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.

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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.

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.