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.

 

 

 

Gum update, and Cure Talk panel this Friday, 6/27

So I met yesterday with two doctors and a dental hygienist.  One doctor had nothing to do with anything, other than he noted that I didn't have any bruising or nosebleeds (he's an ENT).  The second doctor is a neuro-oncologist who knows what happens to people after transplants.  He said that my bleeding was "more profound that he would like to see" but also thought it might resolve on its own.  He says that post-transplant, platelets -- even if they are in sufficient number -- sometimes don't behave the way platelets do before transplant.  In any case, he didn't see a reason to be alarmed.

I will get clotting factors run in Arkansas, and possibly a platelet smear.  I need to talk with the PA there to make sure these tests are added to the usual battery I will receive upon showing up.

This neuro-oncologist also told me that the dentist was unlikely to want to touch me.  But the hygienist was unafraid.  She consented to not going all-in on the tooth scraping, but she cleaned them up.  It wasn't a bloody as I was afraid it would be.  And this morning I even made it through a tooth-brushing without much incident.

In other news less related to gum care, I am participating in another Cure Talk panel on this Friday, June 27th, at 5PM ET.   In addition to our usual group of patient panelists, we are having MM expert Dr. Shaji Kumar of Mayo to discuss some interesting topics.   Among them the newest treatments and trials being discussed at ASCO, the Mayo Measles experience, and of course my usual question about whether or not aggressive treatment is curing some patients.   It may seem like I am beating a MM-afflicted horse* with this but there are reasons for my question, which range from newly-diagnosed patients are given an accurate portrayal of their options, to influencing the way insurance companies (medical, life, disability, etc.) view those with this condition.

You can register for the call here:

http://www.curepanel.carefeed.net/event/rsvp/ASCO-2014-Myeloma-Updates-with-Dr-Shaji-Kumar-of-Mayo-Clinic/33/

The dial-in for the call is 718-664-6574.

Hope some of you can join us!






*Get the hilarious metaphor?  Not a dead horse, because he might be curable.  Brilliant, right?  ;)

A recent and odd little issue...

Fans of the early seasons of The Simpsons will likely recognize the tertiary character pictured above.  He was a jazz musician held in high regard by Lisa Simpson for his saxophone playing -- and his name was Bleeding Gums Murphy.

It seems I am enrolled in his musical academy these days.

About three weeks ago I started noticing blood after brushing my teeth.  About two weeks ago I started noticing during the day that my gums were on the "warm side" which gave me some concerns.  Even with a soft-bristled brush and carefully brushing, my gums bleed every time I brush them.

This gave me two concerns: (1) do I have some kind of osteonecrosis of the jaw issue related to the bone-strengthening agents I was on, and (2) do I have an issue with platelets that could be indicative of myeloma or leukemia or something else wrong with the blood.

I did a little research on osteonecrosis and it doesn't manifest itself in bleeding gums, thankfully.

In my visit to the doctor this week, my labs showed platelets at normal levels (a little on the low side of the normal range, but 175K against a range of 130-400K being normal, so it wouldn't explain this).  I did note that I bled more than usual from the site of the port access when they stuck me with the IV.  So something funky is going on.  But it's not platelets.   Importantly, the most recent cancer numbers are clean as a whistle.  My immune system continues to recover from the transplants and now my IgG and IgA are both squarely in the normal range.  IgM continues to be very low -- 18 mg/dL versus a normal range of 48-271.   By the way, who decides what normal rangers are?  Are they simply standard deviations away from the mean?  Why is it 48, for example, and not 50?  Modestly interesting questions but not so interesting that I'm going to research answers.

Argh.  Intellectual curiosity got the better of me.  Couldn't help myself.  Yes, "normal" is determined by two standard deviations on either side of the mean.  Meaning 95% of the population falls in the range.

Okay, back to the primary point of the post.

I will be getting some analysis of some other things in my blood -- "clotting factors" -- when I return to Arkansas in a couple of weeks.  Unfortunately, a little Googling can be dangerous.  I had always assumed that if platelets are okay, then clotting factors are okay -- but they are unrelated.  It turns out that you can have messed up clotting factors and have normal platelets.  And it turns out that if you have this…it can be hemophilia.   It can also be something called von Willebrand disease.

Now do I think I have these things?  No.  My clotting factors have been normal in the past.  And everything I know about hemophilia came from watching the movie Nicholas and Alexandra when I was a pre-teen.  I learned from this and my helpful parents that somebody in the Csar's family (or multiple members thereof) died from hemophilia, which meant they couldn't stop bleeding.  Years later I probably picked up the inference that all those inbreeding Hapsburgs passed this genetic problem along to their kids.

I may have my shortcomings, and some of them could be laid at the feet of my parents from both nature and nuture, but I can't say there was a lot of inbreeding going on in my family.  They got that part right, anyhow!

Nonetheless, something is going on.  I shouldn't feel a warm sense of blood when I run my teeth over my gums.  Even if they aren't bleeding, it feels odd.  Something is amiss.

I'm going to the dentist next week.  I will confess I didn't always take the best care of my teeth, but I am certainly not an extreme outlier.  I think in the quiet darkness, many of us admit to ourselves that we are not diligent flossers.  That said, while my gum health hasn't been in the top decile, it's never been worse than average and I'm a good and frequent brusher.  So I don't think it's just lackadaisical oral care that is contributing to all this.

The bottom line is: I dunno what's happening.  And this falls in the category of slightly embarrassing things that I wouldn't put out on the Internet for the world to see, but there could be others with this issue and if nothing else, I hope this blog reports side effects so that others experiencing them can be aware of them.

Secondary cancer in finger?  Check.  GI issues?  Check.  Hair loss from Velcade?  Check.  Weird rash on fingers and hands?  Check.  None of these are particularly dignified, but this isn't a dignified disease.  And if talking about these embarrassing little topics can help a few people, then I'm prepared to endure some public indignity.  :)

I am participating in another CureTalk panel next Friday, so I will update about that soon.   Have a good weekend, all!