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Therapy

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8 02, 2016

I’m not dead yet!

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The commonly used name here for plasmapheresis is plasma exchange. I"m being hooked up for my third, three hour round of plasma exchange. Honestly, I'm in pretty bad shape. I'm not eating. I could give you a lot of technical information about my situation, but the bottom line is this: Five doctors and none can

6 02, 2016

My world turned upside down

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As difficult as my myeloma journey has become, the one silver lining has always been my excellent kidneys; no worries on that front. That all changed today. I learned today that my kidneys are/have failed. I was devastated to get the news; with both Pattie and her sister working for Davita Dialysis, I've heard horror

5 02, 2016

Medical mystery worthy of reality TV

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I'm a medical mystery. Why should I be surprised? Some of the medical news is good. But overshadowing basic improvement are a long list of unanswered questions. I've never had more blood drawn in my life! Let me pause here to apologize to a number of readers that commented following yesterday's post. Our WordPress blogging

24 01, 2016

FDA expands access to Kyprolis. Big news?

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Friday the FDA expanded it's approval of how and when carfilzomib (Kyprolis) can be used. Trumpets sounded. I counted eleven industry news outlets that led with the story. My reaction? Big yawn. I wasn't even going to post about it. But Saturday a half dozen more publications ran stories about it, so I felt we

20 01, 2016

It shouldn’t be so hard to get excellent care

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Reliable healthcare. One would think all of the money spent on our behalf would guarantee a consistent standard of care. Au contraire! It's disheartening for me to admit it, but without a dedicated caregiver advocate--or patients like us that work tirelessly to stay up-to-date--it's likely that the care received by someone who isn't paying attention

18 01, 2016

Medical Update: Stinky news

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Rough weekend. As I explained in a post last week, I'm not used to backsliding--post transplant--once I start improving. Once again, diarrhea is a real problem. Imodium or Lomotil is only slowing things down for three hours at a time, making this the "I'm in danger of becoming dehydrated," type of diarrhea. Is that why

16 01, 2016

Blood Glucose, MGUS, Myeloma & Metformin (Part Nine)

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A lot has happened since I ran two of the final installments about the importance of controlling blood glucose by Danny Parker: Blood Glucose, MGUS, Myeloma & Metformin (Part Seven and Eight)   ASH, unscheduled trips to the ICU, Iowa City drama. A lot went wrong in December. I'm still having trouble bouncing back from

5 01, 2016

Stem cell transplant fallout front and center in 2016 (Part Two)

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I kicked off my 2016 posts yesterday this way: "Euphoria over a myeloma free PET scan doesn't make everything else OK. I've been struggling with post transplant side effects... Still plenty of drama to kick off 2016." Monday I wrote about how stressful insurance mix-ups can be. And I didn't even get into the financial

2 01, 2016

The power of combination therapies

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New checkpoint inhibitor studies combining the experimental drug, Keytruda, with Revlimid, are working in patients who have become refractory to Revlimid. I found this great article on Linkedin.com on Saturday. I didn't even know there was such a thing. I thought that Linkedin was a professional job networking site. Apparently, professionals in healthcare can post

29 12, 2015

Key research breakthroughs at ASH

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Did you see the MMRF's outline of important myeloma related news at ASH this year? Short and to the point. American Society of Hematology (ASH) Key Takeaways Earlier this month the MMRF attended the 57th Annual Meeting of the American Society of Hematology (ASH) in Orlando, Florida. In last month’s newsletter, Blake Morrison, PharmD MMRF

28 12, 2015

My Patient Power interview at ASH

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Saturday I shared a link to an interview Jenny Ahlstrom did with me the second day at ASH. Can't get enough of me unabashedly sharing my opinions about myeloma therapy options on video? Then fasten your seatbelts! CLL survivor and dear friend, Carol Preston, interviewed me at ASH for Patient Power. The link below should

26 12, 2015

Video highlights of my first few days at ASH

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Good friend and fellow myeloma survivor, Jenny Ahlstrom, is a lot better at the technical side of blogging than I am. She uses a lot of video on her site. Jenny interviewed me on Sunday at ASH. You can listen to it here: http://www.myelomacrowd.org/live-from-ash/ Now that we're past the holiday, I'm going to be going