Monday, June 30, 2014

Why I am a pain about this whole "cure" thing

Hello folks.   I am returned from a weekend in Vegas.  As I remarked to me friend and fellow MM warrior SuzieRose, I figure that whatever cells eight types of drugs didn't kill, a weekend in Vegas ought to finish off.

Our friendship is an ironic one, since it started out in a rocky way via an argument online about doctors and curative protocols and what not.  I've learned a great deal more about the disease and how to consider the cure issue since that time, and I think she has also developed a more nuanced perspective.  It's tempting when one is dealing with this disease to focus on one's own biology and experience and generalize the specific.  We all do it -- I certainly have done so from time to time.  It's very difficult and takes practice not to do it -- or to extrapolate from anecdotal experiences and assume patterns are observed based on that.  The most capable and valuable online Myeloma bloggers all do this from time to time -- it's human nature.

In my own case, as I have said time and time again here, I recognize that my progress to date has been fortuitous (with a few little bumps along the way) and that even if my success is typical for the UAMS Total Therapy protocol, it's not typical for Myeloma.  I have qualified my enthusiastic support for UAMS/MIRT/Total Therapy (which remains enthusiastic indeed) by noting that depending on individual disease biology, age, health and other factors, it's not for everybody.

But it IS for a large subset of people.  Because cure is out there.  And in a moment I'll explain why it matters and why I am persistent in talking about it, both informally here and quasi-formally on panels in which I participate, such as in last Friday's conversation with Dr. Kumar of Mayo, MN, who is a true expert among a group of true experts.

It wasn't long ago that this group of true experts said, unqualifiedly, that this is an incurable disease.  Yet now, as can be heard here on a replay of the panel conversation, Dr. Kumar notes that the disease is curable in some cases -- it's a question of how many.  It's not surprising to me that Mayo will move incrementally on this issue: five years ago, nobody was saying it's curable, but now there is just too much data to ignore.  An immediate flip-flop is neither called for, nor practical for an institution that is conservative and managing its own reputation as well as prudently observing a graduate accumulation of research data.  It would be irresponsible to announce the disease is curable in any event, because even if TT worked for all low risk patients (and it doesn't), there is a meaningful subset of MM patients with disease biology that doesn't respond to it.

Unless and until everybody can be cured, we can't, and shouldn't say the disease is curable.   However, it's equally inaccurate to say that it is universally incurable, or that cures are as rare as "black swans" (no offense to my friends working on that project).  The disease is curable in some cases, through aggressive treatment, for those who are prepared to go through the disruption of that treatment.

Why do I harp on this continually?   Why does nearly every doctor with whom I engage on a panel get some variant of the question that I have been pressing with increasing statistics to back me up?  It's not, as some have accused me of, because I'm defending my doctor.  His legacy in treating this disease is secure.  It's not to make me feel better about my own treatment decision -- I'm secure in that, whatever the outcome.  I will admit I'll feel more relieved if it's acknowledged widely that I'm cured at some point, but that's neither here or there right now.

The reason I am pressing for this is that newly-diagnosed patients deserve to know, and because it influences research, treatment, and patient life post-therapy.

In ONE comment thread, in ONE online support community, in a response to a question simply about "where are you from and where are you being treated" (in other words, as innocuous a question as could possibly be raised, here are some responses.

From a 51 year old diagnosed five months ago: "[I am] so scared and sad.  I'm crying right now.  It's so hard."
From a 48 year old diagnosed four months ago:  "I fired [my] oncologist.  It's hard."
From a 59 year old diagnosed one month ago:  "I am scared too."
Another: "It can be VERY depressing very quickly.  It is a difficult road with a LOT of wrong turns...It takes a lot of tears."
 A caregiver adds:  "I can only imagine how [frightened] you must feel." 
One who was diagnosed ten years ago while smoldering at 53 and who now is beginning treatment:  "[I'm] scared as hell…overwhelmed right now and scared to death with what I am reading."
"How is it that you were diagnosed in 2001 and still in remission?"
I can go on and on.

How much better -- more hopeful -- could patients be if instead of being told "you have incurable cancer" they are told "you have a cancer that may be curable in some cases, and you have a number of options for treatment depending on your preferences?"  How much clearer could their decisions be, if they weren't understandably torn apart emotionally by a diagnosis that can seem like a death sentence?  How much better would they feel if they were able to look at a number of choices and, with their doctor or doctors, make the one that seems best for them -- versus being scared into following whatever protocol their doctor happens to prefer without explaining the context for that decision?

If the disease is curable, it directs research and therapy to better outcomes.  Five years ago, papers were published saying that compete remission wasn't a meaningful marker.  This is FLAT.  OUT.  WRONG.  People have backtracked on it now and are continuing to do so.  But if CR isn't a meaningful marker, it's not a goal of treatment.  If it *IS* a meaningful marker (as a precursor to a cure that could be out there) then research is focused on getting to CR, treatment is focused on getting to CR, etc.   If the disease is curable for low-risk patients, then more research is directed towards those with biology that doesn't respond to existing treatment -- which of course benefits all patients.  These are meaningful and important influences on the direction of research and therapy.

If the disease is curable, those of us carrying on with the realities of daily life think and are thought of differently.  This disease, if incurable, crushes careers, wipes out insurability, destroys relationships.  If curable, careers are interrupted but not destroyed -- insurers (life, medical, disability) will insure patients after a period of remission, just as they do with other cancers -- and just maybe there will be less stress placed on interpersonal relationships.   I have a friend whose scientific experience and advice I have referenced in this blog in the past, and he married a woman whom he knew to have terminal cancer, with only a short time left to life.  This was an incredibly compassionate and loving act.  Not all people have that much integrity -- it takes a very special person and the stories I hear about patients being abandoned by spouses and loved ones after a diagnosis are devastatingly sad.  If the disease is curable, it can't help but be thought about differently.

This is why it's important to keep pounding this drum.

I've gotten two members of the Mayo Dream Team (I don't say that sarcastically -- they are among the best) to say in a public forum that the disease is curable, and over time they'll admit it more readily, as will others.  It may even be enough for me to let up on them and ask a different question next time.  :)

That said, this issue remains of vital (literally) importance.  And ignoring it does patients and caregivers a disservice.  So I will pound the drum as needed from time to time.


 

 


 

5 comments:

  1. I could not agree more! Informing patients of all options plus that their is a cure avenue for some patients with DNA expressions now under study, gives patients hope, and that is what is needed. It also directs research and grants toward the centers leading the way
    ....and we all know that is UAMS!
    Keep up the good fight!
    Keith

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  2. Hey Nick…thankfully, I don't have MM (prostate cancer in January was enough, thankyouverymuch), and you're actually the only person I know who does.

    With that, I drop in to read your blog every once in a while, to see how you're doing and read some of your posts…they're informative, uplifting, positive, and often hilarious. A bit inspirational, too.

    I guess what I want to say is that I admire you for (1) your tenacity in fighting this disease, (2) your dedication to learning more about it, and especially (3) your commitment to helping others by sharing information, keeping this blog going pretty consistently these past 5 years, and being supportive of others struggling with this disease even while continuing your own fight.

    With that said, keep up the good fight, stay positive, and as always, I wish you the best!

    Craig
    P.S. Coming to PPUSA this year? If so, see you there!

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  3. Nick,

    Full speed ahead. I'm with you on this! Even many of the most skeptical are now admitting that we are curing a certain fraction of patients-- we just won't know how many for 20 years.

    CURE is the only reasonable objective and like Durie and Orlowski, I believe we likely have all the weapons necessary to make it so for many patients.

    Thanks for carrying on the good fight.

    I too, am doing my best.

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  4. Right on, Nick. As much as some in my small circle have tried to make me feel like a delusional outlier when I've suggested that evidence supports that MM is potentially curable for some patients, you have served as an intelligent, passionate, and eloquently big voice in the fray.Thank you. Bang your drum loudly! The very reason that I went to UAMS was to seek a cure, nothing less. I am happy to see a turning of the corner in the MM community, with appropriately guarded reluctance, that there is, indeed, hope for a cure in some patient populations. We think of you fondly in our house and wish you the best always!

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  5. All diseases and conditions are curable by the Grace of God. I, too, have had mm.

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