Still around and doing well

 Hello friends.  And to those new to the MM journey who might be finding this blog for the first time.  It is, after all, almost two years (!!) since my last post and I don't presume that those who were hanging on every post during my treatment necessarily are still here.  But insofar as I still think my experience can be of use to the newly diagnosed, I wanted to check in and update things.

I remain in complete remission, having been off all meds now for...lessee....8 years?  9 years?  COVID meant that I had to cancel my visit back to UAMS last year for the annual bone marrow, PET etc. but I have had numerous blood draws back here in LA and they are all squeaky clean.

Retired doctor (BB):  "You're cured."

Doctor I see in Arkansas (FVR, fantastic):  "It is very unlikely that you will experience a recurrence."

Doctor I see every few months for blood work in LA (BV, fantastic):  "You are continuing to be in a curiously long remission."  

I'll take what BB says -- he's the "girl I brought to the dance," so to speak, and other than the fact that he is retired, I'd still be seeing him.

I have no regrets about my treatment decision.  I'm very fortunate.  I have some lasting effects from treatment (I miss the 15 pounds of lean muscle I used to have, my GI function isn't great, I don't sleep as well and this stupid squamous carcinoma that wrecked half of my index finger's nail bed is a reminder of what I went through).  But if you'd told me at diagnosis in October 2008 that I'd be around almost 13 years later and basically untroubled by Myeloma, I'd have considered it a huge victory.

When I was diagnosed and going through my options, I saw a well regarded (not one of the top 20 but solid) doctor in LA (not BV).  My wife and I were thinking of our then-five-year-old daughter.  The doctor went through his "you don't need aggressive treatments, we can control the disease" spiel.  When he was done, my wife said "will [Nick] be around to see our five year old daughter graduate from high school?"  The doctor said "that's a bit too aggressive."

Well, my daughter graduates in 9 days.  

We are human beings, not statistics.  That said, let me be an example of successful aggressive therapy.  As more and more therapies arise that are less invasive and work reasonably well, I think even fewer people are looking to Total Therapy with its double transplants and cocktail of multiple solid tumor chemo agents for their options.  When you're 75 and want 7-8 more years, those are good solutions.  When you're 40 at diagnosis, like I was, you want to try to get rid of the disease.  Or at least kick it in the teeth for a good long time.  13 years is a good start.

One last thought: RIP Charles Grodin, who passed away after battling Myeloma for quite some time.  He was 86, and I read that he was diagnosed in 2009 which means around 11 years of living with the disease. Midnight Run remains one of my favorite movies.  He was a marvelous actor.  I'm glad he made it to 86!

Be well, everybody!

Hello there! A long-overdue update.

Hello friends and other interested parties. I apologize for the long absence, but I'm happy to report that continued good health means a full return to life with all of its attendant responsibilities and time-sucks. :)

So as not to bury the lede, I remain in good health -- although I'm undergoing follow-up tests this week so I'm hoping that remains the case as this is the longest I've gone (six months) without detailed testing.

The other big news is that my beloved Dr. BB -- Bart Barlogie -- has retired. So I'm about to undergo my first serious round of follow-up with a new "quarterback".  Thus, I find myself back in Little Rock, with some familiar faces amongst the administration but a new doctor, Frits Van Rhee.  I'll call him FVR to save time rather than anonymity. :)

The decision of whom to see was not an easy one; there are many specialists closer to home (and after a travel snafu that had me driving five hours from Dallas to Little Rock yesterday, some of them seem more appealing) but I'm sorry so say that Total Therapy is not the standard of care for this disease, as science looks to new drugs to provide an easier path to long-term remission. Never mind that I'm sitting here more than 10 years from diagnosis with an expectation that the disease isn't coming back...

At any rate, it was important to me that I be seen be a doctor who has treated people with Total Therapy and has experience following up patients that have undergone the treatment. As an example, at some point (possibly even now) I need to be more concerned about the possibility of leukemia from the chemotherapy than I need to be about my myeloma returning.  So this narrowed it down to a handful of doctors across the country.

I know that BB holds FVR in high regard, and I'd been on a panel several years ago with FVR. He's probably treated more patients with Total Therapy than any doctor currently practicing, now what BB has retired. Plus returning to UAMS also allows me to track my progress along with the hundreds of total therapy patients (and more specifically the dozens (?) that were in my specific cohort). The value in this is that I can see if anybody has relapsed rather down the curve than me.  If, as I hope is the case, 95% or more of people once they reach the 10-year mark remain in remission several years later, it looks better and better for my own long-term outcome.

They're calling me soon, as I have to re-enroll here so it's like I'm a new patient. Maybe not the most efficient administrative approach but as long as they kept my stem cells, I'm happy with these nice folks.

I will say that I forgot how sleepy this town can be. Going to New York for follow-up the past three years has been a bit different. I got into town at 7:30 and could barely find a restaurant that was open. God wants people to eat on Sundays, too!!  :)

Today I have blood work plus a bunch of tests. Bone marrow is tomorrow. PET and other tests are Wednesday, and the doctor is Thursday. More to come.

I am profoundly thankful for my good health and for BB. For those following along who were also patients of his, I should say that I have been in touch and he seems to be doing well. Selfishly, I wish he was practicing but he's 78 now, I think, and has earned a rest.

An update (all good), some reflection (humbling) and some "how to read your labs" stuff

Hi there everybody! I'm sorry that I've been off the face of the earth here for some time. I think you can chalk it up to a lack of interesting news to report. I continue -- as far as I know -- in stringent complete remission including a resolved MRI, which is as good as it gets. I am scheduled to return to Mt. Sinai in May to undergo standard-issue follow-up testing. My local oncologist is retiring in April, so I will need to find a new person here to follow me more closely. I do have concerns that Dr. Barlogie may retire in the next few years and I have to consider carefully where to go for follow-up. That will be the subject of a future post, perhaps, as part of an overall reflection on the fate of Total Therapy in a post Bart world. :)

So that's the news on me.

I'm humbled because in January of this year, not one but two of my dearest friends were diagnosed out of nowhere with dire conditions. Both otherwise healthy, both relatively young (52, 53), both watch what they eat, neither smokes, both are fit. One of them had a headache out of nowhere that wouldn't go away and three days later learned it is a stage 4 glioblastoma multiforme (terminal brain cancer); the other who was literally helping me with the first friend two weeks ago lost feeling in her left arm and went for a PET and they found she has stage 4 fully metastasized lung cancer which has involved almost every body in her body, her kidney, her liver, and her brain (that was the losing feeling part). She appears to be VERY fortunate that she falls into a category of 4-7% of patients with small cell lung cancer that have a particular type of genetic mutation that responds to a just-approved FDA drug. It will at least buy her time...for a moment there it looked like she might have just a matter of a few weeks.

The message here, for Myeloma sufferers, is that as horrible as our condition is, it is not a death sentence. It is a challenge, and some of us will be unfortunate and have adverse characteristics to our disease, but most will be able to manage the disease for several years even with conservative treatment that isn't pursue with cure in mind, and with the pace of progress, in several years there will likely be more cures. It's a terrible condition, to be sure...but it's not stage 4 brain cancer and it's not stage 4 metastasized lung cancer.

So 1. as bad off as we have it, it could be worse, and 2. hug your loved ones. Life is precious and every day is a gift.

Here endeth the dime-store philosophy.

I have been chatting with a number of newly diagnosed patients recently, and just this morning a friend pinged me out of the blue since he just learned that a close friend of his had been diagnosed. That person (as we all do / did) has a steep learning curve, and as I was going to explain to her how to look at her labs, I thought I might as well do it here, since it might be of service to others, and since it gives me an excuse to update my blog.

So here goes. I'm rusty, so if people out there want to correct me if I screw up, I won't be offended. :)

Our immune system contains a spectrum of protein in the blood and bone marrow, called immunoglobulins, that help identify and respond to enemies of the body (viruses, bacteria, fungi, etc.). These proteins are measured in the blood.

Myeloma is a disease that occurs when one cell in this spectrum of proteins malfunctions, and begins to replicate out of control, eventually crowding out the healthy purposeful parts of our immune system and indeed our blood supply. It also has the impact of destroying bone tissue, both by interfering with certain processes of normal bone regeneration and by setting up shop in the marrow and establishing tumors that eat the bone tissue.

Myeloma is many different kinds of disease, based both on what part of this spectrum of proteins contains the malfunction, which part of the individual protein has gone wrong, and then the nature of the genetic mutation that triggers the problem. The last of these is the most complex and most indicative of how well existing treatments respond to the disease. Let's break this down as best we can.

The spectrum of immunoglobulins are sorted by various names...alpha, beta, gamma, delta, etc.  So the first designation of Myeloma is according to this system. IgG, for example, indicates that the malfunctioning protein is in the gamma region of that spectrum. It's the largest piece of immunoglobulin spectrum and is the most common form of the disease. I had IgG myeloma, for one.

Next, the disease is described according to what part of the protein is corrupted. An antibody molecule can be considered to look like a Y. The trunk of the Y is called the "heavy chain" part of that molecule. Each of the little stems from the Y are the "light chains" of the molecule. One is called lambda, the other is kappa. When cels go through a normal lifecycle, they die and vanish from the blood. However cancerous cells will not go completely away -- there will be a growing residue of light chains observable in the blood (and the urine) that correspond to the nature of the cancer and what part of the molecule it effects. So the second designation of the disease is either lambda or kappa depending on what part is effective. I had IgG Lambda. Lambda is slightly more common than Kappa, but the designation has no bearing on prognosis.

Lastly, and most importantly, the disease is described through an analysis of the genetic structure of the cancerous cells. The process of analyzing this is called cytogenetics and it is incredibly complex, and I will leave it for another post. But the real determinant of how aggressive or treatment-resistant a person's Myeloma might be is found in the genetic code of the cancerous cells.

Okay, so how does a newly diagnosed patient recognize what's going on in bloodwork and where the Myeloma can be tracked, as well as its impact on the body?

The primer for that...will be in the next post, probably this evening. :)

Latest lab results...all good. Plus an interesting side effect of Zometa.

Hello, friends! I hope that this blog continues to be of interest to some, even though updates are less frequent. Live chugs along, with family, work, good wine, bad golf and music. And in the background noise there is my diagnosis, not yet completely excised from my life but relegated to a minor role at this point as I continue to wait out the 10-year "all clear" whistle that will arrive in September, 2019.

On that note, most recent labs are negative for myeloma and everything looks good. For those into super detail, my IgM (one of the protein types that gets clobbered with transplants) remains low and may never recover, but IgG (where my bad protein resided) and IgA are normal and my immune system appears to be working fine.

I have spent the last couple of months in a state somewhere between inconvenience and agony from what turns out to be a pinched nerve. It came out of nowhere in December before a family trip and it effectively sidelined me from what was to be a full week of activities in Hawaii. It was actually pretty painful, requiring serious painkillers to get even 3-4 hours of sleep. Tests indicated it was a nerve with the likely culprit being C5-C7 vertebrae, and sure enough the MRI showed two bulging discs pinching the nerve there. The only real solution is time and physical therapy, unless I was spinal surgery which I was advised against since it only moves the stress to other vertebrae, and limits range of motion.

Bear with me, as this has some useful information for those on bisphosphonates...

So I learned that nerves don't just sit there in your body -- they are directed through the body through "ports" in bones near the spine (presumably the shoulder area). When the body moves, the nerves need to be able to slide freely through these ports. I've got bilateral narrowing of these ports -- from the bisphosphonates. It's not a problem on my left side, but on the right side, it's an issue, and combined with inflammation from the irritated nerve, it's accentuating the issue with the pinched never. Something to consider.

There are all among the "high class" problems that I waved away at the time of my diagnosis, and I continue to be very thankful that I'm worrying about such trivialities.

For the moment, I'm on anti-inflammatories, plus Gabapentin for nerve strength (odd that I never took this during primary therapy, but I was fortunate and never experienced much neuropathy). This, plus the PT, will hopefully be enough to set things right.

I plan on returning to Mt. Sinai in late June or early July for my next follow-up with Dr. Barlogie, who is now licensed to practice in New York, which is terrific. I will likely have another set of labs to report on in the meantime. Otherwise, steady as she goes!

I continue to be thankful for the opportunity to counsel others with Myeloma; I still speak to anywhere from 5-10 patients a week. Please reach out to me if you need help!

RIP William Peter Blatty -- and the Devil in the Details

Hello friends, and Happy New Year.

I'll post sometime soon about the pinched nerve issue (more painful than it sounds) emanating most likely from my C5-C7 spine. I've seen issues on MRI before but they've never presented symptomatically until about a month ago. But that's for another post.

I was struck by the recent passing of William Peter Blatty, a name which may only be peripherally familiar to some. He was the author of The Exorcist. He died at the ripe old age of 89 years. It was from Multiple Myeloma, and he evidently went from diagnosis to death in about three months. 89 is a long life to be sure. Nonetheless, it does tickle the viscera unpleasantly to hear about Myeloma as a cause of death.

For those that don't know, it may seem ironic that Blatty was a devout Catholic. The book, with all of its horrific and blasphemous material that was brought to life in what I still think is the most terrifying film ever made, was denounced by some as evil and most likely is to this day by a subset of the religious right (I do my best not to travel in those circles so I'm not sure but it's a pretty safe bet). And yet Blatty's stated purpose in the book was to bring people to God. By exposing people to the reality of evil and the horrors of the Devil, they would be introduced to faith. They would be shocked and frightening into considering the possibility of God. And if one looks at the movie, beyond the vomiting pea soup and the spinning heads and the terrifying appearance of Regan McNeil, the story is fundamentally about Father Damien Karras, who lost his faith and regained it in the face of evil. This story was continued in the true sequel to the book, Legion, which was made many years after its publication into the true sequel to the movie, Exorcist III, with George C. Scott taking over the role of Detective Bill Kinderman, who was played by Lee J. Cobb in the first film (funny -- maybe having an important middle initial was a critical element in the casting decision). In that film, just like Karras did in the firs tone, George C. Scott finds belief in the face of evil.

I wrote in this blog during my treatment about this concept known as the Noonday Devil -- the voice whispering in one's ear that the struggle isn't worth it. I wrestled with that at one point where I wasn't seeing the progress in the therapy that I was hoping for. I managed to get through it -- I was fortunate (or blessed, depending on one's spiritual inclinations or lack thereof) that I responded to therapy and put this behind me. It was an important enough moment that I wrote a song about it for my band's 2011 record This Mortal Coil. And at the beginning of that song, there is a sample from the Exorcist III.

So while I started this post thinking William Peter Blatty's death was of interest because of Myeloma, I'm ending it realizing there may be a deeper connection.

So as not to be too heavy, I'll end this with a very funny little anecdote that I recently learned of from a friend of mine. It's Blatty recounting an experience he had shortly after the publication of the book and it's hilarious.

When I worked at BMP, the Head of Television commuted in from Brighton every day.
He started reading The Exorcist on the train.He said he thought it was the most evil book he’d ever read.If fact, he said it was so evil he couldn’t finish it.So, at the weekend, he went to the end of Brighton pier and threw it as far as he could.So I went to the bookshop.I bought another copy.Then I ran it under the tap.And left it in his desk drawer.For him to find.

Happy holidays -- a quick update

Hi folks.

I've not updated this page in what seems like ages, mostly because there hasn't been that much that is interesting. However, a couple of you have been kind enough to reach out -- which I very much appreciate -- so let me say that I'm doing fine and here's a very quick update.

* I'm now seeing BB at Mt. Sinai in NY, where there are hitches relative to the extremely well-oiled machine at UAMS but which is improving. There are very good people there.

* I had a checkup there about three months ago -- my second in NY -- and everything is clean as a whistle. They do not do MRD testing; they do a kind of "deep sequencing" analysis which shows no Myeloma but a gene that is switched on that could, if all the dominos fall in a certain direction, lead to a precursor to leukemia. This could be a result of all the nasty treatment I had, or it could be absolutely nothing as by the time we age, 20% of the population has this same propensity. For the moment, there's nothing we can act on even if it IS something bad, so we soldier on.

* There was some nastiness afoot this past year when an organization similar to NICE in the UK tried to prescribe a single path of cost-effective treatment for Myeloma. This effort was backed by Mayo, unfortunately, under the heading of making treatment available for more people (paging Dr. Sanders, Dr. Bernie Sanders) but thankfully the organization backed down in the face of opposition from patient rights groups and patients themselves. For the moment, they agreed there can be no single path for therapy.

* I had more tissue cut out of my right index finger, which turned out to be negative, over scares of a return of the squamous cell carcinoma that was a side effect of the VRD treatment I was on. As I said, after digging through my poor finger's nail bed not once but TWICE, it was determined that there was no cancer there. So now I'm without a nail, but once again it's a tiny issue relative to everything else that could happen.

* I return to NY next summer, date TBD, for regular follow-up, and continue to be monitored locally on a more regular basis.

* I remain active in helping others with the disease and am pleased to be contacted by people that find this blog. Please continue to reach out to me if you need help.

That's pretty much it -- onward with life! Happy holidays to you and yours!

Warm regards,

Nick

Continued sCR...and the coolest thing Donald Trump ever said!

Well, I was wrong about the number of miscues here. It was a little chaotic, in part because I don't yet know the ropes myself in terms of who speaks to whom and how things work, but in general, things went well due to a combination of my usual lovable whining and Bonnie's hard work.

The port was accessed and all labs were done from it. I had to get them to leave it in -- normally they don't discharge people with the port accessed. But the first time, I was successful. I got my EKG and chest X-ray done. They tried to tell me I had a PET scheduled at 1PM...which was not possible because I had a meeting I had to attend, so no dice there.

I returned for my MRI at 6:15 in the evening...and this took a long while. I waited over an hour before I got put in the tube, and they did MRIs of my hips and spine which took nearly 90 minutes between them. These scans are MUCH quicker in Little Rock for whatever reason. But they had some headphones so I could at least listen to the radio for some of it. It was a little challenging because I had some discomfort in my lower back, but I managed.

I went back the next day for bone marrow, and they weren't able to use my port for the propofol for whatever reason (it was very professionally done, this whole thing, but it was much quicker than Little Rock -- I was surrounded by about five people from the moment I got my gown on and there was no dead time between walking out of the changing room until I was about to get knocked out. They started a regular IV, I got knocked out and woke up with a doctor saying I was right to get sedated because "you have the hardest bone I've ever encountered and I had to push incredibly hard to punch through." Sounds like the type of thing I'd like to not be awake for.

Yesterday was spent working, although they tried to get me in for a PET (by this I mean they called me and informed me I had missed an appointment...but nobody bothered to tell me I had one and I couldn't have made it anyway).

Today, I saw Barlogie. MRD results are not in yet, but I am immunofixation negative, light chains are good, bone marrow is clean, etc. Interesting, the MRI shows a lot of crummy stuff going on with my back (mostly a result of aging plus the crushed vertebrae, so I have compression fractures and stenosis, etc.) but the MRI did NOT show any former lesions. I suspect they simply missed them, so Bart asked the tech to review it again. If they are gone...then I am in what Bart would call "MRI complete remission." Which is the closest thing to definitely being cured that there is. Bart also used to call this "Arkansas Complete Remission" and I noted that he'll have to change that -- we decided on "Barlogie Complete Remission."

Speaking of Arkansas, I'll now probably send them the materials we've collected and if the MRI is clear, I will do a phone consult only. If the MRI is not clear, I will go there and get the PET and FNA, if possible.

And also speaking of Arkansas, how cool is this? Even if you can't stand The Donald, watch the first couple of minutes of this speech he just gave this week to 12,000 people in Little Rock.

https://www.youtube.com/watch?v=VZDB1sYL-f8&t=119m58s

Hello from NYC

Hello friends. I'm sorry it's been so long between updates -- things have been rather busy with my day job of late, as well as my hobby. That and general good health make for limited updates here.

In part, I didn't update anything on my decision about whether to continue to be seen by the folks at UAMS in Little Rock versus following my beloved Dr. BB to Mount Sinai here in Manhattan because I hadn't yet made a decision. And in a sense, although I'm currently sitting in a waiting room on the upper east side of NYC, I still haven't.

My primary concern with following Dr. Barlogie is that he is no longer the big fish. He is on the staff of his former colleague Dr. SJ, and things will roll along here in large part consistent with the existing culture. This means it's been very hard to schedule (though a change in my insurance carrier didn't help either). I'm trying to do something very simple and in sequence: access my port for blood and other dirty work, get a PET scan (using that port for the tracer), get by knocked out one time, have a bone marrow biopsy and a targeted fine needle aspiration guided by the PET to sample any unresolved lesions in the bone, and talk with the doctor.

The over-under on things that go wrong with that plan is four. I suspect I will leave here without the fine needle aspiration done, for one thing, and that I'll be stuck full of holes anew. Having established those odds...I'm still leaning towards taking the over.

For this reason -- and because after all Dr. BB is in the third act of his career, so to speak -- I'm reticent to pull up all stakes at UAMS. I want to keep a foot in both ponds, at least until I see how things tick up here in NYC. So I'm leaning towards getting my testing done here and then doing a phone consult with the folks at UAMS, versus having two sets of tests done.

We shall see if that is permitted.

Meanwhile, I'm waiting to be called but I already miss certain "homey" touches from Arkansas. I was counting on a tissue and a cup of coffee and they have neither, and the familiar faces from the infusion center at Little Rock are of course missing.

On the other hand, I have more food choices this week than was the case in Little Rock. And I have a fair amount of work I can get done in this great city. So onward we go, with a foot in both ponds for the time being.

Real-time update: a big hug from the irrepressible BJ has just made everything seem great here. :)

A long over-due mini-update!

Hello friends.  Sorry to fall off the face of the earth there for a bit.  I have some good excuses -- I've been helping to launch a new business for my employer,  I've finished work on my bands next album, and of course I have my adorable family with whom I try to spend a little bit of time.  Oh, and I also play a fair amount of golf.  Poorly.

Not to bury the lede [sic], recent bloodwork (last week) shows that I remain squeaky clean.  So that's good!

I will post something more detailed on my decision as to where to be treated in the coming weeks, but as of now I think I'm going to return to UAMS per schedule, but go to Mt. Sinai in NYC in January as a second opinion at this stage in my treatment so that I can get the perspective of Dr. Barlogie and see his new location.  I don't think it's possible for me to choose one or the other until I see the center in New York and assess the degree to which BB can continue to monitor and treat me in the manner that he did at UAMS.  Meanwhile, I do have a tremendous sense of continuity with his former colleagues in Little Rock to consider.

It's a high class problem, seven years after diagnosis, to be around mulling this over!

I've been traveling a lot for work and I'm not sure if I'll have time to update before I get all my appointments scheduled, but that should happen before the end of the year (it certainly BETTER as I'm planning to see them both in January) and I will update again at that time, or earlier if events merit.

Happy holidays in advance to all of you!

Dr. Barlogie's new digs

Hello friends.  Sorry to be radio silent for a bit -- have been fighting other fires.

I will be posting my thoughts on my own decisions and next steps in a couple of days; I wanted to keep the focus on this post on Dr. Barlogie's upcoming move.

It has been rumored and discussed elsewhere, and I mentioned it here last month, but now I have been asked to formally note that Dr. Barlogie will be joining the staff of Dr. Jagannath at Mt. Sinai in New York, where he will start to see patients in September.

Bart will be bringing along a fair number of his patients with him.  He is excited to be reunited with Dr. J, with whom he worked at both MD Anderson and UAMS.  However, this is Dr. J's show -- Dr. B will be taking a less central role than the one he has had at MIRT.  He seems comfortable with this, which is important -- he has very little if anything to prove clinically at this point; his motivation to continue practicing is based primarily on his commitment to his patients and his desire to eradicate this disease, but is of course influenced by his comfort with a new role, environment and culture.

He and I discussed how Mt. Sinai, which already has an impressive team, is dedicated to building a world-leading research capability in Myeloma.  It sounds like a good place for Bart to be heading for that reason alone, leaving aside his long relationship and mutual respect with Dr. Jagannath.

As his friend, I am happy to see him land someplace where he can continue his work.  As his patient, the two key questions remain for me: (1) how much institutional support will he have from Mt. Sinai -- not just for research but for clinical activity (e.g., if I need a PET scan on a few hours' notice, will that happen?); and (2) will Bart have access to trial data including not just his current patients but all work done in the TT program.  The answers to these questions will help inform my future treatment decisions; I'm not sure the answers can be had prior to Bart's arrival in New York.

More to come on my own situation in the next few days, but in the meantime, I awake every day, conscious that I'd be in pretty dire straits -- assuming I was even still alive -- had I not been treated by Bart.  Eight years ago I had no idea, but MM was already hard at work, damaging my bones.  Seven years and 9 months ago, I was diagnosed.  Today, I'm in stringent complete remission and am MRD negative -- as good as I could possibly have hoped for.  So here's to Bart, basically -- to a new chapter and a continued record of clinical and personal success!

A frustrating, painful and expensive waste of time

Well, the good news, I suppose, is that with the help of that lidocaine creme and a very skilled nurse my port was accessed this morning.

The long and the short of it is the bone marrow biopsy hurts a lot more than usual, and the FNAs didn't get scheduled.  It's maddening.  It's not like I didn't tell the schedulers for weeks in advance that this needed to happen.  I sent meticulous email after meticulous email.

I had dinner with Dr. Barlogie and his right arm BJ last night and she tried valiantly to move things around last minute but to no avail.  Everything is booked.

The MRI is completely unchanged from before.  No resolution of remaining lesions.  And now, no way to get at what's inside them.

I came out here for absolutely nothing other than a conversation I could have had on the phone with Drs. Barlogie and Morgan (both occurring tomorrow).

It's infuriating, actually.  And the fact that I'm in pain and the damn MRI is unchanged isn't improving my mood any.

It's not a well kept secret at this point but as I didn't want to blog about it until I had been given approval to do so, Dr. Barlogie is indeed moving to Mt. Sinai Medical Center in Manhattan in the next couple of months, where he will join the staff of Dr. Sundar Jagannath, with whom he worked thirty years ago at MD Anderson before Dr. Barlogie left there to start MIRT here at UAMS, with Dr. Jagannath joining him.  I'll post more about this when I'm not so tired, in pain and angry.

Frustrations continue -- a partially wasted trip

So I never was able to get the port accessed today.  I did meet with a great guy who I'm going to call out here (sorta) -- one of the physicians assistants, JA, who has been a fixture here over the last several years and is an extremely kind and attentive man.  He oversees my case so today I explained the port access issue and he managed to prescribe a numbing cream and we'll try again in the morning.

Meanwhile, though, ALL the work I did to line up a very meticulous series of tests was evidently ignored.  We know we are looking for the lesions in my spine to resolve.  The last time I was here we determined that if they hadn't resolved yet, they would stick needles in my spine to pull bone marrow out of the spots and assess what's inside them.  This, as well as meeting with Drs. Barlogie and Morgan to help determine where I show up in a few months, was the point of my visit at this time.

I explained this to two scheduling nurses plus other people in the administration along the way as we scheduled my visit many weeks ago.  I probably communicated this to five people.

Instead, we have MRI only.  No time to get any other imaging required, no time to assess the MRI before acting, no bone marrow work besides the standard biopsy.

In other words, a wasted trip.  If the lesions are healed, great -- I'll celebrate.  Got some very good wine that I've been saving for such an event.  If the lesions are not, however, then all we've done is kicked the can down the road, and these tests (and the trips themselves, by the way -- airfare and hotels are not free) are not cheap.  I could have gotten an MRI on the spine around the block from my house (metaphorically speaking).  I didn't need to fly across the country for it.

GRRRRR!!!!!

When I sat back down in the clinic this afternoon, the blood pressure was even higher than it was this morning.  JA kindly offered me something for it.  I declined, but if things don't go more smoothly tomorrow I may accept.  I don't want to die of a conniption fit whilst trying to beat cancer.

Nicolas and the No Good Very Bad Day

Well, after a long day of travel yesterday I'm in Little Rock.  It's been a pretty lousy morning.

For a number of reasons I'm under a lot of stress right now.  So the hit parade began with a blood pressure reading of 148/110.  That's a new personal best.  Not in the right direction.

On the other hand, I was on time for my appointments -- always important but particularly important today as there is a lot back-to-back.

I got to the infusion clinic, my smiling and cheery self.  A nice nurse introduced herself.  I had requested some additional tests be run (immunization titres, the full cholesterol panel, etc.) and this had to be double-checked but we got that under control after a little investigation.

The lady tried to access my port, twice.  The first time was vey painful.  The second time was even more very painful.  She couldn't draw blood.  She capitulated and found a second nurse.

The second nursed confidently jabbed me.  The needle went in.  It hurt a lot.  They were unable to draw blood.  They put heparin in, and it went in, but nothing came out.  They tried again, nothing.  They then ordered another drug (Activase? could that have been it?) and I waited while that arrived.  It got there.  They adminsitered it.  We waited the requisite 20 minutes.  They tried to draw blood.  Nothing.

I'm getting pretty irritated by this point.  I went to go to my next appointment and told the nurses I would have to come back later. 

I got to the next appointment and they couldn't find me.  It's just as well, because I'd been kept so long that I was over an hour late.  In fact, I was late for the appointment AFTER the appointment.  So I went to that appointment.  The line to check in was enormous.  And the MRI was looming in 30 minutes.  So I left.  I don't need a pulmonary test right now.  I am mindful, dear readers, that I'm only here now (versus September) because Dr. Barlogie is departing and I wanted to see him one more time and also talk with his successor as the head of the instititue here, Dr. Morgan, to determine where I would be treated.

With 30 minutes remaning before the MRI and nothing to do, I went back to the infusion clinic.  A new nurse determined (based on redness and swelling) that the needle had been inserted incorrectly and the heparin and whatever else had been pushed into the surrounding tissue rather than the blood.  That would explain the pain and swelling.

I am at this point pissed off.  I hurt, my blood pressure is through the bloody roof, I've missed two appointments and I'm no closer to having any labs done than I was before I showed up.  Well I peed in a cup so maybe they can get some value out of that but otherwise this whole morning has been a waste of time.  Worse, because a simple waste of time doesn't involve the pain I'm in.

I'm not going to allow them to access the point again unless they numb the area.  There's a simple freezing spray that everybody else in the world can figure out how to get a hold of, they can damn well get a hold of it here.  I see a physician's assistant at 1PM on the other side of the MRI tests, and he can damn well prescribe this freezing spray for me or I am cancelling the whole battery of tests and getting on a flight tomorrow wihtout doing anything more than the MRI.

Screw this.  I don't need it in my life right now.

Relapses in Total Therapy give me the willies

With my return trip to Little Rock coming up in three weeks, I've been thinking a lot about what to do and upon the continued need for follow-up.  And I've heard this week from two people in my cohort (Total Therapy 4 Lite with standard/low risk disease) who had sustained remissions of several years and recently lost them.

This is not good news, obviously.

In both cases, the patients had unresolved formerly active lesions in their spines which were the only things that troubled Barlogie.  Both had tested negative for MRD in bone marrow, which speaks to the fallibility of that test.  MM is patchy in the marrow -- what's clean in one place isn't clean in another.

So I want those lesions to go away, basically.  I'm trying to work the logistics so that my lesions (if they are still there) can be punctured with needles to assess the marrow in those particular spots.  Not sure if they are accessible or not.

Continued resolution would be a good sign, but I'm afraid until they are all gone I won't be able to rest easy.  One of the patients who just lost remission had only a single remaining non-active lesion, clean blood and marrow for five years...and is now being treated with Carfilzomib.

The projected cure fraction from Total Therapy 3 -- which is essentially the *heavy* version of Total Therapy 4 -- has been adjusted down to 50%.  That probably means about 60% of low risk patients.  I will be a lower figure than that for Total Therapy 4.  50 percent?  40 percent?  30 percent?

I have to hope I'm one of the lucky ones.

This means that ongoing imaging studies are of vital importance to this disease.  As a patient, demand them.

A quick update from MIRT/UAMS

I received a letter today co-authored by Drs. Morgan and Barlogie that affirmed Bart is going to continue practicing elsewhere.  This is notable only insofar as it reframes the previous communique from Arkansas.

As I said, there are politics involved here that I want no part of.  All the complexities of my upcoming decision remain relevant.  More to come as events merit!

Decisions, decisions!

I've heard from a growing number of people asking for my thoughts on the changing of the guard in Arkansas, and how to think about treatment.  So even though it's too early to call, I wanted to at least explain some of the thoughts I'm having on the subject.

It's pretty clear there are three options: (1) continue being seen by Dr. Barlogie wherever he ends up, (2) continue being seen at UAMS / MIRT, or (3) change to a new doctor.

Beyond that clarity, the issues become a lot more complicated.

As we parse through them, remember that in my case, I've been through Total Therapy and consequently I am best served if I am seen by somebody who understands the purpose of Total Therapy and agrees with its intent (that is, cure) and, further, I am best served if I am seen by somebody who has seen many patients that have gone through Total Therapy as the long-term follow-up for patients like myself is very different from the long-term follow-up for patients that have gone through different therapeutic regiments and/or with different intent.

As an example: recurrence in somebody treated less aggressively means the disease has popped its head back up and needs to be whacked down again with something else; recurrence in me means that I have a type of myeloma that is resistant to the entire arsenal that was used on me.  Another example: maintenance for a typical patient would likely be a relatively low-dose of Revlimid for a long period of time (some trials have it continuing indefinitely).  Maintenance for me, however, would likely not include Revlimid (as I have had three years of it and it has probably done whatever it is able to do against my disease) but might include some kind of immunotherapy -- which would be tough to start in most trials right now because I don't have any level of detectable disease so how could they monitor its progress?  A final example: at some point in the next couple of years, I will reach the point where I am at a higher risk of dying from secondary cancers brought on by the chemotherapy (e.g., leukemia) than I will be from the myeloma itself.  Somebody who has not gone through my therapy might not be monitored as aggressively for Myelodysplastic Syndrome (as an example) if the treating physician was not as familiar with this issue.

Now, I could of course be the one demanding that my doctor does X, Y and Z -- but that's an odd dynamic and one that is unlikely to be welcomed by many doctors, or by insurance companies.

With this in mind, some considerations regarding my three options, as I see them:

Staying with Dr. Barlogie.  It's easy to see why I would want to do this -- Bart has saved my life and given me a reasonable chance at being cured and dying in 35 years of something else versus already being dead.  He understand Total Therapy better than anyone (having invented it, after all) and has treated more people this way by far than anybody else in the world (hundreds of patients).

Some considerations, though:

1.  Part of what makes Dr. Barlogie so effective is that he has been a big fish in the UAMS pond.  He has the full resources of the facility behind him.  If the PET scan machines are booked for a week, he can make a call and get one opened up in a day.  If a bone marrow biopsy needs to be reviewed in less than a day, he can get that done.  Will Bart have these resources behind him where he goes next?  Will the center invest themselves in him as UAMS/MIRT has done?  Dr. Barlogie is not 45 years old...they are investing in a doctor who is in the last quarter of his working life.  Moreover, the center has to be large enough to have the infrastructure required to support what Dr. Barlogie would want to do.  And yet the center cannot already have a big Myeloma fish, so to speak -- at least not one that is counter to the Total Therapy philosophy (which means anyplace, really, other than Iowa).  Mayo, as an example, would not displace its program to embrace all that Dr. Barlogie would bring.

2.  Is Dr. Barlogie going to be able to take his patient data with him?  There is TREMENDOUS value in being able to see the sixteen (for sake of argument) people treated with Total Therapy 4 Lite who had the same genetic abnormalities that I did, and look at see how they are doing.  Without this data, Bart is still Bart -- but the data permits him to do some remarkable things both in terms of research for the future and in terms of longitudinal analysis of patient outcomes.  How many patients still have unresolved formerly active focal lesions?  How long does resolution take?  Have they lost remission? Good luck answering any of those questions without the patient data.  So can Dr. Barlogie take this data with him?  Have access to it?  Or neither?

Staying at UAMS without Dr. Barlogie.  Dr. Morgan is certainly a world-class Myeloma physician, so that's not the issue.  The biggest issue with this alternative -- assuming that UAMS will maintain some kind of access to the patient data I mentioned above, and assuming (which seems likely) that MIRT will still have significant influence in the overall UAMS ecosystem -- is that there may or may not be doctors remaining who have significant experience in treating people with Total Therapy.  If Dr. Barlogie leaves on his own and the other doctors stay, I could be seen by (as one example) Dr. Van Rhee -- he's a brilliant researcher and certainly has seen his share of Total Therapy patients.  But what if he and/or other doctors leave, either to join Bart or simply on their own -- whether its their decision or whether Dr. Morgan wants to change things over more comprehensively?  This is an open question.  As I mentioned, I'll hopefully have the opportunity to chat with Dr. Morgan during my upcoming visit to Arkansas next month and will get his full perspective on my case and, more generally, his approach to follow-up with Total Therapy patients.

Moving to another Total Therapy Doctor.  There aren't many.  But Dr. Tricot in Iowa was a senior member of Bart's team before setting out on his own first at Huntsman in Salt Lake and now in Iowa City.  He likely has similar institutional backing as Dr. Barlogie enjoyed at MIRT, and he's probably treated as many or more people with Total Therapy-like regimens as anybody practicing, other than Bart himself.  He's been very kind to lend his perspective to my case over the years at a couple of critical junctures, I have fellow patients who speak very highly of him, and I've observed in him the same kind of passion that I see in Bart.  This is a great third option -- although Iowa City is the answer to the Jeopardy question: "What location is even less convenient to get to from Los Angeles than Little Rock?"

And there's of course the issue of insurance -- none of this is free, and my insurance company needs to either already cover the center where I might choose to go, or accept that it is a center of excellence...which could be hard to do if it is not established (as could be the case, for example, if Bart went someplace without a Myeloma program).  So this is another wrinkle that will need to be navigated, if I may be permitted a mixed metaphor.

So as you can see, dear readers, there's a lot upon which to ruminate.  Fortunately, I don't need to make an opinion right now.  I've got some stressors in my life that I need to try to manage so that this stupid beast stays good and dead (I think stress is what helped bring it on in the first place, along with Aspartame from too many Diet Cokes) so making a final determination on the matter of where to be seen can wait for a couple of months.  I will make it to UAMS one more time next month, as noted, before Bart stops seeing patients there.  I've no doubt I will learn a lot more about the options above, and while I will of course be honor-bound to respect confidentiality, professionalism and apolitical neutrality, I'll post what I can here as it becomes available and relevant.

Meanwhile, hopefully those of you emailing me for my thoughts can find the above to be helpful!

...and another update about the transition.

I received a very nice note from Dr. Morgan yesterday, affirming that he will continue Total Therapy and does believe Total Therapy cures standard-risk patients.  That's good news for me, for the hundreds of patients treated with Total Therapy, and for newly diagnosed and yet-to-be-diagnosed low-risk patients everywhere.

I am in the process of scheduling what will be my last follow-up with Dr. Barlogie in Little Rock, and will hopefully have the opportunity to also visit with Dr. Morgan while I am there to get his perspective on my case.  Obviously, I have no interest in getting involved in any politics -- Bart is my friend, and I'm mindful that I owe him my life...and I am also mindful that I have to do whatever best serves its longevity at this juncture.  :)

It's said there are no atheists in a foxhole -- I suspect nobody who finds him or herself in such a place is terribly concerned with office politics, either.

Separately, I also had the opportunity to look online at the specifics of my MRI.  It seems there are *seven* unresolved lesions in my thoracic spine.  Specifically, here's what the MRI says, and what we're hoping will resolve.

2. MULTIPLE SCATTERED FOCAL LESIONS WHICH ARE NOT EXPANSILE INVOLVINGTHE THORACIC VERTEBRAL BODIES AT T2-T5, T9, T10 AND T12. THESE LESIONSMEASURE BETWEEN 1-2 CM WITHOUT CANAL OR CORD COMPRESSION. NO EXTRASPINAL LOCATION OF THESE LESIONS ARE SEEN. THESE FINDINGS REMAINUNCHANGED WHEN COMPARED TO THE PREVIOUS STUDY.

Importantly, few doctors (including Total Therapy disciples) believe this necessarily means anything. Dr. Tricot and Dr. Zangari (both of whom worked with Bart, the latter of whom still does) stopped doing FNAs (fine needle aspirations) of these sites after they learned that in most cases the lesion was simply filled with blood. We'll see...I do know that another seven or so lesions, most of which were significantly larger, did fill in with healthy new bone so I'm continuing to give Bart the benefit of the doubt on this and look for that resolution.

Onward!

...and a quick update

Normally I would spread this out as my last post is a lot to cover, but two important additional tidbits.

Bart is "not retiring" but will be setting up shop elsewhere.  That settles that.  More news to come as it becomes available.

Also, I will be going to see him before he departs.  That settles that.

Now to schedule it all...

A transition in Little Rock

So I received a letter in the mail on the letterhead of Dr. Gareth Morgan, whom Dr. Bart Barlogie had hand-picked as his successor at UAMS.  Bart's intent was to continue treating his existing patients and to focus on research, but to stop taking new patients (except in very rare cases like referrals from his favorite people!) and to cease work on administrative responsibilities related to running the center (which I can imagine included fundraising, hiring, firing, dealing with the local and state and federal government, etc.)

Per the letter, Bart is "retiring from Little Rock."  The letter goes on to speak of the commitment to continued excellence in patient care.

I won't beat around the bush -- I was going to write that I suspect there is more to this than meets the eye, but in fact I *know* there is more to this than meets the eye.  I'll try to limit my commentary at the moment to what impacts me directly as a patient.

I will posit, however, two factors that I believe have gone on behind the scenes.  The first is that I'm sure it was of paramount important to Bart that the treatment philosophy of UAMS -- to wit, the belief that low-risk disease can frequently be cured through Total Therapy -- continue uninterrupted.  I was on a patient panel with the esteemed Dr. Morgan a few months back and unabashedly asked, out of my own self-interest, whether or not he would continue this philosophy.  He gave an answer that was a little more equivocal than I would have liked, focusing on individualized medicine, however this is both a very legitimate perspective and one that doesn't preclude the use of Total Therapy for those whose biology indicates likely success from that treatment approach.  So I was mollified.  I suspect, however, there is a divergence of opinion.  After all, Bart is an iconoclast.  If he weren't, I'd likely be blogging from the big Myeloma Center in the Sky at this point.  But if Total Therapy, which is part of his legacy, was going to be pushed aside in favor of the same type of treatment offered at other top centers (e.g., Mayo, Dana Farber, etc.) I suspect that would be the cause of some internecine challenges.

The other factor is something that I noted in a blog post some time ago -- or perhaps it was correspondence with another patient -- that Dr. Morgan may be running the center, but it's Bart's name on the wall in the clinic and as long as his motorcycle is parked outside, his shadow looms large.  If everybody saw eye-to-eye, it would be one thing -- but if there were differences in approach, I can imagine that additional challenges would arise.  A senior lab technician receives calls from the two doctors with conflicting instructions -- who does this technician respond to first?  A patient develops a complication -- the two doctors disagree on how to treat the patient.  A clinician might be presented with two conflicting instructions...who prevails?   I'm sure things are resolved before they reach the "instruction stage" so to speak, but I can imagine tension could be created.

Importantly, all of that is supposition on my part, but I do know that Bart isn't necessarily riding off into the sunset.  But there are many questions that arise for me, personally.

If Bart *does* set up shop someplace else, will he be able to replicate the capabilities of UAMS (insofar as the things I need, most importantly MRD testing and the full battery of follow-on tests)?  Will it be covered by insurance?  How long will this take?  It seems unlikely that it will be in place by September, since his last date at UAMS is August 28th (his last day to see patients in June 30).  Should I try to be seen one more time before he leaves?  Would this even be possible?

If he sets up shop someplace else but it doesn't have the capabilities of UAMS, do I go to him?  Do I stay at UAMS?  Do I go someplace else, like Dr. Tricot?  The first and foremost interview question for any doctor for me would have to be "do you believe Total Therapy can cure standard risk Myeloma?" and if the doctor says "no" or "maybe in a few cases" I have to find a different doctor.  This is before I even get to whether or not the doctor has seen enough cases to know what he or she is doing -- and by cases, I mean people that have been treated with Total Therapy.  My complications, side-effects, and expectations in follow-up are different than patients not treated with Total Therapy (in fact, more specifically, Total Therapy 4 Lite) and require that I be seen by somebody with significant experience with those types of patients.  How many doctors would be keenly looking at residual non-avid focal lesions under MRI to see if they resolve?  (answer: not many)   I need a continuity in approach.

If he doesn't set up shop elsewhere, will any of his coterie of doctors remain at UAMS and continue to pursue the "Total Therapy can Cure" philosophy?  I've been on a panel with Dr. van Rhee before -- he is more a researcher than a clinician but he would be philosophically consistent.  Dr. Zangari has been in both Little Rock and at Huntsman with Tricot and presumably has the same philosophy, although I've not met him.  But would either of them stay at UAMS if the philosophy changes?

And then there are the logistical questions.  I can get my medical records (presumably) without any issue, but what happens to the 6 or 7 bags of stem cells I have on ice there?  Most centers don't care for stem cells the way UAMS does -- I was told my Dr. Lill at Cedars Sinai that they "didn't have room" to store bags of cells post transplant.  If I need another transplant in the future, I need those cells -- it will be hard to harvest now after all the meds I've got.  So hanging on to them is pretty damn important.  Would a new center be able to store them and care for them?  Could I keep them at UAMS if I decide to be treated elsewhere?

Then there's the issue of Bart's research -- the twenty five years of data tracking Total Therapy patients, and most specifically the 8 years of data tracking Total Therapy 4 patients.  I could sit with Bart and say "I want to see how many people had an over expressed MYC gene at presentation and were hyper diploid with 3 or more cytogenetic abnormalities under FISH and a low-risk gene array...how are they doing" and he could pull up these people and show me how many remain in remission at a given point in time, and whether or not the curve for these patients appears to plateau (meaning no remission loss after a certain point).  If Bart moves, will he have access to that data?  If he doesn't, will UAMS still use it?

As you can see, this is not a simple situation.  I'm going to have to dedicate some serious consideration to what to do in the coming weeks.

All that said...I feel fine.  I believe that Bart's protocol worked on me.  And I want to see it through until even the most skeptical doctor has to admit that I don't need to fear a recurrence.  It was six years ago right now that I was going through my first transplant.  I achieved complete remission in September, 2009.  After ten years of continuous complete remission, most doctors would admit that I'm cured.  So that's 55 months and counting down...

I had hoped Bart would keep the wheels on the cart in Little Rock until after that point in time.  But we patients don't exist in a vacuum.  Doctors move on.  And in a disease as complex as this where there is no unified position on treatment, it can pose unique challenges for the patient community.

Regardless, only one way to go: onward!

Update from Little Rock

A mostly good-to-very-good checkup.

Highlights:

* It is FREEZING in Little Rock in January.  I never remember that and always pack as though it's going to be in the 60s.  Well it was 19 degrees last week and got as low as 30 last night.  Chilly!

* I remain in stringent complete remission.  No M protein, all markers normal except for IgM which remains low and is recovering post-transplant.  More on this below.   Most importantly, bone marrow is negative for any minimal residual disease -- the most sensitive test, of course.  I believe (though I'll need to check) that makes four random marrow sites over the past 18 months that have tested MRD negative.  A good sign, to be sure.

* The pits in my spine have not resolved -- they are unchanged from my previous scan, and number five, all sub 1cm and in the thoracic vertebrae.  I am going back on Zometa every other month to see if we can spur resolution.  Should that fail, I can likely look forward to fine needle aspirations of as many of them as can be reached with the needle (this was an issue before -- they have to go deep, evidently), and those aspirates subjected to MRD assessment.  We shall see.

* Insurance has, for the first time, been a real issue.  They rejected all scans.  I paid out of pocket for the MRI of the T-spine (ouch, to the tune of $1500).  I would have liked to see a PET and other MRIs but for now, no dice.

* I have experienced an uptick in Lambda free light chains -- they are still well within normal ranges but have increased steadily over the past year.  BB confirmed that this is likely just a sign of my immune system recovering.  Still, as FLCs increase before M protein does, it was one of those "this is probably nothing...BUT..." moments.  All that said, negative MRD trumps everything.

* I asked BB a number of questions.  Among them:  (1) Confirm that I did have cytogenetic abnormalities so that I can read the data to parse for my biology (yes, I did); (2) has my gene array returned to what looks like a patient without any MM whatsoever (work in progress); (3) is there a plateau among TT4 lite (too early to say but numbers do not appear to be plummeting, which I was worried about initially -- and in fact among those with my "subtype" (proliferation) there does appear to be a plateau; (4) should I get any other tests, like a heavy lite assay, to assess my condition or the depth of my remission (no); (5) are the rising LLCs cause for concern (likely just recovering immune system); (6) what should we make of the persistent former lesions in my spine ("why are those f*ckers still here?" he said as he looked at the MRI results...put me back on Zometa every other month, probably fins needle aspiration of remaining lesions in September to test specific marrow from those sites for MRD; (7) what is the plan for recurrence? ("I do not plan on recurrence."  me: "That's great, Bart, but I want to plan for recurrence."  BB:  "We would need to assess your biology at that time and look at whole genome sequencing and other analysis to inform our strategy at that time."

The upshot: steady as she goes, watchful and hopeful waiting, let's see if the Zometa makes those lesions disappear.