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 August 2 2013

Had my blood tested early 2 Aug 2013 at Lost Rivers Medical Center in Arco, Idaho. Surprisingly, my platelets are HOLDING at 16 (norms 140-440). The platelets had been 17 on 30 July 2013. I had my last Cycle 1 Pomalyst (pomalidomide) on 31 July 2013, so I was off all chemo today during the blood draw. Maybe the tandem intravenous carfilzomib and oral Pomalyst is helping me???

My white count isn't too hot at 1.6 with an ANC (absolute neutrophil count which determines how you can be in public or not) at just 0.40 (norms 2-8). They like to see the ANC above 1.0 to be without a mask. I still have not had any of my post- autologous stem cell transplant immunizations like measles, mumps, etc.

My hemoglobin has been sitting between 8-9 (norms 12-16) for the last couple of weeks and was 8.3 today. The threshold they use to give me a packed red blood cell transfusion has been set at 9.0, so I needed a unit of blood today. Jani and I drove right to St. Luke's Hospital in Twin Falls and they drew a type and cross match from my Bard Power Port and ordered my one unit of blood. Jani went shopping and I waited for the irradiates packed red blood cells. RN Janae took very good care of me along with RN Rhonda. The blood finally showed up and as in by 3 PM. I had a nadir in the Infusion Chair.

I felt quite a bit better after the blood transfusion, lots less shortness of breath. AGAIN, thanks to all the volunteer donors of blood and platelets.

History of All Blood Transfusions Since Diagnosis May 24 2011

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

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)

Jani drove me home to Mackay - I slept most of the way. We arrived in Mackay about 5:45 PM. Jani unloaded Bart and headed to Dad's house to visit with Jeff and Dad for awhile while I was one with the sofa and went to bed at 8 PM.

Relapsed High Risk Myeloma - Update July 26 2013

Slept pretty well in the motel - but, I had taken 2 1/2 Imodium which makes me tired. Unfortunately, I had a tad of bleeding from the back of my throat and rectal area. They are sending me home with stool sampling materials - oh joy ~

Arrived at St. Luke's Hospital MSTI for our 8:20 AM appointment. They decided to draw a CBC and a CHEM Panel and we had to wait for those results and then a consult via the RN from Dr. Padavanija who was seeing clinic patients on whether I could receive my carfilzomid chemo today...this took a long time and Jani left to find breakfast somewhere.

My white blood cell count has dropped to 1.7 (norms 4.5-11); ANC to below 1.0 to 0.66 which is not good and might have held my carfilzomib chemo; my hemoglobin dropped to 8.6 and I could have had a red blood cell transfusion, but decided against it for now. MY platelets dropped from 37 of yesterday to 21 today and they said I could have more platelets if I wanted them too, but I didn't want to wait around all day for that either, so declined.

My chem panel was essentialy normal and my mild kidney failure, if all, is MILD.

I go to Lost Rivers Medical Center Lab on 30 July 2013 and will get my blood tested. Depending on the results,  I will probably need both red blood cells and platelets on that day at St. Luke's in Twin Falls - but, at least, we'll be prepared to wait that day.  If I decide to stop the transfusions, it probably would not  take long for me to die.

My brain is cloudy at times which I attribute to the anti-nausea medication Kytril...but, I'm still able to blog and do my ancestry stuff.

Relapsed High Risk Myeloma - Update June 26 2013

Up at o'dark thirty to depart at 4:45 AM (that's early folks) for St. Luke's Hospital in Twin Falls, Idaho. I slept the whole way there while Jani drove. Was pretty much out of breath as I walked from the parking lot to the Infusion Center.

Had my labs drawn from my Bard Power Port as soon as we arrived just after 7 AM in the MSTI Infusion Center. Drew CBC, Chem Panel, LDH, and SPEP.

Then off to Interventional Radiology for my 12th bone marrow biopsy since diagnosis (24 May 2011). 
Bone Marrow Biopsy History:

1. 24 May 2011 (Diagnosis, Dr. Moore in Ft. Collins, Colorado; traditional trocar)
2. 20 Aug 2011 (1st at UCH with Glen, NP; traditional trocar)
3. 1 Sept 2011 (Karley, NP, UCH, traditional trocar)
4. 2 Nov 2011  (Karley, NP, UCH, tradition trocar)
5. 9 Mar 2012  (Karley, NP and 1st with OnControl Driver, UCH)
6. 3 May 2012 (Shannon, NP with OnControl Driver, UCH)
7. 12 July 2012 (Trish, NP with OnControl Driver UCH)
8. 17 Oct 2012 (Angela, NP with OnControl Driver UCH)
9. 20 Dec 2012 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
10. 20 Feb 2013 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
11. 26 Apr 2013 (John Gray, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
12. 26 Jun 2013 (Kirk Peterson, MD. St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar

RN Mendi was there to greet Jani and I. My tongue was so DRY and STUCK to the roof of my mouth from being NPO (nothing by mouth) since midnight that it was difficult to articulate. 

My CBC and Chem Panel results came back and and were all LOW.  White blood cell count low at 1.8 (norms 4.5-11); ANC (absolute neutrophil count) low at 1.18 (norms 1.90-8.8); platelets LOW at 28 (norms 140-440); and hemoglobin REALLY LOW at 7.3 (norms 12-16) - no wonder I was out of breath with the walk from the parking lot to the hospital.

My LDH was 1040 which was down from 1349 (norms 313-618) which I'll take as a good sign!

My SPEP results will take a week, although, I'm pretty sure I'll be able to get my M-Spike result by this Friday, 28 Jun 2013.

My Chem Panel wasn't too bad, still showing mild kidney failure with a creatinine of 1.09 (norms 0.52-1.04); BUN 18 (norms 7-17) and GFR 54 (norm greater than 60).

RN Mendi had to make a number of phone calls to determine if I was going to have the bone marrow biopsy 1st, followed by 2 units of blood transfusion or the blood transfusion followed by by the bone marrow biopsy. 

Kirk Peterson, MD Pathology decided to do the bone marrow biopsy first under conscious sedation (5 mg Versed and 100 mg  Fentanyl). 

Then send me back to MSTI Infusion Center via a wheelchair for 2 units of packed red blood cells transfusion and 10 mg of lasix. I was drugged from the conscious sedation and napped off and on while I got my blood. The 10 mg of lasix helped to reduce my "michelin tire look".

I'm pretty sure my left frontal sinus infection is back, so the nurse called Dr. Padavanija and got a Z-Pack prescription for me which I'll start tomorrow.

Jani went shopping with a long list at several stores.

We left Twin Falls at  3:45 PM. I felt AWFUL...every bone in my body stiff, headache, terrible burning gastritis, and sleepy. It was a Dex 10 mg day and I hadn't taken it until I got home. As much as the Dex swells me up - it does help my aches and pains. Plus Dex actually treats myeloma. Went to bed feeling ROTTEN ROTTEN...Jani checked on me several times.

My GI tract is in the rapidly south mode and I took some Imodium.

History of All Blood Transfusions Since Diagnosis May 24 2011

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

Relapsed High Risk Myeloma - 1 Unit Packed Red Blood Cells Transfusion - Update June 11 2013

Had a night of bilateral hip ACHES SUPREME. Finally took 1/4 of a pain pill and then followed by another 1/4. I wish I knew why my hips hurts so badly. The MRI I had on them 28 Feb 2013 was completely normal - but, they feel like they could come out of the socket if I were not careful.

At 7:30 AM, I drove Jonah (1999 Honda Passport) to Arco to have the air-conditioning looked at, while Jani drove Bart (2006 Honda Pilot) to pick me up and take me up to the lab at the Lost Rivers Medical Center for a CBC (complete blood count).

My white blood cell count has dropped to 2.7 from 5.4 (norms 4.5-11) since I had the Cycle 2 Bendamustine Day 1 and 2 on 4 and 5 June 2013. My ANC (absolute neutrophil count) has also dropped to 1.82 from 3.97 (norms 1.9-8.8, but close enough not to have to wear a mask. My hemoglobin dropped to 8.2 from 9.6 (norms 12-16) and since my threshold for packed red blood cell transfusion is set at 9.0, we drove to St. Luke's Hospital in Twin Falls for one unit of packed red blood cells; after 1 unit of packed red blood cells, I should not be as breathless as I have been with walking; my platelets also dropped to 28 from 45 (norms 140-440), but I won't have to worry about a platelet transfusion until my platelets go less than 10 or I begin to  bleed.

The MSTI cancer center infusion center was full today, so they sent me over to another outpatient Infusion Center at St. Luke's Hospital where they mostly give intravenous anti-arthritis and osteoporosis  drugs. 

Jani went to the cafeteria and got me a hamburger and her a chicken sandwich. We shared one ordered of french fries. Then, Jani went shopping and to get her hair cut again.

It is a long process to get the blood transfusion because they have to draw blood for a type and cross (takes an hour to complete in the lab here); order the correct blood (either Type O or A+ in my case); send the blood to radiology to irradiated because of my 2 failed autologous stem cell transplants); deliver it to the Infusion Center; hook it up to a pump and blood warmer device; and then let it run in over a 2-hour period (their protocol minimum time for 1 unit). They hung the blood right at 1 PM and ran it through my Bard Power Port located under the skin of my right chest wall.

 Lots of packed red blood cells being dripped and pumped in to my port.

I have Type A+ blood, but can have O+ blood safely. Again, thanks to all volunteer blood donors.

 Blood warming tubing from the IV pump - that's my laptop on the right.

History of All Blood Transfusions Since Diagnosis May 24 2011

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

We should be able to pick up Jonah with the fixed up air-conditioning on our way home today. Although, I am not all sure how late the place in Arco is open and we are 2 hours drive from Twin Falls to Arco.

With the new red blood cells on board, I should have more energy tomorrow for some sort of adventure with Jani and the dogs tomorrow.

Relapsed High-Risk Myeloma - Two Units Packed Red Blood Cells Transfusion - Update May 14 2013

Up at o'dark thirty again to be on the road to St. Luke's Hospital in Twin Falls, Idaho for a 9 AM appointment (drive time 2 hours 20 minutes).

We arrived just on time even though we had to stop in Shoshone so I could use the facilities - everything moving VERY FAST south for the last 2 days, which is NOT FUN. I think it must be do to the Revlimid 5 mg I started 7 May 2013. I've taken Imodium each day - sometimes twice. 

I have a sinus infection with lots of left-sided eye and nose pressure, nasty drainage and all that goes with sinus problems, so I will start on some antibiotics today.

My white blood cell count is coming down and Dr. Padavanija thinks it will continue to drift down for the 2 1/2 week nadir of Bendamustine. Today it was low at 2.4 (norms 4.5-11); ANC (absolute neutrophil count) was low, but not that low at 1.72 (norms 1.9-8.); hemoglobin low at 8.6 (norms 12-16); and platelets low at 35 (norms 140-440).

Dr. Padavanija thought it was best for me to get 1 or 2 units of packed red blood cells today, 14 May 2013. So, while Jani went to about half the retail outlets in Twin Falls, I got 2 units of blood. RN's Vicki and MeLisa check my blood against my type and cross lab work.

 I slept through the first unit - SNORING according the nurses.

AGAIN and AGAIN. Thank you Idaho VOLUNTEER blood and platelet donors for keeping me alive! You're all the BEST! 

History of All Blood Transfusions Since Diagnosis May 24 2011

1. May 14 2013 (2 units)
2. May 7 2013
3. Apr 19 2013
4. Apr 10 2013
5. May 16 2012 (2 units)
6. April 2 2012  (2 units)
7. Sept 22 2011 (2 units)
8. Sept 7 2011 (2 units)

Chem Panel still showing low level kidney failure with  GFR at 58 (norms greater than 60).

Back to the the pharmacy for Jani for my sinus antibiotics. We were able to leave and were back in Mackay, Idaho around 5:30 PM.  The wind was blowing in the Big Lost River Valley and not a good day to plowin' your field.

Relapsed High-Risk Myeloma Update May 7 2013

Drove myself to St. Luke’s Hospital, Twin Falls leaving in the dark at 4:45 AM. Only had to stop for one mule deer standing in the road near Leslie.

Jani left Colorado for Mackay at 7 AM. I was able to follow her travels on Latitude (an iPhone app).

Had my blood drawn from my Bard Power Port at 7:20 AM and waited for the results at my 8 AM appointment with Dr. Padavanija.

My white blood cell count in up in the normal range to 6.1 (norms 4.5-11); ANC (absolute neutrophil count) good at 3.93 (norms 1.9-8.8) so no mask required; hemoglobin low at 8.9 (norms 12-15) so I’ll be getting packed red cells today; my platelets are MISERABLE at 33 (norms 140-440). I have a blood blister on my inside of my cheek of my mouth.

Dr. Padavanija doesn’t want to replace platelets via transfusion until mine drop below 20. Unfortunately, platelets only last a few days in your system after transfusion even if you get a transfusion. She is expecting the new chemo plan to drop my platelets, and require rescue platelet transfusions.

My medical insurance has approved the new chemo plan of:

•   Bendamustine (Treanda)  Day 1, 2 of 2
•   Aloxi Day 1
•   Revlimid 5 mg Days 1-21/28
•   Dex 40 mg/weekly, which I will divide to 10 mg every other day.

I will start Bendamustine Day 1 today, 7 May 2013 and Day 2 tomorrow, 8 May 2013.  I will start the Revlimid 5 mg as soon as I get it. I have Revlimid 10 mg capsules at home, so I will start those every other day until the 5 mg capsules arrive. 

They did a manual count of my white cell differential (types of white blood cells) to make sure I had not developed plasma cell leukemia, where the plasma cells are not only located in the bone marrow, but have started growing in the blood. So far, my plasma cells have isolated to just my bone marrow at 95%. That leaves only 5% normal bone marrow which is NOT functioning that well to produce my normal wbc, hemoglobin, and platelets..

My chem panel results are okay with a normal creatinine at 1.04 (0.52-1.04); BUN high at 23 (norms 7-17); GFR abnormal at 58 indicating mild kidney failure.

Now that I’m on bendamustine, I will have to drink lots of fluids to avoid further kidney damage. If the bendamustine works to kill off some of the 95 % plasma cells, it could do it too fast and dead cells could accumulate in my kidneys causing kidney failure.

My last m-spike on 23 Apr 2013 was SPIKING at 1.3 (norms 0). It had been 0.8 on 16 Apr 2013 at the University of Colorado Hospital.

I actually slept in the recliner at St. Luke’s Hospital while I received my first dose of bendamustine and 1 unit of packed red blood cells. I was probably SNORING LOUDLY and letting everyone present know that I was asleep! 

Again, I am thankful for volunteer blood donors!

The two social workers at St. Luke's Hospital MSTI came to talk to me about my end-of-life issues at my request. More paperwork to fill out. My medical durable power of attorney paperwork filled out at diagnosis (24 May 2011) were done in Colorado and they advised I update to Idaho documents. Those stupid steroids (dex) make me so emotionally liable and I’m not really! I'm okay with my decisions and ready when the time arrives. So, ignore any crying I do!

Summary of Chemotherapy Agents I've Had Since Diagnosis 23 Months Ago:

1. Revlimid (lenalidomide)
2. Velcade (bortezomib) 
3. Decadron (dexamethasone)
4. Thalidomide
5. Cisplastin
6. Adriamycin
7. Cytoxan
8. Etoposide
9. Carmustine
10. Cytarabine
11. Melphalan
12. Vorinostat (Zolinza)
13. Carfilzomib (Kyprolis)
14. Pomalidomide (Pomalyst)
15. Bendamustine (Treanda)

History of All Blood Transfusions Since Diagnosis May 24 2011

1. May 7 2013
2. Apr 19 10 2013
3. Apr 10 2013
4. May 16 2012
5. April 2 2012
6. Sept 22 2011
7. Sept 7 2011

History of All Platelet Transfusions Since Diagnosis May 24 2011

1. Platelet Transfusion March 24 2012
2. Platelet Transfusion March 27 2012
3. Platelet Transfusion March 29 2012
4. Platelet Transfusion March 31 2012
5. Platelet Transfusion May 20 2012
6. Platelet Transfusion May 22 2012

Finished up at St. Luke’s around 2 pm and went to the pharmacy to pick up my prescriptions and a quick run around Walmart. Was on the road home to Mackay by 3 PM, arriving at 5:20 PM.

Jani had just arrived from Colorado just prior to 5 PM at Dad's. She brought both Paco and I Chinese Food from our favorite place in Colorado. I’m so happy to have her with me! Unfortunately, bendamustine alters your taste buds (takes the zest out of them) and the Chinese was not as good as I remembered.

Clark and Dianne brought Kemmer home – Clark is so good to let Kemmer wade and swim Kid’s Creek and clean her up after. Kemmer was also delighted to have Zoe and Kady arrive.

Two blooms on my apricot tree May 6 2013. Hope for no hard freezes NOW!