Thursday, March 13, 2014

War correspondence and punch to the gut

In the wake of my revised thoughts on the curative potential of Total Therapy for a certain subset for patients, at the request of my friend and fellow blogger Pat Killingsworth, I let him cross-post my thoughts in his own blog to encourage a bit of healthy reflection.

"Healthy reflection" turned into a barrage of comments for and against Total Therapy, its medical creators and administrators, and (as always, surprisingly to me) its patients.   By the end of a three day back and forth, I was getting tired of taking it from all sides.  My doctor tortures patients.  My doctor runs a "house of horrors."  I have "drunk the kool aid."  Whatever.  All I know is I'm here, more than five years from diagnosis, in complete remission, and it's a good start no matter what comes next.

When I wrote my observations and adjusted them, I did so with the express intention of making the statement that "Total Therapy may cure people" LESS controversial.  After all, I qualified it very heavily.  Here's who it will NOT cure:  (1) people that have been heavily treated elsewhere, and (2) 15% or so percent of patients who have disease profile (you might call it "high risk" or if you are cynical you might call it "those who have biology that hasn't done well with Total Therapy in the past") for whom the therapy doesn't offer the promise of cure.   Then there are people that are sufficiently old that the difference in outcome between this and novel agents isn't worth the time or the financial, psychological and physical cost of the aggressive therapy.  Then there are the people who can't logistically pick stuff up and move to a center of excellence for the therapy, and those who aren't healthy enough to endure the treatments.   Who does this leave?  Young, otherwise healthy patients with standard-risk disease characteristics who haven't already been treated, and who can afford to take the time to move to Arkansas (or Iowa, etc.) for six months, give or take.   And those people have a better than 50/50 chance of being cured.

I had *thought* this would be relatively non-controversial, particularly as even those doctors who are reluctant to admit the disease is curable acknowledge that this "could" represent a cure for a meaningful portion of people thus treated, but we just don't know yet.

Boy was I wrong.

It's like mass hypnosis sets in.  I had three people tell me that Dr. Rajkumar said something during our Cure Talk panel on cure versus control about a "false plateau" in previous statistics for Total Therapy 2.  I listened back twice to be sure.  He didn't say anything of the sort.  In fact the only thing I've seen about a "false plateau" on Total Therapy was something *I WROTE* in questioning some statistics associated with Total Therapy 3, which have subsequently been updated.  So much for drinking the bloody Kool Aid.  I'm very circumspect about this stuff -- it doesn't serve me to pull the wool over my own eyes, for God's sake.  I'm trying to make analytically sound and well-reasoned decisions about my life or death!!


Anyhow, for whatever reason, Total Therapy remains a flashpoint for some patients.  I have a friend whom I respect a great deal who is adamantly opposed to it.  She is adamantly opposed to it for very sound reasons -- particularly with respect to her own biology as she is in the group that would not be likely to benefit from it.  And she believes that continued tinkering with families of agents that are highly toxic but haven't been proven to work is tantamount to banging one's head against a brick wall…which would be fine except it's the patient's head that gets bloodied.  So I *get* her objections.  It's the denial of objective statistics, deep objections to quality of life from patients who haven't undergone any of the therapy, and ultimately the borderline Godwinism with respect to BB and his methods that don't make sense to me.

One person said that I didn't need to be BB's online advocate and that he's a big boy.  I wrote that yes, indeed, he is a big boy, having done (in the words of Rajkumar) "more for Myeloma than all other Myeloma specialists put together."  BB's legacy is secure -- he doesn't need my online advocacy for Total Therapy.  Newly diagnosed patients are the ones that need my online advocacy for Total Therapy, so that they can investigate it, determine whether or not they think it is right for them, and evaluate it relative to other treatment options that they have.

It is mind-boggling to me (sorry if I already used that phrase but I'm not going back to check at this point…I'm on a roll like D-Day in Animal House right now and the fingers are flurrying across the keyboard) that some patients have such an adamant opinion about a therapy that they didn't choose that they will not only encourage others not to do it (which is of course their right and frankly something they SHOULD be doing if they truly feel it's a bad choice) but piss on those who HAVE chosen it already.

Okay, enough.  I've vented.  : )    At some point soon, Pat is going to give me his thoughts on why some patients have formed this perspective, and I will be very interested to get his ideas on this.  If they are appropriate, perhaps they'll find their way to a post here.

And now, some truth in advertising from this non-kool-aid-drinker-objective-patient-who-went-through-Total-Therapy.

When I was first diagnosed, I looked around the Internet for other people with the disease to learn how they were doing, what treatment choices they had made, etc.  It was this experience (quite depressing, since so much seemed to be about how awful and irrevocably life-changing treatment would be) that inspired me, in part, to keep this blog going beyond the simple daily updates for friends and family during the most active portion of my treatment.

There were two positive voices that I found.  One was a man named DC with whom I still interact.  He was treated by Dr. GT in a regimen quite similar to BB's and he is doing great these days some 8 years later, I think.   The other was a woman named Lois Bertoni.  I mention her name rather than her initials out of respect for her.

Lois had been treated by BB a little more than three years before I met her.  She was in complete remission, although she had to terminate the Total Therapy protocol early (if I recall correctly, she had only one transplant and no consolidation or maintenance) because she had Lupus and had difficulty tolerating the treatment.  She'd had only two cycles of VDT-PACE and one transplant.  No Revlimid because her immune system couldn't handle it due to her Lupus.  Still, she (and even BB, truth be told) seemed confident she had licked it.   One time during a follow up visit that coincided with one of my own, I took her and her husband out to a nice dinner.  Delightful people.  I last exchanged emails with her in March of 2011 and she was doing great.

The day before yesterday I was reading a blog entry elsewhere that talked about a treatment called SUPERBEAM.  This is a nasty collection of alkalyting agents that BB and UAMS use (others as well, I'm sure) for those who have already been transplanted or heavily pre-treated (a corollary of which is that they now have disease in a state that can't be cured).  I saw somebody (possibly Pat) write that this meant four agents representing the BEAM part, but it seemed to me that UAMS uses more than just four agents.  I'm not scared by M-VDT-PACE and SUPERBEAM even worried ME.  I remember one friend who has since succumbed to the disease told me they brought one of the agents out in a glass bottle for the IV because it would eat through plastic.   Anyhow, I was researching SUPERBEAM when I found an online entry from Lois.

It was dated just a couple of months after our last email exchange.

Her disease had returned.

And as it can, both with Total Therapy and other treatments, it returned in a high risk form that didn't show up in blood, only on PET scans or in bone marrow.  She went in for aggressive treatment that included SUPERBEAM and metronomic chemo called MED-PAC.  Two years later, in the fall of 2013, she passed away.  I learned because in expanding my online search for continued updates from her, I found her obituary.

A punch to the gut.

A reminder that, as Dr. GT told me, "nobody -- not even Bart -- can tell you when you've been cured."

I have statistics.  I have exponentially more sensitive tests that thankfully have come back consistently negative.  And I have confidence in my doctor.

Confidence, but not certainty.  Never certainty.

And so the search for a definitive cure goes on.

Rest in peace, Lois.  And thank you for your guidance.


  1. Nick, you are dealing with human nature here in cyperspace.. Cancer can bring out the best and the worst in us. Evidently, you have heard from some of the worst in the past few days. People can be extremely terrritorial about where they receive MM treatment and even the specialists they see within said cancer center. I admire you and Pat K. for your honesty, humility and good humor in laying it all out there for us. Don't let the naysayers get to you. Put on your Teflon coating and let it just run off! Lovey

  2. Breathe Nick, breathe!! You have a wonderful, informative and interesting blog going on. You are not here to tell all MM patients what way to go, treatment to take nor what doctor to see. I have been reading this blog since my husband Jeff was diagnosed soon after you. People reading need to realize you are another source of information THEN, go your own way!! We have. Keep up the good work!!

  3. Nice write up Nick. I can relate to those telephone poles to the chest you describe. However, I left that fight a long time ago....just wore me down and wasn't healthy for me. Lois and I were very good friends. Her and Frank came to Utah for a little skiing several years ago and I missed the chance to sit with her....I regret that. I was crushed when she passed. She was the first person I met who could relate to what Tricot was doing at the time. Anyway, you're doing a great service. Continue as long as you like, take a break or call it quits when you lose the passion. Thank you for allowing me to be a small part of all of this. Take care brother

  4. seems clear to me that the only way to settle all of this in a manner that is both manly and civil, is to agree upon a meeting at dawn, armed with French Dueling pistols and to be engaged at 20 paces.

    -- Seconds are required to be duly fit in order to remove their wounded and/or dead.

  5. I understand and agree with your analysis. It is fair and balanced. Age, high/risk low /risk, financial considerations,prior treatment ,etc.--all of these are factors to be considered and you have expressed those clearly as possible. I am being seen by Dr. B for my smoldering/mgus?, I am 52 now. both my brother and father had MM. My brother went to UAMS and was treated by Dr. T
    Giving MM hell is the only approach that made since to myself and my brother. We have the future to look toward and I want to stop this not only for me , but for my 2 children and my brother's 2 kids. Second guessers and naysayers are looking over their shoulders at their choices and damning UAMS to calm their fears of errors in hindsight which are now irrevocable.

  6. Hi Nick I like to read your blog. I'm in Canada so I don't realy have as much opitons in what my treatment is/was, I just respect my doctor is making the best choices for me on the available options and I have done well (almost 4 year remission so far) Maybe in your shoes I would have chosen a more intesive route off the bat to aim for a "cure" upfront, but I know if I had not responded well my treatment would have been stepped up accordingly form a single transplant, to a double, to consolidation etc. I would never personally attack another MM's patient's treatment choice, doctor choice, treatment strategy, whatever you want to call it because it is different then mine. Likeyou have mentioned many times, it should be our individual factors which dictate our treatment. I think people are nasty about your intensive treatment because inside they are not happy with the choices they made, or their response to treatment, etc. It makes them feel better about their own situation to speak poorly of yours? MM is shitty, and unfortuneatly cancer can bring out the worst in some people.

  7. Hi folks! I really appreciate your kinds words. I was really kind of just blowing off steam but also sharing this dynamic so that newly diagnosed patients who encounter the back-and-forth between sometime zealous advocates of UAMS and sometime equally zealous denigrators can learn a bit of context about it, maybe. That said, always nice to get an encouraging word from this community. :)

    It's unseemly of me to say it in the heat of an argument, but I do agree with the diagnosis: denigrating the path-not-chosen when the path-chosen didn't work out is a coping mechanism. This disease places incredible stress on people and many have it worse off than I do -- so I do my best not to judge people. As I said, I'm not defending Barlogie for his sake and I'm not defending my treatment choices for my sake -- I'm confident in them and would do it again. I call attention to Total Therapy because newly diagnosed patients need to know it's an option.

    Have an excellent weekend, all! Hug your loved ones!

  8. To those of us who are not at all scientifically minded, this can all get to be a bit much. Especially when first diagnosed. Talk about overwhelming! That is why I am thankful to you and Pat K. for researching, keeping up with it all, and laying out the options for smoldering, newly diagnosed or relapsed patients! We must always be our own best advocates and stay as educated as we can be about the disease. Wishing you continued remission!

  9. Nick,

    With all this, I think one loads in all the data possible to assimilate, makes the most informed decision possible and trusts the doctors at the helm and goes forth-- as you have done.

    Second guessing hardly ever works in life. And if only hindsight is 20:20 then it is not all that helpful: we live right now and not in some Monday morning myeloma quarterback future.

    As you are pointing out, there are lots and lots of opinions out there-- I have a bunch too.

    But I think for anyone on the sharp end of all of this, you have to finally respect each person's decision at some point. Key: We're all doing the best we can, even if it we'd like better vision than what we have now.

    Still: doing the best we can.

    You have my respect.


  10. Like a highly skilled, educated, intellectual, analytical,successful person might do. You have chosen what you think is the best solution, but it is what you have researched and chosen, However, you can bring a horse to water, but after that it is up the horse to drink. Nick, you can do your due diligence, chose your path, and let others know what you believe, but after that it is up to them, and you have to accept that! You are are remarkable human being, logical, level headed, and a REALIST. I just hope people will take your input into their decision process when they chose their path to beating myeloma. Gary

  11. I feel compelled at this time to thank you Nick for always providing the most informative and comprehensive information for any of us who read your blog to take in and digest as we choose. You were there for me on January 12, 2011, when I was searching for information. You guided me as I had asked, and I will be eternally grateful. From there it was Glenn M. whose blog was a tremendous help to me. Then Bart F. who does not blog often, but what he wrote was so full of information, and finally Doug C. Thank you to all of you. In the end, I made my own decision and never looked back. Nor did I ever look at someone else's choice in a critical damming way. I read a lot, and through all that, I gained an understanding of choices. It is because of those willing, like you Nick, to write about the information they have researched that people like myself, less able to do such extensive research, can become informed. As many of you have commented, in the end, I chose what I felt strongly would work for me, and I never ever looked back. But to make this choice was much more decisive with the information I read and the personal contacts I was able to have with Nick, Bart and Doug. And to Glenn, you never knew what an inspiration you too were to me. All because you all care.

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