Relapsed High Risk Myeloma - Update July 13 2013

The skin around my Bard Power Port on my right chest is red and irritated. Perhaps I am reacting to carfilzomib, pomalidomide, or just low platelets and Tegaderm cover I had yesterday.

I had a rough night with little sleep. I had creepy legs and pain in both hips. I took pomalidomide alone back in April 2013 (5 -17 April 2013) and I had similar symptoms including no energy, left-sided headache (migraine-like) and left-sided neck ache. The pomaidomide also caused problems with my GI emptying  and I had belching, reflux, abdominal pain radiating to my back. In April 2013, I managed these issues with daily Senna S and Phillips Tablets along with increasing my daily fluids to 2,000-3,000 ml.

Pomalidomide (Pomalyst) has to be taken on an empty stomach - either 2 hours prior to eating or 2 hours after eating. 

This Cycle 1 includes the Pomalidomide 4 mg (Days 1-21) and intravenous carfilzomib twice a week. 

Hopefully, my 12 platelet count will SURVIVE this tandem chemo drug  administration enough to lower my 100 percent plasma cell involvement in my bone marrow, so I could make a few of my own platelets - wishful thinking!

Jani walked the dogs on the Mine Hill - it was HOT. I rested on the sofa.

 We replaced our father's old plastic lawn chairs with new lawn chairs. Those plastic ones are prone to crack and break, leaving you on the ground.

 We all went to the Sammy's Grand Re-Opening under new management for a FREE hamburger or hot dog. Had a good time visiting with friends.

Since Dad has a hard time walking, he just drove his golf cart through the food line.

 Sammy's new owner, Fran Magee.

2nd ASCT - Day 55 - July 12 2012

By the time I got back to Greeley, Colorado after all my tests at UCH, the dressing over my bone marrow biopsy was itching INTENSELY.  I took my own Durapore Silk Tape for the dressing since I'm allergic to almost all adhesives. As you can see, the nurse practitioner applied it liberally.

I was supposed to leave the dressing on for 24 hours, but I had Jani carefully peel it off tonight because I just couldn't take the ITCHING. So, I guess I'm allergic to silk tape now TOO.

Jani replaced the dressing with a piece of telfa non-stick dressing and a Tegaderm cover to hold it down.

Bard Power Port Site Continues to Heal - January 3 2012

The site on my right chest wall where my Bard Power Port was removed is still healing 19 days after it was removed. Some tenderness still. The curving red line at the bottom is from the Tegaderm dressing that was put on too tightly.

Day 93 - Bard Power Port Removal - December 15 2011

Jani and I made it down to UCH early. I was to check in at noon for the 12:30 PM Bard Power Port Removal procedure in Interventional Radiology.


First, we delivered Christmas goodies to Dr. Myint , the Nurses in the BIC, the Oncology Clinic Nurse Practitioners and Hank, the Transplant Nurse Coordinators, Donna and Derek in Scheduling, and the 11th Floor Inpatient Bone Marrow Transplant nurses.


Then, on to Interventional Radiology on the 3rd Floor of the Inpatient Unit. We were taken right back, given the warm blanket and told to wait. And wait we did.

I put EMLA cream (numbing) over the Bard Power Port site because they were going to numb the skin with xylocaine injections before they made the incision to lift the port out of its pocket beneath my skin. That's plastic wrap over the EMLA Cream. You apply the EMLA Cream 1 hour prior to the poking and it works great!

Nurse Practitioner Kendra consulted her attending physician about the blood clot in my heart and reviewed my existing MRI of my Heart, and 2 echocardiograms. I'm considered to be hypercoagulable (makes blood clots easily) and they felt that it was best to have the foreign body (Bard Power Port) removed to allow my body to resolve the blood clot in my heart. I'lll be on Fragmin (blood thinning) injections for at least 3 months. In addition, the chemotherapy pill that I take 14 days out of every 28 days has blood clots as a side effect...all the more reason to have the port removed now.


I was finally taken back for the 12:30 PM procedure at 2 PM.

Nurse Practitioner Kendra did the procedure. As with my Trifusion Hickman Catheter removal, a risk existed that taking the port out might "mobilize" the existing blood clot in my heart, but I didn't experience any problems. A lot of mashing of my chest wall and I'm absolutely SURE I'll be quite sore for the next couple of days after the xylocaine wears off. I was back with Jani in recovery by 3:15 PM.She was just starting to get concerned that it was taking too long.

 

Dressing over the former Bard Power Port site with Tegaderm since I'm allergic to almost every other adhesive. Click twice on the photo above and you can see how much thicker my hair is getting.


Our super nurse, Carolyn, did my vital signs a couple of times along with the discharge teaching (No shower for 48 hours and to call IMMEDIATELY for any shortness of breath or chest pain). Finally, at 3:45 PM, we were on our way back to Greeley in Bart (2006 Honda Pilot).


On our way home, I took a whole Percocet. About 20 minutes after I took the pill, I had a reaction like I was going to FAINT. I was just sitting in the passenger seat of the car doing nothing.  I was sweaty for a minute and then "the spell" quickly passed. While it was happening, I thought, "THIS IS IT - I'M DYING".  I don't know why I thought I could take a whole Percocet when I've only taken 1/2 tablet always before. Scared Jani too!


Now that I'm home, I seem fine - feels like someone punched me in the chest - not that I've ever been punched in the chest~~~~


My spirits are high --- I'm one more BIG STEP closer to being able to go home to Mackay, Idaho on December 27 2011 if the weather across Wyoming cooperates!!!!!

Chemotherapy Day 4 of Cycle 3 - Velcade/Decadron/Aloxi August 4 2011

My CBC today has the first normal WBC (white blood cell) count since my diagnosis. I continue anemic, but not as bad with Hemoglobin at 10.1 (norm 12-16) and Hematocrit 30.4 (norm 37-47). My platelets (clotting) have dropped below normal at 143 (norm 150-400), so I'll have to be careful not to bump in to things.

 Chemotherapy Day 4 of Cycle 3 - Velcade/Decadron/Aloxi August 4 2011. I drove myself to chemotherapy today and felt fine. My taster has been off for some time and is really "OFF" now - I'm enjoying the smell of food and the texture since I CANNOT taste it.

We did a test of Tegaderm clear film today on my left chest while I was at chemo. The Tegaderm was on for about 1 1/2 hours and when we took it off, it appears that my skin did not react to it - Yippee~

Tape Allergy is a concern as I approach the Trifusion Catheter Insertion for Stem Cell Harvest

My severe Tape Allergy is a concern as I approach the Trifusion Catheter Insertion on August 12 2011. I sent Dana Godec, RN, Transplant Coordinator at the University of Colorado photos of my skin reaction to the tape and steri strips used during the placement of my Bard Power Port in my right chest on June 14 2011. In addition, I ran a fever of 101.2 until the tape and steri strips were removed and my temperature returned to normal.

The only type of tape that seems NOT to react on me is Durapore Silk Tape. I bought several rolls online and take it to my chemotherapy sessions each time. I am also Latex Sensitive. Dana wants me to test Tegaderm on my skin prior to the Trifusion Catheter Insertion.