High-Risk-Relapsed Update - April 13 2013

Up this morning with my continued left-sided headache and neck ache, but it is more intense than it has been all week - probably because we are having snow, wind, and rain here in Mackay, Idaho now. 

I had to take 1/2 pain pill for the pain and have spent most of my time on the sofa watching the Tiger Woods controversy at the Masters Tournament - he probably wishes he could have the other half of my pain pill!

I emailed Clay Smith, MD, University of Colorado Hospital with my recent issues and he responded directly back. He is in agreement to hold the pomalidomide for now. I will be seeing Dr. Smith in Aurora, Colorado on 16 Apr 2013 to figure out what he referred to as "my complicated case". 

The Myeloma Beacon had an interesting article about pomalidomide (pomalyst) and its performance with high-risk-relapsed myeloma like I have. Here is the link if anyone is interested:

http://www.myelomabeacon.com/news/2013/04/10/pomalyst-low-dose-dexamethasone-high-risk-relapsed-myeloma-imw-2013/

I'm coming off the 40 mg of weekly dex today. I took 10 mg daily for 4 days. I hope today, Sunday and Monday go okay before I start again with 10 mg on Tuesday. I'm really fat from steroids (dex) and maybe a little more emotionally liable - but, not bad. However, my appetite is out-of-control - tying to eat just protein.

I'm still a tad short of breath with walking around the house today. I had cramps in my feet and left calf during the night. My resting pulse is about 82 and if I stand up, it instantly goes to 94, but my oxygen level is great at 96.

The floater deal in my right eye continues to float in to my visual field and sometimes shakes.

My 13-year old Christmas cactus is blooming this morning - well, at least one bloom is blooming. Thanks Jim and Irene!

Bone Marrow Biopsy Results and MORE - February 27 2013

Drove to Twin Falls, Idaho in very cold Minus 2 temperatures, which gradually warmed up as I left the Big Lost River Valley and approached the Magic Valley.

Highway 93 to Carey, Idaho. Look in the middle and you'll see an avalanche chute.

I delivered my 24 hour urine collected from 26-27 Feb 2013 kept in a cooler with ice to the St. Luke's Hospital Lab. 

My appointments at St. Luke's Hospital, Twin Falls was all mixed up and they didn't have me down for a lab draw prior to my doctor's appointment and no Infusion Room appointment. So, I waited while very nice receptionist Pamela got it figured out for me.

My hair is growing again and I actually have bangs!...me and Michelle Obama!  However, my hair is WILD and won't do anything I try to do with it. I had to shave my legs for the first time this morning for a very little stubble.

They finally drew my blood from my Bard Power Port and and waited while the results were done. Dr. Padavanija came in and told me my 10th bone marrow biopsy results "weren't good". 

Evidently, I have been looking at the apples to oranges vs apples to apples on my previous bone marrow biopsy results. When I reported that my plasma cell percentage in my bone marrow was 60 percent on 16 Oct 2012 and then down to 40 percent on 20 Dec 2012, I was reporting TWO DIFFERENT methods - flow cytometry for plasma cells and a manual count of plasma cells from the slides. Evidently, the manual count for plasma cells is the most accurate. You'd think I know this before the 10th Bone Marrow Biopsy!!!

On 16 Oct 2012, the flow cytometry was 27 % plasma cells and the manual count was 60 %.
On 20 Dec 2012, the flow cytometry was 40 % plasma cells and the manual count was not done. Dr. Padavanija sent Pathology a request to do it today, and the manual count was 50 %.
On 20 Feb 2013, the flow cytometry was 26 % plasma cells and the manual count was 64 %.

On the cytogenetics report, I have two lines of abnormalities with a final note indicating, "This result is indicative of persistent disease. The findings of abnormal metaphases in a patient with myeloma is also an indicator for increased cell proliferation, which has been shown to be predicative for shorter event-free and overall survival (Haematologica, 96(1): 87'11). Clinical correlation is required."

My peripheral blood on 20 Feb 2013 was summarized as:
1. Moderate anemia with slight macrocytosis (oxygen carrying ability and energy)
2. Severe leukopenia/neutropenia (ability to fight infection)
3. Moderate thrombocytopenia (ability clot blood)

SPEP Blood Values from 20 Feb 2013:

My M-Spike was sligthtly down to 0.3 (20 Feb 2013) from 0.4 (22 Jan 2013 and 20 Dec 
2012).
M-Spike Hx since 2nd ASCT (autologous stem cell transplant):
20 Feb 2013      0.3 (Idaho)
22 Jan 2013      0.4 (UCH)
20 Dec 2012     0.4 (Idaho)
27 Nov 2012     0..5 (Idaho)
20 Nov 2012     0.5 (Mayo Scottsdale)
16 Oct 2012      0.3 (UCH)
2 Oct 2012        0.4 (Idaho)
4 Sep 2012       0.3 (Idaho)
13 Aug 2012     0.1 (Idaho)
8 Aug 2012      <0.1 (Idaho)
18 May 2012     2nd ASCT (UCH)

My M-Spike history is not very valuable since I am a non-secretory myeloma patient where the bone marrow values are more valuable than the blood values.

Total Protein: normal at 6.3 (norms 6-8.2)

IgG low at 556 (norms 700-1600)
IgA low at <13 (norms 70-400)
IgM low at <8 (norms 40-230)

Lamba Qnt FLC results BELOW reportable range of 1.9 (norms 5.7-26.3)
Kappa Qnt FLC 3.64 (norms 3.3-19.4)
Kappa/Lamba FLCR Unable to calculate ratio since values below reportable range.

Dr. Padavanija called Clay Smith, MD at the University of Colorado while I waited today, 27 Feb 2013 and they decided my bone marrow biopsy results mean I have failed on carfilzomib/dex/revlimid with a couple of cytoxan doses. I will discontinue carfilzomib/revlimid/ and cytoxan today. 

They will attempt to get approval to put me on pomalidomide (Pomalyst) 21 out of 28 days and Dex 40 mg (Days 1, 8, 15, 22. The approval of the pomalidomide may take weeks, but they wanted me to start the Dex 40 mg today. I asked if I should continue Revlimid 10 mg until the decision is made on the pomalidomide and Dr. Padavanija said no. So, I will continue off chemotherapy for another week or 2. Hopefully, my lab values will have time to recover during this time. 

The good news is that pomalidomide (Pomalyst) is a pill taken daily at home and I will not have to go to St. Luke's Hospital two days a week with a motel stay like I have been doing for carfilzomib chemotherapy. I will have to week blood tests once I start pomalidomide.

The Myeloma Beacon had an article about a French study on polalidomide today [French Study Provides Further Insights Into Pomalyst’s Efficacy, Safety, And Dosing
[ by Virginia Li | Feb 27, 2013 4:47 pm |] which was interesting. Click here to go to article:
http://www.myelomabeacon.com

Today's lab values:
White blood cells (WBC) continue low at 2.1 (norms 4.5-11); Absolute neutrophil count (ANC) continues low at 1.25 (norms 1.9-8.8); hemoglobin continues low at 9.8 (norms 12-16); and platelets continue low at 128 (norms 140-440).
My LDH was up at 633 (norms 313-619), a gross indicator of inflammation and rapid cell growth.

My kidney function blood test showed an increase in creatinine again to 1.11 (norms 0.52-1.04).

I received my monthly bone building medicine, Aredia 30 mg intravenously. I took over-the-counter Claritin and 500 mg of Tylenol to decrease the headache, body aches, and flu like symptoms of Aredia. 

I received the  40 mg of dex intravenously today since my stomach has been so upset. Dr. Padavanija said the IV Dex would also upset my stomach. She gave me a prescription for Carafate 1 GM/10 ml Suspension to be taken 4x per day which will be hard for me since it has to be taken on an empty stomach not within eating for 1 hour before or 2 hours after eating and not within 30 minutes of taking any antacids...we'll see how I do...because I'm a snacker.

They were able to schedule the MRI of my hip and pelvis for tomorrow morning, 28 Feb 2013, so I kept my motel reservation for tonight, 27 Feb 2013 even though I didn't get any chemotherapy today and I won't get any tomorrow. 

I also got a new prescription for oxycodone 5 mg immediate release tabs to replace my use of Tylenol and Percocet (which has Tylenol in it). They are very small pills, but I think I can cut them in half for a 2.5 mg dose.

Happily went to Taco Bell for dinner!  :) That part of my life GOOD!

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!

2nd ASCT - Day 108 - Zolinza (Vorinostat) - September 4 2012

I started Zolina (Vorinostat) 400 mg by mouth today at 12:30 PM. I took it with 10 mg of dexamethasone and a peanut butter and jelly sandwich. Then I got the subcutaneous Velcade in my left arm.

By 6 PM, I had an all-over type headache. I took 500 mg of Tylenol without any relief and then 1/2 Percocet at 7:30 PM. That helped a tad, but I still had the headache. Tried to drink tons of fluids since I came home from Twin Falls today.

The left side of my back at the waist hurts - but, that might be related to moving a pile of wood TWICE yesterday.

I also notice that my taste my be alittle off this evening too. Sure hope the Zolinza side effects aren't too bad since I have to take it every day for 14 days and then 14 days off!

2nd ASCT - Day 104 - August 30 2012

This root canal business is not for the faint of heart. Slept maybe an hour last night due to the PAIN. Took Percocet, Advil, and used an ice bag on my jaw. Not only does the root canal tooth (#18) HURT, all 3 teeth in front of it hurt too!I feel like I've been punched in the jaw or what I think being PUNCHED IN THE JAW would feel like - since, I've never experienced that... I finally took 8 mg of dexamethasone in an attempt to reduce the swelling.

 Looking a tad drugged...and I have a swollen gland under my left jaw line. I continue on the Augmentin 875/125 twice daily.

Paco is doing great after his arterial stent placement on Tuesday. He is not yet driving, but I'm sure he will tomorrow. I got up at o'dark thirty and ahalf and went to Sammy's for his coffee and doughnut which I delivered to his house.

The UPS guy came today for my damaged package from Danny and Michelle Quinn. It was a fabulous walking stick that came in 2 pieces...The UPS Claim Guy asked me if I thought it could be repaired - he obviously never used a walking stick...Hopefully, it can be replaced by UPS.

2nd ASCT - Day 103 - August 29 2012

Paco seems fine this morning and I took him home at o'dark thirty (his choice).

I drove 100 miles to Endodontics office in Idaho Falls for my root canal on tooth #18. The novocaine worked well and the procedure took less than 40 minutes. The novacaine made me shaky and I could feel my heart in my chest.

Douglas Sutton DDS, Endodonist who grew up on a dairy farm...he likes teeth more than cows!

Bart noted there was active infection in the root canals of my tooth #18 - he even cleaned it out with clorox at one point.

I'll need to go back to Dr. Tom McGowan within 1 month to have a permanent filling put in the top of the crown that Bart Morrison had to drill through today...and yes, that's a root canal on the the tooth on the left too - today's root canal is the tooth on the right!

Drove home and my mouth was still very numb. HOWEVER, IT WOKE UP and I have so much PAIN - thankfully, I have both Advil and Percocet...putting ice on my jaw tonight. Hopefully, the pain will abate by morning. I talked to my transplant coordinator at the University of Colorado Hospital and Lindsey McMenimen asked the pharmacist there about my antibiotic coverage for this root canal - Augumentin 875/125 is adequate and I continue to take it twice a day.