Relapsed High-Risk Myeloma Update with CT of Sinuses - April 23 2013

On the road to St. Luke's Hospital, Twin Falls, Idaho at 7 AM - the sun just peeking over Pass Creek. Cold morning with just 24 degrees.

Two antelope crossed in front of me on Highway 93 near the Craters of the Moon.

My lab values were all improved except for my platelets.

White blood cells up, but still low at 2.7 (norms 4.5-11); ANC (absolute neutrophil count) up, but still low at 1.54 (norms 1.9-8.8); hemoglobin up, but still low at 10.6 (norms 12-16); platelets miserable at 38 (norms 140-440); and LDH high at 1516, up from 913 when last tested at St. Luke's (norms 313-618). I haven't been on my chemotherapy since 10 Apr 2013.

I'm still in mild kidney failure with creatinine high at 1.17 (norms 0.52-1.04); BUN high at 20 (norms 7-17); and GFR low at 50 (norms greater than 60). Plus, my total protein was slightly up for the first time to 8.4 (norms 6.3-8.20). 

I had my clinic visit with Dr. Padavanija and RN Kenadi and we decided I would take 10 mg Dex every other day and see how I do with the "ups and downs". I am emotional liable.

I complained of sinus pain especially on the left side over my eye with neck pain. Dr. Padavanija ordered a CT without contrast of my sinuses and they were able to squeeze me right in this afternoon. Results revealed that I have blockage (maybe a tumor of some kind).

I faxed Dr. Padavanija my last sinus surgery report and pathology report from 4 May 2007. I had something very similar in 2007 that was operated on by Dr. Mark Loury in Ft. Collins, Colorado. She wants to refer me to an ENT, but my platelets are too low for any type of intervention - so, we will wait until 9 May 2013 and re-evaluate my platelets.

Back to the infusion center for my monthly 30 mg Aredia intravenously. I took Claritin 10 mg and 500 mg Tylenol to decrease the aches and pain associated with Aredia.

On the road home to Mackay by 2:30 PM - arriving at 5 PM because I was behind the Butte School Bus and had to make many stops. Clark delivered Kemmer and I had an almost 3 hour long nadir.

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.

Summary February 1 to February 5 2013

Feb 1 2013 (Friday): Walked Kemmer 0.82 miles.

Saw a not so lucky porcupine along side the road. They are really cute animals.

Feb 2 2013 (Saturday): Walked Kemmer 1.32 miles to the Big Lost River Smelter Bridge. I had upper back pain across my scapula especially on the right side, so I took ½ Percocet, which really helped. I haven’t taken any Percocet since 20 Dec 2012 when I needed it for my post- Bard Power Port placement. Plain Tylenol has been helping adequately with my leg and back pains. I decided to hold my Fragmin injection, which probably wasn’t a good idea. I took ½ Imodium because I am back on Revlimid 10 mg (Day 4/21) and it always gives me diarrhea.

Feb 3 2013 (Sunday): Walked Kemmer 0.82 miles. 

I took ½ Percocet twice for leg pain and “creepy legs”. Started back on the Fragmin 15,000 units injection. I can take 10 mg of dex on Sunday’s and I decided not to take it since I was able to maintain my walking schedule. I had a little bit of chest pain, especially on the left side, which I attributed to stomach acid. I took Pepcid and felt better even though I take Zantac and Prilosec twice daily on a regular basis. My stomach is ALWAYS a bit upset.

Feb 4 2013 (Monday): Didn’t walk Kemmer today because I used all of my available energy to help at the Mackay Food Bank – filling boxes. I wore gloves and mask the whole time – but, I kept up with everyone. I can't believe they haven't fired me since I've missed so many months.

I decided to take just 7,500 units of Fragmin today since my abdomen is one bigger bruise than it usually is from the injections. I took ½ Percocet twice again in the 24 hours for leg tightness, but I’m sure I do not need it.

Feb 5 2013 (Tuesday): Decided not to take any more Percocet for the time being. I walked Kemmer 0.82 miles. 

Stopped to talk to my neighbor who is here to ice fish on the Mackay Dam…always enjoy our visits.

Used my available energy to vacuum part of the house after a friend carried my inversion table upstairs to get it out of the way. Spent a fair amount of time one-with-my-sofa. In fact, my sofa is a big part of my life every day!

Cycle 4 Week 1 Day 1 Carfilzomib/Dex and Day 1/21 Revlimid 10 mg - January 30 2013

Drove to St. Luke's Hospital in Twin Falls, Idaho this morning for my monthly visit with Dr. Padavanija and the beginning of Cycle 4 Carfilzomib/Dex. Roads were dry and the 135 mile drive pleasant.

Waiting for my appointment at St. Luke's Hospital January 30 2013.

Dr. Padavanija had just talked with Dr. Clay Smith at UCH (Aurora, Colorado) via telephone, so we were all on the same page.

Remember, during my last Cycle 3, we HELD carfilzomib (27 metered square) and cytoxin (500 mg) for low counts, so I have not had any chemo since 9 Jan 2013. However, I continued to take Cycle 3 Revlimid 10 mg finishing 22 Jan 2013.

History of Carfilzomib/Dex/Cytoxan/Revlimid USE (Each Cycle consists of 3 weeks (2 times per wk) followed by a rest week).

Cycle 1: Start 10 Oct 2012 with Revlimid 10 mg (1/21).

Cycle 2: Start 27 Nov 2012 with Revlimid 10 mg (1/21).

Cycle 3: Start 2 Jan 2012 with Revlimid 10 mg (1/21). Added Cytoxan 500 mg. HELD Carfilzomib and Cytoxan Week 3 of Cycle 3 for low counts and continued Revlimid 10 mg

Cycle 4: Start 30 Jan 2013 with Revlimid 10 mg (1/21). HELD Cytoxan until counts recover

My 30 Jan 2012 CBC results: WBC 2.2 (norms 4.5-11) slightly up , ANC 1.44 (norms 1.9-8.8) up , Hg 8.9 (norms 12-16) slightly down, Platelets 141 (norms 140-440) -woohoo normal), LDH 583 (St. Luke's norms 313-618) normal. 

Here is a chart looking at the values overtime.

Since my Hg remains low at 8.9 with an elevated MCV (mean corpuscular volume or the average size of a red blood cell) at 102.5, Dr. Padavanija drew a B12 and thyroid levels. I don't have those results yet. My Chem Panel was normal except of a slightly low Potassium (K at 3.4) and I was advised to eat more banana and potato).

Dr. Padavanija was in a agreement with conscious sedation for my next bone marrow biopsy and has scheduled it for 20 Feb 2013 at St. Luke's Hospital, Twin Falls, Idaho – YEA! At least I never have to look at that torture anymore.

Dr. Padavanija looked at the neck incision for my Bard Power Port which was placed 20 Dec 2013 and a stitch seems to be working itself out.

I also had a skull x-ray of the small hard lesion growing on my forehead and an x-ray of my left hip which hurts only when I lie on that side (results pending).

On to the Infusion Center where I was pleasantly surprised that they had ordered and obtained the un-foam padded Huber needle for my Bard Power Port along with plain tegaderm vs the tegaderm impregnated with white film which my skin reacts to. I've been putting Emla Cream (deadens the area they put this sorta big needle in to) on my port site and it works great for me.

I received my monthly dose of Aredia 30 mg. I remembered to take Claritin and a plain Tylenol with it, so I'm hoping I have few, if any, side effects this month.

Stayed at the motel in Twin Falls and woke in the night with an Aredia headache all over my head. I drank more water and went back to sleep. Returned to St. Luke's Hospital Infusion Center for my 2nd day of carfilzomid/dex. RN Vicki was able to get me in and out in less than an hour, which I am always appreciative of because of the 2 1/2 hour drive home to Mackay.

Was home by noon and went to get Kemmer at Ron's. Stopped at Ivies (grocery store) wearing my mask. I always try to go while the children are still in school to avoid their potential germs.

Came home and walked Kemmer 0.54 miles around the neighborhood. Not much of a walk, but I was tired.

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.