Thought on maintenance from a friend

Two posts in a week...been a while since there was that much newsworthy stuff to share!  :)

I'm pleased that among the many fellow travelers I've met on my journey is one terrific lady, CP.  I believe CP was diagnosed in 2011 and has been kind enough to tell me that she found this blog and her subsequent conversations with me useful in determining where and how to be treated.  She is being treated by Dr. GT, who worked with/for (depending on whom you ask, I suppose, haha) BB.

Like BB, GT believes the disease can be cured in a good portion of cases, though GT is more guarded about using that word, from what I can tell from the people I know that have seen him.  GT uses a similar program to BB.  Induction with VDT-PACE, two transplants, conslidation chemo (VDT-PACE again) and then maintenance.

A couple of interesting differences: during the second transplants, GT uses a different agent from Melphalan...I believe it's Bendamustine.  Another version of mustard gas, essentially.  I'm not sure if this is because he doesn't want as much Melphalan used, or if he wants to mix it up yet again.  Bendamustine is, I'm sure, part of the 9-drug cocktail SUPERBEAM that BB uses in "high risk" patients but he doesn't use it on low risk patients.

The other difference, which I learned from CP just yesterday, is that GT only does two years of maintenance.  And this is what I thought was notable enough to blog about.

The BB protocol is three years of VRD in maintenance (for those new to the blog or just reading this out of nowhere, I'm using a lot of acronyms in this entry -- please email me if you have questions.  In fact maybe I'll put a glossary entry up one of these days!).  After the three years, if all has gone well, you get a pat on the back, a hearty handshake*, you are told you're cured, and you go on about your business, with annual checkups to make sure everything is still good.

In my case, I had these stubborn pits in my spine, and at the time BB was very concerned (as was I) about the MYC gene that I had originally overexpressed in my baseline cytogenetics.  He took marrow from some former lesions and while we waited for the results, I contemplated the unusual position of having to undergo significant additional chemo (VDT-PACE, probably) despite being in complete remission.

Thankfully, the marrow came back negative and all looks good, including the MYC gene being normal.  And we settled on single agent Velcade as maintenance, because BB's theory (which he readily admits is just that: a theory) is that as long as those pits in the spine are there, some MM cells that haven't gotten with the program could be hiding under the proverbial rock, waiting to resume the party after the police leave.

So we stay on Velcade, as noted with some regularity.

At any rate, I had asked CP if she would ask GT for his thoughts on maintenance and she was able to do so, and he reported back a few things that are interesting both for their consistency and points of divergence with BB's protocol:

•  He doesn't believe in more than two years of maintenance, due to (1) diminishing returns, and (2) the likelihood of secondary malignancies.  It is worth noting that with respect to (1), the rest of my lesions other than the spine pits filled up with new bone during year two of maintenance, and the pits shrank during this time, and during the last year they have been stable.   With respect to (2), I'm typing this with nine fingers since my pointer finger had a chunk cut out of it from the squamous cell carcinoma I endured during the third year of maintenance, and this was also when pre-myelodysplastic cells (an early indicator of potential leukemia) showed up in my marrow.  So I would say that GT (whoops, almost typed his real name, although at this point I'm not sure why I bother with a thin veneer of anonymity) seems right on with regard to these points.  Sorry (and hello) to any UAMS folks reading this!

• He thinks that any lingering lesions are unlikely to have any MM in them.  

• He recommended doing a FNA (biopsy) of those pits, which is what BB wanted to do but they are too small or inaccessible to do that with.  So BB did the next best thing which is to needle several other spots that used to have active lesions.

• He said if they were still positive for MM, he would radiate them.  BB is not, to my knowledge, a big radiation guy.  And in any case I am negative for MM elsewhere, so hopefully these are negative as well.

The sum total of all this?  I'm sticking with the Velcade...but I might have gone to single agent Velcade a year ago and avoided getting my finger chopped up, and the scary pre-MDS cells...

All stuff for your consideration, fellow patients.





*n.b.,  Before editing the typo, I had originally typed "heart handshake."  Given the aggressive approach employed by BB and crew, I made sure to correct this lest people think that was an actual medical procedure!