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 possibilities of a hip replacement. To bring you up-to-speed, a week ago I did drive-back to Moffitt for an MRI of my right hip. And the fact that I had met with Dr. Cheong in the past helped secure me an appointment relatively quickly–I meet with him Monday morning. He will share the results of my MRI with me then.
Back to last Monday’s post. I ended it this way:
For the moment, our conversation drifted away from my hip and moved on to the the theoretical. I will share Dr. Alsina’s thoughts about possible future therapy options–and what we decided to do about my ailing hip–tomorrow.
Not much more to write about my hip until next week. So let’s focus on my musings with Dr. Alsina about possible therapy options.
Most doctors hate to do that–play the “what if” game. Have you noticed that? “But doctor, what if…” Their ambiguous reply usually goes something like this; “Let’s cross that bridge when we come to it.” Or, “It’s hard to say. Let’s try this and see how it works-out.” Frustrating! “What if” questions are perfectly reasonable and logical–unless you’re a physician!
But this was Dr. Alsina’s last appointment following a very long day. Can you imagine meeting with patients and caregivers for eight or nine hours straight? Sometimes the news is good (like mine!). But other meetings probably don’t go so well. It’s the nature of the business…
Her body language screamed opportunity to me. She was sitting back, her right arm draped over the back of the chair. I grabbed my opening. “What would you have suggested we do if my M-spike wasn’t stable?” Without giving her time to formulate one of those, “Let’s wait and see” answers, I continued. “Could I join one of the ongoing MLN9708 studies here at Moffitt?”
MLN9708 is Millennium Pharmaceuticals newest rising star. Like Velcade, the new drug is a proteasome inhibitor. It is sometimes referred to as “oral Velcade,” although that is a misnomer. Same class, totally different drug.
Moffitt has been on the cutting edge, facilitating several different MLN9708 trials. One member of our local support group has been taking it successfully for years. Two others recently started taking the drug over the past six months.
“No, Pat.” The only study is open only to newly diagnosed patients.” Thinking back to our last meeting, that made sense. Both of the members that had started on MLN0798 had never been treated before.
Dr. Alsina had mentioned carfilzomib (Kyprolis) as a possibility after deciding Revlimid’s declining effectiveness for me wasn’t worth the damage it was doing to my bone marrow. So I expected her to bring it up again.
Instead, she proudly interjected that Moffitt would be working with Onyx on several studies involving their new, experimental oral proteasome inhibitor, oprozomib (formerly ONX 0912). “Maybe we could take a look at that.” She continued.
I had heard rumors that Onyx was working hard to match Millennium’s MLN9708. But I didn’t realize it might be available to me so soon.
Options. I love options! From what I’m hearing, MLN9708 is working so well it should fly through the FDA’s approval process. After all, Kyprolis was approved even before Stage 3 data was available.
In the meantime, why not oprozomib? I’m surprised she didn’t mention pomalidomide (Pomalyst). And I was going to suggest thalidomide (Thalomid). I understand the risk of permanent peripheral neuropathy (PN) can be a deal-breaker for some docs. But despite my existing PN, I would be willing to give it a go. I would rather go back and try an existing drug, saving all of those hopeful possibilities for later. Didn’t I just write somewhere that I was a “deferred gratification” kind of guy?
By the end of our meeting, I half expected someone to break-out the cocktails. It was a relaxed and memorable end to what had turned-into a wonderful, hopeful meeting.
My euphoric nostalgia was tempered when I rose as everyone slowly filed out of the room. As is often the case, I couldn’t put any weight on my right leg after I stood-up. I masked my pain and appreciatively accepted a warm hug from Dr. Alsina. By then I was able to hobble down the hall toward an exit.
Funny how I would try to hide my pain–a lame (pun intended!) attempt to be perceived as normal; just a part of the group. They headed one way and me the other, preparing to meet with scheduling staff to play “appointment roulette,” hashing through possible appointment days and times.
By now I think I could do it all in my sleep.
Feel good and keep smiling! Pat