Relapsed High Risk Myeloma - Update July 15 2013

Didn't sleep at all. Finally, got up at 2 AM and sat on the sofa until daylight. My guts are an ACID-MESS. I took Kytril with little help. My legs are creepy and both of my hips hurt. I took Zantac and Prilosec...nothing seemed to help.

Since I was up all night, I was tired all day and didn't do anything except go for the mail for my father. Worked on my geneology files some. I'm very careful not to bump myself in any way, so I won't bruise or start to bleed.

I continue to to have neuropathy in both feet - most of the neuropathy is on my left side from my foot to my groin, but I also have a good case in my right heel. Plain acetaminophen helps the most. My legs are quite weak and if I squat down, I need help getting up.

Jani, Robbyn, and Faye worked on putting the transfer drawings on seven (7) tea towels with a vintage 1950 pattern of ducks that the Mackay Women's Ladies Aid will stitch. It was quite the project and it took the 3 novice "tracers" most of the morning. I did a lot of watching since my hands are shaky from Dex and my fingertips numb from neuropathy - sewing is not in my future.

Here is a sample.

We took a drive to the Mt. McCaleb Cemetery and on our way home saw a blue heron right in the middle of town. We  drove by Ron's again, but he is still gone.

Faye and Robbyn packed up, so they could catch their flight back to Denver DIA from Idaho Falls at 4 PM. They left Mackay around 2 PM. L to R: Jani Malkiewicz, Faye Hummel, Judy Malkiewicz, and Robbyn Wacker with Kemmer. Even though they were here just under 24 hours, it was good visit!

 Judy Malkiewicz and Robbyn Wacker as Robbyn returns to Colorado.

After they left, I had an almost 1 hour long nadir. Jani made dinner and another day in paradise. My guts continue with BURNING FIRE ACID.

Relapsed High Risk Myeloma - Update July 7 2013

"My people" from Colorado packed up and departed Mackay, Idaho this morning for Greeley, Colorado. L to R: Jan Martin, Judy Richter, Judy Malkiewicz, Nancy White, and Walt Richter.

I spent the entire day one-with-the-sofa except for a quick run to Ivies for milk. Jani changed all the beds and did the laundry, mowed the lawn, did the weed eating and had a short nap.

I had really creepy legs today and took plain Tylenol (acetaminophen), which really helped a lot to calm them down. My GI tract is going QUICKLY south again with no reason why. I have not been on any chemo for a week (my off week). Developed a new spontaneous bruise on the inside of my left calf too.

The little filly behind my house was have a great time today --- running circles around her mama mare - just like puppies do sometimes - we call them "lune-spells".

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.

2nd ASCT - Day 138 - October 3 2012

My usual rotten, never more than 2 hours at time, sleep is back. Waking to left foot and leg neuropathy burning and/or to pee. I took a plain Tylenol and that helped some. I finally just got up at 4 AM rather than flip-flop around in bed AWAKE.

My tongue was all coated early this morning, so I took a fluconazole and it seems much better this morning. My taster is going, but still working some - Zolinza side effect.

Went early to put my father's compression stockings on - a tad easer today - but, still a struggle. I take him tomorrow to the Interventional Radiologist in Blackfoot, Idaho to be get his (HOPEFULLY) last evaluation on the arterial stents that have been placed via ultrasound, followed by a meeting with Dr. David Shelley. We are going to ask Dr. Shelley if the compression stockings are okay to use in light of the arterial issues. If he says  yes, I'm going to buy a couple of aids to getting compression stockings on and off. With the neuropathy in my finger tips - it will be necessary. I don't have much pain in my finger tips, but I do have numbness making some fine motor activities very difficult - like opening a zip-lock baggie.

I walked Kemmer on the Mine Hill 1.38 miles. We had a cold spell hit today and it was about 51 degrees compared to almost 80 yesterday - with gale force winds from the north - bringing in more forest fire smoke. So, I wore my jacket and N-95 mask.

My old friend, back pain across my scapula returned today while I walked - but, I just kept going.

2nd ASCT - Day 135 - September 30 2012

Feeling much better today - no spacey feeling and the swelling I had in my face and body seems to be letting up (I'm sure Neurontin related). I had more neuropathy burning in my left foot and leg, but I took a plain Tylenol (acetaminophen) and that helped.

I helped at the Mackay Food Bank to fill and label the boxes.

I walked Kemmer twice today. This morning, we walked the BLM Road South from the Mine Hill Cattle Guard (1.38 miles) and this evening from home to the Big Lost River Smelter Bridge (1.30). My legs are getting stronger, but they still aren't my "OLD LEGS".