Relapsed High Risk Myeloma - Update July 4 2013

My legs are "creepy" and I have pain from my left toes to my left groin area - ended up taking 1/4 of Percocet during the night, which helped a lot. My gastrointestinal tract seems to be doing better now. My upper right back hurts - probably from post-shingles pain, even though I  am careful to take Faciclovir 3 times daily in 8 hour intervals.

Jane Koeckeritz and her granddaughters arrived late last night from Colorado (680 miles each way) on their way to Boise, Idaho for Jane's mother's 90th Birthday Party - I was already asleep in bed - but Jani got everyone settled along with Jane friend Corki (bridesmaid in Jane and Steve's wedding).

This morning, we were up early and making pancakes for breakfast. Suni (age 14) is an EXPERT and even made a Mickey Mouse pancake for her little sister, Nayana (age 7).

By 10 AM, they were on their way to Boise. Quick visit, but I enjoyed it. L to R: Judy Malkiewicz, Jane Koeckeritz, and Corki.

 Farewell photos from the front porch decorated for the 4th of July.

Then, Jani and I got ready and headed to Mackay's Kid's Park for the 2013 Annual Kid's Races (sack races, 3-legged races, egg toss, water balloon toss, wheelbarrow races). They provide free hot dogs and salads which support the Mackay School PTA. They ask for a donation for the drinks and desserts. We got a hot dog for Dad and Jani ran over to his house right on the corner of Kid's Park.

Judy Malkiewicz and Ken Krishnek July 4 2013.

 Judy Malkiewicz and Angie Hainline Jul 4 2013.

More photos to follow (check back).

Summary 11 January 2013 to 16 January 2013

On 11 Jan 2013, my blood counts were all very low and I HELD my Revlimid 10 mg oral dose and my Fragmin subcutaneous injection dose. I also had a pretty good case of post-shingles pain over my left mid-back area. I took an extra famciclovir (anti-viral) and the pain almost went away. When this shingles pain comes, it is SO TEMPTING to take a pain pill like Percocet, but it is just not necessary if I remember the anti-viral.

Over the weekend 12-13 Jan 2013, I was TIRED and other than doing some laundry, I watched a LOT of football on television. Revlimid speeds my GI Tract up and I end up needing to take Imodium every 3-4 days to keep the crampy diarrhea in check.

My father turned 92 years old on 14 Jan 2013. I went over to his place to wish him a Happy Birthday and did his dishes…not much of a celebration and I felt badly about that. His friends brought him a chocolate birthday cake that afternoon.

My hair is WICKY…won’t go straight and is frizzy at the ends – I’m sure changes from Cytoxan that I had just 2 doses of.

Monday, 15 Jan 2013, continued tired. Would like to go out and walk with Kemmer, but the outside temperature has hovered from MINUS 11 to 10 degrees above for the last week and it just isn’t possible.

Tuesday, 16 Jan 2013, we had another inch of new snow and I was able to shovel the front walk and in front of the garage doors – but, not the driveway. My pulse soared to 125, but came back down to 98 when I sat down.

Today, Wednesday, 16 January 2013, I packed Bart with my stuff for an overnight in Twin Falls, Idaho. My oncologist Dr. Padavanjia faxed an order for blood work to Lost Rivers Medical Center in Arco, Idaho (just 30 miles down the road) for this morning. Then, I was to call the results to see if I needed to proceed on to St. Luke’s Hospital in Twin Falls for my weekly chemo (carfilzomid/dex/Cytoxan).

My white blood cell count was low at 2.2 (norms 4-11.2), hemoglobin was low at 9.1 (norms 12-16); platelet count was at 69 (norms 140-440); and Absolute Neutrophil Count (ANC) low at 1.08 (norms 2-8).

 

All of the values are low, but slightly higher than they were on 11 Jan 2013, so that means they are treading upward in the direction of normal.

I spoke with RN Anne at St. Luke’s Hospital and she spoke with Dr. Padavanija who decided that they would HOLD my chemo for today and tomorrow (Cycle 3, Week 3, Days 1 and 2). I need to continue to take my Revlimid 10 mg tonight and I took 20 mg of dex this morning. Dex has anti-myeloma action in multiple myeloma and it helps with my energy too. Will continue Fragmin (anticoagulant) at:
Platelet Count Greater Than 50 - Take Fragmin 15,000 units
Platelet Count Less Than 50 - Take Fragmin 7,500 units
Platelet Count Less Than 30 - Hold Fragmin and Revlimid

My kidney function blood tests remain normal and I am happy for that.

Late this afternoon, I shoveled parts of my driveway and I’m sure the dex helped with that. And the 11 degree above helped too!

2nd ASCT - Day 111 - September 6 2012

Zolinza effects so far. Last night I almost threw up around 9 PM, but did not. I was careful to sleep more upright. Interestingly, I was not nauseated, I just had esophageal reflux suddenly which is very unusual for me. 


I also noticed that I had my post-shingles pain in my upper back area on the right side. I haven't noticed this for at least a month, so I hope I'm not going to break out in the shingles again. I take my Famciclovir 500 mg every 8 hours using an iPhone app called Pillboxie. I highly recommend Pillboxie to anyone who has to remember to take meds and has an iPhone.










Slept better last night, took a Pepcid in the night, and woke without an appetite, but not nauseated. I think this is good since the dexamethasone 10 mg has had me ravenous and eating every thing in site. I think I gained 8 pounds over a 2 week period, but that may not be true since my clothes seem to fit the same.

I also have increased burning neuropathy which I have experienced as a burning sensation on the bottom of my left foot, radiating up the back of my left leg to my thigh area. I'm sure this  is a Velcade issue, even though I am getting it subcutaneously.

I have good energy today. However, my lack of appetite continues - I eat anyway! Ha

The air quality improved here in Mackay Idaho overnight from the forest fires and Kemmer and I walked the Mine Hill 1.50 miles with ease.

Kemmer looks heavy below, but it's all HAIR~

We went to my niece, Lindsay's Memorial for a visit. Miss you Linds.

2nd ASCT - Day 72 - July 29 2012

Walked on the the Mine Hill with Jani and the dogs this morning. We went 2.06 miles at a brisk pace. I was CAREFUL to watch every step, so I wouldn't take another tumble. My head is healing, but still sore. My right ear hearing loss has improved. I still don't think I'm hearing as well out of my right ear, but I'm pretty sure it was just fluid in my middle ear which is getting better each day now.

The happiest dogs on earth - Zoe, Kady, and Kemmer.

 This is the location of my tumble on 20 July 2012 resulting in my head laceration.

Jani's head bump is healing and mine is hardly noticeable with all the wrinkles~

Jani worked on cleaning up Paco's truck and rolling walker today.

 And, my lifelong friend, Vickie Mae Johnson Northrop stopped by for a visit!

I drove to Idaho Falls (200 miles roundtrip) BY MYSELF yesterday to get my famciclovir prescription (prevents shingles) refilled. I did fine - a good practice round for when Jani departs for Colorado the second week in August.

It will be a week or maybe 2 until my continuing chemotherapy is figured out with insurance, so I'm just going to enjoy myself until then. I have been energy and didn't even nap today. However, I did go to bed just before 8 PM.

2nd ASCT - Day 41 - June 28 2012

My hair follicles opened up and tiny little hairs pushed up over night...fuzz all over my entire scalp...

But, I still look BALD which doesn't bother me at all...I NEVER have hat-hair!

Another good day for me with only minor gastritis all day. The neuropathy in my left foot and leg is pretty constant (from Velcade) and I have pain over where I had shingles on right upper back most of the time too which I take one half Percocet for every 8 hours. I have to be EXTREMELY careful to take my Famciclovir every 8 hours or the former shingles pain is AWFUL!!!!!!! These 2 pains, I'll just have to live with it seems as they don't seem to be changing over time.

Zoe decided that Kemmer was having too much fun without her and without too much coaxing jumped up on Jani's 4-wheeler and acted like she does this every day.

2nd ASCT - Day 34 - June 21 2012

Had a long bad day at black rock. My raw stomach was hurting me all day and I couldn't seem to do anything to make it better! Couldn't walk outside because it was too windy.


Had DISH satellite television installed today - much to Jani's DELIGHT! Here are the expert installers, Greg and Dave from Star West Satellite out of Idaho Falls.

Around 5 PM, I developed a HORRIBLE AWFUL PAIN in my back radiating through to my stomach. By 7:30 PM, I finally figured out that I had forgotten to take my Famciclovir (shingles protection) and the pain was right over where I had my original shingles outbreak before I was diagnosed with multiple myeloma. I cannot understate the pain from shingles even if you cannot see any skin lesions!!! Within 30 minutes of taking the Famiciclovir (late), the pain let up and I took Percocet and was able to sleep. Jani has now programmed my phone to alarm at all of my Famciclovir times (7 AM, 3 PM, and 11 PM)...this day was NOT FUN for either of us!

2nd ASCT - Day 17 - June 4 2012

Jani packed up all of our stuff and we checked out of the Marriott Residence Inn this morning early. We were both tired because neither of us slept very good last night.

Arrived at the UCH BIC for blood draw at 8:30 AM. I gave a stool sample since I still have a lot of movement south requiring daily 2mg of Imodium.

Then we waited in the exam room for the lab results and my appointment with Nurse Practitioner Karley. I felt weak and tired. I wish I felt better, but today is only Day 17.

My hair is growing a tad (photo with magnification).

My lab results were very good for Day 17. My white blood cell count is 3.1 (norms 4-11.1); hemoglobin 12 (norms 12.1-16.3); and platelets 194 (norms 150-400). Just about the closest to normal labs that I have had for the last year.

My ANC is normal at 2.0 (norms 1.8-6.6)

 My stool sample was negative for CDifficile Toxin, so that was good.

 My diet has been good as my protein and albumin are within normal limits. However, the dietitian has told us that these blood tests are NOT GOOD INDICATORS of nutritional status.

NP Karley spent a lot of time with us and answered all of our questions. She thinks I might have to add compazine to control my nausea. However, I took some compazine after my VD-PACE and it really put me out for too long --- so, I'm going to try to go without it. 

Karley thinks I'm doing well for Day 17 post ASCT and said it will take a long time for me to recover since it is my 2nd ASCT. The sores on my tongue are going to require treatment doses of acyclovir for 5 days (during this time, I will not take Famciclovir). My sick tongue has my entire self sick!

Blood Results for Today and Over Time - February 22 2012

Had my blood drawn today and decided to make a spreadsheet of all my results since I returned to Idaho after my stem cell transplant in Colorado. I've highlighted all the abnormal results in yellow. The only value that concerns me is the LDH value of today, February 22 2012. The LDH is at 672 (norms 313-618). I've decided not to worry about it until my next blood draw which will include my multiple myeloma markers (Beta 2 Microglobulins, Immunoglobulins A, G, M, and Kappa Light Chains) on Monday, February 27 2012.

This week, my white blood cell count continues below normal at 2.1 (norms 4-11.2) and my platelets have improved this week at 172 (norms 140-440). My hemoglobin in normal at 13.5 (norms 12-16).

I continue to walk daily. I walked a total of 16.77 miles, mostly on the Mine Hill with elevation gain. 

I've not been on any chemotherapy drugs this week. However, 2 days after I finished up my last 14 days of Revlimid on 13 February 2012, I woke with a terrible spasm in my low back similar to the spasm I had in late July 2011 after a revlimid cycle. Required pain pills to get me through it and I was pretty much better in 48 hours. I hung upside down on my inversion table once which I didn't know if I should do considering that I still have the blood clot in the right atrium of my heart. I continue to have pain in the back of my left leg and "creepy legs" at night. My shingles breakout of last week has healed with the extra 250 mg of famciclovir. 

Dr. Myint at UCH has approved me getting my next cycle of Velcade (same dosage) subcutaneously vs intravenously. I hope this helps the neuropathy in my finger tips from getting any worse.

Day 94 - 1st Day Post Bard Power Port Removal - December 16 2011

I just couldn't take the itching beneath the dressing over the site of the Bard Power Port today. I was instructed to leave the dressing on for 48 hours, but I had to to remove it. As you can see, after I lifted up the edges of the Tegaderm dressing, you can see that my skin was reacting.

The original dressing did not have a spot of blood it - so, I don't think it mattered that I took it off. My chest is not as bruised as I thought it would be. The horizontal incision is closed with dissoluble sutures and glue.I have quite a bit of pain in my chest wall and I'm taking 1/2 Percocet every 6 hours. They called from UCH Interventional Radiology today to see how I was doing. They said to call them back if the pain persisted beyond 1 week.

 My chest wall after the removal of the Bard Power Port on my R (left side of photo) and Trifusion Hickman Catheter on my L (right side of photo).

 I also think I'm having the beginning of a shingle outbreak on the back of my right thigh - feels inflamed and itchy at this point. Very hard to photograph. I took an extra Famciclovir 250 mg and I think that helped. I'm on Day 11 of 14 with my Revlimid 10 mg maintenance chemotherapy and just 2 weekly cycles of Velcade/Dex out of 4  - so, maybe that has lowered my resistance to shingles (varicella or chickenpox virus).

Back of right thigh

My January 2012 supply of Revlimid arrived via UPS this afternoon. I spent a lot of time on the phone yesterday making the arrangements with the pharmacy - this is going to be a monthly CHORE!

Day 14 Discharge from University of Colorado Hospital September 27 2011

 "I want out that door". My discharge was scheduled for noon and I was ready!

 Jani hauled the last of my things out to the car with her rolling dolly.

 Really hard to do the hand foaming as she leaves the room with the rolling cart - what a good sport - that Jani!

Nurse Sarah discusses the discharge instructions with me. Arrangements had been made with a home health care agency to come to the The Timbers to give me intravenous Foscavir for my shingles. Then, the social worker, Melissa, came in and said the medication was unavailable (it is difficult to get in the U.S.) and they were going to have to come up with another plan for my shingles therapy. Hence, my discharge was delayed more than 4 hours!!!!! At one point, after I was officially on paper discharged - it looked like they might re-admit me just to give me the shingles medicine through Thursday September 29. I remained calm and told them if I had to stay - they owed me a trip outside in to the air - at the very least. Finally, all the powers that be decided that I could be discharged on an oral shingles medicine called Famciclovir - WooHOO!

 jm with mask on as I leave the University of Colorado Hospital Room 1125. It's difficult to see with the mask - but, I'm grinning ear to ear!

 I sat down in the Atrium area of the hospital while Jani went to the Atrium Pharmacy for the 3rd time today - to pick up the shingles medicine. That piano plays all by itself. I have to wear a mask whenever I'm going to and from the hospital from now on.

Hallelujah - AIR AT LAST - I'm outside again and loving it!!!!!