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.

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