Wednesday, July 21, 2010

Through a glass, darkly

Okay, time to move the post about my GI issues down a bit!  :)

As I went online to make my dutiful (doody-full?) post about some recent side-effects, I checked out the updates on a couple of Myeloma blogs I follow.  One belongs to my friend Pat Killingsworth, who has taken a much more cautionary approach in his treatment than have I.  I encourage people to read Pat's blog as it is a good counterpart to the more aggressive therapeutic route I have chosen and it gives people an idea of the range of options out there.  Although I will ruefully admit that I stumbled upon Pat's blog when I was in the middle of treatment getting a blood transfusion and on that day, he happened to list the 10 reasons why you should never get a blood transfusion (I'm using some artistic license here) and I used this as a springboard to rant a bit about treatment philosophy at that time!  :)  

Anyhow, Pat is tirelessly dedicated to getting the word out there about all things Myeloma and while I have a markedly different point of view in terms of how aggressive to be, I have a tremendous respect and appreciation for Pat's energy and tireless dedication to get as much information out there as possible.  With this in mind, I read with excitement his recent post that references an article talking about the effectiveness of maintenance therapy. 

The article, which can be found on Pat's blog here, is titled "Post Stem Cell Transplant Maintenance Therapy Delays Multiple Myeloma Relapse in a Majority of Patients."  A subtitle is that Revlimid in maintenance cuts relapse rates in half.

Pat and I draw somewhat different conclusions from this, but I view it as part of a puzzle being validated bit by bit.  And we're getting to the reason for my Corinthian post title.  The puzzle is completed for the majority of newly diagnosed patients but only a few people are looking at it in its totality.  Other researchers are looking at bits and pieces of the puzzle without seeing the synergy the pieces have together.  They are looking through darkened glass, unable to have the clarity of everything working together.

My diagnosing hematologist, SH, in November 2008 had the following things to say:
- "I don't believe in maintenance therapy"
- "We don't use Revlimid, that's saved for relapsed patients"
- "We [including MAYO and City of Hope] save Velcade for way down the line"
- "I do suggest stem cell transplants so you can be off drugs, but they do not prolong life"

Thankfully he also said I should look at the full spectrum of options including BB (whose last name, incidentally, he mistakenly contorted into an Italian version of its actual Germanic root) and I am immensely thankful that he was open-minded enough to tell me there were different points of view which is the SINGLE most valuable thing a newly diagnosed patient needs to know, and which is part of the bond that ties Pat's blog and mine together despite their very different approaches to treatment. 

At any rate, let's look first at the different treatment philosophies accompanying these statements.

1.  Maintenance therapy:

SH position in November 2008: "I don't believe in maintenance therapy."

BB position in November 2008 (and much earlier): Maintenance therapy is essential post transplant.  Without it the Myeloma is all but certain to return; with it there is a high likelihood of cure in the 85% of newly diagnosed patients that are low-risk.

Current research: prolonged remission arises from maintenance therapy.  Excluding Arkansas, the data set does not exist to prove or disprove any connection to event-free survival.  Yet. 

2. Revlimid

SH position, November 2008:  "I don't use Revlimid in new patients, I save it for relapse."

BB position, November 2008:  Revlimid is a part of treatment for newly diagnosed patients because of its superior anti-Myeloma effects and better tolerability than Thalidomide, which was the standard Immuno-Modulatory drug in Myeloma therapy prior to Revlimid.  However, Revlimid is NOT used prior to transplant both because (1) it suppresses platelet recovery which would make the time to recovery from transplants much longer, and (2) it represents yet another type of therapy to which the Myeloma will not have been previous exposed (and to which drug resistance will have been developed) and therefore enhances the effectiveness of treatment if used after Thalidomide.

Current research: most mainline therapy now uses Revlimid in newly-diagnosed patients...a position that was so novel at the time of my diagnosis that Dr. SF at City of Hope used me as a test case to open a debate amongst his peers about whether or not to use Revlimid in newly-diagnosed cases.  What current research seems to be missing, though, is this platelet issue -- to which my own labs attest.  Part of it is, though, that extended Thalidomide can be pretty nasty.  For this reason, and because of drug resistance, BB does at most two cycles of induction for low-risk patients plus some treatment during transplants and some consolidation -- compare that with induction elsewhere which is usually a year or longer!! 

3.  Velcade

SH position, November 2008:  "We save Velcade for way down the line."

BB position, November 2008:  "Velcade is a game changer and increases the cure rate of newly diagnosed patients (including high-risk) from about 40% to over 60%.  It is a critical part of all phases of therapy for the newly diagnosed patient."

Current research: under investigation, but whereas it was almost unheard of for people to use Velcade as frontline therapy, now there are a multitude of trials doing just that.

4.  Stem Cell Transplants

SH position, November 2008:  "They don't prolong life."

BB position, November 2008:  "They cure the majority of cases."

Current research: the jury is out.  No data outside Arkansas exists to show the impact; Arkansas' data shows it pretty clearly but others either don't believe the data or have other issues with it.  I believe this will be the last piece of the puzzle that others eventually prove out -- but it may not happen before something else better comes along.

You can see where I am going with this: researchers outside UAMS are seeing pieces of the puzzle, but not seeing the whole thing.  Maintenance, in isolation without the therapy that precedes it, is shown to prolong remission.  Great.  But that's missing the fact the maintenance, as part of Total Therapy, is curative in the majority of cases.  Revlimid, in isolation without the therapy that surrounds it, is more effective than Thalidomide -- but they, too, are only seeing part of the situation.  Velcade, same deal. 

All of these, though, are being proven out by research.

As I said above, my guess is tandem transplants will be the last thing to be proven out -- and hopefully by the time BB will have been put out of business by a new novel drug.

That is one thing that Pat and I both fervently hope for -- and I think BB won't mind the day when that happens either!

Sorry for the long post -- hope you got something of value from it.  If not, low-brow poop jokes are just a few mouse clicks away.


  1. Right on, Nick! Well said. While UAMS and Total Therapy 4 have detractors, I'm staking my life on them. Literally. I have no cult like devotion to the MIRT protocols, my brain (chemo addled though it may be) keeps coming back to the conclusion that using Rev and Velcade (and Dex) in maintenance makes sense to me, SCTs make sense to me, aggressive therapy is right for me. Something better comes along, no matter from where, I'll board that train after careful consideration. I'm doing whatever I can right now to make sure there is a 'down the road' for me.

  2. As a cheerleader for the MM squads, I have observed that the medical team has to be aggressive with this disease that is very aggressive itself; anything less will, in my humble opinion (and that is all it is), guarantee fewer quarters in the game. And to wait too long to take this aggressive stance only means more misery for the patient, it seems.

  3. We ran into almost EXACTLY the same argument with local docs here. It's almost as if they are drinking at the same watering hole and its so annoying to hear the same thing regurgitated over and over. Our doc was telling us that it used to be the prevailing view in treating tumor cancers to do maintenance therapy and it turns out they become resistant to future treatment. HELLOOOOOOO, this is not a "tumor" cancer and it is markedly different! Not understanding the whole picture of Myeloma is spot on Nick! It brings to mind being in a foxhole and being bombarded by the enemy, would you really hold back on defending yourself?

    Treating at a researching facility vs. a treating physician for this disease at this time, is in my mind, the better option and why I wrote about it.

    Nice post, as always!


  4. Very well put,, Lori said, 'As always'.

    I was diagnosed with MM in April 2003 at the age of 39. I live 45 min. from Hopkins in Baltimore, MD so I ran there. They said at Stage III, they MIGHT be able to give me 5 years. So, I ran home, jumped on the internet and found Arkansas. Luckily, I knew the state very well and believed. I was born in Little Rock, and lived the first 11 years of my life there so I went. After chemo, and 2 BMT's, I reached Complete Remission by April 2004. I was not on any Maint. Therapy by my decision and in March 2009 the cancer returned. Dr. B. did 1 more SCT for possble use later and started me on Revlimid/Velcade/Dex. and Comp.Rem. returned in Oct. 2009.

    I am doing fine with a few side effects and fatigue but I truly believe that Arkansas saved my life. That state has given me life twice now. I believe in UAMS, Dr. B., Maint. Therapy, and a cure. We just have to hang in there. Keep rolling Nick - 100% behind you; no, I mean, beside you!

    Friends in the fight,