jm's Adventure with Multiple Myeloma: Relapsed High Risk Myeloma - Update July 13 2013

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Saturday, July 13, 2013

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.


  1. What is the brace for on the dogs leg Judy?
    Regards, Sharyn

  2. i aslo had a rash arms legs chest thought it may be from pomalyst;my legs blow up 2x the size thought it may have been from water pills i was given bu MD stoped all chemo for a week see what caused it its all gone now i think it was water pills that did it going to MT Sinai on tues see my chemo Dr see what he says and get back on chemo schedule pomalyst and dex and cytoxin(cant spell any of this or say them lol).hope your rash goes away Joe.

  3. Hope you soon get on the track of feeling better. I think of you often. Noticed the brace on Kady's leg....old age? Take care, JM!

  4. Sharyn and Marsha, Jani's dog, Kady-from-Kansas blew out her knee a couple of years ago and in an attempt to avoid surgery, Jani took her to a canine brace maker in Denver. They were able to make make Kady a perfect brace and she can walk just fine with it on. Kady does not wear the brace while in the house and get around fine too. jm

  5. Joe, I'm glad your leg swelling and rash have gotten better. The rash over my Bard Power Port is also better - in my case, it was probably from a combination of my new chemo and adhesive allergies. Good luck with your doctor's appointments at Mt. Sinai. jm