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 - Update June 10 2013

Our friends from Colorado, Ali and Patti, packed up and departed Mackay mid-morning. 

I was going to go get the mail for Paco, but I was tired and Jani went for me.

Spent all day one-with-the-sofa, so I'm pretty sure my hemoglobin (oxygen-carrying cells) is dropping from the Cycle 2, Day 1 and 2 bendamustine (this is Day 7 since I received it).

St. Luke's Hospital Scheduling called and made my appointment for my next conscious sedation bone marrow biopsy (my 12th in 25 months) for Wed, 26 Jun 2013 with Dr. Peterson.  I'm taking it as a good sign that they even want to know how my bone marrow is doing on bendamustine.

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

I continue to feel well in the early morning and then EXHAUSTED after lunch. Bilateral hip pain and continued, diverse gut aches. And in fairness, I think I have more than a "touch of chemobrain" of late. I've been trying to help Jani finish up the Mt. McCaleb Cemetery veteran's by rows list and without Jani - it would be a MESS.

Relapsed High-Risk Myeloma Update with Bone Marrow Biopsy - April 26 2013

Lana picked me up at 6:30 AM and we were off to St. Luke's Hospital in Twin Falls, Idaho for my ELEVENTH (11th) Bone Marrow Biopsy (my 3rd under conscious sedation) in 23 months since my high-risk 4:14, 1q21 and others cytogenetic changes multiple myeloma diagnosis on 24 May 2011. I am a non-secretory and my myeloma does not show up well in my blood tests - hence, requiring frequent bone marrow biopsies. I feel well today!

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

Checked in the Cancer Center to have my Bard Power Port accessed and a CBC (complete blood count) drawn. RN Rhonda took good care of me. I saw RN Kenadi (Dr. Padavanija's nurse) and asked her to ask Dr. Padavanija if my platelets were greater than 50, if I could re-start Pomalidomide and they decided I could at 2 mg daily, but she wanted me to know that my myeloma was progressing and she didn't think it work. Turned out to be a non-issue since my platelets were only 39.

My IgG on 23 Apr 2013 continues to soar upward to 1,701 (up from 1,247 in less than a week).  My IgG at diagnosis was 3,422 (24 may 2011).

My M-Spike also continues increase to 1.3 on 23 Apr 2013 from 0.8 (norms ZERO) on 16 Apr 2013. My M-Spike at diagnosis was 3.0 (24 May 2011).

My white blood cell count is way up, but still low to 4.0 (norms 4.5-11); ANC (absolute neutrophil count) is NORMAL at 2.83 (norms 1.9-8.8), so no mask this week!; hemoglobin low at 9.7 (norms 140-440); and platelets STILL MISERABLY LOW at 39 (norms 140-440). 

We walked over and checked in to Interventional Radiology for my 11th bone marrow biopsy. I had RN Shanna an she works knowledgeable and "HAPPY" so, it was great. Pathologist, John Gray, MD came to do my bone marrow biopsy. They let Lana watch.

After the bone marrow biopsy procedure, Lana drove me home to Mackay. I didn't feel as drugged as I have in the past and we chatted away the whole way even though I received a little more Fentanyl and Versed (conscious sedation intravenous drugs) than I have in the past. 

I do have quite a bit of post-procedure pain a the site on the left side with pain radiating down the back of my left leg - WHICH BETTER BE TEMPORARY!!!!! I decided to take my Saturday 10 mg Dex dose tonight to decrease any inflammation around the bone marrow biopsy site. It helped some.

Now, I just have to wait until 9 May 2013 for the bone marrow biopsy results AND, hopefully, come up with some kind of chemo plan to beat the myeloma down again - may only be wishful thinking on my part. I'm going to guess that my plasma cell percentage (myeloma cancer) in my bone marrow today will be at 85 percent (my plasma cell percentage on diagnosis was 80 percent on 24 May 2011). It was at 63 percent on 20 Feb 2013 - just 2 months ago.

I'll be getting my CBC checked next on 2 May 2013.

Lana had me home in Mackay by 2:30 PM and Dianne brought Kemmer home.  Dianne was lucky this evening and saw a bull moose on her walk right here in town.

Cycle 4 Week 3 Day 2 Carfilzomib/Dex and Day 16/21 Revlimid 10 mg - February 14 2013

Couldn't sleep at all in the motel overnight because of the Dex 20 mg. Finally, at 2 AM just turned on the lights and worked on my computer until morning. Almost forgot to put my EMLA Cream on my Bard Power Port...I am such a weanie - I think I'm the only patient they have that uses EMLA.

Checked out of the motel and went to Walmart to buy bottled water - Nestle PureLife, which according to Consumer's Reports is one of the few bottled waters that is actually purified using reverse osmosis or distillation and not "just water in a bottle". Because of my non-existent immunoglobulins after  2 failed autologous stem cell transplants and abnormally low ANC (absolute neutrophil count), I am careful to drink only Nestle's PureLife water.

Arrived for my Infusion appointment right on time at 8 AM. Took the nurses some chocolate candy for Valentine's Day. 

RN Brittany was able to access my Bard Power Port and hurried my carfilzomib preparation from pharmacy. I took 4 mg of Dex orally. Was in and out in just over an hour. 

On the road back to Mackay from Twin Falls. Lots of traffic in the opposite direction with 10 hay hauling trucks and a steady stream of cars from Custer (Challis and Mackay) and Butte (Arco) Counties heading to Boise for the High School Girl's Basketball State Tournament today through Saturday. All three high schools qualified for the tournament. Challis and Butte County are in a Bracket ahead of Mackay. The games will be shown FREE on the internet and I plan to watch!

The injured elk was gone and in her place were BIG, temporary signs with orange flags warning of Wild Life Crossing on Highway 93 South and North.

Stopped to visit my father and then went to pick up Kemmer. 35 degrees and clear blue skies - WELCOME HOME. Snow is melting.

Home and one-with-the-sofa for a nice nadir. 

I email Clay Smith, MD (University of Colorado Hospital) and Raphael Fonseca, MD (Mayo-Scottsdale Arizona) each week with a summary of my lab values, chemotherapy received, and basically how I feel. They have been wonderful in responding back to me with their suggestions for my continued care directed by Phatama Padavanija, MD (St. Luke's Hospital, Twin Falls, Idaho). Dr. Smith thinks I definitely need to a MRI of my left hip and pelvis to look for a fracture and/or tumor since it hurts to lay on my left side...wants me to take less Tylenol and start on narcotic in low doses since my liver enzyme is high. He also thinks I should see a gastrointestinal doctor and perhaps have an upper endoscopy to look for an ulcer or other problem in my GI tract since I've had prolonged gastritis. I'll work on getting these scheduled through Dr. Padavanija, however, she is on vacation through 26 Feb 2013. I'm so lucky to have such a good team, especially since I live so remotely in Idaho!

Will start back on Cytoxan at a lesser dosage (300 mg vs 500 mg) for Cycle 5 beginning 27 Feb 2013....my poor hair will never grow. Stick with Revlimid 10 mg for Cycle 5. I'm not excited to take Cytoxan again it really lowered my counts and I was SOOOO TIRED while on it. 

Of course, this might change depending on my next bone marrow biopsy results being done next week under conscious sedation on 20 Feb 2013. My last percentage of plasma cells in my bone marrow biopsy done 20 Dec 2012 was 40%, so, I'm hoping for less than that  this go around. Should have partial results of the bone marrow biopsy by 27 Feb 2013 and the cytogenetics will probably take a bit longer. However, I don't expect any change in the cytogenetics 4:14 and 1q changes since they have been PERSISTENT through the last 9 bone marrow biopsies.

Bone Marrow Biopsy History:

1. 24 May 2011 (Diagnosis at 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