Relapsed High Risk Myeloma - Update July 18 2013

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 Zoe.

Jani drove me to Twin Falls, St. Luke's Hospital MSTI this morning. I slept most of the way in the back of Bart. I had awakened with a headache and a left sinus pressure and drainage. I took my 10 mg of Dex orally before I left home.

RN Leita drew my labs out of my Bard Power Port. Then, we waited in the examination room for our appointment with Dr. Pandavanja. My lab values have improved slightly! My wbc are 3.8 (norms 4.5-11); ANC 2.29 (norms 1.9-8.8); hemoglobin 11.2 (norms 12-1); platelets 17 (norms 140-440). So, an increase of 5 platelets is very good news for me!

My kidney function tests are a tad off with creatinine at 1.07 (norms 0.52-1.04); high BUN at 26 (norms 7-18) and GFR only 55. So, I have some type of kidney failure.

I received my intravenous dose of carfilzomib with a pre-treatment of Kytril with pre and post fluids. I spoke with Pharmacist Dave about the Kytril and he thought it best I get some.

We discussed with Dr. Padavanija not to increase the carfilzomib dosage from the original metered square dosage and I was in a agreement. Dr. Padavanija ordered a Z-Pack antibiotic for my sinuses and we will pick those up at the pharmacy on the way to check in to the motel later this afternoon.

The intravenous Kytril (anti-nausea) push medication made me very tired. I knew it would! I react to almost all medications. We went to Walmart and wandered around...I was fine if I held on to the cart handle. Jani had a list and we FOLLOWED IT!

Checked in to the motel where the air-conditioning was comfortable since it was nearly100 degrees outside in Twin Falls. We both had nadirs and went to Taco Bell drive-through for dinner.

Jani sat in the motel hot tub and then went to McDonald's for some soft-serve ice cream for us. I took my Zantac and Prilosec and was off to bed. My guts are burning some, but not that badly.

Relapsed High Risk Myeloma - Update June 18 2013

Did not sleep well last night, woke with left calf spasm and took 1/4 pain pill which seems to be hanging me over this morning.

Jani drove me to Lost Rivers Medical Center Lab in Arco, Idaho to have my CBC (complete blood count) done this morning. My white blood cell count fell from 2.7 to 2.0 (norms 4.5-11); ANC (absolute neutrophil count) and fell from 1.82 to 1.11 (norms 1.9-8.8). So, I probably should avoid hugging others for a while.

My hemoglobin is about the same as it was last week (8.2) before I had at transfusion of one unit of packed red blood cells at 8.5 today (norms 12-16). My platelets actually increased a TINY BIT from 28 to 33 (norms 140-440). Will continue to hold my aspirin 81 mg dose due to low platelets.

I'm not experiencing any shortness of breath with walking slowly right now, so decided that I did not need another transfusion of packed red blood cells today. 

Still need to be super careful with such a low platelet count.that I don't do anything that might cause me to bleed.

Will call triage nurse at St. Luke's Hospital in Twin Falls, Idaho if I develop any symptoms of severe low hemoglobin (oxygen carrying cells) or bleed from low platelets over the next week. My next appointment is not until Wednesday, 26 June 2013 for labs, and a bone marrow biopsy under conscious sedation. 

During my 1st Cycle of Bendamustine/Revlimid/Dex, my blood values stopped falling about 2 1/2 weeks after it was given and I'm on Day 15 of Cycle 2 today. Hence, I don't expect my blood values to drop much more for this 2nd Cycle.

My on-again to STOPPED gastrointestinal tract is on-again today. I never know, but glad to not be on the road to Twin Falls with it on-again right now.

A friend with myeloma as relapsed and that's not good news.

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 - Update - May 28 2013

Woke to new snow on Mt. McCaleb above Mackay, Idaho this morning and 36 degrees. Poor lilacs just began to bloom 2 days ago.

Jani and I drove to Lost Rivers Medical Center and I had my CBC (complete blood count) done. I was hoping for higher values because I feel pretty well.

My white blood cell count is 3.4 which is low for me, but good at the same time (norms 4-11.2); ANC (Absolute Neutrophil Count) 2.00 which is normal and no mask necessary this week (norms 2-8); hemoglobin low at  9.5, but my blood transfusion threshold is 9.0, so won't need that today (norms 12-16); and platelets STILL MISERABLY LOW at 31 YET HOLDING, so more sofa time for me now to prevent bleeding (norms 140-440).

So, we didn't have to travel on to St. Luke's Hospital in Twin Falls today.

Relapsed High-Risk Myeloma - Lab Results - May 21 2013

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.

I still feel tired, especially in the afternoons. My mornings are good and I get a lot done both physically and mentally each morning. However, I have been getting up too early between 5 and 5:30 AM.

I'm on Day 2 of the second Z-Pack antibiotic for my sinus infection. That could be contributing to my tiredness. 

I'm eating red licorice...I told Jani not to take this photo because my myeloma friend, Danny Parker, would see it...and he's for limiting sweets when you have myeloma....But, Danny, I love licorice!

My dear next door neighbor from Colorado, Mary McPhee, passed away yesterday 21 May 2013. She was such a wonderful friend and will be greatly missed.!

Mary P. McPhee, Nov. 13, 1933-May 20, 2013, Age: 79

Mary P. McPhee, 79, of Greeley, passed away at Hospice of Northern Colorado. She was born Nov. 13, 1933, to Louis and Rosa Kousoulos in Cody, Wyo. Mary married Richard McPhee on Jan. 9, 1954, and they later divorced, but remained very close friends.

Mary graduated high school in Cody, Wyo. She moved to Greeley in 1972. She obtained her real estate license in 1975, and worked for Moore Realty, Sears Real Estate, New Horizons and back at Sears, before retiring in October 2011. She loved attending her grandchildren’s sporting events and activities.

Mary is survived by her sons, Mark (Cindy) McPhee, Greeley, Mike (Mary) McPhee, Glenwood Springs, Colo., and Matt (Debbie) McPhee, Greeley; her brother, Louis Kousoulos Jr., Cody, Wyo.; grandchildren, Brooke (Casey) Speck, Travis McPhee (Danyell Stratford), Kelli (Ryan) Nugent, Sarah Pachl, Amy (Richard) Smith, Kacee Pachl, Tanner McPhee, Zach McPhee, Seth McPhee, and Delaynie McPhee; and a great-granddaughter, Amelia Nugent. She was preceded in death by her parents; grandson, Garrett McPhee; sister-in-law, Diane Kousoulos; and by Richard “Dick” McPhee.

A memorial service will be held at 1 p.m. Tuesday, May 28, 2013, at the Allnutt Macy Chapel, with inurnrnent at Sunset Memorial Gardens. Memorial contributions may be made to Hospice of Northern Colorado, in care of Allnutt Funeral Service, 702 13th St., Greeley, CO 80631. Friends may view the online obituary and send condolences at www.allnutt.com.

Relapsed High-Risk Myeloma - Lab Draw - May 16 2013

Faye drove me to Lost Rivers Medical Center Laboratory in Arco, Idaho. Technician Susan drew my CBC (complete blood count) and almost instantly gave me the results. My white blood cell count is low, but okay at 3.6 (norms 4.5-11); ANC is low, but okay at 1.89 (norms 1.9-8.8); hemoglobin low, but great for me at 10.1 (norms 12-16); and platelets NOT so good at 18 (norms 140-440).

I contacted St. Luke's Hospital, Twin Falls triage RN Sandy this morning to check on my appointment there tomorrow 17 May 2013. Hold the ASA (aspirin) 81 mg.

Yippee, I won't have to go to Twin Falls tomorrow unless I have bleeding that I cannot stop! My next appointment at Twin Falls is 21 May 2013.

Relapsed High-Risk Myeloma Update May 2 2013

Drove to Lost Rivers Medical Center Laboratory this morning to have my CBC (complete blood count) done.  Let me remind you that I have not been on any chemotherapy since 10 Apr 2013 because of low platelet counts. I'm still waiting for my bone marrow biopsy results done on 26 Apr 2013.

My white blood cell count is NORMAL at 6.4 (norms 4-11.2); my ANC (absolute neutrophil count is NORMAL at 3.48 (norms 2-8); my hemoglobin is low, but higher than my packed red blood cell threshold now set at 9.0 at 9.5 (norms 12-16); and my platelets are still QUITE LOW - even marked as "CRITICALLY LOW" at 44 (norms 140-440). I don't need a blood transfusion with a hemoglobin of 9.5 today...so, no need to drive 270 miles roundtrip to Twin Falls - yippee.

So, I won't be starting any chemotherapy for now (due to low platelets) - even if we could figure out what drug to use since I have exhausted most of the approved drugs for myeloma.

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)

I been taking the 10 mg of Dex every other day at bedtime and that seems to be working a lot better for me...doesn't seem to keep me awake at night and I'm more alert during the day!

It has been cold here in Mackay, Idaho with freezing temperatures at night and blue skies and sunshine during the day - I'll take that.

Mackay Main Street 1 May 2013.

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.

Relapsed High-Risk Myeloma Update with M-Spike - April 19 2013

Arrived St. Luke's Hospital, Twin Falls just before my 9 AM appointment. Only had to dodge mule deer twice near Leslie, Idaho. One crossed right in front of me at Lockie's.

Triage RN Sandy helped me get this appointment yesterday and she really listened to me which I am so appreciative. She was able to get an order for type and cross for my blood type and an order a unit of packed red blood cells at the new higher threshold for transfusion of 9.0. They sent 0 Positive blood which is fine for my A Positive Blood Type.

 AGAIN, thankful for volunteer blood donors!

She also got the ball rolling to have a bone marrow biopsy scheduled next week under conscious sedation. I will have the bone marrow biopsy next Friday, 26 Apr 2013.

My white blood cell count today is 2.1 (norms  4.5-11); ANC up to 1.25, but still low (norms 1.9-8.8; Hemoglobin down to 8.3 (norms 12-16); and platelets up to 45 from 39 (norms 140-440).

My M-Spike came from the University of Colorado Hospital this morning from 16 April 2018. It has doubled in 3 months from 0.4 to 0.8...not so good. Remember, I'm non-secretory, so an M-Spike of 0.8 may not look impressively bad until I have the percent of plasma cells in my bone marrow biopsy next Friday.

My M Spike was 3.0 on 18 May 2011 (just before my formal diagnosis).

Went food shopping and drove home in a light rain off and on. Really felt good while shopping and no shortness of breath.

Cycle 2 Pomalidomide For Relapse Update - April 5 2013

On 2 Apr 2013 started Cycle 2 Pomalidomide at 3 mg nightly and 40 mg Dex weekly (on Tuesday's). I consulted Dr. Smith at UCH regarding dropping the pomalidomide dosage from 4 mg to 3 mg since my platelets are so low and liable. He was in agreement.

Had a TERRIBLE day yesterday, 4 Apr 2013 with a left-sided neck ache and NO ENERGY. I don't know if this was sort of migraine-event or just coming down off of 40 mg of Dex. I haven't had migraine in greater than 5 years. I didn't sleep more than a couple of hours in the last 24 hours. I felt so badly, that I did not take the 3 mg of pomalidomide at bedtime.

This morning, 5 Apr 2013, I feel better. Still shaky from the dex, but the left-sided neck ache is gone. I have very little energy and increased heart rate with activity.

The nurse from St. Luke's Hospital, Twin Falls, Idaho called and said they were faxing a CBC lab test order to Lost Rivers Medical Center. So, I went to Arco, Idaho and had my blood tested this morning, 5 Apr 2013.

My white blood cell count is slightly lower at 2.0 (norms 4.5-11); absolute neutrophil count (ANC) lower at 1.09 (norms 1.9-8.8); hemoglobin lower at 8.5 (norms 12-16); and platelets slightly up, but still critically low at 45 (norms 140-440).

I will go back to Arco on 10 Apr 2013 to have another CBC.

Pomalidomide (Pomalyst) Update For Relapse After Cycle 1-21 and 1 Week Off- Prior to Beginning of Cycle 2 April 2 2013

Drove to Lost Rivers Medical Center Lab this morning for a CBC, Chem Panel, and LDH. Technician Diana drew my blood - 1st poke every time - she's good.

My white blood cell count has recovered some from last week at 2.2, but is still low (norms 4.5-11); ANC (absolute neutrophil count) is up too, but still low at 1.23 (norms 1.9-8.8); hemoglobin is only slight up to 8.6 and is still quite low (norms 12-16); and my platelets recovered hardly at all to 43 (norms 140-440). The low platelet count may hold the beginning of my Pomalidomide Cycle 2.  Lost Rivers Medical Center Lab faxed St. Luke's Hospital the results and I'm waiting to hear from them on how to proceed with Cycle 2 Pomalidomide. At 4:40 PM, finally made contact with the triage nurse who said my doctor was out of town until Friday. She said I should go ahead with the 4 mg pomalidomide dosage tonight.

My LDH value seems to have skyrocketed upward to 1117 (norms 313-618).

My creatinine and BUN are normal indicating good kidney function. My glucose is up from steroids and probably eating too much sugar  at 185, so I better watch my sugar intake.

Drove home to Mackay. 

Waited for FedEx to deliver Pomalidamide Cycle 2 (84 - 1 mg capsules) which arrived before noon.

Walked Kemmer around a couple blocks here in town.  A mule deer across the street from us. There were 20 in the backyard of this house.

On 30 March 2013, we had whole parade of mule deer out front.