Relapsed High Risk Myeloma - SPEP with M Spike, Immunoglobulins, and Free LIght Chains Update June 7 2013

My SPEP Results from blood drawn 4 June 2013. M-Spike is unchanged at 1.3 (it was also 1.3 last on 23 April 2013). However, it says in the "GAMMA" region and I've never had that comment before. In short, it says "essentially, unchanged since last assessment" - I'll take that! Better unchanged than increasing!

My IgG immunoglobulin is slightly increased from the 23 April 2013 when it was 1702

IgG is at 1765 now on 4 Jun 2013. Remember, my cancer is carried on the IgG.

IgM is LOW at 10

IgA is LOW at <13

My free light chains are 3.50 and I'm not sure how that has changed yet, if it has. This is the lab value that might not show much since I am a non-secretor. 

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.

High-Risk Relapsed Myeloma Update University of Colorado - April 16 2013

Met with Clay Smith, MD right on time. He is always such a good listener. We went over my lab values for today. My LDH is high at 367 (norms 98-192).

My Immunoglobulin G value is sky-high - NOT GOOD at 1247. Looks normal according to the norms of 700-1643), but my cancer is carried on the IgG. My IgG value was 3,422 on 18 Jun 2011 just after my initial diagnosis on 24 May 2011 prior to any treatment.

 My immunoglobulin is still way too low at 10 (norms 66-436).

 My immunoglobulin M is still way too low at <25 (norms 43-279).

My CBC shows white blood cells low at 2.3 (norms 4.5-11); ANC (absolute neutrophil count low at 1.00); hemoglobin low at 8.5 (norms 12-16); platelets very low at 39 (140-440); LDH 367 high.

 My Chem Panel shows mild kidney failure with creatinine at 1.28 (norms 0.52-1.04); BUN 18 (norms 7-17); and GFR 53 (norms > 60). My glucose is high at 192 (norms 70-112), but they won't want to intervene until the glucose exceeds 200. I can control the glucose by reducing my sugar intake.

I will have to wait for my SPEP myeloma test results, but since I'm a non-secretory patient, they are not that valuable. Dr. Smith wants me to schedule a bone marrow biopsy with Dr. Padavanija at St. Luke's Hospital in Twin Falls, Idaho as soon as I return to Idaho on 18 April

2013

He thinks my low wbc's, platelets, and hemoglobin are due to either too much pomalidomide suppression and/or my cancer plasma cells are unresponsive to the pomalidomide and growing uncontrolled and squeezing out the the normal bone marrow elements (wbc, platelets, and hemoglobin). Only a bone marrow biopsy will determine this.

For now, we hold the pomolidomide. So, I won't be on any chemo for now. Dr. Smith will also discuss with Dr. Padavanija raising the low threshold of hemoglobin for packed red blood cell transfusion. I'm not sure what hemoglobin value he was thinking of. Typically, they do not transfusion until the hemoglobin is less than 7.0. But, since I am symptomatic with shortness of breath, it merits raising the hemoglobin value for transfusion for me. Will give me more energy - hopefully.

If the pomalidomide is not working, Dr. Smith admitted that I'm in a "tough situation". If this is the case (as determined by bone marrow biopsy), I could look for a clinical trial somewhere that does NOT require total relocation to the trial location and see if they would accept me or I could opt to just stop all treatment. However, Dr. Smith warned that many of the clinical trials have minimum lab value requirements and I might not meet those at this time. He is will to help me with the clinical trial application if I go that way. He will also contact Mayo Clinic-Scottsdale for any suggestions they might have. I told Dr. Smith I didn't think I was ready at this point to stop treatment.

As far as the Dex 40 mg and spreading it out over 4 days goes - this is not optimal, but he said I could do it. Might want to switch to Prednisone in the same dosage taking it every other day. Will discuss with Dr. Padavanija.

Dr. Smith does not want me doing much until my platelets recover to at least 60 - currently at 39. (Norms 140-440). No riding the 4-wheeler.

Dr. Smith did a thorough physical exam and I told him about my left-sided neck and head pain and how it responded to migraine medication, Frovea. He worried it might be due to the low platelets and warned me about Fragmin use with such low platelets.

Discussed the right eye "floater" deal and he also worried that his was due to low platelets and encouraged me to see the ophthalmologist again if it changed at all. It persists as a brownish blotch in the shape of "Africa".

Just before we left, we met Dr. Smith's RN Sare.

All the snowy roads were dry on the way home to Greeley and we made it just before 4 PM...long day. Stopped for take out Chinese Food - yum!

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!

Bone Marrow Biopsy Results and MORE - February 27 2013

Drove to Twin Falls, Idaho in very cold Minus 2 temperatures, which gradually warmed up as I left the Big Lost River Valley and approached the Magic Valley.

Highway 93 to Carey, Idaho. Look in the middle and you'll see an avalanche chute.

I delivered my 24 hour urine collected from 26-27 Feb 2013 kept in a cooler with ice to the St. Luke's Hospital Lab. 

My appointments at St. Luke's Hospital, Twin Falls was all mixed up and they didn't have me down for a lab draw prior to my doctor's appointment and no Infusion Room appointment. So, I waited while very nice receptionist Pamela got it figured out for me.

My hair is growing again and I actually have bangs!...me and Michelle Obama!  However, my hair is WILD and won't do anything I try to do with it. I had to shave my legs for the first time this morning for a very little stubble.

They finally drew my blood from my Bard Power Port and and waited while the results were done. Dr. Padavanija came in and told me my 10th bone marrow biopsy results "weren't good". 

Evidently, I have been looking at the apples to oranges vs apples to apples on my previous bone marrow biopsy results. When I reported that my plasma cell percentage in my bone marrow was 60 percent on 16 Oct 2012 and then down to 40 percent on 20 Dec 2012, I was reporting TWO DIFFERENT methods - flow cytometry for plasma cells and a manual count of plasma cells from the slides. Evidently, the manual count for plasma cells is the most accurate. You'd think I know this before the 10th Bone Marrow Biopsy!!!

On 16 Oct 2012, the flow cytometry was 27 % plasma cells and the manual count was 60 %.
On 20 Dec 2012, the flow cytometry was 40 % plasma cells and the manual count was not done. Dr. Padavanija sent Pathology a request to do it today, and the manual count was 50 %.
On 20 Feb 2013, the flow cytometry was 26 % plasma cells and the manual count was 64 %.

On the cytogenetics report, I have two lines of abnormalities with a final note indicating, "This result is indicative of persistent disease. The findings of abnormal metaphases in a patient with myeloma is also an indicator for increased cell proliferation, which has been shown to be predicative for shorter event-free and overall survival (Haematologica, 96(1): 87'11). Clinical correlation is required."

My peripheral blood on 20 Feb 2013 was summarized as:
1. Moderate anemia with slight macrocytosis (oxygen carrying ability and energy)
2. Severe leukopenia/neutropenia (ability to fight infection)
3. Moderate thrombocytopenia (ability clot blood)

SPEP Blood Values from 20 Feb 2013:

My M-Spike was sligthtly down to 0.3 (20 Feb 2013) from 0.4 (22 Jan 2013 and 20 Dec 
2012).
M-Spike Hx since 2nd ASCT (autologous stem cell transplant):
20 Feb 2013      0.3 (Idaho)
22 Jan 2013      0.4 (UCH)
20 Dec 2012     0.4 (Idaho)
27 Nov 2012     0..5 (Idaho)
20 Nov 2012     0.5 (Mayo Scottsdale)
16 Oct 2012      0.3 (UCH)
2 Oct 2012        0.4 (Idaho)
4 Sep 2012       0.3 (Idaho)
13 Aug 2012     0.1 (Idaho)
8 Aug 2012      <0.1 (Idaho)
18 May 2012     2nd ASCT (UCH)

My M-Spike history is not very valuable since I am a non-secretory myeloma patient where the bone marrow values are more valuable than the blood values.

Total Protein: normal at 6.3 (norms 6-8.2)

IgG low at 556 (norms 700-1600)
IgA low at <13 (norms 70-400)
IgM low at <8 (norms 40-230)

Lamba Qnt FLC results BELOW reportable range of 1.9 (norms 5.7-26.3)
Kappa Qnt FLC 3.64 (norms 3.3-19.4)
Kappa/Lamba FLCR Unable to calculate ratio since values below reportable range.

Dr. Padavanija called Clay Smith, MD at the University of Colorado while I waited today, 27 Feb 2013 and they decided my bone marrow biopsy results mean I have failed on carfilzomib/dex/revlimid with a couple of cytoxan doses. I will discontinue carfilzomib/revlimid/ and cytoxan today. 

They will attempt to get approval to put me on pomalidomide (Pomalyst) 21 out of 28 days and Dex 40 mg (Days 1, 8, 15, 22. The approval of the pomalidomide may take weeks, but they wanted me to start the Dex 40 mg today. I asked if I should continue Revlimid 10 mg until the decision is made on the pomalidomide and Dr. Padavanija said no. So, I will continue off chemotherapy for another week or 2. Hopefully, my lab values will have time to recover during this time. 

The good news is that pomalidomide (Pomalyst) is a pill taken daily at home and I will not have to go to St. Luke's Hospital two days a week with a motel stay like I have been doing for carfilzomib chemotherapy. I will have to week blood tests once I start pomalidomide.

The Myeloma Beacon had an article about a French study on polalidomide today [French Study Provides Further Insights Into Pomalyst’s Efficacy, Safety, And Dosing
[ by Virginia Li | Feb 27, 2013 4:47 pm |] which was interesting. Click here to go to article:
http://www.myelomabeacon.com

Today's lab values:
White blood cells (WBC) continue low at 2.1 (norms 4.5-11); Absolute neutrophil count (ANC) continues low at 1.25 (norms 1.9-8.8); hemoglobin continues low at 9.8 (norms 12-16); and platelets continue low at 128 (norms 140-440).
My LDH was up at 633 (norms 313-619), a gross indicator of inflammation and rapid cell growth.

My kidney function blood test showed an increase in creatinine again to 1.11 (norms 0.52-1.04).

I received my monthly bone building medicine, Aredia 30 mg intravenously. I took over-the-counter Claritin and 500 mg of Tylenol to decrease the headache, body aches, and flu like symptoms of Aredia. 

I received the  40 mg of dex intravenously today since my stomach has been so upset. Dr. Padavanija said the IV Dex would also upset my stomach. She gave me a prescription for Carafate 1 GM/10 ml Suspension to be taken 4x per day which will be hard for me since it has to be taken on an empty stomach not within eating for 1 hour before or 2 hours after eating and not within 30 minutes of taking any antacids...we'll see how I do...because I'm a snacker.

They were able to schedule the MRI of my hip and pelvis for tomorrow morning, 28 Feb 2013, so I kept my motel reservation for tonight, 27 Feb 2013 even though I didn't get any chemotherapy today and I won't get any tomorrow. 

I also got a new prescription for oxycodone 5 mg immediate release tabs to replace my use of Tylenol and Percocet (which has Tylenol in it). They are very small pills, but I think I can cut them in half for a 2.5 mg dose.

Happily went to Taco Bell for dinner!  :) That part of my life GOOD!

SPEP Results From January 22 2013

My SPEP results came today for 22 Jan 2013. My M-Spike continues at 0.4 (norm zero). The M-Spike remains unchanged from 20 Dec 2012 when it was 0.4 too. However, Clay Smith, MD at UCH doesn't put much stock in my M-Spike values since I am non-secretory or hypo-secretory, but I think my M-Spike is somewhat reflective of my bone marrow plasma cell percentage. For example, an M-Spike of 0.59 equated to 60 percent plasma cells in my bone marrow, while an M-Spike of 0.4 equated to a 40 percent plasma cells in the past.

 M-Spike history since 8 Aug 2012.

My free light chains are difficult to interpret since I am non-secretory or hypo-secretory.

My immunoglobulins G, M, and A. Still pretty non-existent immune system. History to 22 Jan 2013.

UCH Follow-up Appointment in Aurora Colorado Day 249 After 2nd ASCT - January 22 2013

Jani and I went to UCH (University of Colorado Hospital) this morning and had my lab values along with my monthly SPEP blood tests drawn via my Bard Power Port. Per usual, my goofy Jani helped with the wait time.

 Who says two Polish girls can't fit in a single recliner???

RN Cara had me turn my neck to get the blood to flow out of my port.

My white blood cell count is even lower than last week at 1.9 (norms 4.5-11); hemoglobin slightly lower than last week at 9.0 (norms 12-16); platelets higher than last week at 106 (norms 140-440); and ANC (absolute neutrophil count) lower than last week at 1.0 (norms 1.9-8.8). This means I still need to protect myself with a mask and good hand washing.

My kidney function blood tests continue normal with a creatinine of 0.98 (norms 0.52-1.04); BUN 11 (norms 7-17) and GFR 58 (norms less than 60). 

My immunoglobulins ( reflection of my immune system) are still pretty much non-functioning on Day 249 after my 2nd Autologous Stem Cell Transplant). I asked when they will recover and I'm not clear, at all, when this will (if ever) occur.

The multiple myeloma SPEP blood test take several days, so I'll have to wait on those results per usual.

Had a nice visit with Dr. Clay Smith (UCH) and he answered all of our questions. Dr. Smith thought I looked tired, so at least we are on the same page with that - I am tired. He thinks this probably due to my hemoglobin value of 9.0 (norms 12-16).

He thinks I need to forego the added Cytoxan 500 mg weekly to see if my blood counts will recover. And if they do recover, maybe add Cytoxan 300 mg weekly. Might want to reduce Revlimid 10 mg to 5 mg, but he wants me to do one change at a time so we can see what happens. Dr. Smith thinks I should see a dermatologist for the small bump on my forehead and get it biopsied - oh joy. Continue on Fragmin 15,000 unit injections - I HATE those injections ONLY BECAUSE The pre-filled syringe needles are DULL DULL DULL! I should write the company a letter! 

Can continue dex schedule of: Wednesday's 20 mg; Thursday's 4 mg; and Sunday's 10 mg for a total of 34 mg per week.

As for the small bump on the right side of my forehead, Dr. Smith advised me to see a dermatologist and have it biopsied. 

Need to get another bone marrow biopsy in about a month to check where I'm at since I am a non-secretory or hyposecretory multiple myeloma patient. This means that my cancerous plasma cells don't send the usual blood test elements in to my bloodstream. Hence, I have to be followed with bone marrow biopsies - I've had nine (9) in 19 months since diagnosis May 2011. I told Dr. Smith I wouldn't have a bone marrow biopsy again without conscious sedation and they don't offer that option at UCH.

I really like Dr. Smith and he has an excellent memory. Me and Dr. Clay Smith, January 22 2013.

Jani and got hamburgers at the UCH Cafeteria and ate them outside in the brilliant, warm sunshine.

Waiting at Valet Parking UCH.

 Temperature at UCH this afternoon 66 degrees - felt wonderful!