Relapsed High Risk Myeloma - Update June 28 2013

Slept better...hope this is a trend. Up early to make coffee for the Henderson's and feed the dogs.

My stomach is markedly better this morning. I'm on Day 2 of the Zithromax antibiotic for my sinuses. My bone marrow site from 26 June 2013 is a tad sore and I have avoided lying on that side.

Ann and Chuck went on a walk around town before breakfast to celebrate their 33rd Wedding Anniversary. 

Took Ann and Chuck with me to get the mail at the Post Office, tour the Western Store (our answer to "Walmart", and the Mountain Gem Gift Shop located in Oxley Bakery.  On to Ivies for a few groceries. At our house, no day is a "real day" without a trip or TWO to Ivies.

Delivered the mail to my father where the Henderson's visited with my father for awhile in the kitchen.

Back at home, Jani made potato salad - she's an EXPERT now with our M's recipe.


Ann has a new camera and can zoom in on the Mine Hill Headhouse from my front porch.

 The horses are still behind my house and delightful to watch.

 I am still the "michelin-tire" swollen myeloma girl.

Chuck Henderson and Me on the front porch early this morning.

Jani, Chuck, and Ann went golfing at the 9-Hole River Park Golf Course. 

It was nearly a 100 degrees and they cooked, but assured me they had a wonderful time. They used our father's golf cart which we call the MackayTownCar (gas driven vs electric).  Chuck Henderson in the MackayTownCar.

Chuck Henderson and Jani Malkiewicz paying green fees at the River Park Golf Course with McKenna Mangun.

 The 33-year anniversary couple on the golf course with Mt. McCaleb in the background.

Jani golfing - she LOVES golf and is quite good at it - she spent 8 years as an LPGA Teaching Professional, so she knows her golf.

I stayed home and did what I do best these days - became one with my sofa and worked on labeling photos taken over the last couple of days. I also cooked the pork ribs for dinner while they were golfing. Even though I had 2 units of packed red blood cells on 26 June 2013, I'm sure my hemoglobin isn't much higher than 9 (low norm 12), so energy is not readily available right now.

They came home from golfing around 4:30 PM and we had a delicious dinner of homemade potato salad, corn on the cob and pork ribs finished up on the barbecue with barbecue sauce.

Around 9:30 PM with a temperature outside of nearly 96 degrees, we had a "dry rainstorm", but we ended up with a beautiful rainbow.

 Plus, the little boy mule deer were out in groups tonight.

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)

Updates April 27-28 2013

Feeling pretty well. Decided to go watch Johnson's branding for awhile Saturday morning 27 Apr 2013. The calves looked so little. I didn't stay long because of the dust in the air.

Came home and slept most of the afternoon.

Today, 28 Apr 2013, I had a lot more energy, showered, did 2 loads of laundry, and worked several hours on scanning genealogy files. 

Have a bit of a sinus headache and took 1/2 of pain pill. My bone marrow biopsy site of 26 Apr 2013 continues to be sore. The radiating pain I had down my left leg comes and goes, but I think it is getting better. Harder waiting for the results.

Cora made me some potato salad and Earl delivered it -  yum! Had a nice visit from Vickie Mae.

Then, I walked Kemmer slowly for quite a ways on the BLM Road South on the Mine HIll.

 At least I was out in the sunlight for almost 40 minutes, which is good for Vitamin D.

 Found a penny that my M sent, I'm sure.

Did the grocery shopping at Ivies and bought dill pickles for the leg cramps. Visited my father for awhile. Came home to work on the computer some more. Had a slight bloody nose, so my platelets must still be way too low.

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.

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.

SO, How Will I Know If the Pomalidomide (Pomalyst) Helps My Current Relapse?

After I have completed 2 full cycles of pomalidomide, I will have another bone marrow biopsy to see if it has helped my relapse to 60 % plasma cells noted after the bone marrow biopsy on 20 Feb 2013. 

Remember, I have non-secretory multiple myeloma and the SPEP blood tests (m-spike, free light chains, and immunoglobulins IgG, ImG and IaG) are of little value in interpreting where my myeloma is at, yet they continue to draw these tests. Hence, the need for bone marrow biopsies every 2 months.

So, although not scheduled at present, I will have my next bone marrow biopsy at the end of April 2013.

Pomalidomide is depressing the normal elements in my blood (red blood cells, white blood cells, and platelets), so I can only hope it is killing off myeloma plasma cells TOO!

Post Bone Marrow Biopsy - February 21 2013

Didn't sleep well - what else is new. I have virtually no pain at my bone marrow biopsy site in my right iliac crest from 20 Feb 2013. I left the dressing on for 24 hours and when I took it off there was only a small amount of old blood on the dressing.

My lower GI tract issues of last night seem to be resolved this morning.

Took Dex 20 mg today 21 Feb 2013. I due to take it yesterday, 20 Dec 2013, but thought I had too many meds on board with the conscious sedation, so delayed until today.

I waited around for the FedEx truck to deliver my Cycle 5 Revlimid 10 mg and he came around 11:30 AM. I'll start Cycle 5 on 27 Feb 2013 for 1/21 day cycle.

I walked Kemmer 0.82 miles this afternoon. It's a lot colder than it looks, but I love the blue skies. Our snow is rapidly melting, but I'm sure we will have more before spring.

Bone Marrow Biopsy Number 10 - February 20 2013

Had a better week in regard to my gastritis and energy level. I'm not sure what, if anything, was different other than the intravenous Aloxi I received on the first day of carfilzomib on 13 Feb 2013. Continue to have trouble with everything going SOUTH rapidly, and took 1/2 Imodium on Feb 18 2013 which almost instantly made me TIRED and cloudy-of-mind.

When I have pain, I started taking ¼ tablet of Percocet (5/325) instead of plain Tylenol since my liver enzyme is up. ¼ tablet only contains 81.25 mg of Tylenol (acetaminophen) which is better than the 500 mg I was taking. I do not like taking narcotics – they seem to interfere with my sleep. However, I have to take something for the pain in my left hip.

Was able to walk Kemmer a couple of times. 1.24 miles on Feb 16 2013; 1.37 miles Feb 17 2012, and 0.82 miles on 18 Feb 2013.

Kemmer thanking the Szabo's for her Valentine Card Feb 16 2013

Walk 0.82 miles on 18 Feb 2013.

Held my Fragmin Injection 15,000 units 19 Feb 2013 in preparation for the bone marrow biopsy 20 Feb 2013.

Drove to Twin Falls, Idaho is a driving snow storm in the DARK with Lana. Had trouble finding the road sometimes and didn't see any deer or elk. Arrived just before 8:30 AM and went to the Infusion Area to have my Bard Power Port accessed and my SPEP (M Spike, Free Light Chains, Protein, Immunoglobulins), CBC, and Chem Panel Labs drawn.  

My white blood cell count was low at 1.9 (norms 4.5-11); absolute neutrophil count (ANC) was low at 1.12 (norms 1.9-8.8); hemoglobin low at 10.2 (norms 12-15); and platelets low at 100 (norms140-440). I think all of my values were slightly higher than they REALLY WERE since I was dehydrated from being NPO since midnight (over 8 hours).

LDH was 509 (norms 313-618) and up from my 13 Feb 2013 value of 460.

My creatinine was slightly high at 1.06 (norms 0.52-1.04); my BUN/CR Ratio was slightly low at 9 (norms 10-20); and my GFR was normal at 56 (abnormal >60). Again, I think these values were influenced by being dehydrated from being NPO since midnight (over 8 hours).

From the Cancer Center, we went over to Interventional Radiology for my 10th Bone Marrow Biopsy and my second one with conscious sedation.  Lana went with me to drive me home and it was great - we laughed a lot.

I had the same nurse, RN Mendi, as last December and everything was familiar. This picture was taken before any drugs were given and you can see my "tired look" of late.

Kirk Peterson, MD from pathology and his assistant, April, came and I greeted them. After that I don't remember a thing thanks to conscious sedation with Versed 5 mg and Fentanyl 100 mcg. Dressing over the bone marrow biopsy site on my right iliac crest and I have no pain a the site.

My Bard Power Port always "oozes" a tad after they take the Huber Needle out.

Lana drove me home - it was surreal in that the roads were completely dry and ALL the blizzard snow (3-4 inches) was GONE and DRIED UP as we drove home from 11:30 AM to 2 PM.

Had a long nadir and went to bed at 7 PM. Woke at 10:30 PM with a severe gut ache - took 1/2 Percocet, Zantac, and Senna-S which seemed to help.