Wednesday, December 7, 2011

In memoriam...Bruce Bertsche

I have a few updates to post in the next few days: gastroenteritis / gastritis, an interesting debate on curability versus control, some studies on the linkage of Revlimid with second cancers (or the lack thereof), etc.

But first, I want to talk about my friend Bruce.  It's taken me a few days before I was ready to say anything, so sorry for the delay in posts.

I met Bruce and his wonderful wife Jan during my treatment -- they came to Arkansas during the middle of my treatment after reading this blog and other discussions with friends and medical professionals.  We hit it off immediately.

Bruce was dealt a far worse hand than I.  His disease was very difficult to detect -- his Myeloma did not appear in his blood, or in light chain analysis.  It could only be found on imaging and via bone marrow biopsies.

I don't recall the extent to which Bruce had been treated before arriving in Arkansas, but he had already suffered terrible bone involvement and lost partial sight from the disease.  He was diagnosed with a high risk variant, for which outcomes are indeed dire.  Most people elsewhere are given a year to 18 months.   Bruce, as it happens, survived about twice that long.  During his treatment, the disease left the blood system and metastacized through his body.  He dealt with it spreading to his liver.  He dealt with other cancers (unrelated, most likely, but which capitalized on his weakened immune system) that required surgeries.  He suffered terrible pain, and endured the strongest medicines there are which wreaked havoc on his body and left him fatigued beyond most people's ability to reckon.

Through it all, he maintained a quiet dignity and grace that was inspirational to me, and through it all his wife kept her faith, her sense of humor and her compassion -- and never once became bitter despite this terrible curveball that life threw at their family.

Through the past three years, we kept in touch and whenever our schedules in Arkansas coincided, we tried to connect for dinner or a nice bottle of wine.  We both found it comforting to run into each other at the clinic...we'd been in the trenches together.

At the end, Bruce remained responsive to the medicines that BB was cooking up for him, which included Carfilzomib.  Unfortunately, en route to the clinic for treatment he suffered a cardiac event of some kind.  Whether this was brought on by the disease, the treatment, the general run-down state in which he found himself or whether it was completely unrelated, is at this time unclear.  What is clear, though, is that Bruce is no longer suffering.

I would like the thoughts and prayers of this little community, which played such a hugely beneficial part in my own therapy and recovery and which continues to inspire me on a weekly basis, to turn to Jan and the rest of the Bertsche family.   We all lost a very good man.

God bless you, Jan.  We love you.

Thursday, November 17, 2011

Overdue for a catchup...notes on three years post diagnosis, etc.

Howdy folks.   Been busy as a beaver in my job, so I've been scarce around here.  Sorry about that!

I've endured a couple of misadventures over the past few weeks.  I had a nasty bout of what turned out to be gastroenteritis late last week that laid me up for a couple of days with pretty wretched abdominal pain.  Not sure how I got it -- the family was all sick but I managed to avoid coming down with whatever they had...unless it got into the GI tract somehow.

Two days of Vicodin (one day of Oxycontin, since the Vicodin wasn't cutting it!) and some Levaquin and I felt better.   Then it somehow came back three days later, this time for only 24 hours.  It's now 48 hours behind me and hopefully not returning...

I've also learned that I've got some tiny pre-cancerous spots on my forehead.   These are, I am told, normal in someone my age (43) and not in danger of being malignant, and that they are easily frozen off, with minimal chance of recurrence, and if they do return, it's unlikely they will become cancerous, and if they do become cancerous, they will almost certainly be benign rather than malignant.   So I'm not terribly worried, and I shall attend to them soon.

I've also finished the Steve Jobs biography, which is fascinating...I will only say one thing to my dear curcumin friends...dietary stuff often doesn't work.  Jobs tried it, hated the idea of pursuing aggressive treatment.  And it was responsible, sounds like, for him not catching his tumor before it spread.  Had he gone the Western medicine option, he might be alive today.  The author strongly implies he regretted his decision.

Lastly, I suppose I should say something about the anniversary of my diagnosis, which came and went unheralded a few days ago.  It's been an interesting, harrowing, enlightening, frightening, terrible and hopeful ride.  Not a day goes by that I don't think of all the people that through this blog gave me support, kind words of encouragement and strength during the worst of it -- thank you all so much.  And hardly a day goes by when I am not contacted by a newly diagnosed patient or a friend of a newly diagnosed patient.  One of the great things in my life is counseling the please keep reaching out.  If I can be helpful in any way, I want to be.

Overall...I feel good.  I won't be sad to leave these medicines behind a year from now, but I've been through 2/3 of my maintenance program, and I do believe that a year from now, I will be cured.  Not an operational cure, not it'll be back in six years, not "we'll wait and see."  Cured, as it no more meds for Myeloma and a statistically insignificant chance of it ever returning.  That's been the gambit.

Of course my hope is that before that time, a much less invasive cure that will leave me laughing ruefully at the need for tandem transplants and overjoyed that others will be able to be rid of this.  That day will come, eventually.  Let's hope it happens soon!

The next major milestone for me is my check-up in Arkansas in March, but I will be back before then, for sure.  Happy Thanksgiving to you all!

Monday, October 10, 2011

Quick observation on Velcade...

So I was out of the country last week and for the first time in two years of maintenance, missed a Velcade infusion.  I'm told I'm allowed to do that twice a year and remain on protocol, so no biggie.

However, I did notice I did not have gastroparesis.  Thus, my brilliant powers of deduction lead me to conclude that it is Velcade, and not Revlimid or Dex, that is the culprit.

This may be of use the others, hence my posting it.  I have a checkup with my local onc tomorrow and will post whatever news is merited!

Tuesday, September 27, 2011

Belated reporting of last checkup

Where has the time gone?  Children are back in school, my band (a time-consuming project) has been rehearsing for a brief European tour of sorts, and my job remains a demanding one.  Life is busy!

I had a good checkup in Arkansas.  I remain in complete remission.  But it wasn't a perfect one.

First, there was a brief scare when my bone marrow biopsy came back with 13% plasma cells in the aspirate, 10% in the core.  Recall, gentle readers, that the core marrow is more important since that is where new cells are being generated.

At any rate, such a level of plasma cells was deemed "abnormal plasmacytosis" on my chart, with several studies still ongoing.  The core was negative for myeloma, so that much was good...but I didn't like the number of plasma cells.

I was pretty unnerved for about an hour until the physician's assistant CR came in and said it was likely high because I was recovering from a cold.  He had a cold himself, and suggested that his plasma cells were probably 30% right now.  Even as I exhaled, my mind went back to a conversation with Kathy Giusti from around my diagnosis where she had said that it's a bad idea to have a blood test, even, when you have a cold since immunoglobins all shoot up at that time.  Well, the blood was negative for Myeloma, and it all looked good.  But I think there was some residual reaction from my immune system, hence the plasma cells.  In any case, no big deal.

I was somewhat saddened, though, to look at the MRI and see that the last four little lesions in my spine are stable -- I was hoping they would fully resolve.  BB was somewhat perturbed by this same thing.  So he prescribed more Zometa.  I'll return in six months, and we'll see what things look like then.  In the meantime, I'll continue to get my cancer markers every two weeks from the lab out here.  I anticipate there'll be nothing of note.

Twelve more months of maintenance, hopefully, and then we'll see how to transition off drugs and what my immune system looks like.  Will I be on Acyclovir for the rest of my life?  Will I need to be reimmunized?  Can I expect my immune system to recover and behave normally?  Interesting and important questions for a Myeloma patient.

There's more to report but work I'll fill you in on the other stuff in the days ahead.

Wednesday, September 21, 2011

A very cool dialogue with an online MM presence treated very differently than I...

Hello folks.  I will shortly be giving you an update on my visit to Arkansas last week (which was good, still in complete remission, a couple of mildly unsettling things to report but nothing major).

But I didn't want to forget about a very pleasant conversation I had in the guise of a focus group on bone issues and bisphosphonate treatment.  Sponsored by the manufacturers of Zometa, I've done one of these before in a larger group and they essentially ask for patients' opinions of how MM patients learn of bone problems, if they have a good understanding of them, how they are treated, etc.  I'm appreciative of the opportunity to contribute to consumer research that will help these companies improve the efficacy of treatment.  I certainly think that had the medical community -- and I include in this some generally good doctors that I saw before BB -- had a better idea of this, I'd not have had the broken back that I ended up with in Arkansas.

Anyhow, what set this apart was not so much the questions but the other person doing the answering.  As he is about as public as I am in the MM "blogosphere" I doubt he will mind that I mention his name: David Emerson.  I remember reading some of David's posts on Myeloma on various Internet message boards when I was evaluating treatment.  David seemed very knowledgeable, and if I recall correctly was well aware of BB's methods, which I believe he was fairly even-handed about.  I remember David being a fan of alternative medicine.  I've joked before that the three approaches to treatment are: cure, control and curcumin!   But after speaking with David, my sense is that he believes certain things (eating well, exercise, curcumin as appropriate) are good things to do regardless, and in this I fully agree although outside of Indian food (which I love) I don't take much of the orange spice.

David and I had a remarkably interesting exchange, and shared most of the same opinions on bisphosphonate treatment (essentially: it's important, and people don't know or care that much about it or its side effects because Myeloma gives you much bigger fish to fry).  David and I also both, I think, believe we are effectively cured (or in my case, close to the end of the treatment tunnel).  But we couldn't have arrived there more differently.   David was treated by Dr. Stanislaw Burzynski at his clinic, with antineoplaston therapy.   He's lived quite some time without any disease recurrence -- I think if BB looked at some blood work and marrow and it was negative, he'd probably pronounce David cured.

Burzynski is the subject of an interesting documentary which essentially claims that he has been smeared by the government and the American Cancer Society with the intent of covering up the success of antineoplaston therapy.  I'll spare you the counterarguments.  Let's suffice it to say that this is EXTREMELY controversial -- much more so than BB.

I thought it was very interesting that people coming from completely opposite positions on MM treatment found common ground and had a delightful conversation.  Wouldn't it be nice if we could make that happen in politics?  :)

I'm a pragmatist.  I'm much more likely to be cured of cancer than that is likely to happen.  :)

Thursday, September 1, 2011

Dosing to keep the ol' GI tract working...

After last week's disaster, I figured I must be doing it wrong.

I looked at my bottle of Reglan (so funny that I thought it was Ragalin, most likely because of the folksy pronunciation in Arkansas!) and checked the dosing instruction.  It was carried over from when it was prescribed to me as anti-nausea (probably coming out of a bone marrow or something with anesthesia) where it said to take one pill the night before "your procedure" and another the next day.

Because of this imprecise instruction, and based on the suggestion of JA, one of the physician assistants, I had taken one on Tuesday evenings (with my dex) and one the next morning, and one the next night.

This approach failed miserably last week.

So I use the Google Machine on the Interwebs and found that when prescribed for gastroparesis (med-speak for "gut shuts down") one takes one pill 30 minutes before each meal, then again at bedtime.

I tried that approach this week, and it seemed to work better than last week, certainly. 

In other news, fraternizing with the children of other parents for a few days in a family resort has led to me getting sick.   No big surprise there.   I am hoping I caught it early enough and started taking Tamiflu in time to cut off bronchitis.  So far, day three of sickness, just a tiny dry cough to go with the nasal stuffiness, swollen glands and sore throat.   Time will tell.

There is a silver lining, though: proof positive that I must continue my policy of avoiding the enormous fair at my daughter's school!

Sunday, August 28, 2011

Thoughts on two years of maintenance...full list of side effects, meds, etc.

Hello friends.   Sorry to take so long between posts but there's been precious little to update you on and I don't want to just blabber without having a point!  : )

On Tuesday I start the last week of the 24th cycle of maintenance, which means in a few days I will have finished two years of drugs.  Velcade, Revlimid and Dex as most of you know, are the three primary agents.  On top of this I add host of drugs for supportive care, as follows:

  • Revlimid suppresses the immune system and leaves me susceptible to shingles.  Therefore I take daily Acyclovir.
  • Revlimid can cause peripheral neuropathy.  Therefore I take daily MetaNX, a variety of B vitamins that have been shown to reduce neuropathy among Alzheimer's patients.
  • Revlimid can causes blood clots, or deep vein thrombosis.  Therefore I take daily aspirin as a preventative.
  • Revlimid suppresses platelets.  I don't take anything for this, but it is part of the reason which I take one week off the drug every four weeks -- to allow them to recover.  I take the aspirin to thin the blood despite this thrombocytopenia (low platelets) because it evidently is a different type of clotting that causes DVT.  At any rate, keep the low platelets in mind...
  • Revlimid causes hideous leg cramps, which can be prevented through quinine (which I would strongly prefer, except that it suppresses I don't go that route).  The only other route is to take magnesium supplements.  Through trial and error, I take 750mg of Magnesium a day.  Any less than this and I run the risk of waking up at four in the morning with a rusty hook in my leg (or at least that's what it feels like).  750mg of Magnesium a day is essentially like finishing the day with three shots of a powerful laxative.   Every day.  
  • Dexamethsone causes pretty severe acid reflux, so I take Pantoprazole as needed (usually the night I take Dex and the following night) to keep this at bay.
  • Dex also keep one awake, so I take Ambien or Ativan / Lorazepam 1-2 nights a week to ensure I get a decent night's sleep
  • Which leaves Velcade.  Velcade causes flu-like symptoms, nausea, etc. and generally the Dex (in addition to fighting Myeloma) helps to offset these symptoms by suppressing immune response so you don't get the fever as much, don't get the swelling, aching, etc. that comes with the flu, etc.
  • Velcade, though, I have found, shuts off my digestive system.  This is not particularly unusual, I am told.  In fact, I just learned there is a name for it: gastroparesis.  But I get the infusion on Tuesday afternoon and I find that by Wednesday, things have shut down, and they don't resume until Friday AM.  That means anything I eat Wednesday or Thursday sits in my stomach, undigested, making me feel horribly bloated.

This is without a doubt the worst of the side effects of my treatment.  And the last time I was in Arkansas, they suggested I take Ragalin / Metaclopramide, which is used to treat gastroparesis.  I have taken one pill the evening I take Dex, then one pill the next morning and evening, and again the next morning and evening.

Sometimes this works.

This last week, while on vacation with the family, it did not.

I found myself with the worst vomiting and nausea I've had at any point since diagnosis, which took me out of commission from 3PM in the afternoon through the next morning.  I couldn't even keep down the antinausea pill.  It was pretty rough.

I will take this up with the good folks in Arkansas when I see them a little more than two weeks from now.  Hopefully they will come up with an alternative that works better.

I receive 2.5ml per week of Velcade.  Times 100 infusions, that means...gadzooks...2500ml of Velcade.  Have I really had 2.5 LITERS of this stuff pumped into me by now?

Toward what end, one might ask?


Okay, not the first time I have shown this slide.  I'm now at the 2 year point of CR, on the low-risk slope.      About 92% of people, having reached complete remission under Total Therapy 3 (which includes Velcade) are still in remission at this point.   At around year 3.5, the line flattens out.  I will get an update on this chart, which is a couple of years old, when I get to Arkansas but the point is: if it hasn't come back by year 4, it ain't coming back.  About 89% of people that are low-risk and who reach complete remission are cured.

If I take 89/92, that's 96.7%.  So as of now, I have a 96.7% chance of being cured.  Pretty damn good odds, I'd say!

So that's why I continue.  One more year of this and hopefully I'm done...although frankly I wouldn't mind continuing to the 3.5 year point because that when it fully flattens out.  But doing so will require them to find a better solution for my gastroparesis / barfitis.

Wednesday, July 6, 2011

Embrace your inner biting monkey

I've met many very interesting people in my line of work, but few are more interesting than my friend Dr. EH.

Dr. EH (his Ph.D is in something related to neuroscience) was formerly a very senior R&D technologist at the company for whom I work.  He then went on to a very senior position in the US intelligence community.  Now he does some consulting with us and I have the opportunity to chat with him every now and then about everything from technology at our company to some of what's going on in Iraq and Afghanistan (the declassified portions!).   I had the pleasure of having lunch with him yesterday.

Another colleague at work has been through much more, cancer-wise, than I or, really, most people.  About 20 years ago he was diagnosed with a type of cancer (don't know what, exactly, but it affected his esophagus, jaw / neck, tongue, throat, etc.) that was Stage 4, metastatic and very nasty.   He went through a number of experimental procedures and has beaten it.  And he's now working with the doctor at Sloan Kettering who saved his life to put together a program to help doctors communicate better with their patients that are diagnosed with cancer.   EH is working with them both on this project.

So yesterday EH asked me my thoughts on the matter.   He wondered, for example, if information was enough, or if a doctor needed to let a patient work through the emotional response for a few days before absorbing any more -- unless of course it's something like AML where you need immediate treatment (as in check the person into a hospital and administer chemo that day).

It's a complicated question, I told him, and it depends on the type of cancer.   A person diagnosed with advanced pancreatic cancer, where the outcome is dire and fairly certain, will have different needs than a person diagnosed with an early stage hard cell tumor that can be removed.  And yet both of these situations are fairly cut and dry.   In the middle, we have Myeloma, where no two doctors seemingly agree on exactly what to do -- in fact doctors can't even agree on whether or not it is curable.  There aren't many who believe it is, and yet BB sees more Myeloma than any doctor anywhere in the world.  Consider that for a moment: more than any doctor anywhere in the world.  He has 20-30 new patients a week.  My diagnosing doctor SH, who is by all accounts a very good hematologist who sees a fair amount of Myeloma, told me he does maybe 10 transplants a year.  Barlogie and his team do literally hundreds.

I digress...

Anyhow, another part of the challenge is the subjectivity involved in parsing the information.  Quality of life, for example, is an extremely subjective measure.  For me, while I've got to take these meds and while I've got side effects (including insomnia on dex nights, which explains my 3:30AM blogging) they are totally manageable and don't affect my quality of life that much.   I have a good quality of life -- though certainly I look forward to being off meds and having an even better quality of life.   But others would view my weekly dosage of Velcade, my daily Revlimid and my weekly Dex -- all of which do have side effects -- as a not-so-great quality of life.  Some would certainly view my having to move 2,000 miles away for six months as a big hit to quality of life -- and I would agree.  But it was six months, and tolerable.  Others' mileage may vary...everyone answers these questions differently based on their own experiences, their own expectations from life, their attitudes, belief systems, age, etc.

I'd be very interested in knowing, from those of you who have contended with a diagnosis of Myeloma or any kind of cancer, what was or would have been helpful for you to hear when you were terms of assisting you with understanding your diagnosis, coming to terms with it, and making decisions.

But that's only part of this post.  We talked, then, about attitudes and how they impact treatment outcomes.  I told EH that despite my being a spiritual person, I believe the brain is just another organ in the body, and one's attitude is therefore directly linked into the rest of the system.  A brain set to kick the hell out of cancer versus a brain resigned to succumbing to it will have an impact on how the rest of the body handles treatment.

EH said that we definitively know this to be true -- that the brain is physiologically linked to the immune response, for example.  This made me think about letting down my immune system which I'm sure led to my cancer, but also to being shaken awake and being resolved to handle whatever treatment dished out and to beat my Myeloma.  So far, so good -- and I'm very fortunate that I've responded as well as I have to treatment because it's one thing to have confidence when things are working, and another to have confidence when they're not working so well.  I had a few days of doubt -- search my blog for the phrase "noonday devil" -- when I wasn't seeing the markers go down.  And those days were not fun.  So once again, I am humbled by the grace of others who deal with more dire prognoses than I.

EH then said -- and I apologize to any animal-lovers, because I also felt a twinge when he said this -- that "in the course of my training, I've operated on a lot of monkeys.   Some of them, when they came out of surgery, were just kind of down and depressed.  They didn't last too long.   But others, when they emerged from anesthesia...their first act was to try to bite you."   He smiled.   "Those ones tended to be okay."

So the message: be the angry, biting monkey in the face of cancer.  Not the depressed, resigned monkey.

I have a friend going through a transplant right now, and another friend who is going to do one later this year after another surgery -- so this means you, guys!

In discussing this with EH, I observed that in my own case, I never allowed myself to believe I was going to die from Myeloma.  I was certainly helped by finding a doctor who believed he could cure me, and, as noted, by my response to therapy.  I wonder, also, where the Kubler-Ross "denial" stage of dealing with a crisis ends, and where my resolve in the face of diagnosis began.  Was I perhaps just mired in the denial stage the whole time?   Who knows.

I think about something like a the book I read when I was diagnosed treated it as this monolithic, dreadful / awesome event and how I will consider it "my birthday."  I contrast that with my approach: but for this blog and a good quantitative recall of things related to my therapy, I couldn't tell you my transplants were.   My birthday is the same as it's been for 43 years.  My transplant date isn't my birthday any more than my hernia surgery was, and probably less so than my LASIK procedure on my eyes.  Similarly, I remember the attitude of one of the nurses in the infusion center:  "Ah, melphalan's no big deal."  No big deal.  You can do it.  You're bigger than cancer.  The angry monkey is too cool to fret about a little chemo.  The angry monkey has some swagger to him.

But EH also pointed out something important: cancer has a vote, too.  He lost his wife to cancer -- and she was strong-willed, did not allow herself to believe she was going to die, and fought like hell.  And it didn't matter.  So resolve only goes so far.  That, also, is humbling.

So where does that leave us?  Well, everyone is different.  I saw people in the clinic that didn't want to know what they had, didn't have any tolerance for understanding what treatment entailed or what the statistics behind the program where, and had no hope.  I saw people like myself who took a different approach.  I think, all else being equal, those who took an empowered approach have and will fare better.  But "all else being equal" is a very big qualifier, indeed.

Food for thought.

As for me, I find myself of late disliking the side effects of my meds, but reminding myself with each swallow of Revlimid and Dex to mentally think "[expletive deleted] you, cancer!" before I swallow these pills.  Whatever discomfort they cause me, it's 100X worse for whatever rogue cells I've got kicking around inside me.  Although they don't show up on any tests, I've got somewhere between 100,000 and 1 billion cells (probably much closer to the first number now) that aren't with the program.  So to hell with them.

And that's enough out of this angry monkey for the day.

Thursday, June 23, 2011

Two Musketeers and a Guy with a Wet Hacking Cough

Years ago, that was an entry on a David Letterman Top 10 list for "least favorite candy bars."   I remember the #1 entry was Johnny Bench's Nut Clumps.

Anyhow, I feel like that third guy and have for some time.  There was a bad cold going around the office, and my adorable little boy Carson was coughing, and it was just a matter of time until my immune system gave way.   I'm not complaining -- I've been very fortunate in that I've not been sick this year, I don't think, and considering both my kids and my wife have had the stomach flu and I was helping my poor son with his uncontrollable vomiting at 2AM, I'm damn lucky that I didn't get that.

So a bad bronchial condition that probably went from bronchitis to pneumonia is a mild issue, really.   I got a course of amoxycillin from the good folks at UAMS and that's more or less knocked it out.   I was out of Tamiflu when I first started getting the scratchy throat and had that not been the case, I might've knocked it out before it got bad.   Note to self: always keep Tamiflu on hand.

Minor problem with that: insurance doesn't cover it.   And it's about $100 for a 10-pill box.   Gulp.   So it's $50 to get rid of a bad cold quickly, essentially.   Probably worth it in the grand scheme of things.

Anyhow, it's on the way out now, though it's been here for about 10 days and I'd love it to be gone now, thankyouverymuch.

In other news, I decided to be a bit more militant about taking Ragalin -- an anti-nausea drug that supposedly also keeps the digestive track rolling -- whilst taking my reduced dose of Dex (down to 8mg a week).   I tried this the previous week and it didn't really help.  I still had the feeling that anything I ate from Wednesday AM was still in my stomach come Friday morning.  It's a rotten feeling, believe me. 

But this week, I took a Ragalin with Dex on Tuesday night, another one Wednesday morning, and another one last night and I don't feel nearly as distended and gross as I did the previous week.  Of course I'm also taking magnesium pills for the Revlimid-induced cramps, and the magnesium does ward off constipation brought on my the combination of antibiotics, Velcade, Revlimid and dex.    Incidentally what could be gently called "ward off constipation" on Tuesday and Wednesday night becomes "turns you into a booster rocket gripping the toilet seat for dear life" by Thursday.   But then these are minor things compared to the leg cramps so I've adjusted to the new normal.

15 more months to go, give or take.   Although frankly I wouldn't mind sticking on this stuff another year since the longer I stay on it, the more definitive the cure signature is.   I'm sure I could go off it after 3 years, since that's what BB says is enough.  Yet I also learned from my last dinner with BJ that there are people alive post TT2 and TT1 20 years later who are taking Thalidomide despite the fact that it's certainly lost its effectiveness.

I'll worry about abandoning my security blanket when the time comes.  As alluring as the final endgame to this interesting if undesirable match of GI chess has been for the last 26 months, I wouldn't mind saying goodbye to it!

Wednesday, June 15, 2011

Vanity, a caution against supplements and a thankful false alarm

Hello peeps.

It's my birthday today...43.  Since I was diagnosed at 40 and had no idea if I would reach 43, I'm a pretty happy camper, despite a grueling work schedule that has not permitted me much time for anything recently, including updates.

But yesterday, I had quite a scare for a little bit, and thought it was something that some of you might learn from.  Don't be me, basically!

I've counseled some friends going through myeloma treatment -- they know who they are if they are reading this -- that they shouldn't worry about silly little things like losing your hair.  Whether you want to pursue cure or control, effective treatment of progressive disease will at some point involve a transplant.  I say that with the knowledge of Dr. JB's position.  It doesn't change my opinion one iota.   And my comment to my friends is thus: hair grows back, the disease absent treatment will kill you, wear a freakin' hat for six months for pete's sake and deal with it.  It's not a big deal.

Having said that, one of the side effects of dex is weight gain.  I got pretty tubby after about nine months and two transplants and so I rededicated myself to eating better and drinking water instead of wine (some of the time!) and that helped, but I also started taking a supplement called 7-KETO that supposedly boosts metabolism.   This helped, I think -- or perhaps it was placebo effect -- but I lost about 20 pounds and have kept it off and while I'm not yet where I want to be, it's a noticeable improvement.   I know this because Dr. BB no longer says "let's call it what it is: you're fat!" when he sees me.  (Note: he actually said this, verbatim!)   Now, he says I look great.  And we know BB is honest to a fault, so there you go.

I checked with one of the physician assistants at UAMS before starting this supplement of course.  He was not familiar with it but I explained what it was, using the description of ingredients from Amazon, and he said it sounded fine.

Six months later and several re-orders of the pills later (taking them twice a day), I did a larger re-order on Amazon.  The pills arrived, and they were slightly larger and a different color.  I popped one and then decided to take a look to make sure they hadn't changed the formulation -- that the size and color were simply because they were a larger dose or something.

This pill, I was MORTIFIED to read, contained a large amount of green tea extract.  Now I know green tea is the one thing I'm not supposed to have since it's contraindicated while on Velcade.  But I thought it might inhibit absorption of the Velcade on the day of administration, or perhaps increase nausea or something like that.  So I did a little research and became even MORE mortified.   From Blood magazine, the mellifluously-titled publication of the Hematology gang, I learned that green tea extract appears to basically BLOCK the anti-cancer effects of Velcade.

My normally calm heart decided to skip a few beats.  Have I been taking pills that counter the effect of one of the primary reasons I'm hopefully going to be cured?   Have I mangled the maintenance program that has been delivering cures?  Is the data that I've seen now invalidated because I've basically been off Velcade FOR SIX MONTHS!!!???!!!

I called BJ and she was reassuring.  Green tea reduces efficacy of Velcade, and I should stop taking the pills, but I shouldn't panic.  BB said the same thing.   But with all due respect and love to them, they're not the ones who may have been not getting the benefit of the Velcade for six months.   So my level of alarm was reduced from panic to concern.

I then wanted to go to Amazon to see exactly how long I'd been taking this stuff.  And here's where things THANKFULLY turned out okay.  As I was going through my back orders, I clicked on one of them.  And it's VERY subtly different.  One (the one I've been taking) is 7-KETO.  The new one I ordered is 7-KETO Lean.   The only difference in the that the original does not include green tea.


Now I will probably stop taking ANY supplements until I am done with my treatment, because nobody knows what this crap will do to you, really, particularly if your body is dependent on delicate chemical reactions to kill certain cells while leaving others intact.    The only supplement I continue to take is UAMS-approved for neuropathy.  It's a compound of B vitamins called Metanx that has been shown to reduce neuropathy in Alzheimer's patients.  So I'm fine with that.

Other supplements be damned.  Sorry Margaret and Don!  :)     I'm all in with Western Medicine on this trip.   Not that I won't get some curcumin along the way as I like dishes prepared with it.  :)

Learn from me, people.  Be careful what you eat, and don't let vanity get in the way of your most effective battling against this disease.

And with that, I'm off to celebrate my birthday with Jill, drinking wine and not water...but staying away from anything with green tea in it.  : )

Monday, May 23, 2011

The actual meeting with BB...

So as happens on these visits, my last scheduled appointment was with BB.  I got to the clinic, met first with a research nurse who made sure all my medication records were being kept accurately, reported my minimal side effects, etc.  I snuck a peek at my labs, reviewing my MRI and bloodwork and bone marrow (all good).  I then met with the terrific physician's assistant JA to go over all of this before being summoned to the 4th floor and my consult with BB.

While there, I met a lovely couple who were monitoring the husband's MGUS.  They had not yet begun any kind of treatment and had a few questions which I was happy to answer -- and I referred them to this little page so if you Longhorns are reading, hello!  : )

Then I went into BB's office.  When I get access to the photo I took, I'll post it here, which will further strip away anonymity for anyone who cares to look so it's almost ridiculous at this point to keep initializing him since anybody who is remotely interested (and if you aren't, not sure why you are reading!) could find out that it's Bart Barlogie so there it is: like the day when KISS decided to take off their makeup, I've revealed the name of my doctor.

Anyhow, I'll post the photo here when I have a moment.

Now, you've read some descriptions about BB here, and for those of you that I know, you've probably listened to me tell many stories about him -- always being kind not to tell me that I'm boring you!  But I can't imagine this man is only of interest to me!  My usual description of him is:  "a 70-year-old German guy who rides a Ducati to the office and does his rounds in black leather biker pants and a dog collar."  Sadly, he was wearing a different outfit on this particular day!  Nonetheless, he is quite a character as my previous stories attest and as this one continues to affirm!

I entered his office.  He looked at me, smiled, and say "hey there, a**hole!!!" and stood up and gave me a big hug and kiss.  I couldn't help but tear up and frankly I am doing so as I type this.  Some doctors are known for being detached -- two well-known doctors in this field are known for being rather cold, actually.  BB, on the other hand, is emotionally invested in his patients.  He and I are friends.  I have mentioned before that I can see he is visibly effected -- saddened and tangibly angry at the disease and his inability to cure the most severe cases -- any time he loses a patient.  The flipside is real joy and a lightness of being when he is able to put somebody on the path to a cure.  Hence: "hey there, a**hole!!!" and the accompanying affection.

After introducing me to a colleague on rotation in from Greece (both a physician and the uncredited photographer behind the photo I shall post) he jumped into the file.  The highlights:

* Bone marrow negative for plasma cell myeloma, with normal morphology.  That means the right number of chromosomes, all in a nice little row.

* No trace of original M protein under immunofixation or SPEP.

* ALL BUT FOUR of the fourteen lesions in my bones have fully resolved.  I had, upon diagnosis, two in my hip, one in a rib, one in the left scapula / shoulder, and TEN in different vertebrae.  As of January, only two (shoulder and rib) had fully resolved.  But now, all but four of them are completely resolved and the remaining four (two in my thoracic vertebrae, two in my cervical vertebrae) are small enough where their size is not noted (which means they are less than half a centimeter).  Bart pointed out that UAMS is the only Myeloma center that tracks resolution of former lesions because their data suggests that recurrence can be linked in part to remaining focal lesions, even if inactive for cancer.  So this is tremendous and important progress.  My Zometa infusions were reduced from monthly to bi-monthly.  We will see if he continues it once the bones are fully healed (as it does look like I will get there) as Zometa's anti-Myeloma properties may or may not extend beyond promoting bone healing.

* My Dex was reduced from 12mg weekly to 8mg weekly.  This is the lowest amount that the protocol allows.  I welcome the reduction and hopefully it will reduce the digestive issues that I get mid-week.

* I am to return in four months, and we'll see how it looks at that time but thereafter it seems likely that visits will be reduced to every six months.  Which makes those Whole Hog sandwiches even more of a rare treat!

So there, friends, is the full update.

More news as is merited.

A very good checkup! (part 1 of 2)

Apologies for the delays in posting this, dear readers, but I've been frightfully busy with my day job.

Some highlights from the week prior to my meeting with BB:

* A lovely dinner with BJ at a restaurant I had not tried before, So.  We discussed a few topics of interest:

     - UAMS has been prescribing more Revlimid than anybody in the world to hundreds if not thousands of patients for a longer period of time than anybody in the world and has seen no incidence of increased secondary cancer.  BJ attributes Celgene's own statistics to small sample size.  My own opinion is guarded -- I don't like the fact that Celgene noticed anything, although I do understand that sample size can make a bit difference and UAMS has much better data than anybody in the world, and ultimately the risk is worth the reward as Revlimid plays a major role in the cure that I am pursuing.

     - BJ notes that UAMS has been using maintenance therapy for 20 years, the first 18 of which were in the face of people saying it did no good, and that they view the recent broadening of acceptance of maintenance therapy with equal parts satisfaction and irritation.

     - There are people who remain alive nearly 20 years after Total Therapy 1 (unlike current therapies, this is a small percentage) who are reluctant to discontinue their medications which include Thalidomide and Interferon.  In the case of Thalidomide, its benefit is long since exhausted since any residual disease would have developed resistance to the drug by now.  In the case of Interferon, it was never proven to be efficarious!  Yet patients are afraid to change the regimen, particularly if they tolerate the therapy without side effect.  BJ noted one patient in particular who is on a MAJOR dose of Thalidomide (over 1g a day!) who was reluctant to dose reduce even though the protocol at UAMS has been a fifth of that amount for years now.  I wonder if I, myself, will be reluctant to dose reduce / discontinue medication after the three year mark when the vast majority of the "cure signature" has been determined.  Or after the six year mark when recurrence rates are effectively zero.  Hmm....

     - I had previously succumbed to vanity and had a dermatologist in LA freeze off a single wart that had appeared on my right index finger.  When this chap (no initials as I'm about to rip on him a bit) did that, he saw some as-yet-undeveloped naughty tissue around my fingernail so he froze that off as well.  Except it came back so he froze it off again, and again, and told me to put this acidic cream on it, and trimmed the nail, etc.  After all these treatments over a period of three months, the right side of the nail looks pretty unpleasant.  The dermatologist out here thinks the nail matrix (the part of the body that produces the nail) has been scarred and will never work again and I'm going to have to have it surgically pared back and my fingernail will only be about 80% of the width that it should be -- forever).  Mindful that the actor Roy Scheider had been successfully treated for Myeloma only to perish from complications that began with some kind of cellulitis, I asked BJ to look at the finger.  She recommended I meet with a dermatologist at UAMS and would set up an appointment for me.

* I made the pilgrimage to Whole Hog BBQ for a delicious pulled pork sandwich.  This is one of the things I miss about living in Little Rock.  But frankly if I lived here full time I would probably be cured of Myeloma only to die of heart disease since these sandwiches are too good to resist!  Behold the glory!  (note: the "V" on the BBQ sauce denotes "Volcano" sauce which is so hot you have to get it from behind the counter rather than from the container of six different sauces on each table).

* I ran into J and B B (the other BB referenced a few posts ago) who looked great!  Unfortunately, the next day they learned that their struggle continues...Pomalidomide (next generation Velcade) failed to deliver results and so now the Natural Killer cells are the next step, but the non-dr-BB has disease that has escaped the marrow and this must be eradicated before the NK cells can do their thing.  I continue to be humbled by the strength and grace of people with this disease, particularly those with a more aggressive form than I.

* One advantage of having the MRI rejected by insurance is that I reduced it to only the essential stuff -- basically we are interested in tracking the resolution of my former "hot spots" so there's no need for MRIs of every other part of my body.  As a result, I got in and out of that tube in about 40 minutes which beats the heck out of the 3+ hours (between the full body MRI and the separate bone marrow "DWIBS" scan) that it usually takes!

Okay, so to the important matter...well, actually my meeting with BB deserves its own post as this is getting rather long.  : )

Monday, May 16, 2011

Dateline: Arkansas

Hello folks. Sitting in a hospital bed waiting for my bone marrow team to show up. Figured this was as good a time as any for an update.

I was all set to fly out yesterday from LA but due to some last minute changes in travel, I forgot that I was no longer flying out of the same airport. Thus, I went to the wrong airport. I then had to scramble to find sn alternative but eventually made it into Little Rock around 11PM.

This morning, I had a minor victory when I went directly to the infusion center and had them access the port for the blood work. I ran into JB and her husband B, who has not yet started on the natural killer cells. Evidently the trial only permits one person per month and ine guy got in front of B. Meanwhile B was been put in Pomalidomide (next-gen Revlimid). They see BB tomorrow. Meanwhile we are going to hopefully have lunch tomorrow.

I then went over to the Myeloma institute where I saw BB's Ducati outside the main entrance. I almost snapped a picture. :)

After a quick consultation with CR and a quick visit with BJ (hopefully BB, his wife, BJ and I will have dinner this evening) I made my way over to the outpatient clinic.

Not much more to report yet, but I did want to mention one humorous (sort of) thing. One of the young nurses in the myeloma clinic who used to give me grief about getting conscious sedation for the bone marrow biopsy got into the elevator with me. I asked how the storms that have ravaged the south these last few weeks had impacted Arkansas (there are been tornados, for example).

She said everybody was okay but their barn was damaged and her husband's work was disrupted. He is, I was told, a taxidermist.

I have a vision now of a man running from a small funnel cloud populated with the swirling carcasses of dead squirrels and possums....

More news when I get my labs and MRI results back later this week.

Wednesday, April 27, 2011

A quick thought on caregivers...

Without caregivers, it would be unthinkably challenging to those of us battling this disease.

Give your caregiver a hug today.

There you have it: my briefest and least clinical post, but it is as heartfelt as any I've made.

Wednesday, April 20, 2011

A bit more on killer cells at UAMS...

For those interested, the trial in which BrB will be enrolled is described right here.  If this works for high risk patients, it will likely work for all.  Let's all keep our fingers crossed!

Another example of why I love my doctor

A fellow traveller -- well, actually, we're going to call this guy a warrior...BB are his initials, and he's not related to my marvelous doctor -- has been through hell, and today was a neat example of why I love BB (both of them, really, but the doctor for purposes of this story).

This is gonna get confusing so we'll call the patient BrB and the doctor BB.

You have read a lot in my blog about low-risk versus high-risk disease.  About 85% of patients, according to the 70- and 80-gene studies at UAMS that are by far the most advanced in the world for this disease, are classified as low-risk disease and they are eligible for the TT4 protocol for low-risk disease.  This is what I underwent.  I had some bad characteristics within this 85%, such as cytogeneic abnormalities and a "proliferation" subtype that meant my disease was more aggressive than some, but I was still low risk.  And BB believe he is curing about 65% of newly-diagnosed low-risk disease patients through the TT4 protocol.

The results and prognosis for high-risk candidates are considerably more dire.  The treatment protocol is more aggressive even than the already-aggressive TT4 protocol (I believe there are five or six additional chemo agents used, on top of the four used in TT4 -- and note this excludes "pseudo" chemo like thalidomide, Velcade, etc.  - I'm talking real, old-school mustard gas chemo).  And cure / survival rates are much lower.  Only about 20%, if memory serves, are cured, and most people live only 3-4 years with high risk disease.

My wife and I met BrB and his lovely wife as we were in the middle of therapy.  They are delightful, warm people and it pains us to know all that BrB has had to go through.  On top of it being high-risk, he is also non-secretory, which means his disease does not show up in his blood (M-spike) or his urine (Bence Jones Protein).  It is only through PET Scans and bone marrow biopsies that it is revealed.

BrB enjoyed one year of remission after this brutal regimen, and about six months ago it came back.  I'll spare the details, but he's been through extremely aggressive chemo, has had to deal with horrible respiratory complications, hospital stays for that where he's contracted opportunistic infections, etc.  Throughout this, his lovely wife J has been so supportive and tried to keep his spirits up.  BrB, understandably, has had some real challenges but he manages to soldier on with dignity even if his spirit and body is exhausted.

Several days ago, BB demanded to know where some test results were.  They hadn't been done.  BB went ballistic and the tests were done.  And then he saw that there was some residual myeloma.  BrB was saddened, obviously, until -- and this is where it gets cool almost like a scene in a movie, BB called the lab.

"How close are we with the killer cells?"

"One week."

"I want BrB to be the first to receive them."

In addition to the existing Total Therapy regiments, BB and his colleagues have been working on killer cells for myeloma.  This has been done successfully in leukemia in London, and it has been demonstrated to be highly effective in myeloma-stricken mice at UAMS. 

BrB will be put on Pomalidomide (next-gen Revlimid) to keep the myeloma in check until May, when he can get enrolled as the second (there's one other guy, turns out) patient in this trial that has shown tremendous promise.

My thoughts and prayers go out to BrB and J, both for their own individual sakes and as hopefully an example of another important breakthrough driven by BB's steadfast desire to cure this disease.

Monday, April 11, 2011

Bruising like a grape

Just a quick update about one of the side-effects of Revlimid.  I banged my hip against my desk a couple of weeks ago and a GNARLY bruise resulted.  I mean at its peak this thing was at least six inches in diameter and covered the whole right side of my hip.  Yuck.  I was going to take a picture of it and post it here but frankly, neither you nor I really want to see that immortalized for future search engines to find!  :)

My platelets were around 110.  I graphed this at one point for my own edification and should put it up here.  On maintenance there is a short cycle where while one is on Revlimid for the 21 days, the platelets decrease, and during the week that one is off it, they creep back up.  They might, for example, be at 150 at the start of the month, go down to 110 by the end of the 21 days, and go back up to 150 at the end of the 18 days.

Two further points, though.  The first is that they lag a little bit so they seem to continue to go up during the first few days (say the first 7 of the 21) of the month and then continue to go down even when one is no longer taking the Revlimid for a few days.

The second, bigger point is that over time they don't go up by as much as they go down.  I would say my baseline has probably dropped from 125 to maybe 110 over the last year.  And that is slightly troubling since I'm on this stuff for another 18 months or so and I will be well below 100 on a regular basis, and that's when the gnarly bruising starts.

I asked BB if I could take a week off from the Revlimid to give the marrow a chance to recover and hopefully have that bruise vanish.  He agreed, thankfully.  So the bruise is starting to get better.  But today is my last day off.  Blech.

Be well, everyone!  I am scheduled to return to Arkansas on the 16th of May but will have updates before then.

Saturday, March 26, 2011

Sad news about Geraldine Ferraro...

A sober reminder of how horrible this disease is.  She was quite a fighter -- living with this for 12 years.  She outlasted the odds available to her at that time.  But it's also a sobering reminder of how one can only control this disease for so long.

Here's hoping that in celebrating her life and honoring her passing with dignity, some attention can be focused on this disease and new treatments developed, hopefully leading to a cure that's a bit less intensive than the one hopefully offered through tandem transplants.

For now, I remain humbled by my good fortune in finding a doctor and a protocol in whom and in which I believe, respectively.  And I remain thankful for you good people, and for the favorable impact my therapy has had on me thus far.

Tuesday, March 15, 2011

Thought I'd let you know I'm not sick! :)

Sorry to have been so busy!!!

I have some interesting things to post...I have on average two people a week email me as newly diagnosed patients.  And one lovely young lady who is working on a college paper on the disease after her mother was diagnosed was kind enough to ask me some interesting questions, and our dialogue might be insightful to some so I will post that soon.

Generally, everything is good.  I went through a couple of weeks where the dex was bothering wasn't even that I had (TMI alert) was as though the entire digestive system shut down.  I felt like I had food in my stomach for three days.  It was pretty awful.    But those have abated the last couple of fact this week I have felt positively peachy -- no GI issues at all.  I am off Revlimid for the week, and I decided to give myself a break from the magnesium, so it's been very easy.

Of course all that ends shortly, as today is Velcade day and then I've got the Revlimid back on tonight and the accompanying Dex.  However, everything is steady as she goes.

Including the weight, sadly.  I dropped about 20 pounds but have been holding fairly steady.  Further weight dropping, given how much I am working, is going to require probably total abstinence from wine for a month and even more heinous restrictions on food.  I really only want to lose another 10-15 pounds...that would put me back at my high school fighting weight which would be pretty remarkable after all I've been through.  We shall see.

Anyhow, sorry for the lack of updates...I shall endeavor to be more regular soon!

Thursday, January 27, 2011

Reflecting on lost friends, those still here, and those I continue to meet...

It's roughly two years to the day since I began treatment.  I took my medicine this week, including Zometa (a pricey little thing at $3,400 per infusion!) to hopefully spur my bones into healing quicker and resolving those remaining inactive tumor sites.  If they're all gone by the time of my next trip, with some luck I won't need to have a fine needle aspiration done on any of them!

And I deal with the side effects.  All things being equal, of course I'd rather not be on this stuff.  My muscle atrophy is bad...I used to have a pretty well muscled lower body and now it's nowhere near as strong as it used to be.  Between tiredness and the barrage of winter colds encouraged by my intentionally suppressed immune system, and of course my work schedule, it's hard to even think of when I might exercise but I really need to start physical therapy.  Damn, I should have made that one of my new year's resolutions.

But I remain very fortunate.  I'm thinking now of two groups of people...the first group is comprised, unfortunately, of a small but growing numbers of fellow Myeloma travelers I've met since my diagnosis.  Some were quite sick at the time of my diagnosis, and some were not yet diagnosed.  But several have given up the struggle and lost their battle with this horrible disease.  These people are friends in a very real sense...and I feel the loss.  Just today, I was looking through another blog and found that the woman that maintains it lost her husband literally yesterday after a single transplant a couple of years ago.

Then there's another group of friends who have chosen to control the disease, with minimal use of drugs and reserving stem cell transplant as a last resort, etc.  For a time, these friends seemed to be faring well but one by one they are losing remission.  I fear for them, not because they necessarily will have a dire end any time soon, but because it is a reminder of where the "control" path leads.  To eventual recurrence and the hope that science outpaces the disease.  And certainly there are more drugs now than ever before to help beat it down.  I will of course be reliant upon the newest of these in the (unlikely) event my own disease returns.

Then there's yet another group...people that contact me through my blog.  On average, I get perhaps two emails a week from newly diagnosed patients.  It is one of the most rewarding things in my life when this happens...I feel like I am able to provide a little perspective, and some optimism.  I started this blog, in part, because everything I read was so defeatist.  I remember the book saying "your new birthday will be the date of your transplant, nothing will ever be the same, etc."  Well I had two of them, and I can scarcely remember the month with confidence, much less the day.  And while there is a "new normal" that has replaced the "old normal," I would say that most things are very much the same.

So this is rambling, but I guess I would say to my second two groups: don't be afraid to take the fight to the disease if it's acting up.  Don't be afraid of a transplant if that's part of the protocol you and your doctor choose.  Don't fret about the side effects: the side effect of untreated Myeloma is death.  That's a bigger deal than hair loss!  Or the other side effects -- which I humorously found mentioned on another blog as NVD (never thought of my initials being a mnemonic for nausea, vomiting and diarrhea).  As I mentioned during my own transplant experience, they are very good at controlling the first two.

And while I strive not to be messianic in this blog, if you are newly diagnosed, PLEASE do yourself a favor and investigate aggressive therapy.  People are being cured in large numbers.  It bothers me so much when people refer to Myeloma is incurable.  That's simply not true.

All that said, the aggressive path is not for everybody, but three things are:

* Find a Myeloma specialist.  NOT just any old hematologist, not somebody who dabbles in it along with lymphoma and non-HL and leukemia.  But somebody who REALLY knows this disease.

* Take control.  Demand your labs.  Ask questions.  Learn everything you can about the disease.  Be your own advocate.

* Bring a positive attitude.  Once you have selected your treatment path, be confident in your choice.  Put your trust in the hands of your doctor.  Remember, any pill you take or infusion you receive that causes an unpleasant side effect is killing your cancer and upsetting it much more than the rest of you.

* Commit to getting better.  Make this the most important thing in your life.  If you have to move temporarily to be closer to a true center of excellence, do it.  Your home will be there when you get back.  If you worry about the expense, consider this is the fight of your life and if it's not worth burning through savings on this, what is it there for?  If you worry about vanity like hair loss, get over it and get better.  Nobody chooses this path: you are dealt a crummy hand.  You can either play it to win, or fold.  Play it to win.

Friday, January 14, 2011

Normal marrow and other thoughts, including BBs opinion on the Revlimid scare

First off, everything looks good. Marrow has 50 percent cellularity, 5 plasma cells, 2 percent core plasma cells and is negative for Myeloma. Also, my hip doesn't hurt all that much so the new bone marrower must have done a good job!

I got to the clinic early today. I had a 12:45 appointment with BB and, keeping in mind that last time I got to the clinic early and got seen pretty quickly, attempted the same. I got there at 10:30 or so. Sure enough, I met with the research nurse pretty quickly. Hard to believe I am heading into my 17th month of maintenance already.

Then things slowed down. Waited in the clinic for about an hour, then got put in a room. I read my labs...the MRI, unfortunately, did not indicate any shrinking of the four remaining focal lesions. They were stable, but did not resolve. My blood work came back negative for M protein under SPEP, but there was not yet a result from Immunofixation which is the more sensitive measure.

I observed on the MRI various characterizations -- hypointensive marrow, hyperintensive marrow, isointensive marrow, homogenous marrow, heterogenous marrow, etc. I tried to discern any differences between the previous scan and this one but I lacked the knowledge to figure it out.

I sat and waited, and waited, and waited. I had a flight to catch and wanted to leave by 3PM and it was starting to look dicey. At around 1:45 the clinician, a terrific physician's assistant named JA, arrived. He called and got the bone marrow results, which was a relief. He explained that what we are looking for is homogenous marrow, as opposed to heterogeneous marrow, as the latter implies patchiness. So in this context these descriptors do not refer to the cellular content of the marrow but rather the evenness of its distribution through the body.

The other vector -- hypo- hyper- or iso-intensivity -- is a little more complicated. MRIs (at least the ones done here) use two types of images: T1-weighted and STIR. I have no idea what these distinctions mean, but JA explained that T1-weighted images focus on the liquid in one's body which makes the readings of marrow hyper intensive. So the ones to look at are the STIR images, and the best reading is evidently isointensive (which means the same all over).

For what it's worth, I am mildly hyperintensive. Sadly I learned what all this meant after I turned the file over to JA but next time I will see what I used to be and how it has changed. All of this is subjective and up to the tech that interprets the MRI, so one's mileage may vary. I was told by JA that BB would not react to any of that data, although he reminded me that "sometimes BB sees things in the data that the rest of us do not see."

It was now 2:15 and I reiterated that I had to get on a plane at some point original appointment time with BB was 12:45. JA said that BB was almost back on schedule and I should be able to get out of there by 3PM, which would be perfect.

Then I sat down with the man himself.  He looked troubled (though not by me).  He got on the phone with the hospital, got some people on the line and was quite upset.  From what I gathered, one of the APN (uber nurses) in the Myeloma clinic had developed Waldenström's macroglobulinemia, which is itself a blood cancer.  BB had done rounds yesterday and noticed that this person's white cells were at zero.  He ordered a bone marrow and asked that stem cells be readied.  When BB saw the results of the bone marrow he ordered the stem cell transplant immediately.

Apparently the doctor at the hospital who had to sign off on this cited protocol that the two things (bone marrow biopsy and stem cell transplant) cannot be done on the same day because it can create a chaotic environment in which patients can be at risk.  BB's point of view is that this isn't done every day, and that if exceptions cannot be made when a person's life is at risk, there is something seriously wrong with the policy.

BB laid it on the line: if this young man dies because of this, he is gonna give it to everybody over there with both barrels and hold them responsible.

I mention this because BB becomes personally invested in the patients under his care.  I have written about this before.  Every patient lost to Myeloma is an affront to him.  He confided that this has been a "horrible year" so far and that half a dozen high risk patients have been lost.  "you follow these people and treat them for so long, and then to lose know..." I could see how it affected him.  He said that "it's as though there is nothing in common between the two branches" -- meaning he really does think that most low risk patients will be cured.

While waiting for him, I spoke at length with a gentleman who looked to be in his late 50s who was himself high risk but was still in remission three years after he began.  High risk patients achieve remission easily but the recurrence rates are frightfully high for the first three years.  After that, they flatten out and recurrence risk is very low -- in fact they are likely cured.  The gentleman with whom is spoke is three years out.  When he last saw BB, the doctor said "you are almost out of the woods...but not quite!" and winked at him. Hopefully this guy -- who looked great, it must be said -- is out of the woods now with this current visit.

That man and I spoke, as it happens, about BBs humanity.  He has an edgy sense of humor and is an iconoclast and is the same guy who jokingly pulled a clump of hair out of my head and pointed out how fat I was last time I saw him.  Yet his care for his patients is immense.  The high risk gentleman told me of how he thought his major courses of chemo were finished during his primary therapy (like me, he is on maintenance) and he was saddened to learn at the time that there had been one more course.  Evidently he had been misinformed, and BB was angry.  He got on the phone with whomever was responsible and said "dammit these patients go through hell, you cannot pull the rug out from under them with this."

Back to the present.  BB was happy with everything in my chart except for the presence of the focal lesions that we want to see resolve (I have four or five left...two in my spine, one in my right hip, and one in one of my shoulders, possibly one in my rib).  These are no longer FDG-avid -- meaning there is no cancer -- but as long as they are there, there is a chance that they can form a microenvironment for recurrence of the cancer (such is BB's theory, at least).  "Sometimes, these ghosts can could take years in some people before they go away.  But we want them gone."

I suggested Zometa and he agreed, so i will get one course every month for the next four months.  He said he was "considering doing a fine needle aspirate of the lesions" but that the last time that was done, they were negative for Myeloma so he was not yet ordering it, and i will not need a PET scan next time either.  I cannot say I am happy about the prospect of the FNA but I will cross that bridge when I come to it.

He offered me the ability to come back in six months rather than four, but i want to see these gone, and I want to hang out with BB, frankly, which we were not able to do this time.  He asked about my family and told me to email him directly next time so that we can arrange dinner.

Then he said "you know, I saw a newspaper article about my good friend RS, who used to work with us here and now operates out of Hackensack...and this pisses me off.". He showed me the article, which was about Dr. RS's enthusiastic support of Carfilzomib, the next generation protease inhibitor which works in many cases where Velcade no longer does.  The offending line in the article (which were not RS's words) referred to Myeloma being a disease which is "uniformly fatal.". BB said "why do they say that?"

I said that it upset me every time I read something similar, whether in an article like that or a fundraising letter from the MMRF (long-term readers know that I hold this organization in immense esteem, its refusal to acknowledge UAMS' results notwithstanding).  I said I felt it was a slap in the face to the work being done at UAMS and to patients who have undergone treatment and been cured.  We mused that it was in part a desire to maintain urgency behind fund raising and new drug development, but BB said "when you are curing childhood leukemia, you can raise money by pointing out the tremendous advances being made.". That is true, although I do think maintaining urgency behind a disease that cannot be definitively cured in virtually 100 percent of patients is pretty important.

I then asked BB about the Revlimid scare.  Unlike GD, when I asked this of BB he knew immediately what I was talking about and I didn't even need to finish the sentence.  His response, verbatim to reflect both his personality and his passion:  "that's total bullish*t.  Absolute bullish*t.  We have seen hundreds of patients for many years and it's never happened.  Somebody is selling something or has another agenda."

So there you have it.

Our time up, BB stood up and embraced me for a good 20 seconds and kissed me on the cheek, telling me again to give my family his best.

I cannot wait to see him again.  I love that man.

Notably, I am on a flight to Las Vegas and the makeup of the passengers looks like a church group. Not sure the point of a church group going to Vegas...

Thursday, January 13, 2011

Two things to be nervous about...

I am typing this from a stretcher about to be rolled in for the bone marrow.

You gotta love how good Arkansas is about getting patients their data. I looked at the PET scan results. Largest lesion remains in my right hip at 3.5 cm. I seem to recall that is unchanged from last time, which is disappointing. Plus the SUV for my L5 vertebrae went from 1.3 to 1.6. Hopefully this is just noise and neither figure is indicative of cancer but I like numbers to go down, not up.

Second nerves-inducing moment was overhearing the bone marrow nurses. I am to be the first attempt by one of them. Things like "if you do that, then you will just need to make another hole."

Let's not do that, okay?

And while you are at it, keep your voices down or have these conversations out of earshot!


Those onomatopoeias there reflect but a few seconds worth of the aural cacaphony of an MRI.

I had about two hours worth of that plus a host of other loud noises yesterday afternoon. Only here, ground zero for aggressive testing, could they find a way to make an MRI more exhaustive (and exhausting). I may have written last time about the relatively new (I think) DWIBS scan which essentially a second full body MRI focusing specifically on bone marrow. So now, one has basically TWO full body MRIs to deal with.

I also had my tenth or eleventh PET scan yesterday. I found out that I can listen to my iPod during the roughly fifty minute scan. File that under "things I wish I had learned nine or ten scans ago."

I will get the results of these scans tomorrow when I meet with BB, whom I saw at dinner last night. He was having a dinner with his right arm, BJ, and the head of an imaging company. I am sure BB and his patients are some of the best customers. I believe there are six MRIs at UAMS, with zero downtime, running 12 plus hours a day, and 80 percent of the entire volume is for Myeloma. Amazing!

Yesterday began with port access and blood draw. I was unsuccessful in my efforts to get them to use the port for the blood. The clotting factor (important to confirm before a bone marrow biopsy can be done) is rendered inaccurate by the heparin used in the line after each access to ensure it doesn't clog. So they found a vein in the thick part of my right forearm, about three inches towards the hand, versus the inner fold of the arm at the elbow where people with healthy veins are usually tapped.

I asked the nurse about the likelihood of my veins returning to health. It does not sound promising, sadly. C'est la vie. Difficult-to-find veins scarred by chemotherapy are not going to kill me, and I have long since learned to accept that the "new normal" is a life replete with little inconveniences.

(a real-time note: the delightful doctor with whom I just checked in to make sure I could tolerate the anesthesia for the biopsy just asked if i was related to Dick van Dyke...but was astut enough to note that this was probably not the first time I had been asked).

Anyhow, while I was not successful in getting them to use the port for the blood draw, I was able to have them access it for the tracer used in the PET scan, and I will use it for the sedation today, so that saves a couple of IVs. I also refused the use of contrast for my MRI. They use it sometimes to make the brain easier to interpret and I have had it before. But there was never any myeloma involvement in my brain (thus, my questionable brain function must have another source) so I don't feel compelled to do this often, particularly since I am in remission (knock on wood that it hasn't been lost) and since I heard a rumor on another blog (albeit one that advocates curcumin rather than treatment) that the tracer is bad for you.

Which brings me to this morning. Checking into the hosipital for the first of two pre-op consults, in the waiting room I was treated to the thrill-a-minute joyride that is closed circuit television coverage of the swearing in of the eight recruits comprising the new additions to the Little Rock police force. I was just about to listen to the moving convocation delivered by either the city sub-comptroller or dogcatcher (it was difficult to discern) when I was called in.

I did see a more thorough blood analysis from yesterday's pull (more labs were finished) and the numbers look good, though still no M-protein numbers. But B2M was a mere 1.4, the lowest it has ever been. Protein is 5.9. The graph looked good as well. My liver numbers are essentially all in range (AST's range is essentially 15-50 and I am at 52) so the amount of water I am drinking must be helping combat the effects of Lipitor, chemo, and wine.

More news at it becomes available.

Nb it is FREEZING here. Literally. 23 degrees as I drove in this morning!