Relapsed High Risk Myeloma - Update August 15 2013

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 2.26. This is very good news because it means I can have my tandem chemo of intravenous carfilzomib/oral pomalyst/oral Dex 10 mg every other day beginning Cycle 2 today.

My hemoglobin is 8.3 today, and my threshold for packed red blood cell transfusion is 9.0., so I will be getting one unit of blood today. My platelets are only sitting at 7 today (norms 140-440). So, I will be getting one unit of platelets today too.

My LDH continues to climb at 2440 (norms 313-618) from 2206 last week (8 Aug 2013). Remember, last week, I did not receive any chemo because my ANC was just 0.8 and the threshold for chemo is 1.0 or higher.

My Chem Panel was out of range this morning - especially my blood glucose level at 592 (norms 60-950). I've noticed that my eyesight is a tad blurry this morning.  They gave me 10 units of insulin sub-cutaneous insulin and rechecked my blood glucose.

So,  now I  am a TYPE 1 DIABETIC - oh Joy~

My repeat blood glucose was just 576 and I received an additional 10 units of insulin at 3 pm, so Dr. Padavanjia is going to hospitalize me tonight at St. Luke's Hospital in Twin Falls and get my blood sugar back under control by tomorrow morning. We are going to lower my every other day dex dose to 6 mg instead 10 mg every other day.


Glucose Readings - 15 Aug 2013
Thurs, 15 Aug 2013 AM - Blood Glucose: 592 - 10 units regular insulin 
Thurs 15 Aug 2013 PM - Blood Glucose: 576 - 10 units regular insulin
Thursday 15 Aug Blood Glucose: (inpatient check 7 pm 473) 4 hundred something - to get 2 types of insulin
Thursday 15 Aug Blood Glucose: (inpatient check 9 pm 211)

My creatinine was normal at 0.9 (norms 0.52-1.04); BUN high at 29 (norms 7-17); and my GFR normal at greater than 60.

My M-Spike was 1.8 (norm zero) from 1.2 (norm zero) on 2 July 2013.

My IgG is high 2406 (norms 700-1600)
IgA  <13  (norms 70-400)
IgM 9  (norms 40-230) 
My IgG was at 1765 on 4 June 2013.  Remember, my cancer is carried on the IgG.

Beginning Friday, 16 August 2013, we will reduce the Pomalyst from 4 mg to 2 mg.  

History of All Platelet Transfusions Since Diagnosis May 24 2011

1. Platelet Transfusion March 24 2012 (UCH- University of Colorado)
2. Platelet Transfusion March 27 2012 (UCH)
3. Platelet Transfusion March 29 2012 (UCH)
4. Platelet Transfusion March 31 2012 (UCH)
5. Platelet Transfusion May 20 2012 (UCH)
6. Platelet Transfusion May 22 2012 (UCH)
7. Platelet Transfusion May 10 2013 (St. Luke's Hospital)
8. Platelet Transfusion Jul 12 2013 (St. Luke's Hospital)
9. Platelet Transfusion Jul 23 2013 (St. Luke's Hospital)
10. Platelet Transfusion Aug 15 2013 (St. Luke's Hospital (inpatient)

History of All Blood Transfusions Since Diagnosis May 24 2011

1. Aug 15 2013 (1 unit)
2. Aug 2 2013 (1 unit)
3. Jun 26 2013 (2 units)
4. Jun 11 2013 (1 unit)
5. May 14 2013 (2 units)
6. May 7 2013
7. Apr 19 2013
8. Apr 10 2013
9. May 16 2012 (2 units)
10. April 2 2012  (2 units)
11. Sept 22 2011 (2 units)

Left St. Luke's MSTI after my blood transfusion and platelet transfusion to be admitted to their Medical Unit 3232. Developed a headache and a SEVERE SORE THROAT. They gave me throat lozenges and that helped, but I was still having BAD PAIN even trying to swallow m own saliva.

My experience in-patient was not fun. I didn't have any food because no one was sure I could have food with "my new diabetes", but they were checking my blood sugar and and giving me insulin (14 units of Lantus); and various amounts of NovoLog (short acting insulin). Finally  managed to get them to give me a pail pill around midnight.

Relapsed High Risk Myeloma - Update July 11 2013

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 pomalidomide 4 mg tandem chemotherapy along with 10 mg of Dex every other day.

It was cold in the examination room while we waited for Dr. Padavanija and they issued both Jani and I a blanket.

My lab values for today prior to my 1st dose of intravenous carfilzomib: white blood cell count normal at 5.8 (norms 4.5-11); ANC (absolute neutrophil count) normal at 3.38 (norms 1.9-8.8); hemoglobin low at 8.5 (norms 12-16); and platelets low at 17 (norms 140-440).

My platelets are so LOW, they are now not really compatible with life. Dr. Padavanija, Jani, and I discussed my bone marrow biopsy results for the biopsy done on 26 April 2013.  

The pathologist reported 100% plasma cells in the bone marrow which appear to be "squeezing out" ANY ABILITY of my own bone marrow to make any cellular elements including white blood cells, hemoglobin, and platelets.

We decided to give me 2 units of packed red blood cells this afternoon along with the intravenous carfilzomib and intravenous kytril (for nausea).

My chem panel results are off too. Although, my creatinine is normal at 1.00 (norms 0.52-1.04), my BUN is high at 22 (norms 7-17), and my BUN/R Ratio is high at 22 ( norms 10-20). My GFR is normal today at 60...so, the mild kidney failure I've been experiencing is still there to some degree. 

My total protein is high at 8.6 (norms 6.3-8.2) and my globulin is high at 4.3 (norms 2.5-4). To be honest, I have no idea what these values mean and since I have all those other values to think about, I'm not going to worry about them.

My LDH today, 11 July 2013 has SKYROCKETED to 2274 (norms 313-618) from 1040 on 2 July 2013. This cannot be good!

My bone marrow biopsy results from 26 June 2013.

IgG 1516

IgA <13

IgM < 8

M-Spike 1.2

No circulating plasma cells in my circulating blood.

Bone Marrow Core and Aspirate showing increased cellularity with plasma cells occupying almost 100 % of the cells present along with stainable iron present. The plasma cells (kappa light change) are arranged in broad sheets and occupying the majority of the deep bone marrow compartment.Examination of the peripheral blood smear shows pancytopenia (a reduction in the number of red, white and platelets) without any blasts identified.

Cytogenetics Report: 45, XX,dic (1;1)(q44;p11.2)x2,dic(1;6)(p13;p25)[cp2]/46, XX[15] Abnormal Female Karyotype

(Not sure why I now have an abnormal female karyotype...but I think it said that in June 2013 too).

Jani and I left St. Luke's Hospital just after they closed at 5 PM and checked in to the motel for the night. Then, we went to Wok n' Grill (Chinese food) for dinner.

Stopped at McDonalds for some vanilla soft ice cream and headed back to the motel for the night.

Andrea and Kobe Marinac stayed with our dogs while we were gone to Twin Falls today. Zoe LOVES boys ! ! !

Shirley, Wayne and Alex Olsen fed the dogs for us - "it takes a village" concept. Thanks to everyone for the help.

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.

Pomalidomide (Pomalyst) Update For Relapse After 17 Doses - March 22 2013

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 Pomalidomide indicates it works BEST in the present of Dex. So, I took the 10 mg of Dex that shorted myself on Tuesday. Will try dividing the dose 20 mg on Tuesdays and 20 mg on Wednesdays.

We also discussed changing from injectable Fragmin to the new oral anti-coagulant medication Xarelto. Dr. Padavanija is going to consult Dr. Smith on this this. I'D LOVE LOVE LOVE to get rid of those daily injections! Neither Fragmin nor Xarelto have a reserval agent.

All of my blood values are decreased over the last 10 days since I started Pomalidomide 4 mg on 5 Mar 2013 (17 doses out of the 21 scheduled).

White blood cell count (WBC) down to 1.8 (norms 4.5-11); Absolute Neutrophil Count (ANC) down to 0.89 (norms 1.9-8.8); Hemoglobin down to 9.1 (norms 12-15); and Platelets tanked at 43 (norms 140-440). My LDH was normal at 505 (norms 313-618). 

May have to adjust the pomalidomide dosage or interrupt Pomalyst treatment if my ANC value continues to drop from current 0.89 value to below 0.50. Also, platelet values are evaluated and treatment is interrupted for values less than 25 and reduced dosage to 3 mg for values of 50.  Will have my blood tested again, Wed, 27 Mar 2013.

My kidney function tests are all abnormal this week. Creatinine 1.14 (norms 0.52-1.04); BUN 21 (norms 7-17); GFR 51 (norms > 60).

The blood test for H.Pylori was negative on 22 Mar 2013. So, that is not the cause of my gastritis.

Looks like I'll be wearing a mask FOREVER. Went shopping to pick up my prescriptions and drove home in a light snow storm through the Craters of the Moon National Park, but it was dry in Mackay.

Jani walked the dogs, Kemmer, Kady, and Zoe.

Jani is still here and plans to depart for Colorado on Sunday....oh so sad for Kemmer and me!

Pomalidomide (Pomalyst) Update For Relapse After 7 Doses - March 12 2013

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).

My kidney function tests via my blood continue slightly abnormal. My creatinine is slightly high at 1.10 (norms 0.52-1.04); BUN is normal at 14.4 (norms 7-17); and GFR is abnormally low at 53 (norms > 60). My liver function tests are back to normal since I stopped plain Tylenol.

Drove back to Mackay and pretty much slept all day on the sofa...had to make up for that sleepless night.  Had a little gastritis, but nothing too bad.

The St. Luke's Hospital MSTI (Mountain States Tumor Institute) Pharmacist from Boise called today to ask me about any side effects that I've had from the Pomalyst. They have to report side effects to the manufacturer, Celgene, and they will be calling me each week. I explained that the only side effects that I could attribute to Pomalyst were:

• burning scalp (improving)
• creepy legs (had before I started Pomalyst, but seems worse at night – taking 1/4^th 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)

My neighbors this morning.

Cycle 2 Week 3 Day 1 Carfilzomib and Dex - December 11 2012

Drove to Twin Falls, Idaho with the first hour or so in darkness - watched for deer, but didn't see any. Did get hit by flying rocks from a truck and Bart's windshield took another hit. Arrived feeling very tired.

Had my blood drawn without any problems. My cbc (complete blood count) values were all low, but okay. White blood cell count 3.1 (norms 4.5-11). Hemoglobin was low at 10.6 (norms 12-15); and my platelets were 86 (norms 140-440). My Absolute Neutrophil Count (ANC) was 1.95 (norms 1.9-8.8), so that was good. The ANC value is used to evaluate how much isolation from other you need.

My LDH was way down from a  previous 867 (norms 313-618) on 27 Nov 2012 to 529 today. I'll take this as a good sign...

My kidney function tests were again, NOT ALL normal this week, but close. Creatinine was 1.07 (norms 0.52-1.04); BUN normal at 10 (norms 7-17); BUN/Creatinine Ratio normal 9 (norms 10-20); and GFR abnormal at 55 (norm is greater than 60).

One liver function test was a tad off today, ALT at 56 (norms 9-52).

Once back in the Infusion Area, I was glad to have the recliner to rest in. The nurses had trouble starting an IV on me - not their fault...my veins have just been overused and are small. After 3 pokes, we got one going. We are ALL anxious to have the port placed in my chest on 20 Dec 2012.

They hung my 20 mg of intravenous dex and I almost INSTANTLY felt BETTER and STRONGER. After a full week of feeling weary, I felt like my old self to some degree. Got my carfilzomib 27 metered square dosage.

Left St. Luke's Hospital and went to the Safelite place in Twin Falls to have Bart's windshield chips repaired.  My car insurance pays for this and I have a feeling that I'll be BACK - almost impossible to drive from Mackay to Twin Falls without encountering at least 20 or more large hay hauling, manure hauling, and other trucks.

Went to Taco Bell and checked into my motel for the night. Had a nice nadir and went to bed early.

Cycle 2 Week 2 Day 1 Carfilzomib and Dex - December 3 2012

I woke with sinus infection on the left side of my head and cold symptoms (runny nose, sore throat, but no fever). I took Augmentin last night and will continue today. I took 1/2 Imodium because Augmentin always gets my guts going south fast.

Bart skated across the Craters of the Moon this morning (icy roads for 45 miles or so) to St. Luke's Hospital MSTI in Twin Falls.

The Augmentin - Revlimid combination really got things moving south QUICKLY and I barely made it to a gas station bathroom. Then, I took another 1/2 Imodium. Imodium really DRIES my mouth out.

Had my blood drawn, but there was mix-up on what tests were ordered, so I had to WAIT for the Comprehensive Chem Panel. I was there 2 1/2 hours before the labs were back and RN Letia started my IV. 

My cbc (complete blood count) was better than I thought it would be. White blood cell count was up to 3.5 (norms 4.5-11) from 1.9 on 30 Nov 2012. Hemoglobin was low, but good for me at 11 (norms 12-15); and my platelets were down to 87 (norms 140-440) from 108 on 30 Nov 2012.

My kidney function tests were NOT ALL normal this week, but close. Creatinine was 1.09 (norms 0.52-1.04); BUN normal at 14 (norms 7-17); BUN/Creatinine Ratio normal at 13 (norms 10-20); and GFR abnormal at 54 (norm is greater than 60).

I received my Cycle 2, Week 2, Day 1 Carfilzomib (27 metered square dosage); and 20 mg of intravenous dex. I think the dex helped my sore throat...I was at the Infusion Center for 4 hours...needed to take a chill pill....

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.

Lab Values from 2nd Opinion Mayo Clinic Scottsdale - November 20 2012

My lab values from my 2^nd 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.