Relapsed High Risk Myeloma - Update July 20 2013

Woke feeling much better, no more leg cramps, no gut acid, no headache and I did sleep some of the night.

Was able to shower, go get the mail and deliver it to my father. My hair is beginning to look more like it did when I was diagnosed May 2011.

Jani's partner, Robbyn Wacker, arrived in a rental car from the Idaho Falls Airport. She flew here from Colorado and is spending the weekend with us.

The forest fire smoke north of us cleared for the afternoon and we sat on the front porch and then returned THICK for the evening and night. We've ordered a replaced filter for my hepa filter and it should arrive Tuesday...non soon enough!

I spent the rest of the day one-with-my-sofa watching golf and finishing up Part 1 of my Gram's History (Hazel Theora Jensen Anderson Lundberg). She was born in Mt. Pleasant, Utah, married in 1911, and relocated to Idaho after that until her death in 1985. She was one of the finest people in the WORLD and well-loved by all.

1st Haircut in 1 Year - March 27 2013

I went bald from chemo in March 2012 and my hair grew VERY SLOWLY over the next year. I had my 1st hair cut 1 year later on 27 March 2013.

Pomalidomide (Pomalyst) Update For Relapse After 5 Doses - March 10 2013

Update on side effects of pomalidomide (Pomalyst) after five (5) 4 mg doses. I take the pomalidomide just before bedtime because it makes me almost instantly tired.

• continued scalp burning
• creepy legs with a fullness feeling in left calf (like it is being blown up with bicycle pump)
• neuropathy of left leg rated 4 on 1-10 scale, especially from back of left knee to left hip
• neuropathy of left foot is mild
• poor sleep attributed to neuropathy
• tiredness, especially in afternoons and evenings
• no diarrhea and no constipation

I have been experimenting with small doses of oxy (1/4 tabs) to relieve the neuropathy and not leave me feeling hung over while awake. The scalp burning might freak me out, but since I know this was only a temporary sign after I started Revlimid (a relative of pomalidomide), I'm fine with it.

My gastritis is GREATLY improved - I'm sure it is caused by dex and not pomalidomide. I take 40 mg of dex by mouth each Tuesday. Almost instantly develop gastritis BURNING PAIN after taking dex and by Friday had very little to no gastritis this week.

Continue nightly Fragmin 15,000 unit injections to thin my blood and prevent blood clots from pomalidomide.

Have been walking Kemmer daily - 0.82 miles on 7 Mar 2013; 1.28 mile on 8 Mar 2013; and 1.28 miles on 9 Mar 2013. My back hurts across my scapula when I walk, but that was happening even before I was officially diagnosed with myeloma.  It is still winter here in Idaho and COLD. My hair is still growing and I think I even need a haircut to even it out.

Able to do laundry, house cleaning, etc. without problems. In addition, I feel like I am clear of thinking of late.

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!

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.

Summary February 8 to February 12 2013

February 8 2013: Couldn't sleep last night and finally got up at 3:15 AM...might as well do something than fret that I cannot sleep. 

My guts are hurting. I took Pepcid on top of Zantac and Prilosec with a little relief. The burning sensation in my stomach with pain that radiates around my chest feels best when my stomach is FULL. 

I noticed today for the first time a little bit of hair in the shower drain - the first hair that I've lost since March 2012! I think this is just normal hair growth and loss.

February 9 2013: Slept much better and have a lot more energy today. Continued gastritis and I took Pepcid again. Worked all day on my medical deductions for my taxes and I'm almost finished.

February 10 2013: Again, slept better and my energy seems good. Revlimid Day 12/21 and diarrhea as usual. Continued gastritis.

The bruise by my Bard Power Port continues BRUISED.

I can take Dex 10 mg on Sunday's, but decided not to - mainly to control my appetite.

I walked Kemmer 1.28 miles. Windy and cold.

Mine Hill from Big Lost River Smelter Bridge Feb 10 2013

New hat from a friend in Alaska. She made it!!!!

February 11 2013: Woke really TIRED this morning. Finished up my taxes and got them in the mail this morning - YEA!

The injection sites on my abdomen have been oozing a little bit of blood (very little), so, I think my platelets must be low. I only gave myself 7,500 units of Fragmin tonight instead of the normal 15,000 units. Called and ordered more Fragmin which will be delivered Friday, 15 Feb 2013.

No walk today because it is just too cold outside.

February 12 2013: 
Bruise continues next to my Bard Power Port, but it starting to change colors in healing.

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.

That Happy Worn Out Look - January 17 2013

My worn out, anemic, steroid look with my wicky hair that won't do anything but this. My hair is not falling out - it is just WILD. Despite "the look" I was able to get most of the house vacuumed today and run errands around town (in a N-95 mask). No nadir (nap) today either. My neighbor, Lew Pence, finished shoveling my driveway snow today - at last I think it was Lew or one of his brothers. They have been ice fishing EVERYDAY.

I also have a small lesion growing on the end of the forehead laceration I got last July 2012. It is firm and non-painful. I noticed it about 3 weeks ago.

You might remember the laceration I received when I fell walking on the Mine Hill 20 July 2012.

I had to wait around at home for the FedEx delivery of my next Revlimid Cycle 4 to begin 30 Jan 2013. The delivery finally came around 12:30 PM and then I was out and about on my errands.