Relapsed High Risk Myeloma - Update July 19 2013

Couldn't sleep at all in the motel. Finally turned my computer on at 2 AM and worked on a genealogy chart for my Gram's side of the family. Tried hard not to wake Jani, but did at least one time.

My guts were not burning at all - it helps to sit up more than lie down...but, probably not that good to stay up ALL NIGHT!

Got up early to arrive at St. Luke's Hospital MSTI for my 7:40 AM blood draw (CBC only). Had some trouble with my Bard Power Port and it bruised.

My platelets were only 12 (not so good) and if I lived in Twin Falls, I might have waited around for a platelet transfusion. I will wait and go to Lost Rivers Medical Center in Arco and get my blood tested Monday morning, 22 July 2013. Then, if my platelets and/or hemoglobin are low, we'll call St. Luke's and probably drive to Twin Falls in the afternoon for either/or a platelet or packed red blood cell transfusion. It takes St. Luke's Hospital in Twin Falls all day to get platelets from a blood bank in Boise and once they arrive they have to irradiated before they can be given to me. 

RN Vicki gave me my intravenous Kytril, carfilzomib along with pre and post fluids. The carfilzomib, along with the oral pomalidomide that I take are expected to lower my platelet count. Hopefully, I will not bleed. Intravenous push Kytril makes me very tired, but has pretty much eliminated the burning gut I've had without it.

Jani went shopping for some cold food items to put in our cooler while I got my chemo.
We were on our way home 10:30 AM arriving just before 1 PM.

Once home, I felt TERRIBLE. Had an all over headache, but, especially  over my eyes and forehead. My legs (calves) were in spasm and nothing helped that. I tried to nap and could not. The burning neuropathy pain I have in my left leg from my toes to my groin bothered me, but, the neuropathy pain that has recently developed in my right heel is most bothersome - feels like I'm stepping on a hot iron all the time. I remained in this uncomfortable way all afternoon, evening, and night - MISERABLE...okay, I am WHINING NOW!

Forest fires have broken out north of us AGAIN this summer - known as the Papoose, Bradley, and Lodgepine Fires and our Big Lost River Valley had filled with fire smoke - I HATE THIS and I'll probably be back in a N-95 mask again to be outside.

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.

Pomalidomide (Pomalyst) Update For Relapse After 5 Doses - March 10 2013

Update on side effects of pomalidomide (Pomalyst) after five (5) 4 mg doses. I take the pomalidomide just before bedtime because it makes me almost instantly tired.

• continued scalp burning
• creepy legs with a fullness feeling in left calf (like it is being blown up with bicycle pump)
• neuropathy of left leg rated 4 on 1-10 scale, especially from back of left knee to left hip
• neuropathy of left foot is mild
• poor sleep attributed to neuropathy
• tiredness, especially in afternoons and evenings
• no diarrhea and no constipation

I have been experimenting with small doses of oxy (1/4 tabs) to relieve the neuropathy and not leave me feeling hung over while awake. The scalp burning might freak me out, but since I know this was only a temporary sign after I started Revlimid (a relative of pomalidomide), I'm fine with it.

My gastritis is GREATLY improved - I'm sure it is caused by dex and not pomalidomide. I take 40 mg of dex by mouth each Tuesday. Almost instantly develop gastritis BURNING PAIN after taking dex and by Friday had very little to no gastritis this week.

Continue nightly Fragmin 15,000 unit injections to thin my blood and prevent blood clots from pomalidomide.

Have been walking Kemmer daily - 0.82 miles on 7 Mar 2013; 1.28 mile on 8 Mar 2013; and 1.28 miles on 9 Mar 2013. My back hurts across my scapula when I walk, but that was happening even before I was officially diagnosed with myeloma.  It is still winter here in Idaho and COLD. My hair is still growing and I think I even need a haircut to even it out.

Able to do laundry, house cleaning, etc. without problems. In addition, I feel like I am clear of thinking of late.

Leg Cramps, Neuropathy, and Back Pain Updates - November 8 2012

Slept in my usual 2 hour spurts, but I have NOT had a single leg cramp since I started wearing the dorsiflexion (toes toward head) boots at night. Note that I only use a loose upper strap and a loose one over the top of my foot - I'm not using the middle strap at all and have it velcro-ed to the back of the boot. I'm so thankful to be rid of the leg and arch of my foot cramps!

The neuropathy in my left foot and leg seems much improved since I stopped Velcade (last dose on 23 Oct 2012) and started Carfilzomib (1st dose 30 Oct 2012). I know the numbness in my fingertips is improved for sure.

I had to wait at home all morning for the FedEx guy to deliver my Fragmin pre-filled syringes (30 day supply of 7,500 units and a 30 day supply of 15,000 units) - variable dose needed depending on my platelet count. I will go to Lost Rivers Medical Center in Arco, Idaho (30 miles each way) tomorrow morning to have my platelet count checked. The FedEx guy arrived around 11:30 AM, so that was good because it meant I could go do errands and get the mail for my father at the Post Office.

Walked Kemmer just to the Mackay City Limit Sign (0.82 miles round trip) because it started to rain on us and the pavement ends at this point - nothing worse than a muddy Kemmer!

We have a severe weather warning - forecasting snow for tonight and tomorrow.

My back continues to hurt while I walk and is relieved when I rest. I've had this pain since I was diagnosed, but it seems worse these last couple of days - I've always hoped it wasn't my heart.

Saw this on the internet - people in China are painting their golden retrievers:

Updates - October 28 2012

I forgot to mention the Mayo Clinic - Scottsdale, Arizona insurance office called yesterday (a Saturday) which surprised me since it was Saturday. I gave them my insurance information and they said they would be getting back to me. At least, I know the process has started.

Woke this morning with no ill effects from snow shoveling yesterday. My neuropathy seems to be extending from my feet and legs (especially left) to my back. I have a couple of spots on the left side of my back that feel NUMB and HEAVY.

Really warmed up today and most of our snow melted. Walked Kemmer 1.30 miles around town because the Mine Hill Road was muddy. No wind (note the flag on our American Legion Hall) and 60 degrees.

 My slow hair growth.

Insurance Approval Delays and Walking - October 24 2012

Still do not have insurance approval for Carfilzomib and Revlimid. I called St. Luke's in Twin Falls and they are still waiting on the approval. I called my insurance Case Manager (she is in Ohio) and had to leave a message. No one seems to realize I need these medicines sooner than later. I lost my patience a bit. Today was a hard day to forget I have relapsed x 2 high risk multiple myeloma.

So, I walked Kemmer 0.68 miles on the Mine Hill today - always calming for me. Our summer route was covered with snow and slick, so we walked the steeper Mine Hill road today beginning at 6,232 feet with a gain in elevation of 132 feet or the equivalent of a 11 story building to 6,364 feet. Cold at 37 degrees, but no wind and mostly blue skies.

My left foot and leg neuropathy continue to burn, but during the day when I'm active it isn't too bad. However, during the night, it interferes with my sleep. 

Home Sweet Home in Mackay Idaho - October 21 2012

Feeling pretty good - better energy. My neuropathy continues, but I think it is some less intense. Didn't sleep well last night, so, hopefully, I will tonight. Got the house vacuumed and took Kemmer on a walk to the Big Lost River Smelter Bridge (1.20 miles).

The Big Lost River is really low right now.

 Could clearly see trout swimming around.

2nd ASCT - Day 145 - October 10 2012

Well, 1/2 Imodium tablet and Velcade subcutaneously on Tuesday (10/9/12)  has complete shut down my GI tract. So, I'll probably have to take a Senna-S and Phillips Tab tonight to get going again. I am so sensitive to Imodium and I am SO GLAD that I remembered to take only 1/2 on Tuesday.

I have had more energy today and got a lot of house tasks started like covering my crawl space opening for winter. Took Bart (2006 Honda) in for a rock chip repair that I got yesterday on my Twin Falls trip. Just needed to drive 44 miles round trip to get it done!

Didn't need a nap this afternoon. Got a lot of scanning done for the historical society and my own genealogy. 

My left foot and leg neuropathy seems improved since I started taking the Ursolic Acid yesterday. That is the only thing different in my daily medications - so, it must be that. But, I'm only taking it for 3 days around my Velcade subcutaneous injection as Ursolic Acid potentiate the action of Velcade and lower your blood counts.

Curascript sent my new 14 days of Zolinza today via FedEx. I hope I don't have to take it anymore and can sent it back. 

2nd ASCT - Day 143 - October 8 2012

Day 7 of 14 Zolinza (vorinostat). My tongue is dry and my taster is almost gone. Luckily, I know my sense of taste will return after I go off the Zolinza. Neuropathy and leg cramps continue along with swelling and retaining fluid in my body and face.

Walked Kemmer 1.38 miles on the Mine Hill. Didn't need to wear the N-95 mask.

2nd ASCT - Day 142 - October 7 2012

Slept well last night AGAIN - almost afraid to say it. The neuropathy in my left foot and leg continue, but I seem to be used it. Only one leg cramp in the night.

Had better energy today and cleaned my house - well, I vacuumed it! I need to get the crawl space openings covered for winter and I had that on my list too - but, there is always tomorrow...or maybe if I stayed home instead of wandering around town with my camera.

I walked Kemmer on the Mine Hill 0.88 miles and we enjoyed the wind from the south and NO forest fire smoke.

Went over to see the progress on the Mackay Elementary School playground equipment install. This equipment is COLOSSAL - several stories high (reference the woman on the right of the photo)!

They still have to pour concrete in all the holes tomorrow and add a roof to the blue poles on the left, but they sent the wrong brackets.

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 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!