Relapsed High Risk Myeloma - Update June 5 2013

Threw up in the night - no nausea, just a "surprise emesis".  Still no nausea, but my gastritis is back.

Checked out of the motel in Twin Falls and arrived on time for my 8 AM St . Luke's Hospital Day 2 of intravenous Bendamustine. Pharmacist Dave thought it would be best that I went back to intravenously Aloxi for pre-treatment vs. intravenous Kytril, so we did that along with 10 mg of Dex intravenously.

We were at the Infusion Center way too long for a 30 minute Benadmustine infusion and no lab draw today, but I think they are short of nurses right now (maybe for vacation, etc). Oh well, I was patient and didn't let the delay get to me like I can some times do!

I slept almost all the way home in the back of Bart (2006 Honda Pilot) while Jani drove. I'm pretty sure Aloxi makes me tired. We stopped at the Lost Rivers Drug Store in Arco, Idaho to buy a couple of pill strip box organizers - it is the only way I can keep track of my medications and if I've taken then or not.

We stopped at the Chevron to put gas in Bart...always try to keep it filled on the advice of my mother many years ago - if you need to leave Mackay and the Big Lost RIver Valley, it is always good to be prepared with a full tank of gas.

Stopped to say hi to Paco and give him his shopping items from Twin Falls. He took care of 12-year old Kady-the-golden retriever, while Clark and Dianne Parker took are of Kemmer and Zoe. All 3 dogs were exhausted when we got home.

 emmer and Clark surveying a beaver downed tree on Kid's Creek which borders the back of their property.

Jani's after haircut look.

I might try to have my hair cut in Twin Falls the next time we go. It is still VERY CURLY and won't comb in to any style I'm formerly used to.......

Jani got this great photo of the mule deer behind my house tonight. I never tire of seeing the, but they aren't eating "my hay" either.

Bone Marrow Biopsy Number 10 - February 20 2013

Had a better week in regard to my gastritis and energy level. I'm not sure what, if anything, was different other than the intravenous Aloxi I received on the first day of carfilzomib on 13 Feb 2013. Continue to have trouble with everything going SOUTH rapidly, and took 1/2 Imodium on Feb 18 2013 which almost instantly made me TIRED and cloudy-of-mind.

When I have pain, I started taking ¼ tablet of Percocet (5/325) instead of plain Tylenol since my liver enzyme is up. ¼ tablet only contains 81.25 mg of Tylenol (acetaminophen) which is better than the 500 mg I was taking. I do not like taking narcotics – they seem to interfere with my sleep. However, I have to take something for the pain in my left hip.

Was able to walk Kemmer a couple of times. 1.24 miles on Feb 16 2013; 1.37 miles Feb 17 2012, and 0.82 miles on 18 Feb 2013.

Kemmer thanking the Szabo's for her Valentine Card Feb 16 2013

Walk 0.82 miles on 18 Feb 2013.

Held my Fragmin Injection 15,000 units 19 Feb 2013 in preparation for the bone marrow biopsy 20 Feb 2013.

Drove to Twin Falls, Idaho is a driving snow storm in the DARK with Lana. Had trouble finding the road sometimes and didn't see any deer or elk. Arrived just before 8:30 AM and went to the Infusion Area to have my Bard Power Port accessed and my SPEP (M Spike, Free Light Chains, Protein, Immunoglobulins), CBC, and Chem Panel Labs drawn.  

My white blood cell count was low at 1.9 (norms 4.5-11); absolute neutrophil count (ANC) was low at 1.12 (norms 1.9-8.8); hemoglobin low at 10.2 (norms 12-15); and platelets low at 100 (norms140-440). I think all of my values were slightly higher than they REALLY WERE since I was dehydrated from being NPO since midnight (over 8 hours).

LDH was 509 (norms 313-618) and up from my 13 Feb 2013 value of 460.

My creatinine was slightly high at 1.06 (norms 0.52-1.04); my BUN/CR Ratio was slightly low at 9 (norms 10-20); and my GFR was normal at 56 (abnormal >60). Again, I think these values were influenced by being dehydrated from being NPO since midnight (over 8 hours).

From the Cancer Center, we went over to Interventional Radiology for my 10th Bone Marrow Biopsy and my second one with conscious sedation.  Lana went with me to drive me home and it was great - we laughed a lot.

I had the same nurse, RN Mendi, as last December and everything was familiar. This picture was taken before any drugs were given and you can see my "tired look" of late.

Kirk Peterson, MD from pathology and his assistant, April, came and I greeted them. After that I don't remember a thing thanks to conscious sedation with Versed 5 mg and Fentanyl 100 mcg. Dressing over the bone marrow biopsy site on my right iliac crest and I have no pain a the site.

My Bard Power Port always "oozes" a tad after they take the Huber Needle out.

Lana drove me home - it was surreal in that the roads were completely dry and ALL the blizzard snow (3-4 inches) was GONE and DRIED UP as we drove home from 11:30 AM to 2 PM.

Had a long nadir and went to bed at 7 PM. Woke at 10:30 PM with a severe gut ache - took 1/2 Percocet, Zantac, and Senna-S which seemed to help.

Cycle 4 Week 3 Day 1 Carfilzomib/Dex and Day 15/21 Revlimid 10 mg - February 13 2013

Had to leave in the dark this morning from Mackay to get to my St. Luke's Hospital Infusion appointment by 9:20 AM. Just outside Arco on Highway 93 South, a herd of elk (20 or more) had just crossed from north to south. Unfortunately, one female must have have been hit and was unable to get up on the north side of the highway. She was alive and holding her head up - so, sad. I pulled over to call Butte County 911 to let them know she needed to be attended to. They had already received another call on her and were sending the Butte County Deputy Sheriff. I worried about her as I drove on to Twin Falls.

As I drove through the Craters of the Moon National Park and on to Carey, Idaho, I encountered thick fog again. But, it cleared up at Carey (1/2 way to Twin Falls).

Was held up a few minutes in Shoshone, Idaho for the train going through town.

Arrived just in time for my appointment in the Infusion Center. RN Melisa had no trouble accessing my bruised Bard Power Port and drew my lab values. I put EMLA Creme on at home, so it had been on for 2 1/2 hours.

My white blood cell count is up from last week to 2.4 (norms 4.5-11); hemoglobin remained the same as last week at 9.7, but still too low (norms 12-16); platelets okay, but low at 93 (norms 140-440) and my Absolute Neutrophil Count (ANC) is up, but low at 1.52 (norm 1.9-8.8). My LDH was about the same as last week at 460  (norms 313-618).

 

My Chem Panel shows normal kidney function. My one liver enzyme, ALT was up to 56 (norms 9-52), which I attribute to taking ) plain Tylenol every 6 hours for the pains in my left hip, across my back at my scapulae, and creepy legs at night.

I received my carfilzomib (27 metered square dose), dex 20 mg, and some Aloxi. The Aloxi was to see if it would help my gastritis, but Pharmacist Debbie didn't think it would. I was in and out by noon today. Went shopping at the Twin Falls Mall and checked in to the motel at 1:30 PM for a nadir before going later to Taco Bell for dinner. Just as Pharmacist Debbie predicted, the Aloxi did little for my gastritis.

My hair today, 13 Feb 2013...I think those are real bangs now. I was completely bald around 6 March 2012, and this is all the hair growth that I have had since that time.

Day 83 - Maintenance Chemotherapy Administration Month 1 Week 1 December 5 2011

After my blood  values were back, we were escorted to the infusion center. I was weighed and measured for height. My weight has crept up to 151 pounds (but, I did have heavier clothing on since it was only 10 degrees outside) and my height is steady at 5' 2 1/4 ".


We waited in the recliner area for the nurse to hang the Decadron and Normal Saline which was scheduled to run over 15 minutes.

Then, I should have gotten my quick intravenous push Velcade (1.7 mg dose based on 1mg/metered squared), but I asked if they were going to give me Aloxi (long acting intravenous anti-nausea medication) along with my Velcade. That question really delayed things since they do not pre-mediate with ANY anti-nausea medication for Velcade/Decadron. When I was receiving my induction chemotherapy from Dr. Moore at Front Range Cancer Center in Ft. Collins, Colorado, it was their protocol to always give the Aloxi with the Velcade/Decadron, so that is what I was used to.


The nurse explained that my insurance might not pay for the Aloxi, but I told her they paid for it in Ft. Collins. They offered me Kytril (anti-nausea) or Zofran (anti-nausea) and then went on to explain that patients receiving Velcade/Decadron do no need ANY anti-nausea medication. So, I decided to fore go the medications for anti-nausea, but they did send me home with Zofran tablet if I started to feel badly on our long drive back to Greeley, Colorado in rush hour traffic. More later on if my decision to go without anti-nausea medication was good idea or no.

My wonderful caregiver sister had a bit of a melt-down on Day 83. What should have taken 1 1/2 hours took 3 hours and then add the 1.25 hour drive each way and we were pretty much gone all afternoon into the evening. Good thing Jani wasn't wearing a mask like I had to for all that time - or, I think she would have gone ballistic.

Our drive home was a chilly one - temperature dipped to Minus 1, but was mostly 2 above as we drove from Aurora, Colorado to Greeley, Colorado.

CBC with Differential and Comprehensive Metabolic Panel just before Chemotherapy (Velcade, Decadron, Aloxi) Day 3 in Cycle 2 July 11 2011

jm and Jani Malkiewicz at chemo Day 3 in Cycle 2 July 11 2011

Chemotherapy Day 1 Cycle 2 - 1st Day for Cycle 2 of IV Velcade, Decadron, and Aloxi July 5 2011

I put EMLA cream (numbing) on my Bard Power Port one hour before I got chemotherapy.

That EMLA cream is a miracle and I could not feel the Huber Needle insertion at all.

Aloxi Anti-Nausea Medication