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
Plasmapheresis and dialysis on the same day? My body is buzzing; literally buzzing. But it all seems to be working. I've pivoted emotionally. I've got to do what I need to do. Thank God for my new, three line catheter! My neck is sore, but no big needles. Love that! Dialysis is starting to hit
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
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
It's been 100 days since I received an infusion of over 8 million of my own stem cells in October. Even though it was my second stem cell transplant in less than six months, this is uncharted territory for me. My recovery from the first transplant this summer was interrupted around this time. My hair
Not to say that there weren't hiccups, but I was administered my Kyprolis IV late this morning. I took 40 mg dex, and 3 mg pomalidomide, after I learned my platelets had recovered enough to proceed. I tried to get a few things done this afternoon, but basically passed out. I'm up and about now.
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
No fever. Resting heart rate down to 80 beats a minute. Oral supplementation at home brought my potassium and magnesium levels up to normal levels. My oncology nurse, Deb, started the IV in my left hand on the first stick Monday. What could go wrong? Running my CBC should have been a formality. Not so
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
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
I'm part of the club: experiencing side effects caused--in part--by ongoing maintenance therapy. I was lucky for so many years. Sure, three or four hours after doing the RVD thing I might feel like I got hit by a truck for a few hours. My neutrophil (ANC) and white blood count tended to run low.
Fellow multiple myeloma surivor, Nebraskan Jim Omel, is one of the smartest guys I know. A retired physician, Jim works tirelessly to help his fellow patients. Readers often ask me if it matters when they take their dexamethasone. Scheduled to start consolidation therapy this week, I've been wondering about it, too. I emailed Jim earlier
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
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
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
I understand that all of my reader's don't celebrate Christmas. After all, myeloma doesn't respect religious or political boundries; it's an equal opportunity dose of misery. Even so, I thought that Christmas Eve might be the perfect time to catch up on how some of our friends we've been following this past year are doing.
Thursday I ran an emotional post about being "myeloma free." Everyone understands that's only an expression, right? Few myeloma patients/survivors are ever truly cancer free. That's one of the infuriating things that sets our blood cancer apart from so many others. Once it develops, it is nearly impossible to ever rid ourselves of myeloma completely.
I promised to follow up on yesterday's amazing news. Dr. Tricot reassures me that my tests confirm there isn't any active myeloma left. Yet I didn't go into our meeting expecting such good news. Late Wednesday night I was able to take a sneak peek at my PET scan results Tuesday. I’m usually pretty good
Last week I had the opportunity to interview the Senior Director of Clinical Research for Janssen Pharmaceuticals, Dr. Tahamtan Ahmadi, PhD. Janssen is the company that manufacturers newly FDA approved Darzalex (daratumumab). I promised a more detailed follow up and I'm glad to follow through. Here's a link to the original post: Big news about
I unceremoniously experienced my first case of C. diff during the first of my two, modified autologous stem cell transplants this summer. All I knew is everyone wore yellow paper gowns when they came in and out of my room--and I needed to pull an IV pole with me as I sprinted the six steps