Ruminations on last weeks' tests

I try not to overthink all this stuff, really, but it's a fine line between wanting to know everything I can about my condition and the likelihood that I'm cured and what can be done to ensure that outcome, versus obsessing about it.  Generally speaking, I feel like I've done a very good job of managing this.  I don't feel or live as though I have a Sword of Damocles hanging over my head.  I don't think about cancer -- consciously -- all that much, all things considered.  I hear about people who approach upcoming tests with dread and I don't really have that feeling.  I have 10 minutes of eagerness reading through results on the day I'm to meet with BB, but other than that, I've got it under control most if not all of the time.  And part of the reason I don't have that dread, I think, is because the tests are so frequent and I am sufficiently on top of things that the "unknown" part is kept pretty well managed.

For this reason, I'm permitting myself to indulge in some "what if" thinking at the moment, based on last week's test results.

At the end of the day, if I have a thyroid problem, that's controllable with pills.  It might even explain some of the fatigue and GI issues.

Similarly, I'm not really worried about the presence of "small lymphocyte aggregates" in my marrow, because if it was something serious, they'd have told me instead of telling me not to worry about it.  While I want to learn more about this, the little research I've done indicates that it's present in a benign form in much of the population.  It's connected to lymphoma but I think it's correlation without causality and if I had other lymphoma markers, they'd be evident.

What I *am* worried about is the connection between the unresolved lesions in my bones, and the mysterious reappearance of the monoclonal signature in my blood under sensitive tests (normal tests still show that it's negative).

When they perform the fine needle aspirates of my spine and hip, they will pull marrow (assuming the sites are accessible) and analyze it for the presence of myeloma.  They last did this a year ago during the "great MYC gene scare of 2012" and the one site they were able to access at that time was the hip, and it was negative.

They did not, at that time, have the ability to run an MRD test -- the Minimal Residual Disease test there is dozens of times more accurate (I seem to think 60X) than a standard bone marrow analysis.  I haven't had the chance to speak with them about this but it's certainly possible that they may want to pull the marrow from there to run MRD tests on it.

The one marrow site they did access -- my hip, not where the lesion was but in one of the sites where the marrow is most prominent in the body -- was negative for MRD, and that's great.  If I was MRD negative throughout the body, I'd be considered cured.  The issue is that it's from one site, and marrow could be clean in one place and not-so-clean in another.  BB told me he is working on developing a test that would perform MRD on the blood, rather than the marrow, which would tell all.

But we don't have that yet, so instead I will be pin-cushioned here once we get it scheduled.

The best case: the former lesion sites are all accessible, each is MRD negative, the marker in the blood is a sign of marrow recovery rather than returning disease, and BB tells me I'm cured and can go off meds.

The worst case: one or more lesion sites show residual disease, the marker in the blood is a sign of its return, and I need to determine whether or not to undergo aggressive chemo to keep on the potential cure path -- or accept that relapse is inevitable and join folks who are waiting for more treatments to come out of big pharma.  After all, if I still have disease, it's resistant to Velcade at a minimum.

The likely case: not all lesion sites are accessible, the one or two that are are negative for MRD, we chalk the blood up to marrow recovery but deep down inside neither of us is all that confident in it, and I stay on Velcade and continue to wait out resolution of these lesions.

More news to come as events merit.  Be well, all.

An update: the good, the bad, and the ugly...

Clint Eastwood:

* My MRD test (the most sensitive marrow test they have) tested more than twice as many cells as last time, owing to a better marrow sample.  With around 3.5 million cells tested, not a single myeloma cell.  From this part of my hip, at least, there is no disease remaining.


Lee Van Cleef:

* My bloodwork under Immunofixation says "the original IgG Lambda M Protein may be present.  An in distinct monoclonal band is present in the lambda region.".  This COULD, I am told, just be the product of recovering marrow.  Of course it is also what it would look like should the disease return.

* My T4 thyroid count is very low.  Not sure what this means but it requires more testing.  T3 is normal but on the lower end of the normal range.  T4 has dropped significantly.

* My marrow, while negative for myeloma and MDS, is reported as having a "significant hematologist abnormality" called a "small lymphoid aggregate.". BJ told me not to worry about this but anything that is a significant abnormality seems definitionally to be something to worry about.  I don't yet know what it means although initial research indicates it may be present in up to 60 percent of the general population so I will see what I can learn.


Eli Wallach:

* The lesions in my spine and hip are unchanged.  As they haven't made any move towards further resolution in two years, BB wants to stick needles into each of them and test the marrow from those spots.  I suppose if they are all MRD negative, he might say I am cured regardless of the fact that they persist, but I don't know as he was running so late I didn't get to speak with him directly about this.

That means a return visit to Arkansas for more bone marrow biopsies sometime soon.


I am tired of this -- and yet mindful that many others with this disease have it far worse than do I.

On balance, then, I probably don't feel as crestfallen as Eli Wallach did when his agent called and said "they're considering you for a movie called 'The Good, the Bad and the Ugly'...the good and the bad parts are taken."

Concern allayed

I had the pleasure of having dinner (and wine!!!) with BB, his lovely wife, his irrepressible chief of staff BJ and a colleague of theirs who has recently joined in a consulting role after years of doing this with the IMF.

Among the stories, laughter, jokes and discussion of all things Myeloma, I did speak with BB about the ending of the lite arm of my study.   As it turns out, because the stated goal of the study was to reduce toxicity (mouth sores, most prominently) and because this wasn't achieved, the study was ended early by a review board.  All patients now receive the standard arm.  BB said that there were no meaningful differences in outcome and in fact depending on what cytogenetic abnormalities a given patient has, some patients fared better under the lite arm.  He said they were working to try to understand why but did not have this figured out yet.

He also told me he is working with some colleagues on a new MRD test that will seek to overcome the imitations of the current one -- primarily that marrow from one individual site in the body could be free of cancer cells but there could be some elsewhere.

All good news.

Now we wait to see if the MRI is clean, if my MRD is negative in marrow, and if the bloodwork is clean and I can write off that mysterious monoclonal signature that showed up recently.

We should know on Friday.

An unnerving update from Arkansas

I have been in Little Rock for about 16 hours, and already managed to get my pizza fix in from the always-delicious Dam Goode Pies.

Sadly, that is the highlight of the trip so far.

After early morning MRIs, the scheduling snafus began.  I am in the infusion center for my third attempt at getting labs done today.  I mention this primarily because I think back to nearly five years ago when I was running around City of Hope.  I have grown more tolerant of delays and scheduling mistakes -- I wonder how much is that I cut the good people of Arkansas slack given that they have hopefully saved my life, versus me just having mellowed.  Perhaps a bit of both.

I met with the data manager, a usually innocuous meeting that involves me updating the center here on anything of merit (for example the endoscopy, side effects, etc.) and signing some consent forms once in a while.  Velcade now has a small risk of some kind of horrible brain virus that kills ya dead. Very rare, I am told.  Nobody has seen it here in Arkansas, but it must exist.

That wasn't what troubled me, however.

I was told that the "lite arm" of Total Therapy 4 had been discontinued.  The lite arm involved one less cycle of induction (pre-transplant) chemo, and one less cycle of consolidation (post-transplant) chemo, and the transplant chemo spread out over more days versus the standard arm of the study.  The goal of doing the two arms was to see if they could achieve the same clinical efficacy (ie cure rates) and achieve less toxicity.

I was told the lite arm would not result in any less efficacy of outcome or it wouldn't be studied as it would be unethical to do so if the doctor had any reason to believe the outcomes wouldn't be as good.  So on we went and I was happy to get the lite arm as it meant less chemo.

In explaining why the study had been discontinued, the data manager said that it was because there was no difference in toxicity noted between the two arms, and the "gold standard" remained the standard arm so they didn't want to change it.  That is one interpretation.  The other is that the lite arm outcomes weren't as good.   Sadly, my money is on this as the real reason.

It is very disturbing, to say the least.

I see BB on Thursday and will ask him abut it then, if I don't see him before then for a drink or dinner.

I better not have gone through all this to have a worse outcome than if I had done just a little more.

:(

When does a negative test not feel so negative?

When instead of saying "the original protein cannot be detected", as most of my tests from Arkansas have said, it comes back "the original M protein may be present.  Multiple indistinct bands are found in the gamma region in the area of the original protein."

CR at UAMS assures me it is negative.

I do not like it, Sam I am.  If I wasn't rushed here, I'd come up with some witty play on Dr. Seuss using the words "blood" and "protein" and "monoclonal" even though no rhymes come immediately to mind with respect to any of them.

The local test said there's no monoclonal protein.  The same blood tested at UAMS comes out as above.  So UAMS is more sensitive.  Ugh.

UGH I say.

Oh well.  Probably nothing, and there's nothing I can do about it even if it *is* something.  Come September, the MRI should tell all.  If those stupid pits are gone, perhaps I can breathe a bit easier.

Curetalk panel with Dr. Kumar from Mayo Clinic...any questions?

Hello folks.

I've participated in a number of panels over the last year with various Myeloma specialists.  Thursday of this week at 7PM Eastern, Dr. Shaji Kumar of Mayo, Rochester will be discussing updates from the most recent ASCO conference, as well as taking questions from the panelists, myself included.

If anybody has anything they'd like to ask, please let me know and I'll do my best!

Meanwhile, if you want to listen, you can register for the call here:

http://trialx.com/curetalk/panels/dr-shaji-k-kumar-from-mayo-clinic-discusses-myeloma-asco-updates-on-the-cure-panel-talk-show/

These calls are typically limited to 50 participants, all of whom can also ask questions, or can stay anonymous and just listen.  These are typically pretty interesting and informative so I would encourage those who are interested to sign up.

Only a false alarm. Immunofixation negative!

So I saw my Dr. GD out here on Tuesday, and explained to him I was uneasy about the immunifixation test.  He didn't seem to get the gravity of my concern -- deep down, he still thinks it's unlikely that I'm cured so for him, seeing a return of monoclonal protein is almost expected, just a matter of when.  I explained to him that I'm going after something different, and he said he understood...but I'm not sure he did.

Anyhow, he ordered a battery of additional tests, and I had them draw some blood to send to Arkansas as well.  I'm waiting for their results, but the local lab came back with "normal pattern, no monoclonal proteins detected" under the immunofixation test.

So I'll chalk this up to either a false positive, the oligoclonal noise that BB expects, or possibly my immune system ramping up in response to a potential cold that I may have been fighting off.  Didn't feel that bad although I had a tickle in my throat and my WBC went up to 5.8, which for me is high (it usually is around 4).  WBC will be recovering now that I'm tapering off my Velcade and not on Revlimid any longer, so that could also be the cause.

In any case, until I hear otherwise, I remain in profound remission and hopefully am cured.  Still waiting for those pesky pits in my spine to resolve but we'll see how those are on imaging in September.

I may or may not share some information about a patient I've recently become friends with who was in the care of JB (the anti-transplant guy) and had unsatisfactory results...but for now, accentuate the positive, which is to say, the test is negative.  :)

Have an excellent weekend, all.

Incomplete feedback from a couple of doctors on my labs

So in the wake of my alarming little reappearance of the word "monoclonal" on my labs the other day, I did a little inquiring.

BB told me not to worry, as previously reported.  That this was an oligoclonal band and a sign of marrow recovery.  This is corroborated by that article I posted.

BJ, BB's right arm, was kind enough to follow up with a summary of the immunofixation tests I've gotten from Arkansas over the past three years.  Several (early on, though) did indicate the presence of more than one monoclonal band.  They were not the original MM protein that was reflected by my disease, though, so it wasn't a recurrence.

However, these reports have likewise been clean the last several months.

Dr. GT, a MM specialist in his own right who used to work for BB, has been kind enough to answer a few questions of mine over the last year since my friend CP, whom is in his treatment, has been a great teammate in our little battle here and she referred me to him.

GT said that without knowing which specific protein (both light and heavy chain) this is, it's impossible to say whether or not it's a recurrence of the disease.

Which brings me back to the Arkansas comment that seemingly indicated my original monoclonal issues had both a light and heavy chain component, and since the light chain is the only one that was found here, that's another indication that all is well.

But unless Arkansas sees the detail behind the protein and confirms it's not the same, I won't be convinced.

So I'm going to get some blood sent to Arkansas the next time I'm back at the doctor's.  I'm supposed to be sending it to them monthly but I must confess, years of complete remission and a growing confidence (interrupted by a few crises of faith) that I'm cured has led me to be a bit cavalier about so doing.  I resolve to be better about this going forward.

The likelihood is that this is either (a) a false positive reading or (b) oligoclonal.  That said, as I wrote above, I'll still be trepidatious until it is confirmed.  Until then...I shall try to put it out of my mind.

Another false alarm?

The Iron Law of Oligarchy.

I remember literally nothing else about a class I took in comparative political structures of developing nations during my junior year at UCLA except the professor's name (Edward Kannyo...I just looked him up and he's still kicking around, writing articles about post-Gaddafi Libya) and the fact that we read some book called the Iron Law of Oligarchy (or, rather, were supposed to have read it).  I just knew to throw that phrase around once or twice in a paper.  Somehow I did well in the class.  Hmm.

I should have been studying microbiology, instead, it seems.

Oligo = numerous, mono = one.  Oligarchy is rule by a few, monarchy is rule by a...wait for it...monarch.  One.  Oligopoly is control by a few, monopoly is...well, we all know.

Oligoclonal means several bands of duplicated protein.  Monoclonal is one.  One bad protein, reflective of cancer.

If monoclonal proteins show back up for me, it means the whole attempt at a cure is obviously shot, and more depressingly it means the disease is most likely drug resistant and high risk in its profile, given the experience in the still fairly low (less than half) of low-risk, newly-diagnosed MM patients that relapse under Total Therapy 3 (or 4, its successor therapy) at Arkansas.

I would, needless to say, not like to see a return of the monoclonal protein.

When one is recovering from a transplant, it is not uncommon to find oligoclonal bands in one's blood or urine.  This is actually a sign of a recovering immune system, and is in fact consistent with remission and the natural healing of the body.  Here's an abstract from the NIH on the topic.

I had this when I was first in remission, and it was noted for maybe six months.  Then, nothing.  Not a trace of anything untoward in my blood, for more than three years.  Good stuff.

Imagine my dismay, then, when yesterday my labs from two weeks ago were ready and there was no monoclonal protein in my blood under SPEP (Serum Protein Electro Phoresis, a relatively blunt instrument relative to the other tests but still capable of detecting low levels of monoclonal protein).  However, under the more sensitive immunofixation test, the following result came back:

Faint monoclonal lamba light chain observed in the gamma region.

That's not good.

I had IgG lamba myeloma.

Of course I immediately texted BB and reported the precise wording of the test, including the fact that SPEP was negative.  I ended my text with "should I be concerned?"   This is kinda like the Hindenberg reporter saying "uh, looks like sparks up there, hope it all works out."  In other words, I was already quite concerned.

The next fifteen minutes were pretty tense.  Thankfully, as busy as BB is, he checked he cell phone and within fifteen minutes he wrote back:  "No.  Oligoclonal."

Now...this MIGHT be the case.  It could simply be that the one band is so faint that others which could be there are even fainter.  It could also be that as a light chain (my light chains are normal and the ratio is in balance) versus blood, it might not be anything to be concerned about.  And I did a scan of the Internet and found a site where a doctor said that such a signature was, in fact, nothing to be worried about.

That said, it scares the crap outta me.

I tested negative for any disease with the extremely sensitive MRD test in Arkansas in March -- that's about 60 times more sensitive than immunofixation.  And my marrow was clean as a whistle.  So I'm probably worried about nothing.  Maybe, when I get my next test results back on or around the 23rd of the month, it will show nothing, again, under immunofixation.  It might be a plain ol' false positive, after all.  I've had friends with false positives for this disease.

But like I said, it scares the crap outta me.

Not much I can do other than wait it out and stay strong.  I am once again humbled by the bravery of those patients who struggle to stay in remission and watch their disease progress -- I have very little to complain about.

Have a jubilant Independence Day!

In memory of Hanna Ostrowiecki

Last week I lost a friend to this disease.

Hanna Ostrowiecki was a remarkable woman whom contacted me in October of 2011, after the doctors in Canada told her there was nothing more that could be done and she had three months to live.

After visiting Arkansas, she began treatment under BB and lived another 18+ months.  Not a victory in the end -- time is still undefeated, after all -- but a minor victory for Hanna's family and friends.  And, selfishly, a victory for me because I had the opportunity to visit with Hanna and her husband Alex about nine months ago in Arkansas.

Hanna -- as is typical for those in Arkansas who have been heavily treated elsewhere -- underwent extensive therapy to try to control the disease.  This she did for 18 months, with an extraordinary amount of dignity and grace in the face of a disease that is manifestly undignified and graceless.

On May 21, Hanna emailed a few of her close Myeloma friends to tell us that she was ceasing treatment, accepting palliative care at home, and enjoying the remainder of her time with her loved ones.

Last week, she ended her fight, on her own terms -- which is all any of us can really hope for.

I was privileged to know her, and am thankful especially for the time she, her husband and I spent over a nice breakfast in Little Rock.

I am reminded of something that my friend the brilliant scientist EH said about his experience with the lab monkeys.  This man married his wife after this woman learned she had terminal cancer.  And he was with her through her own battle, short and painful thought it must have been for them both.  He told me that the monkeys that fought were the ones that did the best...but that cancer also gets a vote.

Hanna fought the good fight.  She was a remarkable woman.  And I (and many others) will miss her.

Applying for Disability with Multiple Myeloma

Regular readers will know that this blog is really a diary to help share what it's like contending with this disease, and that's the way that I'm most comfortable helping.  I don't really do public service announcements.

However, I was recently contacted by Ram Meyyappan from an organization called Social Security Disability Help.  He asked if I would post an article about how to apply for disability with our condition.  Since I thought this information might be of benefit to some of my readership, I agreed to post it -- I hope it can be helpful.

Thanks to Ram for contacting me and putting this information together.

Applying for Disability with Multiple Myeloma

If you suffer from Multiple Myeloma, then you may qualify for Social Security Disability (SSD) benefits under one, or both, of the Social Security Administration’s (SSA’s) disability programs. The severity of your disease as well as the treatments required for addressing your condition, both affect whether or not you can be found medically eligible for SSD benefits. However, there are additionally technical requirements for eligibility under both programs that must also be satisfied.

The SSA’s Disability ProgramsFor either SSD program, you must meet the basic eligibility requirements before the SSA will proceed in reviewing your medical condition in more thorough detail. Basic, or technical, eligibility under each program differs.

• For Social Security Disability Insurance (SSDI), you must meet the work credit requirements and limitations on earned income.

• For Supplemental Security Income (SSI), you must have very limited income and other financial resources at your disposal.

Once the SSA has determined you meet the technical criteria to receive benefits through either, or both, of these programs, then your application and your medical records will be reviewed to determine if you meet the medical requirements for eligibility.

For more information on SSDI and SSI, please visit: http://www.ssa.gov/disability/

Medical Eligibility BasicsTo be considered disabled by the SSA, you must have a medical condition that (1) prevents you from maintaining gainful employment AND (2) is expected to last, or has lasted a year, or which is terminal.

Specific Medical Evidence for SSD with Multiple MyelomaThe SSA maintains a manual known as the Blue Book, which contains the medical evidence requirements for supporting a disability claim for many different potentially disabling conditions. The listing for Multiple Myeloma appears in Section 13.07 of the Blue Book and requires your condition was diagnosed by the following tests:

• Urine protein electrophoresis

OR

• Serum blood protein electrophoresis

AND

• Bone marrow aspiration or biopsy

Additionally, in order to qualify for SSD benefits under this listing, your Multiple Myeloma must also:

• Be progressive, even after receiving anti-cancer therapies

OR

• Fail to respond to the available anti-cancer treatments

If you have received a stem cell or bone marrow transplant to treat your Multiple Myeloma, you are automatically eligible to receive disability benefits under SSDI and/or SSI, provided you meet the technical eligibility criteria for either, or both, programs.
Transplant patients are medically eligible for benefits for 12 months following their transplant surgery, regardless of their medical condition otherwise during that timeframe. After the expiration of the automatic eligibility period, their condition is evaluated by the SSA to determine if they are still disabled and therefore eligible for the continuation of SSDI and/or SSI benefits.

Submitting your Disability Application
There are several ways in which to submit an application for disability benefits: 

• In person, at your local SSA office

• Online, with the SSA’s website (http://www.socialsecurity.gov/pgm/disability.htm)

• Under some circumstances, via phone, with an SSA representative

You can contact the SSA’s main help line at 1-800-772-1213, if you need to inquire about scheduling a phone interview to complete your application, or contact your local SSA office to schedule an appointment to complete your application in person.

You should also strongly consider hiring a disability attorney or advocate to help you with your claim. Not only will your attorney help you fill out the necessary paperwork, but he or she will also help you with the appeals process if your claim is denied.
 
Article by Ram Meyyappan
Social Security Disability Help

For more information on Multiple Myeloma and SSD, please visit: http://www.disability-benefits-help.org/disabling-conditions/multiple-myeloma-and-social-security-disability

A contrarian opinion on nutrition and Myeloma

Hello folks.   Have been waiting for something noteworthy to post...there are a few things that are percolating but nothing has really broken through just yet, although hopefully in the next several days there will be a couple of things of (minor) interest.  Quite minor, as in don't expect much.  :)

One recent text I got from a friend a fellow traveler did tickle my funny bone, however, and I thought I would pass it along.

Among the many things we MM patients consider is the impact of diet on our condition.  Is there anything we've eaten that could have made this worse?   Diet soda has had a number of detractors lately, although it's a little murky considering some of the damning research was subsequently retracted.  However, Dr. BD (a leader in the field and one of my early consults) is big-time against consuming any diet soda and considering I was drinking 10 a day (not an exaggeration) before diagnosis this probably played a part in my disease.

Then there's Asparagus.   What to make of it?  Death-dealing carcinogen to be avoided by Myelomics?   A powerful cancer-fighter?  Or somewhere in between?   My money is on the latter, although based on the evidence it's probably not a good idea to pound this stuff if you have blood cancer, MM included.  But a few stalks one or two times a month?   Pfft.

Then there's curcumin.  Preventative care for MGUS, if not MM?     Or...maybe something else?

My point isn't to poop on the holistic medicine parade here, but I did want to convey a quick message that maybe...JUST MAYBE...we should relax, eat sensibly, and not sweat the details too much.

My friend BB, not to be confused with my Dr. BB, is experiencing a rare (for UAMS) and unfortunate (for anybody) recurrence of MM after initially responding favorably to treatment.  Per the aggressive UAMS approach, the response to this is...continued aggressive treatment.  BB (the friend, again not the doctor) has undergone the newest drugs (Kyprolis and Pomalidomide) with mixed effects, additional VDT-PACE (nasty chemo), and several other combos, and has found some stability with low-doses of chemo administered continuously over 28-day cycles.   He's understandably tired.

He wrote:

"I've always led a healthy lifestyle, diet, exercise, etc. but considering everything I'm going through I need to step it up...So here's what I've started and am developing along the way as I do more research:

Reduction of fat in diet.  Curcumin.  Barley.  Probiotics.  Beta Glucan.  Lots of Omega 3s. Daily detox juice of kale, cucumber, apples, ginger, lemon juice, olive oil.  Breakfast of organic Greek yogust (not the pretend stuff) with flaxseed oil."

Then the payoff:

"Of course BB says it's all a bunch of crap."

Haha!   I do love my doctor.

I think the point is not that BB advocates an intentionally unhealthy lifestyle (like me drinking 10 cans of diet soda a day for ten years) but that a sensible diet in moderation is likely to have just the same impact on Myeloma as spending two hours a day assembling a precise cocktail of stuff that deprives you of the joy of just eating what you want (again, in moderation).  Should you eat short ribs and ribeye steaks every day?  No.  But should you sweat a cut of lean beef every 10 days?  No.  Should you eat a pile of bacon or steak and eggs for breakfast every morning?  No.   But confining breakfast to yogurt made from goats grazing in a "blue zone" on a particular Greek island probably isn't worth the stress.

I hope that my friend BB gets better quickly -- from any combination of overzealous dietary focus to good ol' fashioned poison.  But don't forget to stop and smell the roses...without stressing too much about whether or not they've been sprayed recently for pesticide.  :)

Hmmmm...a hiatal hernia

So hot of the presses, I called Dr. LJ's office to find the results of the double endoscopy.  I'll evidently be getting a letter detailing everything.

The good news is that my colonoscopy is completely normal and negative for everything.  I guess I'll just rely on Immodium to stabilize things once I am off meds and take it from there.

The bad news is that I have a hiatal hernia, which is when the top of the stomach intrudes where the esophagus is supposed to be.  It's nothing to be concerned about but it can cause acid reflux, which I have experienced from time to time (including, ironically, last night).

It can be corrected surgically but this is considered an extreme step.  Instead, they recommend some simple dietary changes.

I just looked this up, and they sucked.  It might as well be a list of food I enjoy.

To avoid:

* Citrus foods, such as oranges, grapefruits, lemons, orange juice, grapefruit juice, cranberry juice and lemonade.  Not the end of the world but I do have this stuff 2-3X a month.

* Chocolate.  I am good at curbing my sweet tooth most times by I do have this 2-3X a month as well.

* Fatty and fried foods.  Easiest thing for me to eliminate -- I effectively have already done so.

* Garlic and onions.  Love them both.  Essential in some cooking.  No way.

* Spicy food.   Love it.  No way.

* Peppermint and spearmint.  My precious altoids!  Not a big deal.

* Tomato-based foods such as spaghetti sauce, pizza, chili, salsa and tomato juice.  No way.  I loves me some tomatoes.

* Coffee, tea (including decaffeinated versions) and alcohol.  Good luck there.  No way.

* Carbonated beverages.  Again, no way.  So far, I can drink tap water and eat steamed broccoli so long as it doesn't have a hint of spice or onions or garlic.  I think I'll deal with the acid reflux.

* Dairy products.  I don't use a lot, but once in a while they're necessary.

* Oil and butter.  Oh c'mon.  Be realistic!

So...yeah.  I'll just take my pantoprazole once in a while and enjoy my life!

Well, I made it through.

Anesthesiologist stabbed me four times in the damn port trying to start an IV and had to eventually start on the old fashioned way.  Otherwise, uneventful.   I will find out the results in a week.

Evidently, when coming out of anesthesia, I asked the doctor "did you find Jimmy Hoffa up there?"

Good stuff!   Have a good weekend, all.

I survived the night, and why I explained Che Guevara to my 10-year old

So, first thing's first, I'm alive.  All in all, it was bad but not THAT bad.  The reality is, all the "cleansing action" induced by 10 days worth of laxative ingested in a two hour period wasn't any worse than the pre-Vegas GI problems I had, and was probably LESS severe.  So the prep for today's diagnostic wasn't as bad as the problem which the diagnostic is attempting to uncover.

Hurray.  I guess.

I heard from one helpful commenter that her husband had an issue which turned out to be lymphocytic colitis.  Doesn't sound fun.  However the treatment was testosterone and it went away; meanwhile, I am getting testosterone already.

Also on yesterday's call, I asked Dr. RO (head of MM at MD Anderson) if he had experience with post-transplant patients having GI damage and he said that it can happen and he would be concerned with amyloidosis -- which I'd heard bandied about a lot as a related condition to MM but never researched.  It's the body's inability to absorb protein and it can cause the GI problems I've got.  Now, I *have* to assume UAMS would test for this...and yet nobody brought it up in my previous "what's up with all this diarrhea" conversations?

They say two data points equals a trend.  So the trendline here is there could be something materially wrong.  Or maybe it's nothing.  Who knows.  But it's enough to make me a little trepidatious.  It's enough to make me interested in the outcome of these tests.

Four hours and counting to the procedure...and I'm a teensy bit hungry.  I ingested half a bottle of gatorade throughout the night to replace some electrolytes, which means I took in about 100 calories yesterday.  Truth be told, it's manageable.  Although I did have dreams about food -- two of them, actually.  And the caffeine headache is a now a bit of a nuisance, since I'm in the four-hour pre-procedure window where I'm not allowed to drink anything either.  

So on to the levity.  Anticipating the worst from last night's circus act, I got out of my work clothes when I returned from the office and donned something comfortable -- sweatpants and a T-shirt that I normally wouldn't wear.  Last night's was a hilarious one that I bought one time after some of that gin that I referred to yesterday.  Aaah, tipsy online shopping, where we would be without you?

Hilarious, right?  : )

Not that I'm some right-wing nut, but after all, this guy was a mass murderer and people are starving in North Korea.  Kim Jung Un, if you are reading this: YOUR SYSTEM DOESN'T WORK.  PUT DOWN THE MISSILES AND PLAY NICE WITH THE OTHER KIDS.   Wooly-eyed college students might benefit from thinking about this slogan, too.

Anyhow, my daughter was standing in front of me in the kitchen and it dawned on me that she was reading this.  So I found myself having to try to offer simplified explanations of who the man was and what communism is and the irony of the T-shirt and the reason the slogan was funny given that recurring idiom.  She got absolutely none of this.  But, darling girl that she is, when she learned that I was having tummy trouble she said "that's killing me...that makes 100 million and one."

What a sweetheart! :)

And it begins...

So I will keep one blog post to chronicle this mess, rather that clutter the blog with hourly updates.

I took a vicodin, anticipating that (1) this is gonna be uncomfortable, and (2) I'm gonna be nauseous and probably not be able to keep anything down later, so I better get this in my system.

About to ingest the first 8 ounces of this rocket fuel.  Then another 8 ounces every 20 minutes.  Gah...awful sounding already.

I did something like this many years ago in college -- 1.5 oz shots of beer every minute for 100 minutes.  Followed up by shots of vodka for those left standing, with one shot per minute.    It did not end well.  At all.  In fact 25 years later I still don't like vodka.  Gin, being the only thing I didn't drink in college, is now the only thing I like.  Well, that and scotch.

As much as I would like a robust discussion of fine spirits to serve as a diversion / procrastination tool, I cannot tarry any longer.   Bottoms up, people.  Fire torpedo one.  6:05PM.

Well, the good news is that stuff is pretty tasteless.  Firing torpedo two now.  6:27PM.

6:51.  Firing torpedo three.   So far, only issue is mild headache from NOT HAVING EATEN IN 24 HOURS.   How did Gandhi do this, I wonder?  :)

7:05, about to fire torpedo four.  Getting full.  Of water.  Starting to be reminded of those stories about how you can't drink a gallon of milk, or a gallon of apple juice, or crush an egg in your hand...or something like that.  In any case...glug glug glug.  Here we go.

7:10.  First rumblings.  Need to pee like a racehorse.  Eye on the prize here...only four more glasses to go and I have 15 minutes respite before I have to chug another one.  I have a feeling the fun is about to start, though...

7:26.  Torpedo five swallowed.  Feeling a little queasy although I'm not sure if I'm waterlogged or if it's the medicine or just the vicodin-on-an-empty-stomach.  Two mammoth belches have emerged.  It is time to venture into the bathroom.  By the way...sure looks like a hell of a lot of water left in that big pitcher...

7:52.  About to swallow torpedo six.  Am going to conduct measuring experiment as I'm sure there's gotta be more than 64 ounces between what I've swallowed and what is left.  Stuff has started to work, I'll leave it at that.  Comment of my good friend Scott noted.  Glad you're out there, pal.  Between this and the NFL draft I'm not sure what's more thrilling to follow in real time...  ;)

7:56.  Experiment confirms mis-measurement and an extra 8 oz in the pitcher.  While this might seem inconsequential, nausea is setting in and I could barely get down that last slug of water.  I doubt I will be able to do the extra 8 oz.

8:12.  About to fire down torpedo seven.  Nausea is becoming an issue and there's too much left.  No way I'm ingesting more than the 64 oz...which is probably the breaking point even moreso than the amount of the colon-blow that's dissolved in the water.  However, if I only get about 85% of that crap in me (no pun intended) it may just have to do.

8:40.  No way I'm finishing the rest of this stuff.  There were about 10 cups, not 8, in the jug and I'm only drinking 7, so I will only have 70% of it in me...which means I'll only have taken 10 days worth of laxative in two hours instead of 14.  This will have to suffice.   If I have another teaspoon I'm gonna throw up and that will do nobody any good whatsoever.

Ugh.

As for the impact of the digested agent...it has been almost non-existent to date.  The waiting game is gonna be a blast, I'm sure.

"You're putting WHAT, WHERE?" Also, another CureTalk panel today.

Hello folks.

Those easily offended may want to skip this one.  With that in mind, the non-offensive part is that I'm participating in another CureTalk panel today with some familiar panelists and Dr. Orlowski from MD Anderson.  We have some good questions teed up.  The one I am most interested in asking relates to the IMF's Black Swan initiative and whether this is tantamount to an admission on the part of the IMF that some people are being cured of Myeloma today.

Okay, crossing the rubicon into PG-13 territory.  What can I say, if I can't laugh about this stuff, I'd cry so I choose laughter.

While the "what the hell is happening to me" stage of dysentery was cured by the Vegas trip, the low-grade "am I ever going to have a solid bowel movement again" stage continues unabated.  When I expressed to the GI specialist, Dr. LJ, that I simply had to get things under control for the Vegas trip, he doubled me up on Immodium and gave me a powder -- cholesterium -- which supposedly helps and also plays some role in cholesterol reduction (which is a good thing for me as I have high cholesterol).  The physician's assistant JA in Arkansas suggested I try this, but when I brought it up to my primary care physician Dr. PZ, he said it was an ineffective way of reducing cholesterol and I should go back on the Lipitor -- the prescription to which indirectly led to my diagnosis more than four years ago.  So I may return to that drug -- I've been giving my liver a respite but the cholesterol has crept back up into the 230 range, mostly because of high triglycerides, so I'll need to restart the Lipitor soon.

Anyhow, when I saw Dr. LJ he prescribed the cholesterium and I'm not sure whether it was that or the doubling up of Immodium but they helped somewhat.  I eased off them, and the diarrhea returned (though not as horrifically as it was pre-Vegas).  So there is still a problem.

To determine exactly what the problem is....requires an upper and lower endoscopy.  I swallow one camera, and the other one goes in another entrance.   Hence the title of this post.  Fortunately, I'm going to be unconscious for this.  As long as they don't leave anything behind and I'm unaware, I'll be fine.  I have heard from someone, however, that the recovery room consists primarily of older men groaning about being bloated followed by deafening flatulence.  I hope that I will quickly recover from the effects of the anaesthesia so that my time in said recovery room will be limited.  Sounds like a real slice of Heaven.

But it is not this, dear readers, that has me concerned.  It is the next 24 hours.   Even though there can't be much in my intestines to being with, I've gotta go through an industrial strength car wash.

That means (1) I am not allowed to eat anything for the next 24 hours, and can drink only coffee, tea and clear liquids; and (2) I am expected to ingest AN ENTIRE CANNISTER OF THIS STUFF OVER A TWO HOUR PERIOD VIA 8 OZ. GLASSES OF LIQUID EVERY 20 MINUTES.

Note the fine print there: 14 doses.  I have to have FOURTEEN DOSES in a two hour period.   By the way, this photo doesn't do justice to the size of the jar -- it's about six inches tall.

Dr. LJ's printed instructions inform me that the forced ingestion of this much in rapid fashion will be followed by at a minimum two to three hours (or more) of crippling nausea and diarrhea.

I am reminded -- as anybody under 50 reading this surely will be -- of the following.

Once again, the bottle I am taking is larger than the one Jim Carrey dispenses in this clip.

For men UNDER 50 (the same ones laughing at the clip, most likely) -- ask not for whom the bell tolls.  You'll all need to get this done soon enough.  I'm just getting mine out of the way a few years early.

And with that...I'm off to starve myself.  

And the cure for horrific dysentery is...VEGAS?!?

I have just returned from a weekend in Vegas for the Final Four.  This trip is a recurring tradition with some friends and was planned long ago, so even though I felt pretty crummy the past couple of weeks, I was determined to go.

The trouble began about ten days ago.  I have always had GI issues while on Velcade, but I'd taken a couple of weeks off in preparation for the Bone Marrow Biopsy that I needed to have done in Arkansas (Velcade monkeys with the bone marrow and if it is in the system it can lead to inaccuracies in the testing).

I had not yet resumed the Velcade because I was taking the family away for a couple of days before Easter and I didn't want to experience the GI issues (pain, gastroparesis -- difficulty digesting, etc.) while we were all away.

Unfortunately, we went to dinner in San Diego at a Mexican place and I felt immediately awful.  Nausea, vomiting, and severe diarrhea.

The severe diarrhea persisted -- worse than usual.

I was (and remain) concerned that all this treatment has done damage to my innards.  I was in so much pain over the Easter weekend that I thought I was going to need to go to the ER for pain management and to find out what was wrong with me.  I knew it couldn't be something really bad like stomach cancer because my PET two weeks ago was clean.  I called my primary care physician's office over the weekend and they suggested in admit myself to the ER; I got ahold of BB's physicians' assistant and he said I needed to get an upper and lower endoscopy; I got ahold of my local oncologists's office and they said to just take a lot of pain killers and deal with it on Monday (this would have been a week ago yesterday).

So I took the pain killers, waited it out, and thought about what it might be.

Since I had recently been on antibiotics, I thought it might be C Diff, a nasty bacteria that forms in the gut if there isn't enough "good bacteria" to offset it.  Myeloma patients can get this and it's very enervating and potentially pretty bad news.   It could also be Crohn's Disease, which is related to immune system problems.  It could be other things as well.

I got a referral to a gastro enterologist and made that appointment for last Thursday.  Meanwhile I got in to see my primary care doctor on Tuesday AM.  He thought it was treatment related, might be C Diff, could be Crohn's Disease but thought it was unlikely because "you would look sicker than you do."  So...we ran a bunch of tests.  Not the fun kind.   The kind that you take at home and then bring back and that require gloves and vials of goop and basically it's a debasing experience I wouldn't wish on anybody.  Blech.

Anyhow, I then went to see the gastroenterologist, who was a remarkable guy named Dr. LJ who actually knew of BB because years ago he helped invent a flow cytometry test that was used by BB who was, at the time, at MD Anderson.  It's a small world after all, as my employer points out.

The bottom (no pun intended) line is this:  (1) tests eventually came back negative for everything including C Diff, (2) I'm getting the endoscopy on the 26th, and (3) SHOCKINGLY ENOUGH...even though the horrible GI problems persisted for several more days, I went to Vegas and came back and now, I feel...fine.

Hruh?

My close friends have known me to make the observation:  "Go to Vegas healthy, come back sick...go to Vegas sick, come back dead."  To this I might have to add..."Go to Vegas with intestinal problems...come back cured."

It's as though all the germs saw the environs of smoke, booze, gambling, etc. and panicked, fleeing my body.

I'm thinking there's a business here...I remember vaguely in my youth my grandmother went on some health tour where they brought a bunch of tourists to squat in a Uranium mine someplace...either that or to see a statue of the Virgin weeping in some grotto someplace.  And the tour guide charged money.  I could organize tours of Vegas casinos for people with bad gas...other than the fact that I would want to keep a wide berth from the rest of the group, it could be a pretty good racket.

Hmm...

The pain of new BMBs, and the pain of GI issues...

Hello folks.  I hope this finds you on the end of a happy holiday week, whether or you celebrate Easter, Passover, the Great Pumpkin or something else altogether.

Two topics for today's post.

First, fellow traveler Suzierose, who I am obligated to point out for context's sake is not a particular fan on BB or MIRT or UAMS' approach, wrote me with the following question / observation which I think is a good one for all patients to consider:

Hey Nick!

suzierose here.

Gotta a question for you. 

You mentioned how painful the last BMA was for you, mine was too.  And it remained sore for awhile.  So I am wondering if they withdrew more aspirate in a SINGLE draw then they generally do for a BMA. We both know it is the aspirate that hurts like hell.

The reason I think this is because while reading about MFC I learned that one reason it has not been used as a standard is due to the discrepancy in enumeration of plasma cells from 2 samples.  As you know, there are typically hot spots in the BM.  So if they take 2 aspirates it is likely that creates the discrepancy, in PC count, as the 2nd sample (typically the one used for cytometry) is more 'dilute'.  Which would account for the enumeration difference when they stain the first PC sample and then use the second PC sample for  flow cytometry.

In contrast, if they take one large volume aspirate the concentation of cells will likely be the same & minimize any such discrepancy.

So, the next time you speak to Barlogie, could you ask this question:

Did they withdraw one large aspirate sample as opposed to 2 in order to do the MFC?

I suspect this is what results in our extreme discomfort.  I know one thing, my last BMA was way more painful and it lasted for awhile. Unlike the other BMA's where it was painful during the aspirate but it dissipated quickly.

Just wondering.

suzierose

While we may disagree on a few things, Suzierose is exceptionally knowledgeable about this disease and this raises a number of interesting points.

First, by way of background, MFC in the above refers to multi-flow cytometry which is an advanced methods of analyzing bone marrow as might be used, for example, in Arkansas' test for residual disease, which I just had done.  PC count is plasma cell count -- plasma cells are one of the bases of the immune system and it is these that run amok with Myeloma.

So to answer, a couple of comments:


* My understanding is they do take more bone marrow out per bunch to accommodate the additional tests.  BB used to do two punches per test -- one for the normal cytometry / BMB and one for special gene array tests.  In UAMS' protocol, gene arrays are useful for diagnosis, establishing a detailed picture of baseline physiology, measuring the impact of initial treatment, and measuring the outcome of treatment (though once one is in remission, definitionally the gene arrays look normal).   Because I've been in remission, and because I'd just as soon reduce the number of holes in my backside, I generally avoid gene arrays.  As I was opting out of this most recent one, the BM nurse told me that they do it all with one punch and just take more material now.  I still declined it, but they only did one punch for the MRD test (MFC) as well.  The single sample was, I believe, about 3cm so that's a pretty big hole in the bone.  This certainly could cause the extra pain.  In my case, I believe the Zometa also had something to do with it -- the woman said she really had to put a lot of elbow grease into smashing the tool into my hip.  Sounds painful just typing about it!

* I don't have my labs in front of my but there is overlap in the results of the test -- they can get a PC count from the biopsy, or from the aspirate, and in this case I think there was insufficient cellularity in my biopsy to perform the test.

The second topic, which I'll tackle tomorrow since work calls, is the lousy GI distress in which I found myself.  Since I recently had a negative PET, I'm not concerned about stomach or colon cancer -- and I'm not concerned about infection, either.  But I am worried that all this treatment has caused IBS or worse yet something like Crohn's disease.  So I'm afraid an endoscopy is in my near future.  More on this tomorrow.

With that in mind, sweet dreams.  : \

Test results: good, but staying the course

I'm sure you have been waiting with bated breath for the update here...heh heh.  :)

Seriously, though, particularly for a couple of family members I'm sorry I didn't post an update yet.  Needed a little time to relax after four days of testing and long flights in both directions.  It's more work than it sounds like to walk around a hospital, going from tube to tube (MRI, PET/CT, etc.) and getting poked and prodded.

Here are the key results:

* MRI shows the same damn pits in my spine plus 1 cm lesion in my pelvis which I had not noted on previous MRIs.  Except this is the site from which the fine needle aspiration was done six months ago, so I suppose I should have recognized that much, at least.  In any case, that FNA was negative for myeloma so it is BB's opinion that these pits are "shadows" of former activity.  Nonetheless, he wants to see me continue on therapy until they have resolved.

* PET is negative (that's good) with essentially stable uptake of the sugary goop that I have to drink.  We could call that FDG-avidity or SUV (something uptake value, not sports utility vehicle) but Uptake of Sugary Goop will do for now.  In any case, this metric was 1.6 before in one area of my spine and was 1.5 on this test -- anything in this range is not considered an issue.  My original PET had an uptake of 2.4, and after a week of therapy during which all active focal lesions were suppressed, it went down to 2.2.   So anything under 2.0 is fine and dandy, I think, although these metrics are really more valuable in relation to each other, I think.   These numbers refer to metabolic activity -- the degree to which sugar-starved cells go nuts for the sugar.  So it's hard to directly relate them to cancer, per se, other than by noting areas which are abnormally active given baseline numbers.   When I was originally diagnosed, BB's right-hand BJ told me that my cells were doing the tango but not yet doing the Watusi.  This analogy is the qualitative equivalent of all these 2.4, 2.2, etc. numbers.  In any case, the dance hall has been closed down for some time now and the continued stability of the PET is a good confirmatory sign.

* Standard bone marrow biopsy: negative for plasma cell myeloma (whooppee!!) and negative for myelodysplasia (whooppee again!).  I don't have the results right in front of me but it also occurred to me that the MRI showed more homogenous marrow than before, which I think is good.  That means the recovery is more widespread.   I should add, though, that unlike previous BMBs, this one hurt like the dickens when I came out of my propofol-fog.  They had to give me 25mg of Fentanyl (superstrong synthetic morphine) and that barely took the edge off it.  Several days later, it's still sore.   As this was unusual, I asked the nurse in the recovery room to summon the nurse who did the work (a rather...well, let's say densely-proportioned woman) so I could find out what the issue was.  She told me that I had exceptionally strong bones and she had to use a particular amount of elbow grease to hammer the instrument into my hip.  Ouch.  I can thank the Zometa (the bone strengthening agent which I received several times via infusion) for that, I suppose.  But I wish it had done an effective job of helping the stupid pits in my spine fell in instead of just making my hip bone resistant to the hammer and chisel that they used on me!

* Back to blood for moment, and keeping with the theme of recovery: blood work showed rising levels of IgA and IgM (these are immunoglobulins -- cells in the immune system -- that help fight off infection) as well as IgG.  IgG was where my problems lay...the normal immunoglobulins were being buried beneath a tidal wave of monoclonal protein (malfunctioning IgG cells).   The Revlimid that I was on intentionally suppressed these cells in order to ensure there was minimal opportunity for the cancer to multiply.  Now that I'm off Revlimid, the immune system is beginning to return to normal operations.  It's still suppressed, but it's coming back to normal levels and that's a good thing as well.  At this rate, in another six months I can start thinking about getting reimmunized and also weaning myself off Acyclovir, the pill that keeps away the virus responsible for Shingles.  I've heard it's also given out like candy to the casts of all these MTV reality shows since it also wards off other manifestations of that same virus (cough Herpes cough cough).

* Most intriguingly, a new test for Minimal Residual Disease was performed.  This requires its own post with background information in order for it to make sense to y'all (have I been in Arkansas too long?)    Rather than make you wait for me to explain it, though, I'll just say that the test is far more sensitive than any other tests they have done.  One can be in complete remission according to convention tests (including Immunofixation and bone marrow) and still have 1 in 10,000 cancer cells.  The new test is accurate to up to 1 in 6,000,000 cells.   The bone marrow pull that was done for mine contained a hair under 1.5 mil cells.  The lowest designation is "<.01% myeloma cells" (they don't do "zero" simply because the pathologist wants to cover his booty).   Happily, I received this designation.  That means out of the 1.5 mil cells, I had less than 150 (and probably 0) myeloma cells.  This is enough, per BB's dictation, to qualify me for the "strictest definition of complete remission" which is great news!

* Now, to temper that...this is a new test and while they've been collecting data like mad over the last few months with it, BB told me that it's a nightmare to try to analyze it and they have to get things in order so that they can process it and determine exactly how significant it is.  Do people that lose remission ever have MRD of 0?  If they do, then it's a temporary metric.  On the other hand, if those with an MRD of 0 have experienced no recurrence, then it could be a more significant marker.  We wait and see, but for now, it's great.

The upshot: those pits in my spine are still a disturbing sign, and coupled with the lower-than-previously-thought cure fraction (recall a few posts ago) we need to keep up the assault so any remaining myeloma cells in those pits die off and those lesions fully resolve.  However, BB felt good enough about the tests in general (as well as the normal expression of the MYC gene from six months ago) that he was comfortable reducing my weekly Velcade from 1.5mg/m2 to 1.0mg/m2, which is the "normal" dose.  This should hopefully help with some of the GI pain, allopecia and other side effects.

On that topic, my fellow traveler JH happened to be in Little Rock and I had a great dinner with him and his father, who is a physician with an emphasis in hair loss (in addition to being a terrific guy).  He was kind enough to take a peek at the crown of my head and we collectively concluded that (1) I'm never going band, (2) I'm likely experience a normal pattern of hair thinning, and (3) it's possible that the Velcade has accelerated this.  Since the hair thickened when I elected to stop Velcade for a month, I think #3 is pretty likely.  We'll see how well it responds to a reduction in dose.

One last random comment that may be of interest to other patients.  The 80-gene test (or Gene Array) that is done on bone marrow at UAMS has many different characteristics that combine to form different "subtypes" of Myeloma.  There are maybe two dozen of these that help define the particular manifestation of MM in a given patient.  For example, two of my characteristics were hyperdiploid (this is a good sign...it means there are too many chromosomes instead of too few) and "Proliferation Subtype" (this is a bad sign, and means what we would surmise it does).  The high MYC gene is or was probably one of the contributors to this.

Anyhow, when looking simply at the proliferation index (a metric of this proliferation factor) the cut off for high risk disease versus low risk is 10.0.   Note this is not the sole factor contributing to high risk disease.   At any rate, when I showed up, mine was close to 10 but below it (I forget the precise number but it was >1 and <10 6.5="" after="" class="goog-spellcheck-word" hours="" let="" nbsp="" s="" say="" so="" span="" style="background-attachment: initial; background-clip: initial; background-color: yellow; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial;">Velcade
administration, it crept up to 10.3 or so.   Not good.   But a week later after a test dose of Melphalan, it was -6.0, and it stayed low in subsequent tests.   So Bart thought it was interesting that my own particular case showed an increase in this followed by big-time suppression and he asked his statistician to consider looking at this trend as a prognostic factor in other patients.
There's much more to report but I've gotta get to work here -- so I'll provide an additional update in the coming days.

Bottom line: yours truly is doing well, continuing therapy, and thankful for my clinical and therapeutic team as well as all of you!

Stupid lesions have not yet resolved. : (

I am currently awaiting my bone marrow procedures, which will include three pulls, I think -- the standard bone marrow, the gene array (which I may yet veto) and a new test for Minimal Residual Disease.

Since I make them knock me out for this with propofol (the Michael Jackson sleep drug) I was getting a pre-op consult with one of the physician assistants here.  He was kind enough to pull up my MRI -- they have new software which allows you to scroll through your body bit by bit -- it was fascinating to see!

Less fascinating was the tech's write-up, that indicated "stable small lesions are observed in the thoracic spine and pelvis."  I'd never seen one in the pelvis before -- that was troublesome.  However since it's characterized as "stable" it must have been there before.  Perhaps just not on the last MRI for some reason?  I didn't recognize the name of the tech so it may have been somebody new...generally they like to have the same tech read the scan to ensure it's done consistently but it's now been five years of coming here, just about, and personnel change.

I saw BB at dinner last night and he noted that he has new talent coming in...he's lost some doctors who have moved on to private practice but he's retained his research specialist and one of his former doctors who moved on to work for doctor GT in Utah is coming back here, which is nice.  I mused that he's a bit like a Head Coach for a top football team whose assistant coaches are constantly being poached or lured away by other jobs.  Talent recruitment and retention is a big part of his job.

At any rate, there will be more to review and discuss about these persistent lesions tomorrow.  It does mean there's probably no end in sight for the Velcade.  And depending on what the MRD test shows, I'll either view it as an inconvenience or a critical necessity.  Or perhaps I might even need to switch to new drugs if there is residual disease.

Greetings from Little Rock

Boy, is it cold here...and rainy.  I'm currently hunkered down in the 8th floor of the cancer center, which is where the entire Myeloma team moved about six or eight months ago.  They've got a couple of computers here so I thought I would avail myself of the Internet connection and update you folks.

There's not that much to report just yet, other than the blood draw went off without a hitch for once (this means they knew to expect me on the 4th floor at the infusion center rather than at the blood lab on the 1st floor).  I had found the little topical freezing spray that my local oncology nurse had given me and a little spritz of that led to a painless port access.  I came back an hour later for a lab printout and everything that's back fromt he labs looks good -- the cancer markers will take another day or so but I'm anticipating everything will be consistent with complete remission.

The PET machine was out of service so my 9:30AM PET scan has been rescheduled.  They gave me the choice of 5:30PM today or 5AM tomorrow morning.  Astute readers will likely guess that I chose the former option.  Still being on West Coast time, even this morning's 7AM wakeup call seemed brutally early.  4AM is not in the cards.

I briefly visited with the irrepressible BJ, BB's right hand.  The visit was enough to answer a couple of questions I had about a new test, the Minimal Residual Disease test which is being done in conjunction with a group in Salamanca, Spain.

The link below addresses a study wherein this test was used to identify those "high risk" myeloma patients that lost remission versus those who did not.  I've not read this carefully enough to paraphrase it here but perhaps I'll do so at some point soon.

http://bloodjournal.hematologylibrary.org/content/119/3/687.long

The second link talks about which of the two tests is more accurate, and what a typical measurement is.  The lowest measure was .001%, or 1 cancer cell in 100000.  The median was 14 cancer cells in 100000 and the high was 1100 cancer cells in 100000.  Notably, everybody in the study was in complete remission.  So some of us with complete remission could still have 1 cancer cell in 1000 cells.

http://www.haematologica.org/content/90/10/1365.short

In this study, they also establish the threshold of "minimal residual disease" being 10 cancer cells in 100000 (.01% cancer cells).  It seems like a subjective threshold, clearly, but it does serve a comparative purpose for test sensitivity.

I was told by BJ that the MRD test at MIRT is sensitive enough to detect one cancer cell in 6,000,000.  It's a bone marrow test using some type of flow cytometry but I recall BB telling me something about an "8-way color array" (this is almost certainly wrong...consider it a placeholder, perhaps referring to the "multiparameter flow cytometry" that the first link above mentions).  In any event, I shall be paying keen attention to the results of that test.

I'm off to the next appointment.  More when events merit and time permits.

Part 2 of the statistical update

I'm so sorry, folks, to be behind.  I've received a number of terrific emails from the newly diagnosed to long-time fellow travelers and I want to thank all of you for writing to me.  I'm particularly thankful, always, to hear from patients who have found this blog to be helpful to them as the lead their own fight against this disease.   You inspire me and I'm thankful to play any part whatsoever in your battle.

So...where was I...

Ah yes, the lack of a plateau.

I sent BB a lengthy email explaining my concerns, and the basic math that I'd done on the back of an envelope to arrive at somewhere around 50-60% cure versus 87%.   He commented quickly in an email that the 87% figure had been updated as a result of longer follow-up, and that this is expected, but that the Blood article (from which I presented figures below) indicated that "cure is still there."

It's a question of what percent.

He told me, in his playful way that has a serious undercurrent, that I was "doing a lot of arithmetic that was not really getting anywhere" and that I was a bit of a "pain in the ass."  :)    I know this is an endearing term from him so I relish it.

It is a huge testament to this doctor that, despite not having an appointment with me scheduled, he called me and spent 45 minutes not just discussing this data but also forwarding me articles, both published and unpublished, to help educate me.

He agrees that the final number will be somewhere better than TT2-Thal, but not the 87% that looked like could be the case.   The numbers for TT4, which include more extensive maintenance than TT3 (the beginning of TT3 used only one year of Velcade, for example), are better than TT3, so the current cohort can be expected to do marginally better.  BB has never in his career seen a decline in efficacy as therapies advance -- recall that in all the studies for pediatric leukemia as well as the TT regimens, the curves move up the Y axis towards the top of the graph as they advance.

The real answer is, we won't know until 10 years out where the final curve is.  He also reminded me, as did a couple of blog followers, that these curves include mortality from other causes so you have to take those out -- doing so flattens the lines significantly, though they still don't reach a plateau yet.

I was casting about for something that would give me slightly better news on this, and BB was kind enough to tell me that they have compared PET scans after the commencement of treatment with treatment outcome.  Before treatment begins, a PET scan is performed to identify the number and intensity of what are called "FDG-avid lesions" -- thriving cancer tumors.  Then, after the first week of treatment, another PET scan is performed to see the impact of the treatment on patient biology.  These same tests are done with MRIs, as well.

I've got some data to share, but presenting it is going to take some time, so I'll get back to that tomorrow.  I will say that the news is slightly more optimistic than the 60% figure.  Not 87%, but something.  :)

Lies, Damn Lies and Statistics.

A targeted Google search (perhaps one of this blog's contents would do the same, of course) reveals that I already used this header back in 2009, and yet that turn of phrase (whether from Benjamin Disraeli or Mark Twain) remains meaningful.

Before I jump in, though, let me say that if anybody missed yesterday's Curetalk broadcast and wants to listen to it, the link is right here.   It's four panelists with Myeloma, myself included, answering questions from patients about various aspects of treatment and side effects.

Now...to the matter at hand.

I've been contemplating for a few days how to address this.  It's fairly significant news and it's not good.   It's not about me, personally.  I remain in complete remission.  But it is sobering because of what it might mean for me down the road.

The upshot is this: we now have a longer follow-up period of data from UAMS on the survival curves of patients treated by the TT3 regimen.  And while the survival curves are still very impressive and while many patients are being cured, the cure rate is not what we thought it was.

Long time readers who are into these types of details will likely remember two curves that show the percent of low-risk patients who have achieved complete remission that have maintained this remission.  Or put another way, it shows the percent of patients that lose remission.

Figure 1

The blue line shows low risk patients in TT3 that have kept remission or near complete remission (this includes those patients who have a very low "MGUS" type residual level of the disease -- recall that MGUS exists in over 3% of the general population over 50 and is oftentimes meaningless).  The red line shows low risk patients in TT2, which used a different protocol and didn't have the advantage of Revlimid, Velcade or even Thalidomide in one of the arms.

You can see that after six years, the red line of TT2 has "flattened out" at around 45%.  This type of flattening out is the core principal of Total Therapy.  It was first observed in treating childhood leukemia (ALL) at St. Jude's over a period of several decades.

To explain the significant of this chart, I'm going to take a step back historically.

Figure 2

So you can see from Figure 2 here (which are the trials done at St. Jude) that a flat line exists -- that's cure.  If you get to the flat line in the curve, the disease does not return.  In the simplest terms, you can see from the yellow line (studies 1 to 4) in figure 2, after 15 years, nobody lost remission.  And really, after 5, very few people did.   Over time, the percentage cured increased and the therapies became more effective.  By the time of studies 11 and 12, about 70% of people were being cured.  By the time of study 15, the projection was that around 90% of people were being cured.  All good stuff for a disease that used to be considered incurable.

On the basis of this work, TT for Myeloma was pursued.  Over the years, it, too, has established curves that look similar to the progress of ALL.

Figure 3

So here, you can see the progress made from TT1 (which looks like a cure rate of about 17.5%) to TT2 with thalidomide and TT3.

Now, along the way UAMS developed a means of testing bone marrow to assess whether or not one has "high" or "low" risk.  About 85% of people have low risk, 15% have high risk.  The graphs in figure 3 include all patients.  But here in this next chart, we see the results of TT3 on those with high risk (red) versus low risk (blue) disease:

Figure 4

You can see the folks who are unfortunate enough to have high risk disease are not able to remain in remission very long.  While a large percentage of the people with low risk disease DO remain in remission for a long period of time.

All of this information was published in a document called The Myth of Incurability which was presented by Arkansas in late 2007 or early 2008, I believe, shortly before I was diagnosed.  At the time, they were about four years into the TT3 protocol.

I'm beginning to feel like this guy.

Bear with me, dear readers.

So far, so good, right?  I went and got tested, I'm in the blue group, I went through TT4 which was like TT3 but less toxic because TT3 was believed to be so effective that it couldn't be improved upon.

All's well.

A couple of years later (fall 2009, just as I was finishing my transplants) a new document was published and presented.  In this one, called Modeling for the Cure, we saw even better outcomes.

More information was available from the TT3 trial.  Figure 4, shown above, was updated.  And it was more fantastic news!

Figure 5

Notice here, the line in blue is FLAT at around 4 years.

The poor high risk folks continue to lose remission, while the low-risk cohort has plateaued.

This, my friends, is the chart that I have followed meticulously for the past three years.  I achieved complete remission in September 2009.  I'm approaching four years and all looks good (save for the lingering pits in the spine which I keep hoping will go away).  In fact, temporally speaking I have reached the plateau in this graph.  I'm cured.

Awesome.

On the basis of this data, UAMS used some standard statistical tools to forecast the "cure fraction" of these patients.

Figure 6

Here, the green line shows low-risk TT3 patients that have achieved CR or near-CR.  That's not the whole group.  But I made that group, and there looks like a plateau, again, at four years.  It hasn't been absolutely reached here, but it certainly looks pretty darn close and according to these common statistic tools, 87.6% of patients can expect to be cured.  The P statistic is a measure of "confidence" in the forecast -- a P of .0001 is very, very good.  In other words, this 87.6% is, statistically speaking, a number in which we can place a lot of confidence.

That is, if every curve behaves as they have in the past.

Meanwhile, more time goes by, and the numbers continue to look good, leading to the publication in a periodical called Leukemia in 2012 (love these periodical names: Leukemia, Blood, etc.).  In this publication, which can be found here, the numbers look great, still, but the goalposts have moved just a smidge.

Figure 7

Now I've got some color issues so I frankly couldn't even tell you what line to look at by color, but it's the one on the top.  That's TT3.  "Landmark" refers to four years after achieving CR -- that's the point where the plateau was observed in Figure 6, above.  Essentially the assumption is made that between treatment related mortality and disease recurrence, that stuff gets out of the way in the first four years according to previous work, so we can now measure from that point.

Some salient observations:

* It takes a long time to see where the TT1 plateau is reached.  It's not until around 11.5 years after the four year mark, or 15 years from the onset of CR.  That's pretty close to what we observed in Figure 3, above, so that makes sense.

* TT2 plus thal appears to have reached a plateau a bit earlier and much higher -- it appears to be leveling off at the 6 years post-landmark point.  It was a little early to see this on Figure 2 but Figure 2's data shows the beginning of it tapering off, so that comports well with this chart.

* TT3 looks very good...94% of people are still estimated.  So the 87.6% number from figure 6 isn't quite as good...it's 94% of that figure, or 82%.  In other words, 82% of low-risk patients achieving CR under TT3 are cured.  And since I've made it to the landmark, it's 94% chance that I'm cured.

According to this data.

Now the other shoe drops.   Here's where I would be tempted to end this post and make it a cliff-hanger, but I won't be doing that.  :)

A fellow patient, blogger and friend of mine, Gary Petersen (who was also on the Curetalk panel with me), was recently given new survival figures from UAMS.  And they are very good!  Take a look at this, for example:

Figure 8

So here, you can see that after 9 years of enrollment in TT3, including both high and low risk patients, and including both those and have achieved remission and not, about 70% of people are still alive, and about 55% or so have not seen their disease progress.  That means about 79% of people that are still alive have not relapsed.  Bear in mind, this includes death from ALL causes, not just Myeloma.  The National Cancer Institutes data is only 19.6% alive after 9 years -- so UAMS is more than 3X that good!   All great.

So I excitedly reached out to my friend Gary Petersen and said "I bet the numbers are even more impressive when you split out low risk from high risk."

Here's where things get not so great.

Figure 9

This shows overall survival with 9 years of data, now.  Again, this is all deaths, not just myeloma.  So both the curves fall off faster than would be the case if we just looked at Myeloma.   Nonetheless, you see a plateau for the high risk patients, but it's a straight line down for low-risk patients.  No plateau.

The next chart shows progression-free survival -- meaning no disease recurrence.  We expect this to be lower numbers than overall survival, obviously, since some people might have experienced a loss of remission but not have died yet.

Figure 10

Here, again, the red line of high risk patients plateaus.  But there is no plateau in the blue line.   I repeat...no plateau.  In the immortal words of Scooby Doo...

RUH ROH, RAGGY.

Or, in English...sh*t.

Which brings us to the next piece of data...for those who achieved complete remission, what percent have maintained that remission?   Recall (or simply use the "page up" or scroll bar here) in figure 1, for ALL patients (including high risk) this number looked to be in the high 80s and looked headed for plateau.  In figure 4 we hadn't seen a plateau yet but the number was in the high 80s.  In figure 5, we saw a plateau at four years that pointed to 90% of people not losing remission -- being cured.  This led to figure 6, which showed with a high degree of confidence that there was a plateau at 87.6% of people being cured.  And figure 7, with a couple more years of data, supported something close to this (82% maybe instead of 87.6%, but still 82%).

But now...

Figure 11

There's no plateau at all.   What looked like a plateau from about years 3-5 was a false plateau.  Remission losses resume again shortly thereafter.  In fact, six years after complete response shows only 76% of people are still in remission and it's ticking down at a steady rate.  You can see where it looks like it's going to flatten off...only to resume again.  I've never seen anything like it before in 20+ years of looking at data for a living.

Regardless, the medical import of this is fairly clear: we have moved beyond "Ruh Roh, Raggy" and directly into "ZOINKS!!!" territory.

ZOINKS!

(Interestinlgy enough, when I searched the web for this pic, it found it, ON MY OWN BLOG, haha...must've used it before somewhere).  Anyhow, it is fitting.

Zoinks, indeed.

Naturally, this updated statistical news went over a bit like a turd in the punchbowl at my prospective "victory over Myeloma" banquet.  

So, what can we assess from all this?

Well, we know that the outcome isn't gonna be any worse than TT2 with Thal was, and that stands at an overall cure rate of 45% for low-risk Myeloma.

While TT3 remission loss appears to be lower in the interim, we might end up at the same end state.

Which leads to the potentially REMARKABLE counter-intuitive conclusion that the new drugs in which everybody holds such promise -- Velcade and Revlimid -- might not be curing anybody whatsoever, and the cure could simply be coming from PACE and Melphalan, same as 10 years ago, and all the novel drugs do it keep remission longer.

Ugh.

Now, that's the worst case scenario.  Bear in mind, also, if somebody falls in a manhole or is stuck by a meteor (no offense to our Russian friends) they are included.  So the curve should be flatter.  Maybe the cure rate is 55%?

55%, for those playing the home version of the game, is not close to 82%.

Moreover, since the remission loss appears to kick in earnestly after about 5 years after CR (1 year from "benchmark") it's not as though I can say "well, I've made it this far, so I'm no longer at 55%, I'm at some higher number."

I'm thinking I'm looking at more like 60%.  That's not based on statistics.  That's based on my gut.  (Note: subsequent research will change this somewhat -- I'm reporting "real time" as it were from when I got this news).

Now, if I started treatment and somebody said "there's a 60% chance you will be cured" I'da been happy about it.

But I've gotten this far, and endured this much, and was anticipating a high number here...closer to 98% at this point than 60%.  The goalposts have moved.   Hawkeye Pierce was expected to leave Korea, and the mission county just went up on him.

I remember Hawkeye being more upset than this a lot of times but couldn't find a picture of him sobbing or screaming.  Trust me, I feel more frustrated than wistful.

So what does this mean?  What changes?

Nothing, really, other than I'll probably opt for continued Velcade even if it costs me my head of hair.

I'll fight.  I'll probably win.  I mean, what else am I gonna do at this point, give in to this sh*tty disease and die?

No, I will dig in and prevail.

But this sucks.

A preview of Part 2 to come early next week:  I've spoken with BB to get his thoughts on this and dug into some additional data about my own particular biology that augurs well.  It's not quite as bad an ending as the worst case from this blog entry.  It's still not 98%, though, which is where I started out last week.

Dammit.