Friday, March 28, 2014

Another country heard from

Just got off the phone with 

David Kleiner, MD, PhD ... 
Laboratory of Pathology
Head, Histopathology and Autopsy Pathology
Staff Clinician
Center for Cancer Research
National Cancer Institute

a/k/a ... liver pathology stud.


He finds no fault with the previous pathology report, but ... in consultation with the liver docs at his weekly "liver biopsy conference ..." they are certain that this IS a Drug-Induced Liver Injury.

They think it's FAR more likely that it was caused by the Cymbalta (prescribed at a ridiculously high dose, to treat the corneal neuropathic pain) than that it was caused by the anticonvulsant that I took in October.

[60mg a day is considered a pretty high dose of Cymbalta.  I was prescribed (and was taking) 120mg.  No reason in the world not to be monitoring my liver functions during therapy with that high a dose.  Sigh......]

He thinks the "allergy testing" (either skin testing or 'in vitro' testing, in a petri dish, effectively) is the best route to take, to try to get even more certainty about this.

Agrees that there's significant risk in my taking ANYTHING (he thinks narcotics are low risk, but not NO risk) until I've met with Immunology and had this sort of testing.

Called mine a "very interesting case."  I told him how tired I had become of being medically interesting.  He said it's common among his pathologist colleagues to say ... in pathology, you don't WANT to be interesting.  We both had a laugh about that.  I stopped laughing first ;-)

April 4th with Immunology.  I just have to HOPE that UC Irvine Immunology is familiar with, and DOES the kind of drug allergy testing that I'm talking about, and ... if they DO this kind of testing ... that it would elicit a problem with Cymbalta, if it wasn't a "classically allergic reaction."

There's a long way to go, and ... from what I've seen in terms of how long it takes to get appointments with these specialty clinics ... I have absolutely no idea how long it's going to take.

I'm not holding up very well.  Sleep is poor.  Eyes -- not surprisingly -- hurt.  The viral, bacterial, and fungal stuff ... won't go away, and ... I STILL can't take any meds to treat it. 

And ... Mom got sick yesterday morning.  I had slept so poorly, and so little, that I had to call Uncle Stu to come up and help ME help HER.  He did ... bless his gigantic heart.  Mom's getting better.  It was an episode ... but a vicious episode, for sure, and plenty painful to watch.

One day at a time .... I guess. 

Time passes slowly ... here ... in the vast wasteland that is ... The Gulag.

Friday, March 21, 2014

Annnnnd ... the biopsy result is now in question :-/

That's how it goes -- particularly if you don't take the first answer you're given ;-)

I reached out to the half-dozen top Liver Pathologists (that I could find) in the States.  This morning, after getting a copy of my actual Pathology Report, I forwarded it on to the same bunch.

One (my first-round draft pick -- the one I was hoping to have on my team, above all the others) wrote back:

I have been thinking about your case since this morning and I just read the pathology report you sent.  My first thought is that this is probably not drug-induced liver injury, mainly because your bilirubin came down so quickly.  The liver biopsy report is consistent with this—there is some residual bile in the liver (a normal liver would not have visible bile) along with the clean-up cells (histiocytes).  It is not a specific pattern, and is probably most often related to acute obstruction. The pathologist noted that they didn’t see evidence of obstruction, but if the obstruction doesn’t last very long all you might see is what was described in the report. It can be related to drugs, but the elevated bilirubin usually lasts for weeks when a drug is the cause.  One possible explanation is that you passed a gallstone that briefly caused obstruction, but then passed, allowing the bile to flow normally and the blood bilirubin to quickly fall into the normal range.  There may be other explanations as well.  Infection could cause bile to accumulate, but usually a blood infection would be required to cause jaundice and you would probably be hospitalized and on IV antibiotics if that were the case.  Drug injury is always possible, but is pretty rare and you have to exclude all the other possibilities before you conclude that a drug is the cause.   In that respect drug-induced liver injury is very different from the more common skin reactions that happen with medications. If you want an official second opinion on the biopsy, I can do that if the slides are sent to me for review.  There is no charge for a second opinion, but I’m not sure I could say much more than was already said.  If you’re still concerned, you could see a hepatologist (liver specialist), rather than someone who mainly does gastroenterology.  I don’t know any of the hepatologists at UCI, but I know one or two at USC.  I’m really only qualified to advise you about the pathology—you would need to see someone else for a more complete review of your symptoms and test results.

Sounds like I'm medically interesting ... again :-(

I'm trying to arrange to have the slides sent to this mensch.

In the immortal words of the bad guy, toward the end of Dirty Harry .... well ... y'know what ?  You take about a minute and a half and figure out what line I was thinking of:

Got work to do.  It's what we do ... here ... in the hystiocytic doldrums of ... The Gulag.

Thursday, March 20, 2014

Preliminary Biopsy Result !!

Dr. just called.  Pathology Lab says that it's a drug-induced liver injury.

He was in a hurry, so that's all I got for now.  

Left a message for his assistant, asking for a copy of their report asap.

I may need to send everything to a specialist in liver pathology, and see how well we CAN pin down WHICH drug. 

Immunology (I go there on 4/4) should be able to test to see what drug it was, and what drugs I might NOW be reactive to.  This isn't totally safe, but may be worth the known risks.  Have to do it.  Safer to do "patch testing" than to roll the dice by taking the actual meds.

What I've read says that ... particularly since this is NOT my first drug reaction ... my body is now "sensitized" to any number of OTHER drugs -- of ANY class (not just ... whatever it was that got me this time OR last time).

And subsequent reactions are nearly always MUCH quicker and MUCH more severe.

Meaning: can't take/treat anything until we know more.

My bet was/is Anticonvulsant Hypersensitivity Syndrome:

Which ... since it's not my first time with a serious adverse reaction to THIS class of drug ... could, literally, have killed me.

I told the Pain Clinic that I was allergic to Neurontin (another anticonvulsant), and that I believed I HAD Anticonvulsant Hypersensitivity Syndrome.  They assured me that -- if we started off at a very low dosage, and pushed it up very slowly -- I'd be fine.  They prescribed it, off-label, for treatment of neuropathic eye pain.

So ... I'll meet with Immunology, AND meet with the Mitochondrial folks, in mid-May.

I now have a LOT more information than I did this morning, but ... I still need a lot more.

And a lot more sleep ;-)

Still nothing.....

It's pretty ridiculous at this point, but I STILL haven't heard anything.

I sent a fax to the doctor's office: are YOU still waiting for the Lab to send the results, or have they sent them, but they died in YOUR office ??

If YOU haven't received them, please call the lab.

If you HAVE received them, then call me, and I'll come pick them up.  I'd like to chew on them, until the doc gets a chance to go over them.

And/or ... forward them to another Pathologist.

No response.  Left a follow-up voice mail.  No response.

Meanwhile -- not having slept much last night -- I DID wind up in a 3am e-mail exchange with the Director of Immunology (he was abroad, and not necessarily battling insomnia).

I asked him if:

 - he could get me seen before April 4, and

 - he could arrange for a Faculty doctor to see me, and not just the Fellows (basically, students).

He replied:

We see patients with fellows, who are very good, almost ready to go out and practice themselves.
Maybe it's just me, but ... I  didn't feel very encouraged by that.  It was as if he damned them with faint praise.

They're almost as good as real doctors !!


Sinus infection is pretty bad.  Fatigue is pretty bad.  Been pretty much confined to bed ... again ... for 20+ hours a day.  Watching the tube ... burning my eyes trying to figure out Next Steps ... and ... waiting.

We're hearty stock, we ... we denizens of .... The Gulag.

Wednesday, March 19, 2014

I believe this speaks for itself

I will give (a link to ... an online explanation of) a Bitcoin to anybody who can tell me the original source of this (no.  I don't mean the URL of the image.  Sheeze !  Geeks !!)

Tuesday, March 18, 2014

Tick-tock, tick-tock, tick-tock, Peter ... Tosh, tick-tock

Okay.  The waiting definitely IS the hardest part.

Called the doc's office this morning.  His assistant (whose mother just got a cancer diagnosis, but ... no word on HER staging, etc yet) said .... no results yet.

I asked her .... 

Does the Pathology Laboratory GET all the other (ie, Clinical -- labs, time-course of 'disease process,' imaging, etc.) results and THEY make the diagnosis, or ....

Do they just evaluate the specimen, and give THAT info to the doctor (with some fancy terms like "Submassive Hepatocellular Necrosis") and let HIM make the diagnosis.


It's the latter.  The lab sends a lab report to the doctor.  He puts the puzzle pieces together.

Which has me already locking and loading Plan B.

This is very complicated stuff.  I've figured out who the leading Pathologists are *for dealing specifically with liver disease.*  At this point, I'll pretty much plan to:

 - get in touch with them

 - find out if they'll work with me

 - find out what they'd need from me, all wrapped up in a nice, neat little package

What the best in the business DO with all this sort of liver disease information:


or ....


This one really is for all the proverbial marbles.  I need the answer to be the best, most accurate, most comprehensive, and most definitive answer I can get.

And THEN I need to do my homework.

So I wait.

And I think of Peter Tosh's music ;-)

Meanwhile, I've been running recurrent fevers since ... well ... probably the biopsy (Thursday).  Not high enough to be specifically concerned about, but high enough to have me feeling miserable, AND ... since I can't take anything FOR it ... high enough to stay that way ;-)

And my sleep-wake cycle kind of reversed again.  No "hepatic encephalopathy," this time, though ... methinks.  Just good old fashioned stress ... managed the best I can.

Of COURSE, the telephone wakes me up ... 2-3hrs into sleep.  Of COURSE, it does ;-)

Since I'm waiting for calls from doctors, though ("UNKNOWN CALLER" on the caller ID), I have to half wake up and take the calls.

Supposed to get another Liver Function Test blood draw.  Have been "supposed to" for days, now.  No hurry.  Will wait until I can safely drive.  Or ... like most Southern Californians seem to do: throw caution (and the safety of others) to the wind, and just go REALLY fast :-)

On a positive note ... the weather's been awfully nice :-)

Ciao for now .... from .... the wishing-I-were-cryogenically-frozen outpost of ... The Gulag.

Thursday, March 13, 2014

Liver Biopsy Was Today

Was at the hospital from about 9a until about 4:30pm.  Long day.

Biopsy took only 20-ish minutes.  Went fine.  No excessive bleeding.

Had to lie on my right side for 3hrs, afterward, to prevent bleeding.  No sweat.

Boring, but ... I think my mother had it worse ;-)

But she DID grab me Rubio's for lunch :-D

Probably Monday or Tuesday before we have the results back from Pathology.

One day at at a time.....

Monday, March 10, 2014

A couple of things are scheduled

While this is moving very slowly, it IS moving.

Last week, I set up the appointment for a liver biopsy.  That's this coming Thursday.  With BIG luck, this will give us some indication of what happened, medically, and ... what -- if anything -- needs to be done about it, or what lingering damage/symptoms there may be.

I'm starting to re-orient MY personal bet, toward ... Anticonvulsant Hypersensitivity Syndrome:

In October, I was put on Trileptal (Oxcarbezapine) to treat neuropathic eye pain.  

Trileptal IS an anticonvulsant, and -- though I had a serious reaction to an anticonvulsant (Neurontin) once before -- the Pain Clinic docs assured me we'd start low enough, and ramp up slow enough, that I'd be okay.

But I wasn't.  

A pretty wicked dermatologic fungal infection showed up, as did three different Herpes Simplex "cold sores" or "fever blisters," in three different locations, around my mouth.

[The cold sores went away.  I'm still battling the fungal stuff, though.  Can't treat it with systemic antifungals.  WAY too risky for the liver]

Within only a few days.  I stopped the meds, but ... it's quite possible that -- even 2-1/2 months later -- this IS what caused the liver problem ... maybe in conjunction with the other meds I was on.  It would only take a TINY bit of extra tweaking of my (already dysfunctional) immune system.

Stay tuned.

Meanwhile, my beloved corneal neuropathy ophthalmologist has suggested that I be tested for Mitochondrial Disease.  I think I mentioned, before, .... you don't want that.

But I DO have an appointment with the UC Irvine Mitochondrial and Genomic Clinic in May.  Guess I'll have to stick around for that AND the April Immunology appointment.

I need to know.  Too many things that this COULD easily be ... must not be ignored, and would have a significant impact on any future planning.

So ... the apple corer to the liver on Thursday (I'm guessing ... results by next Monday or Tuesday) ... Immunology in about 3wks, and ... Mitochondrial stuff in mid-May.

I'm considering moving into an efficiency (kitchen-equipped) hotel, much closer to the hospital.  It might make a LOT of things simpler.

Meanwhile ... the minutes pass like hours, and the hours pass like days.

That's the news ... from... the Awfully Damned Tired offices of ... The Gulag.