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.
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
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'm feeling a lot better this weekend than I did earlier in the week. I think my body is getting used to pomalidomide. Interesting that I tolerated thalidomide better, not really feeling a thing. That is, except for scary fast progression of my peripheral neuropathy (PN) symptoms. The good news is POM doesn't seem to
Last year at ASH, everyone was anticipating FDA approval of carfilzomib (Kyrpolis) and pomalidomide (Pomalyst). It felt a lot like it does now, expecting the first two myeloma related immunotherapies, elotuzumab and daratumumab, to be approved within the next six months. I remember several high profile myeloma specialists (the IMF's Dr. Durie and Dana-Farber's Dr.
Say it ain't so! Don't get diagnosed with multiple myeloma in England, Northern Ireland, Scotland or Wales. New austerity measures could result in an early death sentence for our brothers and sisters with myeloma in the UK. I wasn't planning to write about this today, but I became so upset after reading an article on
Dr. Tricot and I didn't restrict our conversation to the "transplant again or not" debate. We also spent a good deal of time discussing how to handle my worrisome peripheral neuropathy (PN). As I shared last month: Peripheral neuropathy smacks me hard! Thalidomide maintenance has sped up the progression of my PN exponentially. Fortunately,
That didn't take long. Seven weeks out and I'm experiencing enough bone pain to keep me up at night. Last week pain returned between my shoulder blades at the base of my neck; an active "hot spot" on my last PET scan, the week before my modified "salvage" stem cell transplant. Several ribs on my
My old friend, Don Wright, is the Energizer Bunny of multiple myeloma; he keeps running and running... After reaching the goal of running a marathon in all 50 states, most would take some time off. Not Don. His new goal is to run 100 marathons, all after his diagnosis nearly a decade ago: Vital Options
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. Yesterday I wrote: Apparently my current therapy combination of Cytoxan, carfilzomib (Kyprolis) and dex (CCd) was not as effective as Dr. Tricot had hoped. He told me
At the end of Saturday's presentations I shared something very personal with our group. I wrote a five part series of posts after I returned from seeing Dr. Tricot in Iowa. To review, Dr. Tricot recommended that I immediately switch my current treatment regimen from pomalidomide and dex to Kyprolis, Cytoxan and dex. Assuming it
BAM! POW! What day is it again? I felt dazed, confused and forgetful a few cycles into my initial pomalidomide therapy. Reminding me that pomalidomide (Pomalyst) is much more potent than Revlimid, Dr. Roy suggested we cut the dose back to 3 mg. That helped for the first couple of months. But the last few
The University of Wisconsin's come from behind overtime win put a punctuation mark on a perfect New Year's Day! The weather couldn't have been better. Both bands were great, and the Auburn University fans knowledgeable and gracious after what I"m sure was a very difficult defeat to swallow. I felt great yesterday. I'm at the
A reader response to yesterday's post got me thinking about examples of how unpredictable multiple myeloma can be. I think myeloma patients are often lulled into a false sense of complacency. For most, multiple myeloma is a slow moving cancer, easily managed for years; sometimes decades. For others, its more aggressive. Cytogenetic testing may give
I'm going to be continuing my series with tips to help deal with chemotherapy side effects when the dust clears after ASH. But speaking with a number of myeloma survivors in San Francisco got me thinking. What is the cumulative effect of myeloma therapy on our bodies? Sometimes it comes on slowly, so maybe we
My readers know that I'm currently using pomalidomide (Pomalyst). So I get lots of questions about when its best to use it and possible side effects. Here's an excerpt from an article on OncLive that takes a look at POM from the perspective of three well known myeloma specialists, Dr. Noopur Raji, Dr Sagar Lonial
Thank God pomalidomide is working for me! But what do we do once it's not? Dr. Roy and I had a chance to discuss that on Monday. First the good news. Dr. Roy's gut feeling is that POM should work well for quite some time. And statistics back him up. Patients that respond like I
Lots to share today. I'll start with how I'm feeling and what comes next. After returning from Boston feeling a bit better, I unexpectedly relapsed. Back on the toilet every 2 or 3 hours for a couple more days. No fever; that apparently had been a neutropenic spike up to 102.5. Have you ever had
Every October a group of myeloma survivors and caregivers get together in Boston to help celebrate our lives--and the lives of those we lost this year. Our reunion centers on the Leukemia and Lymphoma Society's (LLS) Light the Night fundraiser. The even was tonight. We've been lucky; good weather each of the past four years.