My former myeloma specialist, Dr. Melissa Alsina, is running an unusual clinical trial for newly diagnosed patients, featuring an auto stem cell transplant, followed by an allo (donor) transplant. Tandem auto/allo transplants are considered experimental and risky, especially for new patients. However, Dr. Alsina and her colleagues hope to have developed a way to help
"You have stable disease." Dr. Roy pronounced at our first visit at Mayo Clinic in Jacksonville. If only it were that simple! The last week was crazy busy with medical appointments and tests. I saw three specialists: Dr. Vivek Roy, a hematologist recommended by Dr. Angela Dispenzieri and my good friend, oncology and transplant nurse
I hadn't planned to write a follow up post about me today. But I can tell from the flood of emails and comments I've been getting that some readers are concerned I'm sitting back and not doing enough to battle my relapse. And there does seem to be some confusion about my treatment plan moving
My day started early today. Nothing to eat or drink. Stopped by Florida Cancer Specialists for round two of radiation therapy. Then took a short drive to their diagnostics center to prepare for my PET scan. Insurance has signed off so I’m good to go. The tech has just injected radioactive glucose through an IV.
As I shared yesterday, I snapped a rib twisting in the car to grab the lever that moves the seat back; a sure sign my myeloma is acting up again. An hour or so after the unfortunate "accident," I emailed Dr. Alsina about it, queering about how to best proceed. She promptly responded this morning.
Good news. Not great news, but it could be a lot worse; my IgG is up 10%, but my monoclonal protein level remained at 0.6 after the latest six week cycle. Considering my history of bone involvement with M-spike readings as low as 0.5, the plan was to make a therapy change if it ticked
I feel great! Energy level is good. I've even been experiencing less bone pain, allowing me to cut back on my pain meds. So why am I so apprehensive about a tiny prick in the arm today? All part of the routine surrounding my six week treatment cycle; once a week Velcade, sub-q with a
Thursday I ran a heartfelt post about the difficult decisions myeloma patients--and their doctors and medical team--can face as they approach another therapy fork in the road: Uncertainty can be paralyzing! What to do? The suggestions and comments following the post are amazing! And they have come in bunches, making it hard for me
Piling on. That's what it feels like these days. Like I've been tackled by an angry NFL linebacker--and now a huge defensive lineman has just jumped on the pile. Yesterday I began to express my frustration in living with so much uncertainty. Would my myeloma continue to be active, sending my M-spike higher? What new
I saw my myeloma specialist, Dr. Melissa Alsina, at Moffitt Cancer Center in Tampa Monday. The news wasn't good. To recap: 16 months ago I relapsed after a short, 10 week remission. At the time I was only on Revlimid maintenance. We added Velcade and dexamethasone to the mix and my M-spike stalled at 0.4.
I met with my medical oncologist, Dr. Vikas Malhotra, for the first time since last month's relapse today. He reviewed my test results, including the MRI of my left hip. It reminded me why working together as a team is so important. I felt that Dr. Malhotra and his physicians assistant, Ann, made some innovative
I feel the same this morning. The routine was the same; feed the dogs and cats, help get Pattie out the door and off to work. Yet everything is very different. Yesterday I learned that my myeloma is active again. It's only a number on paper. But the impact packs a real wallop! Yesterday I
A few months back I had an opportunity to interview transplant and myeloma specialist, Dr. Ravi Vij on a Cure Talk broadcast. The topic, Pros and cons of using allogeneic (donor) transplants against multiple myeloma. I asked a number of questions about this procedure that is now discouraged for myeloma patients in most transplant
I've never run a consecutive, four part series before. Seemed to go over well. Lots of emails and positive feedback. It was kind of Chuck to be so open and share with us that way, don't you think? In the meantime, some news and notes I'd like to share have been piling-up. Let me get
I had an early appointment with the specialist that performed my hip replacement surgery this morning, so I'm late getting back to you. That's not all I had going this am. I also stepped across the street from Moffitt Cancer Center's main clinic building to visit the psych department. I'm serious about following-up and seeking
Good news from my myeloma specialist, Dr. Melissa Alsina, at Moffitt Cancer Center. My myeloma is stable for the third quarterly visit in a row; locked-in at an M-spike of 0.2. My hemoglobin, platelet and white blood counts are up and a bit better, too. A once a week sub-q Velcade injection--along with 20 mg
Depending on which myeloma expert you ask, roughly 85% of multiple myeloma patients are considered to be "standard" or "low risk." I'm fortunate to fall into this most common category. And because I do--and so many other patients do, too--I tend to write most about us. But what about high risk patients? Ironically, two or
I was happy to delay Monday's ongoing conversation a day in honor of myeloma hero, Elijah Alexander. Let's jump-start things today using Dr. Alsina's own words: “Now would be a good time to do this.” She said. “Your myeloma is stable. I would do it now.” She was referring to my queries about re-visiting the
Last week I wrote a pair of posts about the good news I received from my myeloma specialist, Dr. Melissa Alsina, at my quarterly appointment. She described my myeloma as "stable disease." Velcade and dexamethasone alone are--thus far--able to keep my myeloma in check without adding Revlimid. But living with myeloma is a lot more
Thursday afternoon I met with my myeloma specialist, Dr. Melissa Alsina. I have had a standing appointment with her every three months since before I went into remission--and quickly bounced-out ten weeks later--one year ago. But this visit was different. It was to be a fateful one; a turning point. Due to significantly reduced cellularity