A Healthy Doctor Sam

"Honey... I Shrunk The Tumors!"

I've been doing very well, at least physically, since I got some steroids and then started the DNG chemo one month ago. The fevers, chills, and malaise that heralded the relapse of lymphoma around New Year's Eve have not returned at all, and I've felt good.

Of course, we've been somewhat in the dark about the effectiveness of this new therapy. I've mentioned before that it was just a wait-and-see for now, until Dr. H re-did my scans. For the time being, we were just relying on the fact that I felt physically well and that my blood tests were fairly normal.

Well, in the chase to keep up with my constantly sinking platelet count, I've had my blood drawn every couple of days the last two weeks. Incidentally, this showed that my liver enzyme tests had also crept up rather high. When I first relapsed a month ago, my liver enzymes were the only blood test abnormality that I had, and just barely (you will recall that this whole lymphoma problem presently lives in my liver). Normal is up to about 40 or so, I was in the 60's. Over the last two weeks, I've been as high as 280!

Here we are after a few weeks, hoping to see it go down from the 60's back to normal, and instead it had more than quadrupled. As usual, I was worried, and Dr. H tried to be optimistic. He pointed out that he wasn't going to jump to any conclusions, since while this could be due to growth of the tumors in my liver, it might have also been a result of the activity caused by the chemo. We would monitor it a little while longer, and as long as it went down rather than up, we'd sit tight.

On Thursday of last week I saw Dr. P (my new transplant attending), and Dr. H used this opportunity to re-check my liver tests. No change, still in the 250's and up.

On Friday, I got a call from Dr. H's secretary telling me that he had ordered a new set of CT scans for me to have done Tuesday morning before my visit with him. On the one hand, I was glad that he was going to look into this and figure out what was going on. But on the other hand, knowing that something here was concerning him enough to suddenly change his mind and act only left me more worried than before.

Tense. That's really the best word to describe how I've felt for the last 4-5 days. The worry and anxiety that I already had about this chemo failing were only exacerbated by anticipation of the upcoming CT scan. Every fleeting abdominal pain or discomfort (and believe me, I have a lot of those, with all the constipation and laxatives) left me paranoid. Was my liver totally gone by this point? Filled with growing gobs of lymphoma which were by now immune to all chemo we could throw at them? It may be true that we cancer patients have more hypochondriac tendencies than others, but for the last few days I was way beyond even that.

Tuesday morning I woke up at the crack of dawn to get myself to the MSKCC diagnostic imaging unit in mid-town in time for my 8:00AM appointment. By this point, nervous as heck, but ready to find out the answer, my only coping mechanism was distraction and avoidance of any thought on the matter. I read the paper, browsed the internet, and just tried to not think about lymphoma as I drank the awful-tasting, Crystal Light-flavored CT oral contrast dye for an hour. The same continued after the scan, as I traveled to the hospital and did the requisite waiting around for an hour before getting to see the doctor.

I ran into Dr. H once or twice in the office hallway before we finally had a chance to sit and talk. And it was after only a few brief pleasantries that he got right to the point.

"Your scan looks fantastic."

I just sighed outloud at that point, and put my hands on my head.

On the left is a sample image of my liver from the CT scan of 3 January. The green circle shows one of the lymphoma tumors in the liver--There were many more like this on other parts of the scan, maybe 10 or so in all. The right image is the same part of the CT, as seen on 12 February. Note that tumor is not really visible anymore. This was also the case with just about all of the other lesions in the liver. (click for bigger picture)

So I threw all of my worries from the last 3 weeks out the window. This chemo is working! It seems like Dr. H's alternate theory was correct, and these blood tests have just been elevated as a result of the liver tissue rebuilding itself, rather than from destruction by tumor. We're going to go ahead as previously planned and do two more cycles of DNG, and follow up with a PET scan after the final cycle to take a better look (the CT scan isn't sensitive enough to see the smaller bits of tumor that the PET can, nor to declare a remission). If all goes well, it's then straight into the bone marrow transplant.

The entire rest of the day, I was continually amazed by how much my mood had turned around. Not just compared to the last week or two, but even the last two months. I can't remember the last time I was this optimistic about the road ahead. Yes, the situation still sucks, but it suddenly doesn't suck nearly as bad as it could, and suddenly I'm actually excited again to beat this.

The Battle of 2008 Begins

My new year, it seems, is off to a very rough start.

I remind you that things had been progressing fairly smoothly recently--in remission, I was just passing a few weeks until time came again to try stem cell collection for a second time. The plan was to start Neupogen injections again on Thursday of this past week.

The week of Christmas, I actually went to Pittsburgh, mainly because I had nothing else going on, and also because I thought it would be a nice brief getaway and change of scenery. And it was both. On a brief break from my neutropenic diet, I spent several days on my own in my apartment, making great salads and other recently forbidden items. Unfortunately, due to the holiday week, most people that I knew were not around, so I didn't actually get to see anybody in Pittsburgh, but it was still nice.

On Friday of that week, I returned to New York to greet my friend Megan, briefly back from several months working in Kenya (and not a bit too soon, I'd say!)

However after a couple of days of hanging out with Megan, by Sunday I found myself too tired to keep up and was canceling plans on her, which I felt rather bad about. I even had to bail on some spectacular New Year's Eve plans that Alissa had made for the three of us.

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Sunday night, I was really tired and feeling generalized malaise, and began to have a fever too. By Monday, it was mild fevers all day. I called Dr. M's office, and his nurse told me that while I could keep an eye on the low fevers, if they did get high I should go to the E.R. and be checked out.

The fevers, as you'll recall, were worrisome during my chemo and the periods of neutropenia, when my white cell count was very low and I would be very susceptible to infection. That was in fact the reason why I ended up hospitalized in early December. But this time, I was a bit puzzled--being 5 weeks out from my last chemo, I wouldn't expect to have low blood counts at this point, and not so prone to random infections.

I had already cancelled my fun plans and resigned to New Year's Eve at home, but as the sun set, the fevers rose again, and I was at 101. So off to the Stamford Hospital E.R. we went, where I remained until 2008.

The fever work-up did not show anything remarkable; in fact by the time I was at the hospital, I had no fever, and my blood tests were basically normal. While there and waiting for everything to happen, I happened to develop a really annoying pain in the right side of my chest, which would get worse when I'd take a deep breath or press on my belly. We first didn't think much of this, but a slight abnormality of one of my liver enzyme tests, combine with the belly pain, lead the E.R. doctor wanting to rule out a gall bladder attack.

This extended our stay into 2008, since he ordered an ultrasound, and the technician had to be called in from home. By the time he arrived an hour or so later, my strange pain had actually gone away. But we did the ultrasound anyway, and it showed my gallbladder to be normal and not inflamed. Incidentally though, while doing the scan, he noted a couple of unusual spots appearing in my liver. I didn't remember anything like that from previous scans, but tried not to be alarmed.

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Home the next day, I had no more pain, but was still feeling awful. I still had fevers, though all low-grade, typically around 99 degrees and change. but it was just constant. And accompanied with some chills, sweats (yes, night sweats too), and weakness.

I spent the next couple of days in bed, eager to see Dr. M for my appointment on Thursday and to see what he thought. While the fatigue and chills were enough to keep me in bed and under the comforter, the fevers rarely broke 100, so I never actually had to do anything about them.

On Thursday, I finally saw Dr. M and filled him in on the events (he already had a heads up, having gotten phone messages all week).

"The first thing we have to to do is to re-stage you right away", he said without missing a beat as soon as he saw me.

"I'm hoping all you have is the flu or something, but you and I both know what this could be and we have to get a scan of you soon and make sure it's not something bad."

The doctor-to-doctor talk. I often feel like Dr. M is one to leave certain things unsaid, when he knows that I know.

Lymphoma as a cause of the fevers was obviously also on my mind as well, and also under the worst-case-scenario column. His acknowledgment of this worry was scary, but at least we were about to figure it out.

A few phone calls were made, and the office staff arranged a body CT scan for me that afternoon. I had the scans done, and met up with the family for lunch, before heading back to Connecticut a couple of hours later. It was in the car ride home that I got a phone call from the nurse. "Dr. M and Dr. H are here and have just reviewed your scan, and unfortunately it does show several lesions in your liver."

And there went my optimism.

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The day after, I was back seeing Dr. H.

"There are a bunch of people for whom I was really hoping for a great new year, and you were right at the top of the list. I'm really sorry that we are in this position now."

He showed me the CT scan of my liver. It wasn't just one or two spots; they were everywhere--dark circles all over the place, like soap bubbles--as big as three or more centimeters.

From remission just two months ago, I was now looking at a cancer that was not only back, but returned aggressively and was now all over my liver. I was stunned.

None of this was on my scan in late october, which was totally normal. He said there's no way to know whether this happened over the last two months, during chemo, or if it happened more recently in the weeks since the chemo ended. His guess was the latter--knowing the typical course of this disease, it is fast and aggressive, and he thought this has probably not been going on very long. All the more reason to fear the next few weeks, and the need to act fast.

Dr. H told me we have a couple of possibilities, but he also pointed out that either way, in this situation we were totally "out of the box", so to speak.

There's a new experimental drug called pralatrexate, or PDX, which is being developed specifically for relapsed or refractory T-cell lymphoma, which he thought has the most promise right now. It is in a Phase II clinical trial, and our first hope right now is to try this. There's just one snag, and it's that the criteria to be in the clinical trial includes a platelet count of 100, which for me is a really high number.

If not pralatrexate, the "Plan B" is another chemo drug combination called DNG. Also developed for relapsed/refractory PTCL, this one is not experimental, but it's also new, and who knows how well it might or might not work.

Before the end of the office visit, Dr. H did another bone marrow biopsy on me, and sent me home with three days' worth of high dose steroid pills. His hope is that the burst of steroids will sort of boost my metabolism, if you will, causing my body to make some extra platelets, and maybe bump me over 100 that I need to be in the clinical trial. I go back to see him on Tuesday, and see what happens.

The one good turn of events is that, perhaps because of the high dose steroids, I feel really well and energetic today. Got up at a normal hour, no fevers, and haven't been in bed at all. I'll take whatever I can get.

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So that's my first six days of 2008. I hope you've had a happier new year than I so far. I'm almost sure you have.

I'd like to try to explain how I'm feeling about all of this, but I don't even know that I can. "In shock" is really the only way that I can describe the last few days. It has all happened so quickly. Just as I was getting ready to think about being done with my treatment, ponder returning to my regular life, everything falls to the floor.

I've been fighting this battle against lymphoma for some time now, with some definite ups and downs. But for the first time, this part feels like losing.

I have to admit, I'm still trying to figure out how to be hopeful about the future. Right now, I think the most I can muster up is wishful.

Just A Little Boo-Boo

... That's all I had this time, just a little boo-boo.

I've now linked many times to the weblog entry entitled "Ouch!", wherein I described in detail the pain and suffering that were involved in the bone marrow biopsy I had last summer.

I was scheduled for a new biopsy yesterday, and I was dreading it. I had even emailed Dr. H earlier in the week to tell him my worries--He just said they did it their own way, and "the vast majority" of his patients thought it was okay. All week, I worried. And when I arrived, his nurse gave me a 1 milligram Ativan pill to take in the waiting room. Ativan is a sedative and anxiolytic, but any of you medical readers will know that a 1mg pill is but a drop in a very large swimming pool. This was more of an acknowledgment on his part of my weak will, than any actual help for the procedure, and so I took it with much hesitation.

It turns out he was right, once again.

The procedure, in his hands, was nothing compared to the last ordeal. Don't get me wrong, this was not just some little needle in the buttocks, and I don't want to go through it again anytime soon. I'd like to think I have a decent pain tolerance, and last year was unbearable. This time, it was totally manageable. They got four vials of marrow (it comes out like a thick liquid, red as blood), and a nice plug of bone--a sliver about an inch long! (that latter was the part that was unsuccessful last year).

And I just ended up with a little boo-boo and a square Band-Aid on the back of my pelvis.

--

The results of the bone marrow tests will take 1-2 weeks, but they are not really needed for us to proceed, so we're not waiting for them (a negative result is great; a positive result bodes less well for the overall odds, but the only practical thing it means is that I would then have to have another biopsy at the end of my treatment, to ensure that it was eradicated.)

It's now full steam ahead to chemo, which we will start next Friday. Two reasons for the slight delay: First, I have to donate and bank some baby-making materials before I get the chemotherapy drugs, as they have a high likelihood of inducing sterility (and no, I don't mean sterile as in a freshly cleaned surgical instrument set, I mean it in the can't-make-babies sense). Second, there is about a 7-10 day period after each time the drugs are given, until I hit my physical low point (as far as fatigue, susceptibility to infection, etc...), and so starting on a Friday will help make it so those periods fall on weekend of the following week, thus making it easier to rest and be taken care of.

I'll write more about the details of this first batch of chemotherapy, probably later this week.

Hi Mom!

You know you've made it in the web log business when your mom at last finds her way to your site!

Mom know this already, since I presently live with her, but to update the rest of my readership:

I've been having a nice quiet week here in Stamford. On Tuesday, I was at Sloan for some baseline testing (the echocardiogram and CT scans), and tomorrow I'm seeing Dr. H, at which point I'll also be having a bone marrow biopsy. I emailed Dr. H this week to tell him my concerns about the excruciating pain from the last go-around, but he assures me that at the Sloan-Kettering they do it differently (stronger Lidocaine?), and that I'll be okay.

That's all that is on the agenda for this week. Once the results of all this testing is back, hopefully next week, we will start the chemotherapy.

Not a Good Day.

So it seem to have been the right call to not buy that couch for my apartment just yet.

The results of the biopsy came in today, and it is now officially (once again) peripheral T-cell lymphoma, unspecified type.

I had a distant hope that things would play out differently and this wouldn't be lymphoma in the end, and I had a more realistic hope that at least it might not be T-cell lymphoma (because this is not the good lymphoma to have), but it is what it is, and at least now we finally have the answer in hand.

So it's time to move forward and deal with it. Bumpy road ahead, but at least I can begin to get through this.

--

I found out by a phone call from the surgeon's secretary (typical of us surgeons :-) while I was still at work today seeing patients. But things were wrapping up, and by the time I got to talk to Dr. H, I was essentially done for the day. We had a fairly comprehensive chat, especially given that it was just a phone call, and I'm starting to sort out what needs to happen now and how I'm going to need to proceed.

In the immediate future, I'm going to return to New York this weekend, and will have some staging studies done next week (A bone marrow biopsy again, another CT scan, an echocardiogram). The following week, I would potentially be starting chemo. Dr. H and I were able to have a brief discussion of the likely chemo protocol, mainly because it's one we've discussed before. See my post from last summer for a full rundown of the process.

The bottom line is, we're looking at a process that is 5-6 months long. It starts with relatively "easy" chemotherapy for about two months (CHOP), and then some more powerful stuff (ICE), finally culminating in a big chemo cruise missile and a bone marrow transplant (of my own previously removed marrow, being given back to me).

I've discussed with both Dr. H as well as the director of my hand surgery fellowship program the pros and cons of staying in Pittsburgh versus returning to New York. There is no possible way to keep up with the fellowship uninterrupted, but all else being equal the eight weeks of CHOP will supposedly not be that taxing. But the down sides are that a) I don't currently have any doctors in Pittsburgh, and would be starting from scratch, b) I don't have any family or other significant support system here, and c) even if I hobbled through 8 weeks of part-time fellowship, I would almost certainly need to take leave for some months after that for the more intense treatments anyway.

So taking all of this together, the rapidly-forming consensus decision seems to be that I will take a leave of absence from fellowship now, and return to New York for all of my treatments. This way, I can continue with my current team at Memorial Sloan-Kettering, and also be able to stay with family for the duration. The down side is that I have basically moved all of my stuff and leased an apartment in Pittsburgh for nothing, but for now, we'll leave that be.

Maybe I'll start referring to this as my "summer house", and come here for getaways? :-)

Anyway, just trying to look at the upsides of the situation (which include, as my friend Megan pointed out, getting to be back in New York for the fall, with time on my hands...)

Clearly, this once-idle blog will be reporting more and more news to you in the coming days. Wish me luck!

All's Quiet on the Pathologic Report Front..

Last week came and went, and no news yet from the pathologists. Dr. H and I exchanged emails on Friday, and as of then there was not even a preliminary report yet. And, no offense to my colleagues in other specialties, but we all know that pathologists don't do any elective work on weekends, so that means nothing until this week. Hopefully.

As far as recovering from the surgery, my neck stiffness is essentially resolved, and there's no pain to speak of. My numbness remains, however, from my neck up to and including my ear. I think it will be at least a few months before this decreases, if it does at all. But it's a pretty small nuisance. My scar, now sans bandage, is quite visible on the side of my neck. It sort of looks like someone tried to cut my head off, but aborted the attempt. So it's lead to a handful of people at work asking about it, and often getting a weightier response than they were ready for...

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The good news is that despite all this waiting, I've managed to successfully keep worries at bay and go on doing my regular things. Yes, I'm worried. Very worried, depending on the moment. But I also know that whatever the outcome of these tests, there will be very concrete things to be done when the answers are at hand. Before then, however, there's nothing that can be done. So I'm trying to not be preoccupied by the thought.

Really, the only curve-ball this has thrown me so far is that I'm being very non-committal with big furniture purchases for my new apartment (like, for example, a couch which I would like to purchase but will take approximately three weeks to deliver. A delivery is hard to plan when I don't know where I'll be next week, and an $800 purchase is hard to justify until I'm sure I'll be staying in Pittsburgh for at least a little while.)

Tomorrow is my first real day at work. True, our official start was last week, but the attending to whom I am assigned has been on vacation, and so I've had very little going on up until now. So despite all of last week, I have renewed first-day jitters about going to work once again.

I did manage to scrub into one surgical case last week, with a different attending's team, and I noticed an interesting but subtle thing: This is the first time in my life that I've shown up on my first day of anything, where I was immediately treated like I knew what I was doing. The surgeon who essentially had never met me, and certainly never seen me work, just left me in the room by myself to teach a third year resident how to fix a very shattered arm. It's a nice feeling, especially since up until now all of my first-days (of medical school, clerkships, internship, residency, rotations) have always had me playing the role of the clueless one on the bottom rung of the ladder!

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I will leave you with one last bit: The Sloan-Kettering pathologists may still be mulling things over, but one of my close friends has already provided me with her diagnostic opinion. If you scroll back to the very first entry of this blog, you will note that I was previously afflicted with this ordeal at the start of July 2006. And now, after spontaneously going away at the end of last summer, it has returned to bug me at precisely the same time again.

This superbly analytical friend has recognized mine as a case (and perhaps the first ever case) of Seasonal Affective Lymphoma. And no, Alissa isn't in the medical field. It seems all of you psychiatrist friends of mine were beaten to the punch with this one!

--

Okydokes. I'll post again just as soon as any results come in.

Radioactive Material on the George Washington Bridge

Before I get into this post, the short version:

New PET/CT scan just done, results are completely negative!

Anyway, now that you know the punchline...

On friday, I had my repeat surveillance PET scan. With the previous scan having been normal, the plan was to just wait for about 3 months and repeat. As long as I continued to feel well (which I have), we wouldn't worry.

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I arrived for the scan at 8:00 AM, first appointment of the day, as all of my scans so far have been. As I mentioned before, the radioactive isotope 18-fluorodeoxyglucose which is used for the scans is highly unstable and only has a half-life of about 2 hours. So they bring in a fresh supply daily, timed precisely to the doses they need for their appointments.

I was there at 8:00, but I was informed that my dose of F18-FDG was not. The truck was apparently stuck in traffic, on the George Washington Bridge.

You'd think that in this day and age of the Department of Homeland Security, one couldn't have a truck full of radioactive stuff just show up and sit there in the GWB. But I guess the forces of NYC traffic jams are more powerful than those of DHS!

--

Anyway, yes. The scan was on Friday. I got the results today. Totally clean!

It's Official...

EXAM: PET CT

IMPRESSION: NO EVIDENCE OF FDG AVID DISEASE. THERE HAS BEEN INTERVAL RESOLUTION OF ALL PREVIOUSLY SEEN FDG AVID DISEASE.

HISTORY: The patient is a 31-year-old male with history of lymphoma, who has undergone no treatment. Prior CT performed 08/14/06 showed spontaneous remission. PET from 07/24/06 was used for comparison.

TECHNIQUE: Following intravenous injection of 12.5 mCi of F18-FDG, and a delay of approximately sixty minutes, a PET scan from skull base to mid-thigh was acquired. Transmission-corrected images were also obtained. The data were reconstructed in coronal, sagittal, transverse and three-dimensional projections. Also, low-dose CT scan and fusion images are obtained on this study.

SCINTIGRAPHIC FINDINGS: There is physiologic distribution of hte radiotracer seen throughout the visualized structures. There is no evidence for FDG avid disease. This is a negative study with interval resolution of all previously seen abnormalities. There is normal bilateral renal uptake with excretion into the urinary bladder. There is cardiac activity and normal brain activity visualized.

Thank you for the courtesy of this referral.

Sincerely,
A.S., M.D.
A.V., M.D.

Ready For Some Good News?

Incoming email from the oncologist this afternoon:

Hi Sam - 

Good news about the scan; give me a call....

DF

I called him, and he said something to the effect of "I really wish I had given you some chemotherapy, because at least then I could take credit for the cure!"

With much faster turnaround than I had expected, the preliminary results from the PET/CT are in, and scan was basically normal!

No sign of any nodules, lesions, or anything cancer-like.

We are all very happy about this, even though we're not exactly sure what it was all about in the first place.

What will probably happen now is another couple of months of nothing, with a subsequent "surveillance" scan at that point.

Hope you all have a nice weekend! :-)

Mission Accomplished.

Okay, the PET scan is done. It will probably take a couple of days for results to come back, which may mean early next week.

The degree of bureaucratic wrangling that it took to make it happen was simply mind-bogggling. I thought that for the last three days we were simply waiting for insurance pre-approval. But oh, if only it were that simple.

You see, I've come to the realization that this system is so big and complicated that no one entity knows what is going on or what needs to happen. And so we get confusion and gridlock.

How many parties do you think need to be involved? The doctor, the patient, and the insurance company? Not exactly.

In my case, the following cast were performing:

1) Me

2) Primary Care Doctor (Doing Business As "Montefiore Medical Group")

3) Oncologist (And his office staff, who are almost a separate entity)

4) Nuclear Medicine PET Facility

5) Aetna HMO

(you'd think the list should end here, right?)

6) Care Corp (A private "3rd" party firm contracted by Aetna and other insurance companies for the purpose of managing their pre-authorization approval process)

7) the Contract Management Organization (that's not a description; it's actually the name of a wholly-owned subsidiary of Montefiore Medical Center. To the extent that I can tell, these people are basically middlemen between the the doctors, the hospital, the HMO, etc, for a certain group of patients. Alternatively, they may just be some sort of bean counters)

--

You'd think that with all these extra layers of "management" companies things would be running smoothly. After all, they exist to streamline the interactions between the parties, right? So amongst this wild and crazy group, depending on whom you asked and who was doing the asking, there was no consensus as to wether I needed pre-authorization or not, wether such pre-authorization was pending or not, wether in fact I was even in the HMO or not!

The situation finally resolved itself when on the third consecutive phone call to the same Aetna phone number (with contradictory responses each time), I got a sensible lady on the phone who was willing to walk through the process with me, call each of the other parties herself, and get everyone on the same page.

At least I'm a doctor and I know the ins and outs of the system a little bit. I feel sorry for any of you folks out there who have to go through this sort of ordeal as mere laypeople!

The one piece of fortunate news was that some other PET patient didn't show up for their test today, so they had an extra dose of radioactive sugar sitting around, and were able to do my scan this afternoon rather than making an appointment and waiting again.