Relapsed High Risk Myeloma - Update July 2 2013

Jani and I arranged to have Andrea Marinac come and stay at the house with our 3 dogs and her cute little dog, Koko since we were anticipatingag a 2-day stay in Twin Falls, Idaho with a motel stay to begin Cycle 3 of Bendamustine, Revlimid 5mg/Dex 40 mg. 

My chart below may not be correct - I have to study the original documents.

We arrived in Twin Falls just in time for my 9:40 AM appointment. Everything was running late in the MSTI Infusion Center. Had my blood drawn and then we waited in the examine room while they searched for the results of my bone marrow biopsy done 26 June 2013.

Dr. Padavanija came in and said the bone marrow biopsy results weren't any better - at least 95% and/or 100% plasma cells. However, the M-Spike had dropped from 1.3 to 1.2. I didn't get any hard paper copies of the bone marrow biopsy results and will have to wait until next week.

My white blood cell count (fights infection) is low, but okay for me at 1.9 (norms 4.5-11); ANC (absolute neutrophil count determines if I should wear a mask or not) is low, but okay for me at 1.24 (norms for 1.9 to 4.8); platelets MISERABLY LOW at 17 (norms 140-440) and I have not been on any chemo for the last week. They don't like to intervene with a platelet transfusion until the platelets drop below 10 because you make antibodies against platelets and they only last 1-2 days in your body; They did not draw a LDH today.

My Chem Panel was good for my kidney function - continued mild kidney failure.

I continued back to the MSTI Infusion Room for my monthly Aredia 30 mg intravenously. I remembered to take my Claritin and Tylenol by mouth. This always helps the aches and pains that Aredia can cause post-infusion. They cannot tell you take Claritin/Tylenol because no evidence based (research) data exists on its use - but, IT has ALWAYS helped me with Zometa, Aredia, and Neupogen infusions.

While I was infusion, Dr. Padavanija called Clay Smith, MD at the University of Colorado Hospital. He was involved in an emergency, but did get back to Dr. Padvanija. Since the Bendamustine/Revlimid/Dex doesn't seem to be working, they decided I should switch to:

Option: carfilzomib intravenously 2 days in a row/pomalidomide 21 out or 28 days orally/dex 40 mg weekly

I've been on both of these chemotherapy medications before, but not in his combo.

Summary of Chemotherapy Agents I've Had Since Diagnosis 23 Months Ago:

1. Revlimid (lenalidomide)
2. Velcade (bortezomib) 
3. Decadron (dexamethasone)
4. Thalidomide (took a couple of days and discontinued due to neuro complications)
5. Cisplastin
6. Adriamycin
7. Cytoxan
8. Etoposide
9. Carmustine
10. Cytarabine
11. Melphalan
12. Vorinostat (Zolinza)
13. Carfilzomib (Kyprolis)
14. Pomalidomide (Pomalyst)
15. Bendamustine
16. Carfilzomib Kyprolis)/Pomalidomide (Pomalyst)/Dex

I will still require "rescue blood and platelet transfusions as my platelets are not not likely to recover on this chemo cocktail. They will have to get my medical insurance approval first. That, along with 4th of July 2013 Holiday probably will delay the start until next week. The carfilzomib (Kyprolis) is given intravenously 2 days in a row and the pomalidomide (Pomalyst) is given by mouth for 21 out of 28 days.

After the Aredia ran intravenously, Jani and I went to get my hair cut. My hair has been looking like a very messed up Einstein look.

Taco Bell and Shopko. I needed shorts for a "michelin-tire-sized" girl.

On the way home, we saw a grass fire near Richfield, Idaho, called the Jim Brown Fire (below).

Then, once in our Big Lost River Valley, there was a larger fire just south of the King Mountain roads (I think they are calling it the Beaver Creek Fire). It was raining north of the fire in Leslie, Idaho - so, hopefully the moisture will go south and put the fire out.

My post-hair cut look once home - my post-chemo hair continues to have its own curl and fuzz to it, so it is HARD to control - but, my ugly Einstein look is better.

We had dropped Jonah off at M&C Lube for an oil change when we left town, so we stopped so I could pick him up and drove him home.

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.

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!

Cycle 4 Week 1 Day 1 Carfilzomib/Dex and Day 1/21 Revlimid 10 mg - January 30 2013

Drove to St. Luke's Hospital in Twin Falls, Idaho this morning for my monthly visit with Dr. Padavanija and the beginning of Cycle 4 Carfilzomib/Dex. Roads were dry and the 135 mile drive pleasant.

Waiting for my appointment at St. Luke's Hospital January 30 2013.

Dr. Padavanija had just talked with Dr. Clay Smith at UCH (Aurora, Colorado) via telephone, so we were all on the same page.

Remember, during my last Cycle 3, we HELD carfilzomib (27 metered square) and cytoxin (500 mg) for low counts, so I have not had any chemo since 9 Jan 2013. However, I continued to take Cycle 3 Revlimid 10 mg finishing 22 Jan 2013.

History of Carfilzomib/Dex/Cytoxan/Revlimid USE (Each Cycle consists of 3 weeks (2 times per wk) followed by a rest week).

Cycle 1: Start 10 Oct 2012 with Revlimid 10 mg (1/21).

Cycle 2: Start 27 Nov 2012 with Revlimid 10 mg (1/21).

Cycle 3: Start 2 Jan 2012 with Revlimid 10 mg (1/21). Added Cytoxan 500 mg. HELD Carfilzomib and Cytoxan Week 3 of Cycle 3 for low counts and continued Revlimid 10 mg

Cycle 4: Start 30 Jan 2013 with Revlimid 10 mg (1/21). HELD Cytoxan until counts recover

My 30 Jan 2012 CBC results: WBC 2.2 (norms 4.5-11) slightly up , ANC 1.44 (norms 1.9-8.8) up , Hg 8.9 (norms 12-16) slightly down, Platelets 141 (norms 140-440) -woohoo normal), LDH 583 (St. Luke's norms 313-618) normal. 

Here is a chart looking at the values overtime.

Since my Hg remains low at 8.9 with an elevated MCV (mean corpuscular volume or the average size of a red blood cell) at 102.5, Dr. Padavanija drew a B12 and thyroid levels. I don't have those results yet. My Chem Panel was normal except of a slightly low Potassium (K at 3.4) and I was advised to eat more banana and potato).

Dr. Padavanija was in a agreement with conscious sedation for my next bone marrow biopsy and has scheduled it for 20 Feb 2013 at St. Luke's Hospital, Twin Falls, Idaho – YEA! At least I never have to look at that torture anymore.

Dr. Padavanija looked at the neck incision for my Bard Power Port which was placed 20 Dec 2013 and a stitch seems to be working itself out.

I also had a skull x-ray of the small hard lesion growing on my forehead and an x-ray of my left hip which hurts only when I lie on that side (results pending).

On to the Infusion Center where I was pleasantly surprised that they had ordered and obtained the un-foam padded Huber needle for my Bard Power Port along with plain tegaderm vs the tegaderm impregnated with white film which my skin reacts to. I've been putting Emla Cream (deadens the area they put this sorta big needle in to) on my port site and it works great for me.

I received my monthly dose of Aredia 30 mg. I remembered to take Claritin and a plain Tylenol with it, so I'm hoping I have few, if any, side effects this month.

Stayed at the motel in Twin Falls and woke in the night with an Aredia headache all over my head. I drank more water and went back to sleep. Returned to St. Luke's Hospital Infusion Center for my 2nd day of carfilzomid/dex. RN Vicki was able to get me in and out in less than an hour, which I am always appreciative of because of the 2 1/2 hour drive home to Mackay.

Was home by noon and went to get Kemmer at Ron's. Stopped at Ivies (grocery store) wearing my mask. I always try to go while the children are still in school to avoid their potential germs.

Came home and walked Kemmer 0.54 miles around the neighborhood. Not much of a walk, but I was tired.