Drove to St. Luke’s Hospital MSTI, in Twin Falls. Had my bard power port accessed and my blood drawn and sent to the lab by RN Ann.My white blood cell count is up to 5.1 (norms 4.5-110) and my ANC (Absolute Neutrophil Count is 2.76 (norms 1.9-8.8) to 2…
Just at morning twilight, I saw Maynard’s cow and 2 calves chasing a female moose from the middle of their field behind me toward the river willows. They were really going FAST!Andrea Marinac is watching our pups with her little Koko. Here she is with …
Today would have been my M’s 89th birthday had she lived beyond 9 Jun 2005. She was born 11 July 1942. Here we are pictured on 2 July 2001.Jani and I left for St. Luke’s Hospital MSTI in Twin Falls for my 1st Cycle of intravenous carfilzomib/oral pomal…
Jani and I arranged to have Andrea Marinac come and stay at the house with our 3 dogs and her cute little dog, Koko since we were anticipatingag a 2-day stay in Twin Falls, Idaho with a motel stay to begin Cycle 3 of Bendamustine, Revlimid 5mg/Dex 40 m…
My white blood cell count was 3.7 low, but very good for me (norms 4.5-11); ANC (absolute neutrophil count) 2.71 excellent (norms 1.9-8.8) so no mask needed; hemoglobin 10.9 low, but holding on after 2 units of packed red blood cell transfusions on 14 May 2013 (norms 12-16); and platelets still miserably low at 35 (norms 140-440), however my own bone marrow made 17 platelets!! WhooHOO.
My LDH continues to drop from a high of 1,516 on 23 April 2013 and 855 on 14 May 2013 to 735 today on 21 May 2013. Again, the LDH is a “generalized test of inflammation and perhaps cell growth” and should only be taken with a grain of salt – BUT, I’M TAKING IT! Perhaps, the bendamustine is working some for me!
My Chem Panel was essentially normal with a slightly high BUN at 19 (norms 7-17). So, I don’t have to worry about kidney failure for the time being.
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 excep…
Up at o’dark thirty and drove to St. Luke’s Hospital in Twin Falls, Idaho to have my blood tested and visit with the oncologist. Discussed decreasing the Dex from 40 mg to 30 mg weekly, and Dr. Padavanija is NOT IN FAVOR. All the research on Pomalidomi…
Absolutely NO sleep last night – My gastrointestinal track has just STOPPED all of a sudden and I suffered all night. Took Senna-S and Phillips Tab – hope things start up again SOON.
Took half of my weekly 40 mg Dex for the day with breakfast (20 mg). Will take the second half with dinner since I take my Pomalyst at bedtime.
My GI tract started back up, but, I am still distended in my abdomen.
Update after first 7 days of pomalidomide (Pomalyst) 4 mg. Drove to Lost Rivers Medical Center in Arco, Idaho (30 miles each way) and had my blood drawn to see how my bone marrow is reacting to the new Pomalyst. They had not received my blood draw order from St. Luke’s Hospital in Twin Falls, Idaho and I had to call them to get the order which came quickly, but lacked the LDH which should have been drawn – oh well.
My labs are not much different than before I started the Pomalyst 4 mg. My white blood cell count (WBC) is low at 2.2 (norms 4.5-11 and reflects your ability to fight infection); ANC (absolute neurtrophil count is low at 1.36 (norms 1.9-8.8 and reflects your immune system quality and whether you can be in public with or without a mask); hemoglobin low at 9.2 (norms 12-16 and reflects your oxygen carrying capacity or energy level) and platelets low at 97 (norms 140-440 and reflects your ability to clot your blood). I hope my platelets hang in there throughout the Cycle 1 (21/28 days).
- burning scalp (improving)
- creepy legs (had before I started Pomalyst, but seems worse at night – taking 1/4th to ½ tabs of plain Oxy which helps. Trying to balance dosage so I don’t feel hung over during the day)
- increased neuropathy of left leg especially from knee to groin – was about a 2 (1-10 scale) prior to Pomalyst and now 4. I am attributing my left hip pain to neuropathy now since all of my tests (plain x-rays and MRI were normal).
- tired, especially after taking
- constipation (I forgot to tell her this, I will next week)
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.
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
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:
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).
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 h…