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.

Pomalidomide (Pomalyst) Update For Relapse After 15 Doses - March 19 2013

Tuesday, 19 Mar 2013: I've taken 15 doses of Pomalidomide (Pomalyst) in Cycle 1 for my relapsed myeloma. I should have had my blood tested today, but Dr. Padavanija is out-of-town and they scheduled me for Friday, 22 Mar 2013 at St. Luke's Hospital in Twin Falls, Idaho.

I've decided that I'm way too puffy and effected from Dex 40 mg weekly on Tuesday's, so I lowered the dose to 30 mg today, dividing it in 2 doses (breakfast 15 mg and dinner 15 mg). I'll discuss this with the doctor on Friday at my appointment.

Again, the St. Luke's Hospital MSTI Boise Pharmacist called today to check on my Pomalyst side effects. Not much different than last week except I am constipated.

• burning scalp (improving a lot)
• creepy legs (had before I started Pomalyst, but seems worse at night – haven't taken much oxy this week (maybe two doses of 1/4 tab).
• increased neuropathy of left leg especially from knee to groin – was about a 2 (1-10 scale) prior to Pomalyst and now 4. I am attributing my left hip pain to neuropathy now since all of my tests (plain x-rays and MRI were normal). At times, I had right hip pain too.
• tired, especially after taking - serious fatigue each afternoon - can't do anything. Easily out of breath, but lungs are clear with no cough. Don't let these walk photos fool you in to thinking I'm leading a normal life - I AM NOT!
• constipation - working with 2-3 Senna-S nightly and 2 Phillips Magnesium tablets nightly - without much success. Experience GI reflux on dex day (Tuesday).

Monday, 18 Mar 2013:  No gastritis at all this day. Walked the Mine Hill with Jani and the dogs this afternoon. 0.71 miles at a 4 percent grade up and then down to Jonah at the Cattle Guard. Jonah had a flat tire over the weekend they found a nail in the tire this morning.

Kemmer and me. ICY COLD WIND

Jani, Zoe, Kady, and Kemmer with Mt. McCaleb in the background - Jani ended up walking the Kemmer and Zoe (sisters from the same litter who will be 5 years old on 6 Apr 2013) all the way home and I drove from the Cattle Guard with 12 year-old Kady.

Monday night into Tuesday, I had terrible neuropathy and creepy legs and was unable to sleep...most probably from the Mine Hill walk Monday.

Tuesday, 19 March 2013: I was too tired to do much today. Jani went with Ron rock hunting.
She found a geode.

And a lucky horseshoe for me!

Edema Swelling and Distended Gut - December 6 2012

Woke with decreased urine output throughout the night, felt bloated and swollen in my gut - much like I felt on 14 Nov 2012 after the 3rd week of carfilzomib in Cycle 1. My heart is pounding and I'm a tad out of breath. I have no swelling in my feet and legs, but my gut is distended and my face swollen (moon facies).  I decided to take 4 mg of Lasix. That helped increase my urine output, but my gut continued uncomfortable and distended. I took a Phillips Tablet and Senna-S without relief. I've been pretty miserable all day.

I ate little throughout the day and went to bed early.

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.