Saturday, May 29, 2010

All clear from BB

I am sitting in the Little Rock airport right now, after a successful visit. I have a lot to report, both medically and in terms of local color -- it may have to be in a couple of parts if I get interrupted by the departure of my flight!

Bloodwork showed no monoclonal protein under immunifixation. WBC was at 3.8, RBC at 4.5, Hemiglobin at 14.1, platelets at 117. All on the low side of norms but normal nonetheless, with the exception of platelets which are just a bit below normal. BB was quite pleased with all of this, particularly the platelets which he said were holding up impressively. Seem low to me, but he's the man, so...

Marrow was even better. No monoclonal protein, negative for plasma cell myeloma, and plasma cells at less than 2 percent. Additionally, there are oligoclonal indistinct bands which are, to use BB's words, "indicative of profound remission status."

The MRI was mostly stable, although it did show a slight decrease in size of several lesions. We need these to continue to heal, although that can take years. We discussed another course of Zometa, which I will get soon. Probably after I get my teeth cleaned as dental work and Zometa do not get along and I am loooooong overdue for a teeth cleaning.

The PET scan was good as well. Reduced SUV (the measure of cancer activity) from 2.0 to 1.3. I am just learning how to interpret this -- evidently baseline is 1.0, and anything higher than 2.5 is very likely cancer activity. For now, 1.3 is less than 2.0 and I am pretty sure I was at 3.7 when I got my first scan although I don't know for sure. At any rate, the decline is a very positive thing. The PET does continue to show over 100 osteolytic lesions. BB mentioned that these will always be there. I am not totally certain as to why -- I need to listen to our conversation again and will report if there is more to be said on the subject.

We then reviewed, as is his style, the newest available data from total therapy 3 and 4. Some salient observations:

1. The response curves are totally superimposable: meaning the data through the first three years or so of Total Therapy four are effectively the exact same as the first three years of the now eight odd years of data from Total Therapy 3. That means I have visibility about five years down the road.

2. There is effectively no difference in response between the lite and standard arms of therapy. Lite here is anything but lite: it is still MVDTPACE to start, VDTPACE for induction, two transplants with bridging (thal/dex), consolidation with dose-reduced VDT-PACE and then VRD in maintenance. But there is one less cycle of each induction and consolidation, and the transplants themselves split the high dose melphalan over four days to increase tolerance and reduce toxicity.

3. The recurrence curve for low-risk disease appears to be perfectly flat after year three. This is extremely important as it comes earlier than was expected. To the doubters, consider this: of 167 low-risk patients that achieved complete remission, only 9 percent fell out of remission during the first 40 months after achieving complete remission. What other protocol for a newly-diagnosed, low risk patient can promise that they have an over 90 percent chance of remaining in remission for three years once they achieve it (recall only 60 percent achieve complete remission; others may nonetheless have long remissions with a residual MGUS type disease)?  Even more striking: not a SINGLE one of the 149 patients in remission at 3.5 years has lost remission almost three years later: one hundred percent of these remained in remission after six years.  Not a single incidence of recurrence.  Cure? Or mere coincidence?

Of those patients with my Proliferation Subtype (as defined by gene analysis) not a single one has lost remission, period. It is harder to achieve remission with this sub type, which is usually associated with high risk disease. There are only 14 data points of low-risk disease with the PR subtype so it is not as statistically robust but it still works for me!

Eveeything at this point is in the direction of cure, provided I keep up with maintenance. I have not felt any neuropathy since Velcade was interrupted 10 days ago. Nonetheless, BB and I feel that it is important to remain on the higher dose for as long as I can to ensure the most favorable outcome.

I asked BB about the validity of PCR tests to quantify residual disease. He said these were worthless. He said that in random studies they have seen PCR indications of molecular remission in patients who have multiple FDG-active lesions under PET Scan. So there goes that.

I also asked him about cutting off maintenance after three years versus the longer revlimid maintenance that has been discussed by some doctors, such as RV, or perhaps even BD based on his comments on the maintenance therapy findings yesterday in the pre-ASCO (American Society of Clinical Oncologists) conference next week. BB is currently doing a randomized trial of revlimid at 5mg daily versus no revlimid to see the impact. BB told me before that he does not randomize unless he thinks he knows the answer is "there is no difference."  This is one of the reasons he doesn't submit Total Therapy to double blind testing.  I told him he has two more years to develop data before we have to decide what to do!

Speaking of ASCO, Bart will be presenting some new materials on the ongoing fight against high-risk myeloma, where recent data suggests improvements and the presence of a cure signature, which though significantly lower in likelihood than cure with low-risk disease, is still meaningful!

More to come later, including some good local color and humor!

6 comments:

  1. Great news! Very happy to read this.

    ReplyDelete
  2. Great report, Nick! Congratulations. Good news about TT4 lite. Interesting PCR info, as well. Your numbers sound very similar to mine, although my platelets consistently ride at the 60-70K range while on Revlimid. Here's to our SCs growing old and unused in BB's freezer! Sean

    ReplyDelete
  3. Wonderful news! This is so important for all to read... thank you for taking time to give us details!

    ReplyDelete
  4. I've been getting monthly Zometa infusions for nearly 4 years. My dentist is well aware of the implications of the Zometa. We discussed it and the likelihood of anything going wrong during routine dental procedures (teeth cleaning, caps and crown etc) is minimal. In that time, I been doing biannual cleanings and had a crown put on. So, my recommendation, is not to hold off on resumeing Zometa JUST for the dental issue...unless you need major work.

    Great results BTW. I have some positive news that I will be reporting when I post on my blog next.

    ReplyDelete
  5. Nick,
    You are doing so great. I suspect that this visit was something you hoped for, and dreamed of during your transplants. And here you are, in complete remission and heading for a full and happy life without MM. Congratulations. You are da man!
    Dan

    ReplyDelete
  6. Hi Nick,
    very interesting blog, I also had a double auto transplant, in CR since my first Velcade cycle before transplant. Unfortunately PET is still positive in 4 or 5 areas. At diagnosis heavy bones involvement.
    ..."He said that in random studies they have seen PCR indications of molecular remission in patients who have multiple FDG-active lesions under PET Scan. So there goes that."...
    I found this very interesting. Does it mean, in his opinion PET is more important than PCR??
    Did BB ever consider radiotherapy to get rid of the bone problems?
    thanks
    sergio fm Florence

    ReplyDelete