Cycle 5 Day 1

Today was a long day at DFCI.  We got there about 10:30 this morning and didn't leave until after 3:00.  I started off by providing the requisite 13 or 14 vials of blood (but who's counting?), along with my 24-hour urine sample, discreetly disguised in a brown paper bag.  All the patients in the waiting room have been coming there long enough that I'm sure the bag fooled nobody.  So what!  We're all in this together.

Next, I went to the pharmacy to renew my Revlimid prescription.  I was ready to shell out big bucks this time, as I was pretty sure my stipend from Good Days at the Chronic Disease Fund must surely have run out by now.  To my surprise and delight, however, I was informed that my co-payment would again be only $20!  Wow, this is starting out as a good day.  I'm not sure how and why this is all working out so well, but I hesitate to look into it too deeply.

Next was my monthly EKG, which again was normal.  Then we met with Kathy Colson and Dr. Claudia Paba-Prada.  My blood test numbers for today had recovered nicely from last week.  The anemia numbers (RBC and Hgb) that I fretted about in my last post were significantly better.  They told me not to put too much emphasis on the Day 22 results, since they represent 3 weeks of continuous therapy.  That's why I get to recover for a week before starting the next cycle.  I have to learn to chill out on these numbers a little more.  The bottom line is that I'm doing great!  Kathy and Claudia were both very pleased with how well I'm doing on this protocol so far.  They both believe that I have achieved a Complete Response (CR) by now.  We'll get a better idea when the Cycle 4 protein test results come back next week.

I asked about the timing for my stem cell collection, and they indicated that it won't happen until January at the earliest. When that happens, I will go off the MLN protocol for at least a month before resuming it again.  I also asked about the timing for starting on the bisphosphonate (Zometa).  I suggested that I go back to Dr. Treister, the dentist at Brigham and Women's, for his opinion, and they agreed that would be good to do.

To absolutely nobody's surprise, Dr. Richardson was running about 2 hours behind today.  We had time to munch on not-so-bad sandwiches from the cafeteria while we waited.  I was in the Infusion Center, about to get my MLN and Rev, when he finally arrived.  He too was very pleased with my progress and noted that I am looking much healthier now than when we first met in July.  In fact, he said he was worried about me then, as I didn't look so good.  So everything is still going really well.

But then is when he threw a curve ball.  I had thought that we were on the same page regarding ASCT (autologous stem cell transplant), in that they would collect my stem cells and then wait as long as the MLN protocol and followup maintenance was working well before considering a transplant.  That is where things stood a couple of months ago.  However, Dr. Richardson is now recommending that I go for an earlier ASCT.  Part of the reasoning here is that it won't be long before I reach the magic age of 70, when the efficacy of ASCT starts to diminish.

Just as he did at our first meeting, Dr. Richardson came in today with a recommendation that I participate in a clinical trial, this one involving ASCT.  This Phase 3 clinical trial has three arms, randomly chosen among the participants:

• Arm A:  ASCT with a tandem (second) ASCT, followed by a 3-year Revlimid maintenance therapy
• Arm B:  ASCT followed directly by a 3-year Revlimid maintenance therapy
• Arm C:  ASCT followed by consolidation therapy of Revlimid/Velcade/dexamethasone for 4 21-day cycles, followed by a 3-year Revlimid maintenance therapy

Richardson is not a big fan of the tandem ASCT, so he suggested that I could withdraw from the clinical trial if I got assigned to that arm.

I now have a lot to think about over the next couple of months.  On one hand, if my current protocol is working so well and I achieve CR or sCR, why not keep doing it and then go on MLN9708 maintenance therapy after the end of the trial and wait for a relapse?  In other words, if it ain't broke, why fix it?

On the other hand, I have enormous respect for Dr. Richardson.  He pointed out that time is not on my side as far as waiting a long time before choosing ASCT as a possible option.  While they can still do ASCT after age 70, they cut back on the amount of medication used for these older patients, which might not give as good results as with younger patients.  Furthermore, if the initial induction therapy is working well, resulting in CR or sCR, this is the best circumstance for performing ASCT, usually resulting in longer times before relapse.

I think I will  go take my 40 mg of dexamethasone before I go to bed tonight and ponder this issue some more.  Don't get me wrong...I am very happy about my visit to DFCI today.  Everything continues to look good, for which I continue to be very grateful.