2nd ASCT - Day 134 - September 29 2012

Woke again this morning feeling "not quite right" and a tad spacey from the Neurontin. I have not taken anymore. I took a total of 3 pills over Tuesday and Wednesday, September 25 and 26 2012. My neuropathy doesn't seem as bad now.

I walked Kemmer from home down Smelter Avenue. I was probably overdressed for the walk, but it was almost dark.

2nd ASCT - Day 133 - September 28 2012

Slept pretty well and had a good morning and took Jonah to have the tires rotated and balanced. 

When I got home, I really noticed that I am very puffy all over - especially my face, chest, and abdomen. By lunch time, I was just exhausted and had a long nadir (nap) greater than 2 hours. 

I went to visit Flossie Miller Johnson, 86, at the Lost Rivers Nursing Home in Arco. I have known her all my life and she has suffered a series of strokes which leaves her memory failing. She had just had her hair done and we visited the best we could considering her memory issues.

When I got home, I was EXHAUSTED AGAIN and had another 2 hour nadir. I am like the Michelin Tire Man swollen all over - weighed myself and I've gained maybe 7 pounds since Tuesday (162.8) - my skin even hurts from being stretched - I don't know what is up. Perhaps I CANNOT take neurontin and I will skip it tonight. I read that Zolinza (vorinostat) can cause peripheral edema, but it seems weird that it would be causing swelling now that I'm off of Zolinza (Day 10 or the 14 days off). Other than fatigue, I feel fine.  The swelling and weight gain is from the Neurontin. I looked Neurontin up and I had ALL of these - no more neurontin for me.

Walked Kemmer this morning on the BLM Road South from the Cattle Guard - only went 1.02 miles total. Met up with Dianne Layne Parker on the way back to Jonah.I am so swollen, I feel so sluggish.

Walked Kemmer tonight just 0.71 miles at at stroll.

2nd ASCT - Day 132 - September 27 2012

I took 100 mg of Neurontin last night at bedtime - it worked great again for reducing the neuropathy burning sensation in my left foot and leg. But, unfortunately, only until 2 AM...so, I decided to take another 100 mg at 2 AM. It helped the neuropathy, but left me feeling hung over this morning and a tad spacey. I am so sensitive to medications, I should have known better. Tonight, I'll just go with 100 mg once...give myself time to adjust to that dosage before I do any increasing. Did you know that you cannot take any medication with magnesium in it for at least 2 hours before and after taking Neurontin?

I worked on genealogy all day long and my brain is twisted and fried - but, I'm getting closer to understanding my maternal side of my family.

2nd ASCT - Day 131 - September 26 2012

Well, I gave 100 mg of Neurontin (gabapentin) a try at bedtime last night. It worked great and reduced my neuropathy burning in my left foot and leg by half. So, that means I went from 6 on the 1-10 scale to 3. I was able to sleep, but still woke every 2 hours. Didn't feel hung over this morning and I think I'll be able to take Neurontin at least 100 mg at night.

My transplant onoclogist, Han Myint, MD at the University of Colorado Hospital has retired his position effective September 13  2012 (I was notified via certified letter). He has been replaced by Clay Smith, MD from the University of Pittsburgh. 

I have my follow-up UCH appointment with Dr. Clay Smith on 15 October 2012. Here is link to Dr. Clay Smith's Vita http://www.cudoctors.com/find-a-doctor/profile/?providerID=4647 

I wrote Dr. Clay Smith a letter of introduction and sent it snail mail (U.S. Postal Service):

18 September 2012

Clay Smith, MD

UCH

Re:      Judy Malkiewicz (BD 12-08-1950)

Hi Dr. Smith, Just a letter of introduction.

My name is Judy Malkiewicz and at the age of 60, I was diagnosed with High Risk Monocolonal IgG Kappa Multiple Myeloma on May 24, 2011 after a routine physical exam blood test revealing anemia with no bone lesions or kidney involvment. I had 80 percent neoplastic plasma cells with cytogenetic 4:14 and deletion of 13 changes in my bone marrow; M-Spike of 3.0. I started induction chemotherapy of IV Velcade, IV Dexamethasone, and PO Revlimid on June 13 2011 and did 3 ½ cycles. I was admitted to the University of Colorado Hospital (UCH) for a four day course of VDT-PACE (Velcade IV, Dexamethasone IV, Thalidomide P, Cisplatin (P) IV, Adriamycin IV, Cytoxan IV, and Etopside IV) as my cytogenetic profile changed to include 1q21 with good response.

Harvested my stem cells and had an autologous stem cell transplant on 13 September 2011. My bone marrow 50 days after transplant was deemed in Stringent Complete Remission on 2 November 2011; M-Spike of 0.1.

Complication: As a result of my Trifusion Hickman Catheter and implanted port, I developed blood clots in the right atrium of my heart. The Trifusion Catheter and Bard Power Port were removed and I continued Fragmin for 9 months when the clot was thought be resolved 2 Aug 2012.

I went on Maintenance Chemotherapy of Velcade/Dex/Revlimid and Zometa started 1 December 2011 at home in rural Idaho. Unfortunately, my M-spike increased to 0.59 on 27 Feb 2012 and I returned to UCH in Colorado.

Relapse confirmed with Bone Marrow Biopsy with greater than 50% plasma cells on 9 Mar 2012 with continued 4:14 and 1q21 cytogenetic changes. Admitted UCH for PICC Line Placement and received 2 cycles of VDT-PACE 16-20 March 2012 and 13-17 April 2012.

Bone Marrow Biopsy on 3 May 2012 reveals 1 percent plasma cells with 1q21 (3.5 percent) and 4:14 (0.3 percent) cytogenetic changes.

Admitted UCH for 2nd Autologous Stem Cell Transplant 11 May 2012 with 1 week BEAM Chemotherapy prior. Melphalan given 16 May 2012 and my 2^nd ASCT stem cells were given to me on 18 May 2012. Returned home to Idaho on Day 28.

2nd ASCT Follow-up on Day 55 at UCH, 12 July 2012, showed M-Spike of less than 0.1 and bone marrow biopsy shows persistent abnormal cytogenetics 4:14 and 1q21.

Started continuing chemotherapy of Velcade and Dex 20 Aug 2012 and Vorinostat (Zolinza) 400 mg 14 days on 14 days off added 4 Sept 2012.

My Day 152 Post 2^nd ASCT follow-up appointment is with you on 17 October 2012. I look forward to meeting you and hope you have a high-risk plan for me because I have at least 30 mountain lake hikes right in my back yard that I want to visit at the TOP OF IDAHO~ The BEST place in the world to live UNLESS you need specialty medical care~

Sincerely,

 Judy Malkiewicz, Mackay, Idaho 83251

I am anxious to meet Dr. Clay Smith and hopefully we'll know if the Zolinza (vorinostat) is working to hold my M-Spike down by the time of the October 2012 appointment.

I walked home 0.71 miles with Kemmer after dropping Jonah (1999 Passport) off for a brake check.

I wore my N-95 mask because the air quality is still not good from the forest first north of Mackay. We've had smoke in Mackay most days since lightning started the Halstead and Mustang Complex Fires on 27 July 2012 and 30 July 2012. We have never had a summer like this and I HATE IT!

2nd ASCT - Day 130 - September 25 2012

Got up at o'dark thirty and left for Twin Falls, Idaho at 4:45 AM to make my 8:20 AM appointment time with Dr. Padavanija at the St. Luke's Hospital MSTI.  Had to stop once to let a female mule deer cross in front of me just below Mackay. Almost the entire drive was in the dark, so I had to be extra cautious.

Technician Anita drew my blood on a single poke - since I have no central access, I have to have my blood drawn from my arm each week. Anita uses a small butterfly needle and a light tourniquet and has great success reusing one of  2 of veins in the elbow area of my left arm.

My CBC was good. My white blood cell count was 4.9 (norms 4.5-11.0); hemoglobin normal at 12.8 (norms 12-15); and my platelets are recovering from last week at 167 (norms 140-440). Last week my platelets were low at 128.

My comprehensive chem panel is improved this week too. My creatinine is still slightly high at 1.06 (norms 0.52-1.04), but really came down from 1.26 last week. My BUN is normal on the high side at 17 (norms 7-17) - So, these reflections of my kidney function are good this week. The transient increases I've seen were probably due to Zolinza (vorinostat).

I was careful to drink lots of fluids again this week:

9/19/2012   3,400 ml

9/20/2012   3,500 ml

9/21/2012   2,500 ml

9/22/2012   3,000 ml

9/23/2012   3,500 ml

9/24/2012   3,500 ml

9/25/2012   3,500 ml

I waited for Dr. Padavanija, but not too long after technician Mark took my vital signs. My pulse never acts up when I'm at the doctor's office. I was tired.

I had my list ready for Dr. Padavanija.

Notes to Dr. Padavanija  25 Sept 2012 (My Day 130 Post 2^nd ASCT)

1.    Velcade neuropathy in L foot, leg, and fingers is terrible. Experienced as like stepping on a HOT IRON and radiating up the back of my leg behind my knee (STILL waking me at night, necessitating ½ Percocet), with only slight radiation up to my left groin area. I’ve rated the neuropathy 9/18/2012 as 4 and today as a 6-7. Consider decreasing dose of Velcade or skipping a dose. Will try neurontin or some other drug as I cannot sleep at night due to pain.

2.    Continued post-shingles pain R back at lower scapula with no shingle outbreak.

3.    Zolinza Experience (1^st Cycle Completed started 4 Sept 2012 and ended 17 Sept 2012)

·      Improving dry mouth and tongue.

·      Taste improving

·      Sustained tachycardia (90-98) and weakness

·      Leg cramps and charley horses in both legs and feet when stretching in bed

·      Continued fatigue, but still able to do all activities

4.    Creatinine and BUN Concern (Need CHEM PANEL today 25 Sept 2012) See Zolinza (vorinostat) causing “transient increases in Creatinine”'
  Creatinine 4 Sept 2012  1.09 (norms 0.52-1.04)   BUN nl.
  Creatinine 6 Sept 2012  1.26   BUN 19 (norms 7-17)
  Creatinine 11 Sept 2012 1.23  BUN 26
  Creatinine 18 Sept 2012 1.26  BUN 17

Dr. Padavanija and I decided that it would be best to HOLD the subcutaneous Velcade today September 25, 2018 because of my neuropathy complaints. I will take the dexamethasone 10 mg today and tomorrow as scheduled. I hate holding the Velcade because I think I am very responsive to it in the multiple myeloma department, but I cannot live my life with the degree of neuropathy that I'm currently experiencing. 

Dr. Padavanija thought it best that I try a neuropathy medication and we settled on Neurontin 100 mg once a day at night to begin with and gradually increase if it helps. So, I went to Walmart and picked up my prescription of Neuroton - one more pill to take - ugh...but, I'm hoping I can tolerate it because I CANNOT sleep at night due to the neuropathy. 

I will continue to go to Twin Falls every Tuesday to be evaluated and treated. I'm glad I have Dr. Padavanija on my team because she always listens to me and is responsive to my needs.

When I got home from Twin Falls, the air quality was much improved, so I wore my N-95 mask and walked Kemmer on the Mine Hill for 0.51 miles because someone was shooting down the road from us and I decided it was not safe.  Kemmer managed to find the same decaying skunk before I saw her - tried to roll on it - now smelling of SKUNK. I managed to stop Kemmer, but not before he had the smell of SKUNK on her face. When I got home I used Nature's Miracle SKUNK ODOR REMOVER on her face and it worked!