jm's Adventure with Multiple Myeloma: Padavanija Phatama MD

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Showing posts with label Padavanija Phatama MD. Show all posts
Showing posts with label Padavanija Phatama MD. Show all posts

Thursday, July 11, 2013

Relapsed High Risk Myeloma - Update July 11 2013

Today would have been my M's 89th birthday had she lived beyond 9 Jun 2005. She was born 11 July 1942. Here we are pictured on 2 July 2001.
Jani and I left for St. Luke's Hospital MSTI in Twin Falls for my 1st Cycle of intravenous carfilzomib/oral pomalidomide 4 mg tandem chemotherapy along with 10 mg of Dex every other day.

It was cold in the examination room while we waited for Dr. Padavanija and they issued both Jani and I a blanket.


My lab values for today prior to my 1st dose of intravenous carfilzomib: white blood cell count normal at 5.8 (norms 4.5-11); ANC (absolute neutrophil count) normal at 3.38 (norms 1.9-8.8); hemoglobin low at 8.5 (norms 12-16); and platelets low at 17 (norms 140-440).



My platelets are so LOW, they are now not really compatible with life. Dr. Padavanija, Jani, and I discussed my bone marrow biopsy results for the biopsy done on 26 April 2013.  



The pathologist reported 100% plasma cells in the bone marrow which appear to be "squeezing out" ANY ABILITY of my own bone marrow to make any cellular elements including white blood cells, hemoglobin, and platelets.

We decided to give me 2 units of packed red blood cells this afternoon along with the intravenous carfilzomib and intravenous kytril (for nausea).
My chem panel results are off too. Although, my creatinine is normal at 1.00 (norms 0.52-1.04), my BUN is high at 22 (norms 7-17), and my BUN/R Ratio is high at 22 ( norms 10-20). My GFR is normal today at 60...so, the mild kidney failure I've been experiencing is still there to some degree. 

My total protein is high at 8.6 (norms 6.3-8.2) and my globulin is high at 4.3 (norms 2.5-4). To be honest, I have no idea what these values mean and since I have all those other values to think about, I'm not going to worry about them.

My LDH today, 11 July 2013 has SKYROCKETED to 2274 (norms 313-618) from 1040 on 2 July 2013. This cannot be good!

My bone marrow biopsy results from 26 June 2013.

IgG 1516
IgA <13
IgM < 8

M-Spike 1.2

No circulating plasma cells in my circulating blood.

Bone Marrow Core and Aspirate showing increased cellularity with plasma cells occupying almost 100 % of the cells present along with stainable iron present. The plasma cells (kappa light change) are arranged in broad sheets and occupying the majority of the deep bone marrow compartment.Examination of the peripheral blood smear shows pancytopenia (a reduction in the number of red, white and platelets) without any blasts identified.

Cytogenetics Report: 45, XX,dic (1;1)(q44;p11.2)x2,dic(1;6)(p13;p25)[cp2]/46, XX[15] Abnormal Female Karyotype

(Not sure why I now have an abnormal female karyotype...but I think it said that in June 2013 too).

Jani and I left St. Luke's Hospital just after they closed at 5 PM and checked in to the motel for the night. Then, we went to Wok n' Grill (Chinese food) for dinner.
Stopped at McDonalds for some vanilla soft ice cream and headed back to the motel for the night.

Andrea and Kobe Marinac stayed with our dogs while we were gone to Twin Falls today. Zoe LOVES boys ! ! !
Shirley, Wayne and Alex Olsen fed the dogs for us - "it takes a village" concept. Thanks to everyone for the help.


Tuesday, May 21, 2013

Relapsed High-Risk Myeloma - Update Lab Draw and Doctor's Visit - May 21 2013

Jani and left for St. Luke's Hospital in Twin Falls at 6:45 AM - OR somewhere close to that time. As we loaded Bart (2006 Honda Pilot), discovered that the battery was DEAD DEAD DEAD. I had the oil changed and the tires rotated last week and I guess I left the key on. Jani dashed over Paco's to get the battery charger and it worked like a charm....so, we weren't too late leaving Mackay.

Arrived St. Luke's exactly on time at 9:20 AM for my appointment for the lab draw. My white blood cell count was low, but good for me at 3.7; my hemoglobin was low, but also good for me at 10.9 and DRUM ROLL - my platelets were 35 -- up from 18...meaning that my bone marrow made 17 platelets on its own! Perhaps, the nadir period for the Bendamustine has been reached. I left without getting paper copies of my my lab tests - so, the entire CBC, Chem Panel, and LDH will be faxed to me - hopefully, by tomorrow.

Dr. Padavanija, per usual, spent ample time with us and explained my lab values. With a platelet count of only 35, I need to continue to be careful not to fall or bump myself. She doesn't want me not to do things I enjoy - but, my platelets are pretty limiting right now. She and I went over my POST documents (my wishes if I cannot speak for myself) and signed them. I'll post the POST document on my refrigerator door should any EMT personnel be called to my house. 
Although, my death is not imminent right now unless I bleed out or have a stroke, my wishes are NOT TO BE TRANSPORTED out of my house and to die right here in Mackay, Idaho in my bed when the time comes. Jani signed the document too. I just want to be prepared.
I didn't need any transfusions today and we were off shopping and to Taco Bell for a late lunch.

We drove home through the Big Lost River Valley in the rain...nice to have some moisture.
 Nice to have Jani to drive while I take up the back.
 We packed Bart full with our Walmart visit.
Bought Paco petunias for his front porch pots - he likes them each summer. Well post a photo after Jani gets them transplanted.
I will get my labs checked again next at Lost Rivers Medical Center in Arco next Tuesday.

Was home in time to go vote for the Mackay School District Zone 3 Board of Directors Election at the Mackay Fire Hall, a quick trip to the Ivies (grocery), and home to the sofa for a nadir (my word for nap).

Friday, January 11, 2013

Blood Check Today Keeps Me In - January 11 2013

Drove on icy, windswept road to Arco (30 miles) to get my blood checked. 

The snowplows were out.
My white blood cell count was just 1.7 which Lost Rivers Medical Center lists as "CRITICAL LOW" (norms 4-11.2); hemoglobin low at 9.0 (norms 12-16); platelets low at 32 and also listed as "CRITICAL LOW"; Absolute neutrophil count (ANC) low at 1.04 (norms 2-8). 


So, this means that I have to stay away from sick folks, wear a mask in public places, and be careful not to bump myself with such low platelets (clotting ability very limited).

As I was driving home, RN Vicki called me from Dr. Padavanija's office in Twin Falls because Lost Rivers Medical Center Technician Diana called them to let them know the results of my blood draw. I will hold my Fragmin tonight and start back on 1/2 dose, 7,500 units tomorrow. I will have my blood drawn in Arco next Wednesday morning and if my white blood cell count is less than 3.0 and my platelets still low, I won't go to chemo in Twin Falls - we'll just HOLD the chem until my bone marrow can respond.

The road home was just as bad as the road there...probably not the best idea for a gal with a platelet count of just 32 to be out driving on....hummm. I only went for the ordered blood draw because I wanted to know if I had enough platelets to get on my 4-wheeler with the snowblade and move some SNOW -- but, 32 if probably too low to be bumping around in the snow on the 4-wheeler...so, it is one-with-the-sofa for me for the rest of the day.
Highway 93 north between Arco and Mackay. 11:30 AM 11 Sept 2013

 Downtown Mackay, Idaho around noon 11 January 2013.


Tuesday, November 27, 2012

Cycle 2 Week 1 Day 1 Carfilzomib and Dex - November 27 2012

Made to St. Luke's Hospital MSTI in Twin Falls, Idaho without closely encountering any wild life. I did see a big buck mule deer, but he was about 40 yards off the highway. My appointment was at 9:20 AM, so I had to do the first 45 minutes or so in the dark...I am deer-shy after hitting one 30 Oct 2012. At least I have my repair Bart (2006 Honda Pilot) back to drive, as the transmission is "iffy" in Jonah (1999 Honda Passport).

Saw Dr. Padavanija and shared my experiences at the Mayo Clinic, Scottsdale. She had the dictated reports from Dr. Foncesa, but hadn't had time to review them yet. We decided to start back on the Aredia (bone building medication) today; increase the carfilzomib dosage from 20 metered squared and 27 metered square and have my blood checked in Arco, Idaho on Friday to check my platelet count.

We discussed the possibility of getting a port placed in my chest for intravenous access and having a bone marrow biopsy BOTH under conscious sedation, one right after the other in the same room after Cycle 2 of the carfilzomib is completed. It will be scheduled for either 19 Dec 2012 or 20 Dec 2012 giving my bone marrow a period of time to recover after the completion of the 2nd Cycle of carfilzomib is completed on 12 Dec 2012. Jani will be here in Idaho (visiting for Christmas) to take me. They don't have the OnControl Driver, but I figure with conscious sedation, I'll be okay. Otherwise, I would have to drive or fly to the University of Colorado Hospital just for a bone marrow biopsy WITHOUT conscious sedation, but with the OnControl Driver~

Today, they drew my multiple myeloma blood tests including the M-Spike. It was 0.5 at the Mayo Clinic on 20 Nov 2012. Will have to wait a couple of days for results from today.

My white blood cell count was improved today to 4.1 but, a tad low (norms 4.5-11); my hemoglobin improved, but little low at 11.3 (norms 12-16); and my platelets were NORMAL at 155 (norms 140-440). My LDH has increased again to 867 (norms 313-618).

My creatinine was NORMAL today at 0.99 (norms 0.52-1.04) and I was HAPPY about that. My BUN was normal at 17 (norms 7-17) and even my GFR was NORMAL at greater than 60 for the first time!

I was in the infusion area for a long time because the IV took 2 pokes to work and then, the Aredia takes 2 hours to run - I thought about taking a Claritin to ward off the Aredia "flu-like" aches and pains that I sometimes have with the bone building medications. I decided to "wait and see" and then take Claritin if needed.

Followed by intravenous dex, intravenous carfilzomib at 27 metered square dosage (an increase from 20 metered squared). They decided not to give me the liter of extra fluids because my kidney function tests were normal, so I'll drink extra fluids this afternoon and tonight.

However, they did give me a nice free lunch consisting of a sandwich and pudding.

My mind seems somewhat clearer (prior to dex administration) and I'm not very tired for someone who has spent more than 5 hours lounging in a recliner - ha~

Went directly to the pet store and bought Nature's Miracle Skunk Remover for Kemmer who I'm sure rolled on some dead skunk over by Ron's house yesterday while I was at the dentist.  I put Skunk OFF on her last night, but it just covers the smell with a TERRIBLE floral scent. She is back at Ron's today and tomorrow until I get home - so, I'll need the real stuff by then.

Drove to the motel and checked in around 3:30 PM. Will return to the Infusion Area tomorrow morning at 7:30 AM to get Day 2 of the carfilzomid/dex.

Wednesday, November 14, 2012

Cycle 1 Week 3 Day 2 Carfilzomib and Dex - November 14 2012

Got to love dex! Couldn't sleep at the Quality Inn in Twin Falls and finally at 2 AM, just turned on the lights and worked on my genealogy files at ancestry.com. I'm making good progress on that front! It is better not to fight dex.

Along with decreased urine output last night, I felt bloated and swollen in my gut. As I walked in to my 9 AM appointment at St. Luke's Hospital MSTI, my heart was pounding and I was a tad out of breath which didn't seem to get better as I waited for the invitation to go back to the Infusion Area.

Once back in the Infusion Area, they weighed me and I had gained 4 pounds in 24 hours, my pulse was a sustained 90 something and although I had no swelling in my feet, my face and gut were swollen. RN Letia spoke with Dr. Padavanija and they decided it would be best if I took 20 mg of Lasix (diuretic). She wrote me a prescription for Lasix and cautioned me to take it only sparingly since my kidney function is not totally normal.

They were able to order a LDH on the blood that they drew from me yesterday. Good news, the LDH for 13 Nov 2012 is down to 615 (norms 313-618). It was 639 last week, down from a HIGH of 1,046 the week before.
RN Letia was able to use my IV that was placed yesterday by RN Vicki. I received fluids, followed by the Carfilzomid (Kyprolis) at 20 mg / metered squared dosage, followed by more fluids (a total of 1,000 ml of fluids plus the fluids the medications were in). I took 4 mg of Dex by mouth.

I was able to leave by 11:30 AM. Went to Walmart to pick up my Lasix prescription and headed out of Twin Falls, Idaho for home in Mackay, Idaho at noon.

Tuesday, November 6, 2012

Cycle 1 Week 2 Day 1 Carfilzomib and Dex - November 6 2012

Up in the dark this morning to walk Kemmer before I had to leave at 7:00 AM for my appointment at St. Luke's Hospital MSTI at 7:20 AM. Kemmer waited for me in Jonah. My blood draw went well on the first poke.

I waited and WAITED and WAITED for my appointment with Dr. Padavanija and finally asked the receptionist Pamela if they might have forgotten me - they DID! I wore a mask in the waiting area because there was someone coughing. 

So, finally I saw Dr. Padavanija about 40 minutes late. She shared my blood test results. My white count is down to 2.7 (norms 4.5-11), my hemoglobin down to 11.7 (norms 12-15) and my platelets are only 71 (norms 140-440). I'm taking Fragmin 15,000 unit injections to prevent blood clots since I'm on Revlimid 10 mg daily (today is Day 8 of 21). If my platelets drop below 50, then I'm supposed to adjust the Fragmin injection to 7,500 units and if they drop below 30, then HOLD the Fragmin. Dr. Padavanija gave me an order to get my blood checked at Lost Rivers Medical Center in Arco, Idaho on 9 Nov 2012 and they will fax her the results. She also gave me a note that I have multiple myeloma and require Fragmin injections so I can get the pre-filled syringes through airport security when I go to the Mayo Clinic Scottsdale, Arizona during Thanksgiving Week. RN Kenadi is going to help me get prescriptions for Fragmin and Revlimid from Curascript.

The best news on my blood results was the LDH. My LDH has steadily been RISING to 1,046 and today showed a decline to 639 (norms 313-618) after just 2 doses of Carfilzomib. I think this is a very good sign.

6 Nov 2012     LDH     639
30 Oct 2012    LDH     1,046
23 Oct 2012    LDH     993
2 Oct 2012      LDH     710
4 Sept 2012    LDH     661
19 Jun 2012   LDH      590
18 May 2012  2nd Autologous Stem Cell Transplant

Unfortunately, my creatinine (kidney function test) continues high at 1.13 (norms 0.52-1.04). This has been happening ever since I took 2 cycles of Zolinza (vorinostat) 4 Sept 2012 to 15 Oct 2012. I hated that chemo!
Back in the Infusion Room, RN Melisa got my IV started on the first poke in my right forearm. I received my Carfilzomib dose and intravenous dex 20 mg plus 1,000 ml of IV normal saline fluids. 


RN Melisa put heparin in my IV, wrapped it up and we'll try to use it again tomorrow for the 2nd part of the Carfilzomib dose.

I was able to leave at 11 AM. Walked Kemmer around a field and then went to Walmart.

Came back to the motel and had an hour and a half nadir (nap).

Then, walked Kemmer 0.96 miles around the Snake River Canyon area. The hotel is just a couple of blocks from the canyon. The leaves are falling here in Twin Falls and everything is very pretty, 71 degrees and no wind.







Tuesday, October 23, 2012

Lab Values, Dr. Visit, Velcade, and Review of Carfilzomid - October 23 2012

Up early in the dark for my trip to St. Luke's Hospital MSTI (Mountain States Tumor Institute) in Twin Falls, Idaho. Left early because it snowed yesterday and so I could go more slowly watching for critters (deer, moose, elk) in the road, but I didn't encounter any.

My blood draw went well and I was careful to hold the site for 5 minutes afterwards since I expected that my platelets were improving, but still below normal.

My white blood cells were almost normal at 4.4 (norms 4.5-11); hemoglobin normal at 12.3 (norms 12-15); and my platelets were up from 80 last week to a normal of 149 (norms 140-440). So, my bone marrow is recovering from the Zolinza (vorinostat) in these values.
My creatinine was lower at 1.16 (norms 0.52-1.04) from 1.47 last week on 10/16/2012 and 1.20 on 10/20/2012. My BUN remains normal at 11 (norms 7-170. So, it appears that my kidney function tests are on the mend. I will continue to drink lots of fluids daily (3,000 to 3,500 ml).

My LDH is soaring at 993 (norms 313-618) - goes well with the relapse.

After my labs were back, I saw Dr. Padavanija and nurse Kendi. They have been working on getting insurance approval for the Carfilzomib (Kyprolis) and Revlimid (lenalidomide). I gave them my insurance Case Manager's phone number and they had to leave a message. At any rate, the new medications are not yet available and I got Velcade/Dex instead. I called Curascript and completed my Celgene Survery for the Revlimid 10 mg. They will send it to me as soon as the insurance approves it.

I'm thinking this is not all negative, since it will give my bone marrow another week to recover from the Zolinza (vorinostat) that didn't help me - just depressed my bone marrow and abnormally increased my kidney function tests.

The Carfilzomib (Kyprolis) information is a tad scary. I can only hope the benefits for me outweigh the risks and that Zolinza (vorinostat didn't ruin my heart - I still have flip-flop feelings in my heart and racing heart rate at times).

WARNINGS AND PRECAUTION Carfilzomib (Kyprolis) 

from http://www.kyprolis.com


The safety of KYPROLIS was evaluated in clinical studies of 526 patients with relapsed and/or refractory multiple myeloma.
Cardiac Arrest, Congestive Heart Failure, Myocardial Ischemia 
Death due to cardiac arrest has occurred within a day of KYPROLIS administration. New onset or worsening of pre-existingcongestive heart failure with decreased left ventricular function or myocardial ischemia have occurred following administration of KYPROLIS. Cardiac failure events (e.g., cardiac failure congestive, pulmonary edema, ejection fraction decreased) were reported in 7% of patients. Monitor for cardiac complications and manage promptly. Withhold KYPROLIS for Grade 3 or 4 cardiac events until recovery and consider whether to restart KYPROLIS based on a benefit/risk assessment. Patients with New York Heart Association Class III and IV heart failure, myocardial infarction in the preceding 6 months, and conduction abnormalities uncontrolled by medications may be at greater risk for cardiac complications.
Pulmonary Hypertension
Pulmonary arterial hypertension (PAH) was reported in 2% of patients treated with KYPROLIS and was Grade 3 or greater in less than 1% of patients. Evaluate with cardiac imaging and/or other tests as indicated. Withhold KYPROLIS for pulmonary hypertension until resolved or returned to baseline and consider whether to restart KYPROLIS based on a benefit/risk assessment.
Pulmonary Complications
Dyspnea was reported in 35% of patients enrolled in clinical trials. Grade 3 dyspnea occurred in 5%; no Grade 4 events, and 1 death (Grade 5) was reported. Monitor and manage dyspnea immediately; interrupt KYPROLIS until symptoms have resolved or returned to baseline.
Infusion Reactions
Infusion reactions were characterized by a spectrum of systemic symptoms including fever, chills, arthralgia, myalgia, facial flushing, facial edema, vomiting, weakness, shortness of breath, hypotension, syncope, chest tightness, or angina. These reactions can occur immediately following infusion or up to 24 hours after administration of KYPROLIS. Administer dexamethasone prior to KYPROLIS to reduce the incidence and severity of reactions. Inform patients of the risk and symptoms, and to contact physician if symptoms of an infusion reaction occur.
Tumor Lysis Syndrome
Tumor lysis syndrome (TLS) occurred following KYPROLIS administration in < 1% of patients. Patients with multiple myeloma and a high tumor burden should be considered to be at greater risk for TLS. Prior to receiving KYPROLIS, ensure that patients are well hydrated. Monitor for evidence of TLS during treatment, and manage promptly. Interrupt KYPROLIS until TLS is resolved.
Thrombocytopenia
KYPROLIS causes thrombocytopenia with platelet nadirs occurring around Day 8 of each 28-day cycle and recovery to baseline by the start of the next 28-day cycle. In patients with multiple myeloma, 36% of patients experienced thrombocytopenia, including Grade 4 in 10%. Thrombocytopenia following KYPROLIS administration resulted in a dose reduction in 1% of patients and discontinuation of treatment with KYPROLIS in < 1% of patients. Monitor platelet counts frequently during treatment with KYPROLIS. Reduce or interrupt dose as clinically indicated.
Hepatic Toxicity and Hepatic Failure
Cases of hepatic failure, including fatal cases, have been reported (< 1%). KYPROLIS can cause elevations of serum transaminases and bilirubin. Withhold KYPROLIS in patients experiencing Grade 3 or greater elevations of transaminases, bilirubin, or other liver enzyme abnormalities until resolved or returned to baseline. After resolution, consider if restarting KYPROLIS is appropriate. Monitor liver enzymes frequently.

Embryo-fetal Toxicity
KYPROLIS can cause fetal harm when administered to a pregnant woman based on its mechanism of action and findings in animals. There are no adequate and well-controlled studies in pregnant women using KYPROLIS. Carfilzomib caused embryo-fetal toxicity in pregnant rabbits at doses that were lower than in patients receiving the recommended dose. Females of reproductive potential should be advised to avoid becoming pregnant while being treated with KYPROLIS.

ADVERSE REACTIONS

Serious adverse reactions were reported in 45% of patients. The most common serious adverse reactions were pneumonia (10%), acute renal failure (4%), pyrexia (3%), and congestive heart failure (3%). Adverse reactions leading to discontinuation of KYPROLIS occurred in 15% of patients and included congestive heart failure (2%), cardiac arrest, dyspnea, increased blood creatinine, and acute renal failure (1% each).
The most common adverse reactions (incidence ≥ 30%) were fatigue (56%), anemia (47%), nausea (45%), thrombocytopenia (36%), dyspnea (35%), diarrhea (33%), and pyrexia (30%).

USE IN SPECIFIC POPULATIONS

Since dialysis clearance of KYPROLIS concentrations has not been studied, the drug should be administered after the dialysis procedure.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call1-800-FDA-1088. For important risk and use information, please see full Prescribing Information.

Drove the 2 1/2 hours home and arrived by 2:30 PM. The roads were dry through the Craters of the Moon.
Also dry near Mackay, Idaho with snow on the MIne Hill. October 23 2012

Walked Kemmer to the Big Lost River Smelter Bridge (1.20 miles). Stopped to talk to a friend who was out looking for a photo opportunity.


Tuesday, September 11, 2012

2nd ASCT - Day 115 - September 11 2012

A year ago today, I was getting ready to be admitted the next day to the University of Colorado Hospital for my first autologous stem cell transplant. A lot has transpired since then. I'm still on this "Adventure with Multiple Myeloma" and who knew (or knows) how it will go. 

For now, I'm feeling pretty well, able to care for myself, and accomplishing most things I want to do. Trying to enjoy each second of each day.

But, back to NOW. 

I slept terrible and woke early at 4 AM. I was terribly bothered by the burning neuropathy in my left foot and leg radiating to my groin. I finally had to take a 1/2 percocet to get some relief. I hate drugs because they really interfere with my sleep, so I avoid them, if I can.

I finally got up and did what I do BEST - MAKE LISTS! My mind seems less able to remember little things, so I decided lists were in order. Bare in mind, I have ALWAYS been a list maker.

I wrote a note to my oncologist at St. Luke's because I did not have an appointment with Dr. Padavanija today, as I was just scheduled in the lab and infusion center. My note (I wonder if she could tell that I was on Dex?)


11 Sept 2012

Notes to Dr. Padavanija

1.    Velcade dosage change ? due to increasing neuropathy in L foot, leg, and fingers. Experienced as like stepping on a HOT IRON and radiating up the back of my leg behind my knee (much increase sensation at this point, waking me at night, necessitating ½ Percocet), and continuing to radiate up to my groin area (but, not as burning in the groin). I’ve rated the neuropathy as a 3 earlier, but would rate it 6 now. Not anxious to take more meds to dull neuropathy sensation. If you’d like to consult my UCH transplant team – call my RN Transplant Coordinator, Lindsey McMenimen and she can get an almost immediate answer for you.

2.    Zolinza Experience (started 4 Sept 2012 and due to end 17 Sept)
·      HA first night, but resolved with ½ Percocet
·      Dry mouth and very thirsty (have to drink 2 bottles of water each night)
·      Esophageal Reflux x2 – SUDDEN with no nausea (none after 1st 24 hrs)
·      Very full gastric feeling all the time
·      Awareness of pounding heart without increase in respiratory rate
·      Increase in blood pressure (140’s/high 80’s)
·      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

3.    Oral Thrush (started 7 Sept 2012)
·      Tongue very sore and coated.
·      Was taking Augmentin for root canal (started on 23 Aug 2012), so stopped it on 9 Sept 2012, even though I had one more dental apt scheduled for 10 Sept 2012.
·      Started Fluconazole 100 mg on 9 Sept 2012 (NEED NEW RX). Need help with continuing therapy as tongue is still “not right” and my sense of taste is off (may be Zolinza side-effect too).

Thank you, jm


I drove myself to St. Luke's Hospital MSTI in Twin Falls, Idaho (2 1/2 hours each way). The drive is easy for now with dry roads and with little traffic other than large trucks hauling hay to the dairies in the Magic Valley area, lots of rolling hills and curves (must stay alert), Craters of the Moon National Park, a mountain pass, 3 little farm towns, and you're there.
Had my blood drawn. My CBC is looking good still (note drawn after 7 full days of Zolinza 400 mg): WBC 7.8 (norms 4.5-11); hemoglobin 15.4 (12-15); and platelets 217 (norms 140-440). My neutrophils are high at 80, but that might be from my dental appointment yesterday.
I may have been a tad dehydrated for the blood draw since it is hard to drive 2 1/2 hours and not stop to use the bathroom - I'm going to have to change this in the future and give myself 3 hours to drive, so I'll drink plenty on the way and have time for bathroom stops.
My Chem Panel shows abnormal creatinine at 1.27 (norms 0.52-1.04) and my BUN is on the high side of normal at 17 (norms 7-17). These are kidney function tests and something to WATCH.
I saw Dr. Padavanija's nurse, Kendi, and she told me that they had call in to UCH about the neuropathy and Velcade dosage. So, I waited in a recliner in the Infusion Area and had a nice visit with the lady next to me who was being treated for ovarian cancer - great lady!

I also visited with the St. Luke's MSTI Social Worker who gave me the name and information of a local motel they have an agreement with - in case I ever have to stay over due to weather or how I'm feeling. It's a great deal of $49/night.

I had taken a "chill pill" and was calm during my wait. They bring you lunch at St. Luke's FOR FREE and give you a chose of items. I had the roast beef sandwich, but I didn't like it - so, I only had few bits and a fruit cup. I had my own peanut butter and jelly sandwich in my bag with me - so, I wasn't going to starve.

Suddenly, Dr. Padavanija and RN Kendi came in and told me that UCH indicated that I should probably follow the Velcade package insert on dosage and reductions due to neuropathy. 
Since I'm already on a 1mg/m2 dosage of Velcade, Dr. Padavanija recommended that we go with the Velcade package insert on schedule (see below).


Now, you might ask - why wasn't I on a once a week schedule for the entire month and instead on a twice a week schedule for 2 weekson and weeks off. IT WAS MY REQUEST of Dr. Myint and he thought it might work for me. I requested the schedule so I wouldn't have to make the long drive to Twin Falls for a two week period. I get myself in to so much sometimes.

So, this morning, Dr. Padavanija thought it was best NOT to get my Velcade subcutaneously today, skip my Friday, 9/14/2012 dose and begin WEEKLY Velcade (as recommended) on Tuesday, 9/18/2012. I agreed and departed for Walmart to get my prescription of fluconazole and bactrim filled. Again, Dr. Padavanija is very responsive and communication is excellent.

I stopped at my favorite treat, TACO BELL (now 2 PM) and ordered 2 crunchy tacos - they were delivered looking ideal and perfect. But, I cannot taste - my taster is really in bad shape - so, I took in the aroma of taco and tried to enjoy them.
Heading home in Bart (2006 Honda Pilot) - love him~
The bottom of Tom Cat Summit this afternoon heading home. September 11 2012.
On the way home, I stopped at the Craters of the Moon National Park Visitors Center established in 1924 and was surprised to see how my visitors they had, some speaking foreign languages. I bought a T-Shirt (Jani is groaning) because I like t-shirts.
I also stopped in Arco, Idaho where the Arco Advertiser (newspaper for our Big Lost River Valley) and looked up 4 old obituaries that I had requests for from the historical society. They bring out these big, dusty books and once I find the obituary, I photograph it with my camera and post it on the internet for the people at findagrave.com 
I don't know how and when I took this picture of me at the Arco Advertiser because this was taken with my regular camera and not my iphone which can reverse the image side  but, here it is.
 Our Big Lost River Valley is looking a little less forest fire free. The fires are slowly decreasing due to cool night time temperature and a lot of fire fighters on the lines up there about 60 miles north of us (this photo shows a view from Highway 93 heading north to Mackay, Idaho at Darlington, Idaho.