Relapsed High Risk Myeloma - Update June 26 2013

Up at o'dark thirty to depart at 4:45 AM (that's early folks) for St. Luke's Hospital in Twin Falls, Idaho. I slept the whole way there while Jani drove. Was pretty much out of breath as I walked from the parking lot to the Infusion Center.

Had my labs drawn from my Bard Power Port as soon as we arrived just after 7 AM in the MSTI Infusion Center. Drew CBC, Chem Panel, LDH, and SPEP.

Then off to Interventional Radiology for my 12th bone marrow biopsy since diagnosis (24 May 2011). 
Bone Marrow Biopsy History:

1. 24 May 2011 (Diagnosis, Dr. Moore in Ft. Collins, Colorado; traditional trocar)
2. 20 Aug 2011 (1st at UCH with Glen, NP; traditional trocar)
3. 1 Sept 2011 (Karley, NP, UCH, traditional trocar)
4. 2 Nov 2011  (Karley, NP, UCH, tradition trocar)
5. 9 Mar 2012  (Karley, NP and 1st with OnControl Driver, UCH)
6. 3 May 2012 (Shannon, NP with OnControl Driver, UCH)
7. 12 July 2012 (Trish, NP with OnControl Driver UCH)
8. 17 Oct 2012 (Angela, NP with OnControl Driver UCH)
9. 20 Dec 2012 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
10. 20 Feb 2013 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
11. 26 Apr 2013 (John Gray, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
12. 26 Jun 2013 (Kirk Peterson, MD. St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar

RN Mendi was there to greet Jani and I. My tongue was so DRY and STUCK to the roof of my mouth from being NPO (nothing by mouth) since midnight that it was difficult to articulate. 

My CBC and Chem Panel results came back and and were all LOW.  White blood cell count low at 1.8 (norms 4.5-11); ANC (absolute neutrophil count) low at 1.18 (norms 1.90-8.8); platelets LOW at 28 (norms 140-440); and hemoglobin REALLY LOW at 7.3 (norms 12-16) - no wonder I was out of breath with the walk from the parking lot to the hospital.

My LDH was 1040 which was down from 1349 (norms 313-618) which I'll take as a good sign!

My SPEP results will take a week, although, I'm pretty sure I'll be able to get my M-Spike result by this Friday, 28 Jun 2013.

My Chem Panel wasn't too bad, still showing mild kidney failure with a creatinine of 1.09 (norms 0.52-1.04); BUN 18 (norms 7-17) and GFR 54 (norm greater than 60).

RN Mendi had to make a number of phone calls to determine if I was going to have the bone marrow biopsy 1st, followed by 2 units of blood transfusion or the blood transfusion followed by by the bone marrow biopsy. 

Kirk Peterson, MD Pathology decided to do the bone marrow biopsy first under conscious sedation (5 mg Versed and 100 mg  Fentanyl). 

Then send me back to MSTI Infusion Center via a wheelchair for 2 units of packed red blood cells transfusion and 10 mg of lasix. I was drugged from the conscious sedation and napped off and on while I got my blood. The 10 mg of lasix helped to reduce my "michelin tire look".

I'm pretty sure my left frontal sinus infection is back, so the nurse called Dr. Padavanija and got a Z-Pack prescription for me which I'll start tomorrow.

Jani went shopping with a long list at several stores.

We left Twin Falls at  3:45 PM. I felt AWFUL...every bone in my body stiff, headache, terrible burning gastritis, and sleepy. It was a Dex 10 mg day and I hadn't taken it until I got home. As much as the Dex swells me up - it does help my aches and pains. Plus Dex actually treats myeloma. Went to bed feeling ROTTEN ROTTEN...Jani checked on me several times.

My GI tract is in the rapidly south mode and I took some Imodium.

History of All Blood Transfusions Since Diagnosis May 24 2011

1. Jun 26 2013 (2 units)
2. Jun 11 2013 (1 unit)
3. May 14 2013 (2 units)
4. May 7 2013
5. Apr 19 2013
6. Apr 10 2013
7. May 16 2012 (2 units)
8. April 2 2012  (2 units)
9. Sept 22 2011 (2 units)
10. Sept 7 2011 (2 units)

Relapsed High Risk Myeloma - Update June 8 2013

Much better night and I'm feeling much better, except still having RAPID GI Travel South. This is good since I have not had ANY stools since Tuesday, 4 Jun 2013 after they gave me Imodium at St. Luke's Hospital in Twin Falls and my gut was very distended. It is always such a balance. I took 1/4 Imodium tablet late this afternoon and everything seems in balance in again - at least, I hope so.

I continue on Cycle 2, Day 6 of Revlimid 5 mg, along with continued Dex 10 mg every other day.

I spent most of the morning one-with-the-sofa working on my computer and dozing off at the same time --- and YES, I have dropped that MacBookPro several times off my gut to the floor --- and thankfully, it still WORKS!

Jani and I went to look at the Mackay Miner's for blog material. You have to have special permission to look at the books and wear gloves, which rarely granted since all of the old Mackay Miners are available on microfilm in the Mackay Library and the Boise Public Library in Boise, Idaho.

After about an hour at the Women's Club, we drove out the Mt. McCaleb Cemetery to pick up the drooping mums off our graves so they won't be in the way of mowing this week. Waved hi to Louise Wingert who was just leaving the cemetery. 

We still have to update a couple of corrections to the Memorial Day, Mt. McCaleb Cemetery Alpha List Book, Block List, and Veteran's list and then we will be ready to print again.

Jani walked Kemmer and Zoe on the BLM Road South from the Cattle Guard on the Mine Hill. It was 85 degrees and EVERYONE was HOT.

Stopped at Paco's to pick up some frozen food from his large freezer. He was entertaining his neighbors on his front porch, Ron and Anna Oxley to a glass of wine along with Mike Stapleton who is here at his Idaho home from Pennsylvania (he drives the entire way). Mike drinks O'Douls, which Paco keeps just for him. Below is a picture of Mike's Entry Gate which is a simulation of the Empire Copper Mine Aerial Tramway System made by Casey Whitworth and Merritt Lanier...the most creative gate in the Big Lost River Valley!

Paco loves his Happy Hour company and I love that he loves it!

Relapsed High-Risk Myeloma - Update May 17 2013

So, how do I feel? Just to remind you,  I'm in Cycle 1 of Bendamustine/Revlimid/ Dex, which began 7 May 2013. I have only 5% normal bone marrow function with 95% plasma cell infiltration.

1. You only received the Bendamustine IV Day 1 and 2 of the 28 Day Cycle.
2. This is Day 11 of Revlimid 5 mg on the 21 day cycle. I seem to be tolerating the Revlimid okay except for days of diarrhea treated with Imodium, followed by constipation, etc.
3. I continue to take 10 mg of Dex every other night. I forgot to take my Dex one "due night" 16 May 2013 and the next day I felt like a person made of stone - could barely move around and get from laying or sitting to standing - it was REALLY HARD. All of my bones hurt, especially my left arm with the hardware and screws and by back - so, I'm NEVER going to miss my Dex dosing again, even though I look so puffy and have the appetite of an a wolf.
4. I will finish my Z-Pack antibiotic for the sinus infection tomorrow 18 May 2013. I've had thick - copious - NASTY drainage (I'll spare you the photo, but you know I have one) and I might need to ask Dr. Padavanija for second round of antibiotics to clear this up a bit more when I see her again 21 May 2013. The terrible pain I had in my left sinus area is much improved, although I still have a bit of left-sided neck - headache.
5. Holding Aspirin 81 mg while platelets are so low.

Amazingly, I feel pretty well - especially in the mornings. I am sleeping better now that I am taking 5 mg of Xanax at bedtime. 

I have to be careful since my platelets are only 18 (norms 140-440) not to bump myself, fall, or do anything that might start bleeding, because it is unlikely we could get it to stop and I'd bleed out OR have a stroke - so, I've been doing a lot of couch potato computer work and watching Jani and Faye WORK around me!!! and I mean WORK - 2 days of cleaning.

BED CHANGER - So work work work was the order for the day.  Here is Faye, the changer of beds!

TOILET CLEANER.....and the cleaner of toilets!

TRANSPORTER - And of course transporting cleaning supplies.

LAUNDRESS - Here's Faye tending to laundry duties!

BUSH PLANTER - Faye the consummate gardener.

POOPER SCOOPER - Faye tends to tidying after three golden retrievers.

LAWN MOWER - Here's Faye mowing the lawn, appropriately attired in boots with adequate eye protection.

WEED WHACKER - And no lawn duty is ever complete without expert trimming.

FLOOR WASHER - Here's Faye relishing washing the kitchen floor on her knees!

SCANNER EXTRAORDINAIRE - Faye, who is also technologically gifted, helps with scanning 9 million documents for Judy's genealogy projects.

VACUUMER -And now it's time for vacuuming and vacuuming and vacuuming....remember the 3 trievers aka hair-balls!

DISHWASHER - Faye is also an expert dishwasher!

CARWASHER - Faye's talent extends to washing Jonah.

SLACKER - Faye get a very very brief break and a tiny yogurt snack - aren't we generous!

FAYE, Ph.D. - Faye inherits Judy's regalia cap - looking smart and so multi-talented!

And with all the work complete, now it's time for some farewell photos.

Until we meet again dear Faye.

And now the CONTEST 

This is a REAL CONTEST

Some of the Faye photos were staged and some were real. Which tasks were STAGED?

Below in the "COMMENTS", list those activities that you believe were staged. It's okay to be Anonymous in the comments, if you win, I'll get your info later.

The 1st person to correctly list the staged activities, will win this authentic MACKAY, IDAHO one size fits all - cap (will be mailed to you only if you live in the USA).

All good adventure stories need a CONTEST!

Calendar January 9 to 24 2013

Cycle 2 Week 2 Day 1 Carfilzomib and Dex - December 3 2012

I woke with sinus infection on the left side of my head and cold symptoms (runny nose, sore throat, but no fever). I took Augmentin last night and will continue today. I took 1/2 Imodium because Augmentin always gets my guts going south fast.

Bart skated across the Craters of the Moon this morning (icy roads for 45 miles or so) to St. Luke's Hospital MSTI in Twin Falls.

The Augmentin - Revlimid combination really got things moving south QUICKLY and I barely made it to a gas station bathroom. Then, I took another 1/2 Imodium. Imodium really DRIES my mouth out.

Had my blood drawn, but there was mix-up on what tests were ordered, so I had to WAIT for the Comprehensive Chem Panel. I was there 2 1/2 hours before the labs were back and RN Letia started my IV. 

My cbc (complete blood count) was better than I thought it would be. White blood cell count was up to 3.5 (norms 4.5-11) from 1.9 on 30 Nov 2012. Hemoglobin was low, but good for me at 11 (norms 12-15); and my platelets were down to 87 (norms 140-440) from 108 on 30 Nov 2012.

My kidney function tests were NOT ALL normal this week, but close. Creatinine was 1.09 (norms 0.52-1.04); BUN normal at 14 (norms 7-17); BUN/Creatinine Ratio normal at 13 (norms 10-20); and GFR abnormal at 54 (norm is greater than 60).

I received my Cycle 2, Week 2, Day 1 Carfilzomib (27 metered square dosage); and 20 mg of intravenous dex. I think the dex helped my sore throat...I was at the Infusion Center for 4 hours...needed to take a chill pill....

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 +3 - May 21 2012

Woke this morning with a sore throat that extends down my throat where you cannot see it with a flashlight. It really hurts below this point the most. Very uncomfortable and makes even swallowing water difficult.


This is the best photo I could take this morning May 21 2012.

By 4 PM, the redness in my throat has increased and it is more and more painful to swallow.

They are giving me a pain pill before I eat and that helps with the swallowing. I have almost not been nauseated at all since I'm receiving intravenous Kytril twice a day a 9 AM and 9 PM with intravenous Nexum and Ativan by mouth when needed. I feel like I have the same kind of sores in my stomach that I see in my throat. They are running maintenance intravenous fluids  on me continually which is helping to keep my throat a tad moist and less painful. I've been able to eat a couple of soft sandwiches on soft white bread today.

I'm having issues with things going south FREQUENTLY and they now have an order to give me Imodium to slow things down. Boy, this is a fun process~