC continues GREAT. My white blood cell count normal at 4.5 (norms at MSTI 4.5-11); platelets normal at 298 (MSTI norms 140-440); and hemoglobin normal at 13.2 (MSTI norms 12-15). So, I couldn't be happier about this!

My comprehensive metabolic panel had a couple of issues. My creatinine which has always been normal was high today at 1.13 (norms 0.52-1.04). This is a reflection of ones kidney function and mine may have been abnormal because I didn't drink enough today with all the traveling. My phosphorus was high at 6.0 (norms 2.5-4.5) and I don't know why except I ate several TUMS before the blood draw.

My liver enzyme tests were also too high - AST 41 (norms 14-36) and ALT 64 (norms 9-52). I'm going to work on getting better hydrated. My stomach continues to bother me, but eating helps. I'm going to strive to eat a small portion of protein every 3 hours. I didn't have a sinus headache today.

 The bathroom sinks at MSTI are so tiny....

I slept most of the way home to Mackay from Twin Falls in the back of Bart while Jani drove. We didn't get home until around 7:45 PM - a VERY LONG DAY.

April 20 2012

Chuck Henderson drove me to my blood draw appointment at UCH this morning. My blood values are good and have not begun to travel downward as is expected after the 2nd Cycle of VD-PACE. Chuck and I were back in Greeley at 11 AM.
My white blood cell count remains higher than it has ever been at 7.5 (norms 4-11.1); my platelets adequate but low at 99 (norms 150-400); and my hemoglobin is low, but great at 11.1 (12.1-16.3).

On the peripheral smear, I have "sperocytes" and "tear drop cells" whatever those are.

Comprehensive metabolic panel is all normal including my protein and albumin levels which indicate my diet is adequate.

Lab Results UCH Inpatient - April 13 2012

My white blood cell count is up to 2.9 (norms 4-11.1); my platelets are 134 (norms 150-400); and my hemoglobin is down a tad to 10.8 (12.1-16.3). I discovered that I was only taking 12,500 units of Fragmin at home the last 2 days when I should have been taking 15,000 units - but, I didn't have any of those.

My ANC (absolute neutrophil count) is better at 2.0 (norms 1.8-6.6).

The drew my immunoglobulins A, M, and G again. My Immunoglobulin G is down a tad to 600 (norms 791-1643), but again, I'm not really sure how to interpret these values.

My uric acid is up to 6.1 (norms 2.6-8.7), but still a rise for me.

My LDH is up to 176 (norms 98-192), and I'm pretty sure this is not a good sign.

My phosphorus is higher than the norms at 5.6 (norms 2.7-4.5).

My magnesium is low at 1.6 (norms 1.3-2.1) and here in the hospital they give you magnesium replacement units when it is this low and I received to replacement units April 13 2012.

My comprehensive metabolic panel is all normal except form my creatinine (a measure of kidney function) which is 1.63 (norms 0.40- 1.20). This is the first time I've ever had an abnormal creatinine vale and is somewhat worrisome to me.

My urinalysis was normal.

They ran another Congestive Heart Failure BNP blood test and it remains normal at 23 (norms 0-100).

My serum protein is normal at 6.4 (norms 6.4-8.3).

Lab Results - April 9 2012

Drove myself to UCH this morning for my labs. 

All are okay and I did not need any platelets or blood transfusions today. I was in and out in less than hour in the BIC thanks to RN Kristin, RN Brooke, and RN Erin.

My white blood cells are higher than they have been, yet still low, at 2.4 (norms 4-11.1); my platelets are also higher, yet still low, at 76 (norms 150-400); and my hemoglobin is lower at 10.8 (norms 12.1-16.3).

My Absolute Neutrophil Count (ANC) is quite good, yet still low, at 1.5 (norms 1.8-6.6).

 My Comprehensive Metabolic Panel is all normal.

My LDH is increased to 151 (norms 98-192) and I'm not sure if that is okay that is creeping up again.

 My Magnesium is normal at 1.6 (norms 1.3-2.1)

 My phosphorus is normal at 4.2 (norms 2.7-4.5).

 My uric acid is normal at 5.3 (norms 2.6-8.7).