by DanielR on Sun Feb 21, 2016 3:39 pm
I just started my second cycle with Ninlaro this morning. We dropped the dose from 4 mg to 3 mg due to extreme energy depletion with the 4 mg. I also just got my CBC for this cycle (and yes, CBC is only required at the beginning of each 4-week cycle), and it looks really promising. With the extremely minor exception of cell volume (which has consistently been above the standard range since my myeloma saga began back in 2012), all my numbers were within the standard range. Yes, my RBC was at the very bottom of the range, but that's much better than what it had been.
I will get my full blood panel done at the end of this month and should have the results by around March 5th. That will, of course, provide substantially more info as to how well the Ninlaro may or may not be working. With the exception of extreme energy drain and constipation, side effects have been minimal. So far, I've had virtually none of the peripheral neuropathy that had been such a nagging problem with Revlimid and Velcade. I was particularly concerned about nausea. The idea of throwing up such a costly pill led me to take a quick-dissolve ondansetron (Zofran) with the first two doses, but I now take them alone and have had no nausea at all. I now anticipate the constipation and manage it prophylactically.
Here's how I ended up being the first patient in Hawaii on Ninlaro. I was diagnosed in January of 2013 with del(17p) IgG kappa light chain myeloma. No one expected me to leave the hospital alive, but I did. No one expected me to survive the initial induction phase with Revlimid, Velcade, and dex (RVD), but I did. Not only did I survive, but I responded miraculously.
I had an autologous stem cell transplant (ASCT) at City of Hope in May/June of 2013 and achieved a very good partial response (VGPR), Shortly thereafter, I was placed on a maintenance dose of Velcade and dex for about 1 year. My numbers continued to be so improved that all treatment was suspended sometime around June of 2014 and I remained in "remission" until sometime around March of 2015, when new lesions were discovered in my mid thoracic. I underwent 10 treatments with radiation and went back on the Velcade and dex (VD).
The real problem with my case (17p aside) is that even with active multiple myeloma in the thoracic, none of my blood work indicated that it was active. My IgG was well within the normal range and my M-spike was only 0.14 g/dl (140 mg/dl, 1.4 g/L). Admittedly, my IgA and IgM were well below normal, but no one seemed to think that was problematic.
So the question for my oncologists and myself became, how do we track myeloma activity when the blood work is no longer really helpful. We're still trying to work that one out. I just had my second full body MRI and I had a PET/CT in November of last year. So far so good, except that my numbers had again increased to beyond the levels they had been when I relapsed.
In my mind I was convinced that my multiple myeloma had become refractory to Velcade. Eventually my oncologist agreed, very hesitantly so, I might add. The discussions then became, what now? My choice was Darzalex (daratumumab), but I was told I couldn't yet qualify. We decided to try adding 25 mg Revlimid. I almost immediately broke out in a rather severe rash and was unable to complete the first cycle.
Hence, the next logical choice, again in my mind, was to try Kyprolis or Ninlaro. Very logically my oncologist argued in favor of Kyprolis. While I was very drawn to the excellent side effect profile and apparent efficacy, I was not at all enthralled with the idea of spending 5 hours twice a week at the local Kaiser facility!
So I began arguing in favor of Ninlaro due to its convenience. My oncologist's concern was that it was so new, it had not been tested as a single agent and there was no information at all as to its effectiveness on del (17p) patients. He saw Ninlaro as an experiment in my case and just wasn't comfortable with that. Obviously I couldn't disagree with his logic. On the other hand, I did argue that no matter what we chose, given my unique history, it would be an experiment if for no other reason than the fact that there is virtually no clinical information pertaining to 17p patients.
So while I couldn't argue against his logic, neither could he argue against mine. Eventually we agreed to give the Ninlaro a try. So here we are beginning my second cycle of Ninlaro. My CBC results look very promising but, if after 3-4 cycles that promise isn't realized, we'll go to the Kyprolis or consider adding a third agent (maybe pomalidomide?).
Because the Ninlaro is so new, no one seemed to know for sure what the protocol should be. 5 weeks in I think it's now mostly worked out: CBC before the start of each cycle; full blood panel every 6 weeks.
I'll keep you all posted.
