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:

2nd Relapse Confirmed By Bone Marrow Biopsy Done 17 October 2012

I received part of my bone marrow biopsy results done on the sample obtained 17 October 2012 at the University of Colorado Hospital this afternoon. 

My bone marrow reveals relapsed plasma cell myeloma with 60 % kappa monotypic plasma cells involving a slightly hypercellular marrow (70 %) with mild anemia (low hemoglobin) and moderate thrombocytopenia (low platelets). I do not have the cytogenetic analyses yet.

So, this report is even worse than I thought it would be with an M-Spike measured at UCH on 17 October 2012 of only 0.3. Plus, it is clearly apparent that the 2nd autologous stem cell transplant did nothing for me.

I'll just have to wait for the referral to Boston and the approval of Carfilzomib and Revlimid. I go to see Dr. Padavanija at St. Luke's Hospital MSTI in Twin Falls, Idaho tomorrow. If they don't have the Carfilzomib approval, I'll get Velcade again.

Snowing in our mountains today.

Bone Marrow Biopsy to Confirm Relapse - October 17 2012

Clay Smith, MD came in to continue my appointment from yesterday which was a pleasant surprise. He and his team including the UCH pharmacist, Jenny, my transplant coordinator, Lindsey McMenimen are working to coordinate everything with Dr. Padavanija at St. Luke's Hospital in Twin Falls. Dr. Smith will contact Paul Richardson, MD, Boston for my second opinion to get started.

NP Angela did my 8th bone marrow biopsy in 15 months today.

Bone Marrow Biopsy History:

1. 24 May 2011 (Diagnosis at Dr. Moore in Ft. Collins, Colorado)
2. 20 Aug 2011 (1st at UCH with Glen, NP)
3. 1 Sept 2011 (Karley, NP)
4. 2 Nov 2011  (Karley, NP)
5. 9 Mar 2012  (Karley, NP and 1st with OnControl Driver)
6. 3 May 2012 (Shannon, NP with OnControl Driver)
7. 12 July 2012 (Trish, NP with OnControl Driver)
8. 17 Oct 2012 (Angela, NP with OnControl Driver)

The bone marrow biopsy went well, as they drugged me with morphine and Ativan. I held the real dinosaur rock for good luck that Ron made Jani.

After the bone marrow biopsy, Jani and I had lunch in the hospital before my chemotherapy appointment at 1 PM. I had to have an IV started and the nurse was able to get it started on the first poke. 

 They ran 1,000 cc of fluids because of my high creatinine (1.47) drawn yesterday. 

Then, I got my subcutaneous Velcade in my right arm. I took 20 mg of dexamethasone orally and will take 20 mg tomorrow and stop.

Jani drove me to Greeley and I slept in the back of Bart the whole way. We had chinese food for dinner.

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 144 - October 9 2012

Up early with everything moving south in my GI tract RAPIDLY. I believe this is due to Zolinza (vorinostat). 

Unfortunately, I had to drive to St. Luke's Hospital MSTI in Twin Falls for my labs and subcutaneous Velcade. I had to stop twice on the 135 mile way to use the bathroom - not fun. I stopped at a convenience store in Carey, Idaho (72 miles) and bought Imodium. That helped a lot. I only took 1/2 tablet because I am very sensitive to the medication. I take dexamethasone 10 mg orally today and tomorrow.

So, when I got to Twin Falls, I was a tad dehydrated for my lab draw which might reflect on the results. My white blood cell count was just slightly low at 4.1 (norms 4.5-11); hemoglobin normal at 13 (norms 12-15); and platelets low at 125 (norms 140-440). So, I need to be careful about not bumping myself until this 2nd cycle of Zolinza is over  and my platelets hopefully recover. During the 1st cycle of Zolinza in September 2012, my platelets dipped to 128 and recovered quickly.

My creatinine is WAY HIGH at 1.36 (norms 0.52-1.04), but my BUN is normal at 13 (norms 7-17), so they went ahead and gave me my subcutaneous Velcade. Again, Zolinza causes what the drug information calls "transient increases in creatinine", so I'm trying not to worry.

I continue careful to drink adequate fluids each day:
10//3/2012   3,000 ml
10/4/2012    3,500 ml
10/5/2012    3,000 ml
10/6/2012    3,000 ml
10/7/2012    3,000 ml
10/8/2012    3,000 ml
10/9/2012    3,500 ml

I waited for my Velcade in the Infusion Area until RN Ann came and gave it to me in my right arm. My hair is growing pitifully slow, but I have the beginning of bangs.  The white hair in front is something I have had all my life - a white forelock called Piebaldism is a rare autosomal dominant disorder of melanocyte development characterized by a congenital white forelock. When I had hair like my blog cover photo, everyone thought I dyed a blonde streak in the front - but, I just had it naturally.

Today, I started over -the-counter Ursolic Acid 450 mg twice a day which is supposed enhance Velcade's action, but can depress your white blood cells and platelets. I'll only take the Ursolic Acid on my Velcade injection day and 2 days after.

I was tired today and slept for 2 hours when I got home at 4 PM.

2nd ASCT - Day 139 - M-Spike Up - October 4 2012

Well, my M-Spike is back and it continues to CREEP UP. Last month it was 0.3 and as of 2 Oct  2012, it is 0.4. This value increased after one full cycle of Zolinza (vorinostat). I'm sure this value along with the increasing LDH represents RELAPSE. I'm not in a panic yet because I feel so well and I have my follow-up appointment at the University of Colorado Hospital with Clay Smith, MD on 16 Oct 2012.

For now, I will continue with the second cycle of Zolinza (vorinostat) 2 Oct to 15 Oct 2012 and weekly Velcade  with dexamethasone. 

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 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.