My LDH drawn 14 May may show a ray of hope. The LDH (Lactate Dehydrogenase) is a "generalized blood test" that a lot of stock cannot be put into indicating inflammation or abnormal cell grown or both - my LDH began climbing out of control around 23 April 2013 to 367 on 16 April 2013 to 1516 on 23 April 2013. This was not good. Today, on 14 May 2013 my LDH had fallen to 856 - still higher than normal - but much better than 1516.
Showing posts with label Lactate Dehydrogenase. Show all posts
Showing posts with label Lactate Dehydrogenase. Show all posts
Tuesday, May 14, 2013
Wednesday, April 17, 2013
High-Risk Relapsed Myeloma Update University of Colorado - April 16 2013
Met with Clay Smith, MD right on time. He is always such a good listener. We went over my lab values for today. My LDH is high at 367 (norms 98-192).
My immunoglobulin M is still way too low at <25 (norms 43-279).
My Immunoglobulin G value is sky-high - NOT GOOD at 1247. Looks normal according to the norms of 700-1643), but my cancer is carried on the IgG. My IgG value was 3,422 on 18 Jun 2011 just after my initial diagnosis on 24 May 2011 prior to any treatment.
My immunoglobulin is still way too low at 10 (norms 66-436).My immunoglobulin M is still way too low at <25 (norms 43-279).
My CBC shows white blood cells low at 2.3 (norms 4.5-11); ANC (absolute neutrophil count low at 1.00); hemoglobin low at 8.5 (norms 12-16); platelets very low at 39 (140-440); LDH 367 high.
My Chem Panel shows mild kidney failure with creatinine at 1.28 (norms 0.52-1.04); BUN 18 (norms 7-17); and GFR 53 (norms > 60). My glucose is high at 192 (norms 70-112), but they won't want to intervene until the glucose exceeds 200. I can control the glucose by reducing my sugar intake.
I will have to wait for my SPEP myeloma test results, but since I'm a non-secretory patient, they are not that valuable. Dr. Smith wants me to schedule a bone marrow biopsy with Dr. Padavanija at St. Luke's Hospital in Twin Falls, Idaho as soon as I return to Idaho on 18 April
2013
He thinks my low wbc's, platelets, and hemoglobin are due to either too much pomalidomide suppression and/or my cancer plasma cells are unresponsive to the pomalidomide and growing uncontrolled and squeezing out the the normal bone marrow elements (wbc, platelets, and hemoglobin). Only a bone marrow biopsy will determine this.
For now, we hold the pomolidomide. So, I won't be on any chemo for now. Dr. Smith will also discuss with Dr. Padavanija raising the low threshold of hemoglobin for packed red blood cell transfusion. I'm not sure what hemoglobin value he was thinking of. Typically, they do not transfusion until the hemoglobin is less than 7.0. But, since I am symptomatic with shortness of breath, it merits raising the hemoglobin value for transfusion for me. Will give me more energy - hopefully.
If the pomalidomide is not working, Dr. Smith admitted that I'm in a "tough situation". If this is the case (as determined by bone marrow biopsy), I could look for a clinical trial somewhere that does NOT require total relocation to the trial location and see if they would accept me or I could opt to just stop all treatment. However, Dr. Smith warned that many of the clinical trials have minimum lab value requirements and I might not meet those at this time. He is will to help me with the clinical trial application if I go that way. He will also contact Mayo Clinic-Scottsdale for any suggestions they might have. I told Dr. Smith I didn't think I was ready at this point to stop treatment.
As far as the Dex 40 mg and spreading it out over 4 days goes - this is not optimal, but he said I could do it. Might want to switch to Prednisone in the same dosage taking it every other day. Will discuss with Dr. Padavanija.
Dr. Smith does not want me doing much until my platelets recover to at least 60 - currently at 39. (Norms 140-440). No riding the 4-wheeler.
Dr. Smith did a thorough physical exam and I told him about my left-sided neck and head pain and how it responded to migraine medication, Frovea. He worried it might be due to the low platelets and warned me about Fragmin use with such low platelets.
Discussed the right eye "floater" deal and he also worried that his was due to low platelets and encouraged me to see the ophthalmologist again if it changed at all. It persists as a brownish blotch in the shape of "Africa".
Just before we left, we met Dr. Smith's RN Sare.
All the snowy roads were dry on the way home to Greeley and we made it just before 4 PM...long day. Stopped for take out Chinese Food - yum!
Wednesday, February 27, 2013
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.
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).
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!
Labels:
Aredia,
Bone Marrow Biopsy Results,
Claritin,
Creatinine,
Dexamethasone,
Free Light Chains,
Hair Loss,
Immunoglobulins,
Lactate Dehydrogenase,
M Spike,
Oxycodone,
Percocet,
Pomalidomide,
Total Protein,
Urine Tests
Wednesday, February 13, 2013
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.
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.
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).
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.
Labels:
Absolute Neutrophil Count ANC,
Aloxi,
ALT and AspartateAminotransferase,
Carfilzomib,
CBC,
Creatinine,
Dexamethasone,
EMLA Cream,
Hair Loss,
Hemoglobin,
Lactate Dehydrogenase,
Platelets,
WBC
Friday, February 1, 2013
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.
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.
Labels:
B12,
Bard Power Port,
Carfilzomib,
Claritin,
Cytoxan,
Dexamethasone,
EMLA Cream,
Hemoglobin,
Huber Needle,
Lactate Dehydrogenase,
Platelets,
Revlimid,
Thyroid,
Tylenol,
Walking,
WBC
Tuesday, November 27, 2012
Cycle 2 Week 1 Day 1 Carfilzomib and Dex - November 27 2012
Made to St. Luke's Hospital MSTI in Twin Falls, Idaho without closely encountering any wild life. I did see a big buck mule deer, but he was about 40 yards off the highway. My appointment was at 9:20 AM, so I had to do the first 45 minutes or so in the dark...I am deer-shy after hitting one 30 Oct 2012. At least I have my repair Bart (2006 Honda Pilot) back to drive, as the transmission is "iffy" in Jonah (1999 Honda Passport).
Saw Dr. Padavanija and shared my experiences at the Mayo Clinic, Scottsdale. She had the dictated reports from Dr. Foncesa, but hadn't had time to review them yet. We decided to start back on the Aredia (bone building medication) today; increase the carfilzomib dosage from 20 metered squared and 27 metered square and have my blood checked in Arco, Idaho on Friday to check my platelet count.
We discussed the possibility of getting a port placed in my chest for intravenous access and having a bone marrow biopsy BOTH under conscious sedation, one right after the other in the same room after Cycle 2 of the carfilzomib is completed. It will be scheduled for either 19 Dec 2012 or 20 Dec 2012 giving my bone marrow a period of time to recover after the completion of the 2nd Cycle of carfilzomib is completed on 12 Dec 2012. Jani will be here in Idaho (visiting for Christmas) to take me. They don't have the OnControl Driver, but I figure with conscious sedation, I'll be okay. Otherwise, I would have to drive or fly to the University of Colorado Hospital just for a bone marrow biopsy WITHOUT conscious sedation, but with the OnControl Driver~
Today, they drew my multiple myeloma blood tests including the M-Spike. It was 0.5 at the Mayo Clinic on 20 Nov 2012. Will have to wait a couple of days for results from today.
My white blood cell count was improved today to 4.1 but, a tad low (norms 4.5-11); my hemoglobin improved, but little low at 11.3 (norms 12-16); and my platelets were NORMAL at 155 (norms 140-440). My LDH has increased again to 867 (norms 313-618).
My creatinine was NORMAL today at 0.99 (norms 0.52-1.04) and I was HAPPY about that. My BUN was normal at 17 (norms 7-17) and even my GFR was NORMAL at greater than 60 for the first time!
I was in the infusion area for a long time because the IV took 2 pokes to work and then, the Aredia takes 2 hours to run - I thought about taking a Claritin to ward off the Aredia "flu-like" aches and pains that I sometimes have with the bone building medications. I decided to "wait and see" and then take Claritin if needed.
Followed by intravenous dex, intravenous carfilzomib at 27 metered square dosage (an increase from 20 metered squared). They decided not to give me the liter of extra fluids because my kidney function tests were normal, so I'll drink extra fluids this afternoon and tonight.
However, they did give me a nice free lunch consisting of a sandwich and pudding.
My mind seems somewhat clearer (prior to dex administration) and I'm not very tired for someone who has spent more than 5 hours lounging in a recliner - ha~
Went directly to the pet store and bought Nature's Miracle Skunk Remover for Kemmer who I'm sure rolled on some dead skunk over by Ron's house yesterday while I was at the dentist. I put Skunk OFF on her last night, but it just covers the smell with a TERRIBLE floral scent. She is back at Ron's today and tomorrow until I get home - so, I'll need the real stuff by then.
Drove to the motel and checked in around 3:30 PM. Will return to the Infusion Area tomorrow morning at 7:30 AM to get Day 2 of the carfilzomid/dex.
Saw Dr. Padavanija and shared my experiences at the Mayo Clinic, Scottsdale. She had the dictated reports from Dr. Foncesa, but hadn't had time to review them yet. We decided to start back on the Aredia (bone building medication) today; increase the carfilzomib dosage from 20 metered squared and 27 metered square and have my blood checked in Arco, Idaho on Friday to check my platelet count.
We discussed the possibility of getting a port placed in my chest for intravenous access and having a bone marrow biopsy BOTH under conscious sedation, one right after the other in the same room after Cycle 2 of the carfilzomib is completed. It will be scheduled for either 19 Dec 2012 or 20 Dec 2012 giving my bone marrow a period of time to recover after the completion of the 2nd Cycle of carfilzomib is completed on 12 Dec 2012. Jani will be here in Idaho (visiting for Christmas) to take me. They don't have the OnControl Driver, but I figure with conscious sedation, I'll be okay. Otherwise, I would have to drive or fly to the University of Colorado Hospital just for a bone marrow biopsy WITHOUT conscious sedation, but with the OnControl Driver~
Today, they drew my multiple myeloma blood tests including the M-Spike. It was 0.5 at the Mayo Clinic on 20 Nov 2012. Will have to wait a couple of days for results from today.
My white blood cell count was improved today to 4.1 but, a tad low (norms 4.5-11); my hemoglobin improved, but little low at 11.3 (norms 12-16); and my platelets were NORMAL at 155 (norms 140-440). My LDH has increased again to 867 (norms 313-618).
My creatinine was NORMAL today at 0.99 (norms 0.52-1.04) and I was HAPPY about that. My BUN was normal at 17 (norms 7-17) and even my GFR was NORMAL at greater than 60 for the first time!
I was in the infusion area for a long time because the IV took 2 pokes to work and then, the Aredia takes 2 hours to run - I thought about taking a Claritin to ward off the Aredia "flu-like" aches and pains that I sometimes have with the bone building medications. I decided to "wait and see" and then take Claritin if needed.
Followed by intravenous dex, intravenous carfilzomib at 27 metered square dosage (an increase from 20 metered squared). They decided not to give me the liter of extra fluids because my kidney function tests were normal, so I'll drink extra fluids this afternoon and tonight.
However, they did give me a nice free lunch consisting of a sandwich and pudding.
My mind seems somewhat clearer (prior to dex administration) and I'm not very tired for someone who has spent more than 5 hours lounging in a recliner - ha~
Went directly to the pet store and bought Nature's Miracle Skunk Remover for Kemmer who I'm sure rolled on some dead skunk over by Ron's house yesterday while I was at the dentist. I put Skunk OFF on her last night, but it just covers the smell with a TERRIBLE floral scent. She is back at Ron's today and tomorrow until I get home - so, I'll need the real stuff by then.
Drove to the motel and checked in around 3:30 PM. Will return to the Infusion Area tomorrow morning at 7:30 AM to get Day 2 of the carfilzomid/dex.
Friday, November 23, 2012
Lab Values from 2nd Opinion Mayo Clinic Scottsdale - November 20 2012
My lab values from my 2nd Opinion at the Mayo
Clinic, Scottsdale, Arizona on 20 Nov 2012. All of their norms are slightly
different than at the University of Colorado Hospital and St. Luke’s Hospital,
Twin Falls, Idaho.
My wbc (white blood count) was slightly low at 3 (norms
3.4-10.6); my hemoglobin was low at 10.5 (norms 12-15.5); and platelets were
low, but up to 81 (norms 149-375). Will increase my Fragmin back to 15,000
units daily injection.
My LDH was high at 235 (norms 122-222). However, Dr. Foncesa
told me that the LD values were “too broad” to make conclusions from.
My creatinine was high at 1.3 (norms 0.6-1.1). My BUN (blood
urea nitrogen) was normal at 18.8 (norms 6-21). My GFR was abnormal at 41.6. But,
Dr. Foncesa told me not to worry about these kidney function values.
Now the not so great news.
My M-Spike is 0.5 on 20 Nov 2012 at Mayo Clinic Scottsdale.
It had been 0.3 on 17 Oct 2012 at UCH. Normal is ZERO.
My immunoglobulins are still non-existent - I think, this is to be expected after 2 autologous stem cell transplants (ASCT) - I'm Day 186 since the 2nd ASCT. This means I have no immunity to invaders.
Wednesday, November 14, 2012
Cycle 1 Week 3 Day 2 Carfilzomib and Dex - November 14 2012
Got to love dex! Couldn't sleep at the Quality Inn in Twin Falls and finally at 2 AM, just turned on the lights and worked on my genealogy files at ancestry.com. I'm making good progress on that front! It is better not to fight dex.
Along with decreased urine output last night, I felt bloated and swollen in my gut. As I walked in to my 9 AM appointment at St. Luke's Hospital MSTI, my heart was pounding and I was a tad out of breath which didn't seem to get better as I waited for the invitation to go back to the Infusion Area.
Once back in the Infusion Area, they weighed me and I had gained 4 pounds in 24 hours, my pulse was a sustained 90 something and although I had no swelling in my feet, my face and gut were swollen. RN Letia spoke with Dr. Padavanija and they decided it would be best if I took 20 mg of Lasix (diuretic). She wrote me a prescription for Lasix and cautioned me to take it only sparingly since my kidney function is not totally normal.
They were able to order a LDH on the blood that they drew from me yesterday. Good news, the LDH for 13 Nov 2012 is down to 615 (norms 313-618). It was 639 last week, down from a HIGH of 1,046 the week before.
RN Letia was able to use my IV that was placed yesterday by RN Vicki. I received fluids, followed by the Carfilzomid (Kyprolis) at 20 mg / metered squared dosage, followed by more fluids (a total of 1,000 ml of fluids plus the fluids the medications were in). I took 4 mg of Dex by mouth.
I was able to leave by 11:30 AM. Went to Walmart to pick up my Lasix prescription and headed out of Twin Falls, Idaho for home in Mackay, Idaho at noon.
Tuesday, November 6, 2012
Cycle 1 Week 2 Day 1 Carfilzomib and Dex - November 6 2012
Up in the dark this morning to walk Kemmer before I had to leave at 7:00 AM for my appointment at St. Luke's Hospital MSTI at 7:20 AM. Kemmer waited for me in Jonah. My blood draw went well on the first poke.
I waited and WAITED and WAITED for my appointment with Dr. Padavanija and finally asked the receptionist Pamela if they might have forgotten me - they DID! I wore a mask in the waiting area because there was someone coughing.
So, finally I saw Dr. Padavanija about 40 minutes late. She shared my blood test results. My white count is down to 2.7 (norms 4.5-11), my hemoglobin down to 11.7 (norms 12-15) and my platelets are only 71 (norms 140-440). I'm taking Fragmin 15,000 unit injections to prevent blood clots since I'm on Revlimid 10 mg daily (today is Day 8 of 21). If my platelets drop below 50, then I'm supposed to adjust the Fragmin injection to 7,500 units and if they drop below 30, then HOLD the Fragmin. Dr. Padavanija gave me an order to get my blood checked at Lost Rivers Medical Center in Arco, Idaho on 9 Nov 2012 and they will fax her the results. She also gave me a note that I have multiple myeloma and require Fragmin injections so I can get the pre-filled syringes through airport security when I go to the Mayo Clinic Scottsdale, Arizona during Thanksgiving Week. RN Kenadi is going to help me get prescriptions for Fragmin and Revlimid from Curascript.
The best news on my blood results was the LDH. My LDH has steadily been RISING to 1,046 and today showed a decline to 639 (norms 313-618) after just 2 doses of Carfilzomib. I think this is a very good sign.
6 Nov 2012 LDH 639
30 Oct 2012 LDH 1,046
23 Oct 2012 LDH 993
2 Oct 2012 LDH 710
4 Sept 2012 LDH 661
19 Jun 2012 LDH 590
18 May 2012 2nd Autologous Stem Cell Transplant
Unfortunately, my creatinine (kidney function test) continues high at 1.13 (norms 0.52-1.04). This has been happening ever since I took 2 cycles of Zolinza (vorinostat) 4 Sept 2012 to 15 Oct 2012. I hated that chemo!
Back in the Infusion Room, RN Melisa got my IV started on the first poke in my right forearm. I received my Carfilzomib dose and intravenous dex 20 mg plus 1,000 ml of IV normal saline fluids.
RN Melisa put heparin in my IV, wrapped it up and we'll try to use it again tomorrow for the 2nd part of the Carfilzomib dose.
I was able to leave at 11 AM. Walked Kemmer around a field and then went to Walmart.
Came back to the motel and had an hour and a half nadir (nap).
Then, walked Kemmer 0.96 miles around the Snake River Canyon area. The hotel is just a couple of blocks from the canyon. The leaves are falling here in Twin Falls and everything is very pretty, 71 degrees and no wind.
I waited and WAITED and WAITED for my appointment with Dr. Padavanija and finally asked the receptionist Pamela if they might have forgotten me - they DID! I wore a mask in the waiting area because there was someone coughing.
So, finally I saw Dr. Padavanija about 40 minutes late. She shared my blood test results. My white count is down to 2.7 (norms 4.5-11), my hemoglobin down to 11.7 (norms 12-15) and my platelets are only 71 (norms 140-440). I'm taking Fragmin 15,000 unit injections to prevent blood clots since I'm on Revlimid 10 mg daily (today is Day 8 of 21). If my platelets drop below 50, then I'm supposed to adjust the Fragmin injection to 7,500 units and if they drop below 30, then HOLD the Fragmin. Dr. Padavanija gave me an order to get my blood checked at Lost Rivers Medical Center in Arco, Idaho on 9 Nov 2012 and they will fax her the results. She also gave me a note that I have multiple myeloma and require Fragmin injections so I can get the pre-filled syringes through airport security when I go to the Mayo Clinic Scottsdale, Arizona during Thanksgiving Week. RN Kenadi is going to help me get prescriptions for Fragmin and Revlimid from Curascript.
The best news on my blood results was the LDH. My LDH has steadily been RISING to 1,046 and today showed a decline to 639 (norms 313-618) after just 2 doses of Carfilzomib. I think this is a very good sign.
6 Nov 2012 LDH 639
30 Oct 2012 LDH 1,046
23 Oct 2012 LDH 993
2 Oct 2012 LDH 710
4 Sept 2012 LDH 661
19 Jun 2012 LDH 590
18 May 2012 2nd Autologous Stem Cell Transplant
Unfortunately, my creatinine (kidney function test) continues high at 1.13 (norms 0.52-1.04). This has been happening ever since I took 2 cycles of Zolinza (vorinostat) 4 Sept 2012 to 15 Oct 2012. I hated that chemo!
Back in the Infusion Room, RN Melisa got my IV started on the first poke in my right forearm. I received my Carfilzomib dose and intravenous dex 20 mg plus 1,000 ml of IV normal saline fluids.
RN Melisa put heparin in my IV, wrapped it up and we'll try to use it again tomorrow for the 2nd part of the Carfilzomib dose.
I was able to leave at 11 AM. Walked Kemmer around a field and then went to Walmart.
Came back to the motel and had an hour and a half nadir (nap).
Then, walked Kemmer 0.96 miles around the Snake River Canyon area. The hotel is just a couple of blocks from the canyon. The leaves are falling here in Twin Falls and everything is very pretty, 71 degrees and no wind.
Subscribe to:
Posts (Atom)