Today was the first day of my 3rd cycle and the chance for us to meet again with the medical team. It started with the blood draw, where they sucked 13 vials out of me. Yikes!
After that, I renewed my Revlimid prescription. I expected my copay to skyrocket today, since I thought the Good Days supplemental payments were going to run out, but they still only charged me $20. It feels kind of like when the IRS sends you an unexpected refund. It seems almost too good to be true, and in the end, it usually is. So I'm waiting for the other shoe to drop on this, but in the meantime, I'll take it.
I had a bunch of questions for today, and I got most of them answered. I was curious about the status of the MLN 9708 clinical trial (No. TX93639). I was the last patient to be enrolled in Phase I of the trial. It is now on hold waiting for administrative approval to move into Phase II. Interestingly, they have decided on a different standard dose of MLN 9708 for new Phase II patients. Instead of calculating the dose based on Body Surface Area (see my Sept. 4 post), they will give all new Phase II patients a fixed dose of 4 mg. I am taking 5.8 mg, and it is planned for me to continue at this dose as long as I am in the trial. I don't know why they decided to modify the dose going forward, but as long as I have no side effects, I'm glad to be getting the higher dose.
I already know that two of the three prior DFCI patients on this trial have achieved a complete response to the medications, I was curious about how patients at the other participating facilities have been doing. I didn't get a full answer on this, but apparently the DFCI patients are doing the best so far. I'm still curious to know what percentage of these Phase I patients are achieving either Very Good Partial Response (VGPR), near-Complete Response (nCR) , or Complete Response (CR). I'll explain these criteria in a later post.
Another issue that has been bothering me for a while is how to interpret the M Spike value versus my total IgA gamma globulin value. I have searched the Internet fruitlessly for a straight answer to this question. The M Spike from the SPEP test supposedly estimates the amount of the malignant monoclonal protein (mine is IgA Kappa). This value is reported to two significant figures in units of g/dL. Here is a picture of how this looks:
The SPEP test doesn't identify the specific type of globulin in the M Spike. The corresponding Immunofixation Test gives the breakdown and amounts of all the immunoglobulins, including the total amount of IgA. These values are reported to four significant figures in units of mg/dL. Now why would the units and number of significant figures in the reported test results differ? My simple mind tells me logically that subtracting the M Spike value from the IgA value (in comparable units) should give the amount of good polyclonal IgA floating around in there. I asked Dr. Paba-Prada about this. Her answer was that they measure different things. Hmmmm. I was underwhemed. I know the objective is to get the M spike to zero and all the other immunoglobulins back into their normal ranges. That's nice, but it doesn't answer my question. You haven't heard the last of me on this issue.
I have to warn you that I got my induction doses of MLN 9708 and dexamethasone today. I think the dex is starting to kick in, so I might just go on here for a while. Feel free to take a break and go get a cup of coffee or a tall one, depending on what time of day you're reading this.
Our visit with Dr. Richardson was awesome, as usual. As for the Zometa issue, he wants me to get started on this (via IV), but he is not in an all-fired hurry, and he would like me to get my oral surgery crap out of the way first, which I hope to accomplish this month. Next month, I hope to be able to tell him with my new gap-toothed smile that I'm ready to go!
My biggest question has been how to deal with the potential timing of a stem cell transplant. Assuming continued good progress, Dr. Richardson is of the opinion that I should stay on this current protocol, with an interruption around Cycle 4 to harvest my stem cells. At that time, I will undergo stem cell mobilization using cyclophosphamide chemotherapy. My stem cells will then be harvested for future use, and the current plan is for me to go back onto the MLN 9708 protocol and complete the full 12 cycles. I was hoping he would recommend this approach. Ideally, I will have a Complete Response (CR) or even better, a stringent Complete Response (sCR) and be in remission. Of course, at some point, relapse is inevitable. Since I will likely be in my 70s by then (I sure hope so!), a reduced rather than a full ASCT would be performed. Anyway, the idea here is to kick the can down the road, and who knows by that time what miracle MM drugs and possible cures may be emerging.
Overall, Dr. Richardson and his team are very pleased by my progress to date. Of course, the blood test results from Cycle 2 won't be back for 3 or 4 days, but my numbers so far look very good, and he thinks I look great. I certainly feel great. It was a very upbeat meeting, and Gretchen and I both left feeling very good. We don't expect all the meetings to go this well, but we'll take it while we can. We decided to celebrate by having dinner at Petit Robert. It was delicious, as usual.
Now look what I've done. I've gone and rambled on, and now it's not today anymore. It's tomorrow. Which means we did all of this yesterday, not today. I think it's time for me to go lie down and pretend to go to sleep. If you don't read this in the next couple of hours, be pre-warned. I might get back up again and this post could get even longer before I throw in the towel.