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".

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!

2nd ASCT - Day 129 - September 24 2012

It RAINED during the night and air is much clearer this morning!

Sleep eludes me because of the neuropathy in my left foot and leg - will discuss with Dr. Padavanija tomorrow at my appointment in Twin Falls, Idaho.

Had good energy today. I mowed my lawn for the first time since 1 June 2011 (just after my multiple myeloma diagnoses). I wore a mask that people who need to clean up lead paint wear to protect themselves. My transplant rules indicate that I should NOT mow lawn or play in the dirt for a full 6 months post-transplant. I'm only 4 months post-transplant, so I thought the mask was in order. The mask was more comfortable than it looks.

2nd ASCT - Day 128 - September 23 2012

Forest fire smoke lifted some and I was able to walk Kemmer on the Mine Hill this morning for 1.38 miles. Jonah in the distance.

Honest, these are pictures from today...even though they look just like every picture I ever take of Kemmer and me.

 Not a single car on Mackay Main Street this Sunday morning at 10 AM.

 

It RAINED - YEA!!!! And I saw 9 (NINE) eagles flying over my house this afternoon - NINE of them!!!! It was WONDERFUL.

We can only hope it rained over the forest fires north of Mackay too!

My father's left leg is quite swollen compared to his right, but it is warm to the touch and has a pulse in his foot - so, not to worry right now.

 He felt well enough to mow his lawn this afternoon before it rained.

Felt good all day except for overwhelming fatigue around 4 PM and I napped for 45 minutes. 

2nd ASCT - Day 127 - September 22 2012

Slept pretty well, but still bothered by burning sensation neuropathy especially in my left leg behind my knee at night. It burns all the time, but I notice it more at night. I've also started to get some numbness feeling in the toes of my right foot.

Went and took photos of the Mackay Quilters Guild this afternoon. These ladies had a 2-day sew fest and created 4 quilts they will donate, raffle, or auction in some way for charity. I cannot believe how hard and long they worked.

I also went to watch one of my favorite boys (#65) play Mackay Junior High School Football. The forest fire smoke is still thick and I wore my N-95 mask. The boys should have had masks on too!

My energy was good today and I cleaned the garage - Jani would be proud!

2nd ASCT - Day 126 - September 21 2012

I took Kemmer to the vet in Idaho Falls for her annual checkup and rabies shot. She is such a good traveler!

The fire smoke continues in the Big Lost River Valley. Could barely see the Arco Number Hill as I came back in to the valley from the desert on Highway 93.

 Dale Huffaker arrived to make my new pad for my trailers.

 This is the before photo of the too small pad for the trailers.

 Finished pad being watered down before I put the trailers on it.

2nd ASCT - Day 125 - September 20 2012

My tongue seems a tad less dry and my taster is working a tad better - but, not totally - as I come off of Zolinza (vorinostat). The neuropathy in my left foot and leg continues and interferes with my sleep.

Had a really busy day. When I went to check on my father (age 91), he told me that his left leg was really painful. He had an arterial stent placed in his left leg on Tuesday, 18 Sept 2012. So, I called his doctor in Blackfoot, Idaho who wanted to see Dad as soon as possible.  We drove the 85 miles to Blackfoot and checked in at Bingham Memorial Hospital for an ultrasound of his legs. We didn't have an actual appointment time, but we didn't have to wait at all! After the ultrasound, I wheeled Dad over to the David Shelley, MD (Interventional Radiologist) office across the street. Again, we did not have to WAIT and Dr. Shelley met with us. Evidently, the little sponge-like thing that was put in to prevent bleeding on 9/18 has shifted a tad and is partially occluding the stented artery - but, there is still blood flow. It takes about 3 weeks for the sponge to be reabsorbed by the body. This news relieved both Dad and I. We won't have to worry unless the pain REALLY INCREASES and/or his leg and foot go cold to the touch. So, back in Bart and heading home to Mackay!  We were only gone a total of 4 1/2 hours and 3 of those were driving.

It really was a miracle visit - no WAITING at any point! Bingham Memorial Hospital advertises that you will be seen quickly and every time we have been there - that has been the case!

Our forest fire smoke CONTINUES and prevents all out-door activities - poor Kemmer hasn't had a real walk for days!

2nd ASCT - Day 124 - September 19 2012

Up this morning at 2:30 AM wide awake. Worked on computer files and getting items printed for people.  Had just 2 charley horses in the night and not as bad as previous, so maybe the Celtic Sea Salt did help.

The forest fire smoke continues THICK in the valley and no walk opportunity. Stayed in the house most of the day except to check on my father at his house a couple of times, take him his mail, and do his dishes. He has a little bit of pain with walking, but is doing well overall.

I took 10 mg dexamethasone today and now I don't take anymore until next Tuesday, 15 Sept 2012 when I get my weekly Velcade again. Since I'm on this weekly schedule now, I am going to have to work out my sleep better or I'll always be tired.

I sent my DNA sample into ancestry.com a few weeks back and got the results today. It is very interesting and they provide you with so much data to peruse.

Around 2:30 PM, I was overwhelming tired and took an hour nadir (nap). It's no wonder since I was up at 2:30 AM this morning.

Haven't been able to see the stars at night for several days. Usually, this is what I see out my south facing bathroom window at night - Orion! This is my actual bathroom window.

2nd ASCT - Day 123 - September 18 2012

Drove to St. Luke's Hospital MSTI in Twin Falls this morning for my blood draw and subcutaneous Velcade and Dex 10 mg. RN Kendi was my nurse.

My CBC has been effected by the Zolinza (vorinostat) Cycle 1 (14 days). My white blood cell count is lower at 3.8, but still good (norms 4.5-11); my hemoglobin is lower at 13.6, but still good explaining my continuing energy (norms 12-15); however, my platelets are much lower if I expected in light of the new bruising I have on my left arm at 128 (norms 140-440).

My Chem Panel continues to show abnormally high creatinine at 1.23 (norms 0.52-1.04) and a just barely normal BUN level on the high side of normal at 17 (norms 7-17). Plus the creatinine to BUN Ratio is high today at 21 (norms 10-20). These are tests of kidney function.

I made a chart to review my creatinine and BUN levels over time since 19 Jun 2012 when I returned to Idaho from Colorado after my 2nd ASCT on Day 32. My creatinine was slightly high at 1.13 (norms 0.52-1.04) then, but returned to normal. I am wondering if my creatinine/BUN increases might be due to supplements with I added: Curcumin and Pterostilbene??? I started the Curcumin 400 mg twice at day on 8 Aug 2012 and the Pterostilbene 50 mg once a day on 26 Aug 2012.

I also kept careful track of my fluid intake all week:

9/12/12     4,500 ml.

9/13/12     4,000 ml.

9/14/12     3,500 ml.

9/15/12     4,000 ml.

9/16/12     3,500 ml.

9/17/12     4,000 ml

9/18/12     3,500 ml.

However, fellow MMer , Danny Parker has pointed out that the increase in creatinine is probably due to Zolinza (vorinostat): From chemocare.com

Dr. Padavanija is out of the office this entire week, so I was unable to discuss my concerns with her about the kidney function test results. I left her this note:

Notes to Dr. Padavanija  18 Sept 2012 (My Day 123 Post 2^nd ASCT)

1.    Velcade neuropathy in L foot, leg, and fingers seems reduced since 11 Sept 2012. 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 today 9/18/2012 as 4. Continued post-shingles pain R back at lower scapula with no shingle outbreak.

2.    Dexamethasone – will take 10 mg today 11 Sept 2012 and 10 mg 12 Sept 2012.

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

·      HA first night, but resolved with ½ Percocet

·      Dry mouth and tongue and very thirsty (have to drink 2 bottles of water each night). Have been careful to drink 3,500 to 4,500 ml daily.

·      Altered taste severe (can only taste really sweet and really salty)

·      Esophageal Reflux x2 – SUDDEN with no nausea (only occational after 1^st 24 hrs)

·      Very full gastric feeling all the time.

·      Awareness of pounding heart without increase in respiratory rate

·      Sustained tachycardia (96-119) at times (feel weak during)

·      Increase in blood pressure (140’s/high 80’s) initially, but not always

·      Many (3-5) soft formed stools daily, but no diarrhea

·      A return of my post-shingle pain - right-sided at the lower scapula level from mid-line around right side to front without skin lesion outbreak

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

·      Decreased memory – drawing blanks (new)

·      Increasing fatigue, but still able to do all activities

·      Bruising easily since 15 Sept 2012 (? platelet count)

4.    Oral Thrush (started 7 Sept 2012) and resolved 12 Sept 2012 with daily Fluconazole 100 mg. Stopped fluconazole 12 Sept 2012.

6.    Creatinine and BUN Concern (Need CHEM PANEL today 18 Sept 2012)

·      Creatinine     4 Sept 2012     1.09 (norms 0.52-1.04);  BUN nl.

·       Creatinine     6 Sept 2012     1.26                                       BUN 20 (norms 17)

·       Creatinine     11 Sept 2012      1.23                                     BUN 26 

7.    M-Spike Watch

·      12 July 2012          Less than 0.1 (Day 55 after 2nd ASCT)

·        8 Aug 2012          0.1 (No chemo since 2nd ASCT)

·        4 Sept 2012         0.3 (Cycle 1 of Velcade/Dex) completed)

·         4 Sept 2012         Started Zolinza (vorinostat) 14 days on 14 days off

o   Completed Cycle 1 (4-17 Sept 2012)

·        2 Oct 2012                 Next M-Spike blood draw

·      IgG immunoglobulin is on the rise too at 527. 

·      IgG               12 July 2012        380 (Day 55 after 2nd ASCT)

·                              8 Aug 2012        482 (No chemo since 2nd ASCT)

·                               4 Sept 2012       527 (Cycle 1 of Velcade/Dex completed)

·      Beta-2 Microgloblulin is 2.17 (norms less than 2.51)

·      Beta-2 Micro     12 July 2012    2.5 (Day 55 after 2nd ASCT)

·                                    4 Sept 2012    2.17 (Cycle 1 of Velcade/Dex Complete)

LDH 4 Sept 2012 HIGH at 661 (norms 313-618) – Not sure this is the same measure done at UCH (LDH norms are 98-192) there.

8. Will need summary for Clay Smith, MD at UCH (17 Oct 2012 appt).

Drove home to Mackay and was greeted with the THICK, PERVASIVE forest fire smoke. You should see the Lost River Range in the photo below taken on Highway 93 looking north from just before Darlington, Idaho (18 miles from Mackay, Idaho).

 My cousin Diane Miller sent me this Celtic Sea Salt as a possible cure for the nighttime leg cramps/Charley Horse episodes I've been having. It arrived today and I'm going to try it on some steak tonight.

My father had another arterial stent placed in his right thigh area today. Gretchen Lawrence took him to Bingham Memorial Hospital in Blackfoot, Idaho for the all day procedure by Dr. David Shelley since I had chemo in Twin Falls. Gretchen dropped him off at my house and I'll watch him for the night. He seems to be doing fine.

Jani had a colonscopy in Colorado today and all was clear~ Yippee.

So, all 3 of us had medical procedures today and survived.