I wanted to backtrack and focus on what may be the most important factor when analyzing the state of my multiple myeloma: my dwindling number of therapy options.
I’m relieved, disappointed, concerned and overwhelmed–all at the same time. The long awaited meeting with Dr. Tricot yielded a mixed-bag of good and bad news.
I’ve been asked from time to time why I don’t post more pictures. I’m a writer; that’s what I do. I paint pictures using words instead of photos. Today I’m going to make an exception and share pictures of Tuesday’s sternal bone marrow biopsy in living color.
My four day long, unrelenting fever is ongoing. I described it as a “neutropenic” fever yesterday, because it felt so much like a half dozen others I’ve had in the past. Turns out I was wrong.
Like many of you, I’ve been worried about our dear friend, allogeneic stem cell transplant recipient, Tom from Ohio, ever since his wife, Whitney, shared that he was facing another setback and had been rushed to intensive care. Whitney kindly took the time to email us about how Tom is doing:
Reality check: 21st Century Oncology just called confirming my next Kyprolis infusion on Monday. Cytoxan, Kyprolis and dex, OH MY!
The Multiple Myeloma Research Foundation (MMRF) just announced a collaboration with Adaptive Biotechnologies, the University of Torino and Amgen/Onyx to perform sequencing-based assessment of minimal residual disease (MRD) on hundreds of multiple myeloma patients.
Think I have an advantage knowing a lot of myeloma specialists? How about the invaluable help I get from our readers? Check-out the sage advice a patient and caregiver from Michigan emailed me on Tuesday:
At the end of Saturday’s presentations I shared something very personal with our group.
My health care team is faced with a complicated dilemma. On one hand, pomalidomide/dexamethasone therapy continues to whittle my numbers down; my M-spike has systematically dropped from 0.7 to 0.2 over a ten month period. On the other hand, myeloma activity is steadily increasing in and around my bones. Talk about mixed messages!
What did my test results show, and what does Dr. Tricot propose we do about it?
I started my long, cold trip up to Iowa City for testing, buoyed by some unexpectedly good news.
Wednesday I drove back to Tampa to visit my old support group, and promote my Beach Party in March. A dozen or so members plan to party with us! As I closed my remarks, someone in the group asked me this: “Why do you need fly all the way to Iowa for a second opinion? […]
I’m listening to the broadcast I recommended to you yesterday, featuring Dr. Robert Orlowski from M.D. Anderson. The news is encouraging. I’m more determined than ever to hold on and live long enough to benefit from exciting new immunotherapies. Might they save my life?
It’s easy to say my goal is to stick around until another new therapy comes along. But how? What’s my plan? Access to the best new immunotherapies are still a couple of years away–and I’m running out of options.
I receive a half dozen emails about a topic for every one comment you see after I publish a blog post. I enjoy getting emails from readers. Often they’re uplifting, helping me power through another day. And I get some of my best post ideas from them. Here are several examples:
Last night’s Cure Talks broadcast was both encouraging and overwhelming. Myeloma Institute of Research and Therapy (MIRT) Director, Dr. Gareth Morgan, spent a great deal of time discussing upcoming advances in myeloma therapy and diagnostics. This wasn’t more of the same. Dr. Morgan revealed a number of new, innovative approaches being initiated now in Arkansas.
I’ve very excited! Yesterday my registration materials arrived for next month’s American Society of Hematology (ASH) annual meetings in San Francisco. And like clockwork, researchers and pharmaceutical companies have started issuing press releases promoting presentations featuring clinical trial results to be presented there.
He’s back! My dear friend and spiritual leader, Danny Parker, has had a tough year. After some subtle arm twisting, Danny agreed to share his experiences with our MMB readers:
Thoughts from the Edge of Relapse
Pat has been asking me in recent weeks to say something about my disappearance from the myeloma world. Of course the […]