I Don't Care If Monday's Blue

Entry 1    11:04 a.m.

It's Friday, I'm In Love


With Friday, that is.  Sitting in another interminable meeting talking about minutiae about job duties and whether they exist in a given job specification or classification document.  Don't worry, its putting me to sleep too.  

In my spare time this morning, thinking about where the doctor might suggest we go after the final 1st year treatment on July 15, I came across a research paper that tells me that gemcitabine may be out as a treatment option--which makes sense given it appears to have stopped working.  It is important to note that Jenny has been alternating her chemotherapy drugs every two months between gemcitabine-paclitaxel and folfiri.  This regimen is experimental, meaning if you look on the internet you can't find anyone doing it, no papers on it, nothing to recommend or warn against.  Jenny has beaten the odds thus far, so there is that.  But anecdotal isn't the same as statistical analysis from a study.  

Anyway, the research paper dated September 2020,notes that the same regimen Jenny is undergoing now, doesn't work as a second-line chemotherapy.

Increasingly, maintenance therapy following initial combination cytotoxic therapy is being integrated as part of standard practice in PDAC for selected patients. The potential value of maintenance chemotherapy was tested in a randomized phase 2 trial by Dahan, et al. where patients with metastatic PDAC were randomized to one of three arms: arm A with six months of FOLFIRINOX, arm B with four months of FOLFIRINOX followed by maintenance therapy with 5-FU and leucovorin, and arm C with alternating gemcitabine and FOLFIRI (5-FU, folic acid and irinotecan) every two months. Six-month PFS was 47%, 44% and 34% and median OS was 10.1 months, 11.2 months and 7.3 months, respectively in arms A, B and C.[] These data support the de-escalation of therapy for selected patients to maintenance 5-FU/LV and indicate no role for the alternating regimen (arm C) which was inferior to arms A and B. 


It appears nothing works.
Dr. P keeps telling Jenny she is in a better shape to fight this due to the onset of the PDAC coming under age 50.  In fact, that isn't true, and, moreover, the earlier you get it, the more likely it is to be inoperable or metastatic.  The same article cited above (New Treatment Strategies for Metastatic Pancreatic Ductal Adenocarcinoma (nih.gov)) contradicts that claim.  I'd like clear and honest answers.  Here is what it says, specifically:

Early-onset pancreatic cancer (EOPC; age <50 years at diagnosis) accounts for 5.7–9.5% of PDAC with more patients being diagnosed as inoperable or metastatic disease.[–] However, these studies are all single center retrospective analyses. Of note, there was no significant difference in overall survival (OS) compared to patients who are diagnosed at a later age (typical onset).

Single center studies are clearly not as good as randomized studies across treatment centers.  But, it ain't nothing, and it's the best data we have.  If there were better they would have cited it.  The failure of the doctor to be clear, and frankly honest, is disturbing to me, and frankly unethical.  I am sure, should an ethics complaint be lodged, he would be weaselly about what he has said (not much), but it is incredibly clear to me that if he would have provided Jenny with this knowledge--as the premier oncologist for pancreatic cancer he would know better than anyone--she may have built different expectations.  
 “English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. It has all grown one way. The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.”
― Virginia Woolf
 
 
Jenny woke up late and very upset. The chemo pump has that effect.  She is "pretty fuckin' depressed," to quote her directly.  She told me, as she does after every treatment, "I don't think I want to do this anymore, Geoff."  While past performance is no guarantee of future performance, I might guess that come Monday, it will be alright.  She is the toughest woman I have ever seen battling the most awful of diseases. The pain, the despair, the crisis is real, please don't misunderstand, but the triumph of will is also real.  

My experience over the last several months, along with Woolf's quote, and the bit of
Professor Elizabeth Scarry I have read, convince me that a big human failing is the inability to describe individual pain to one another.  Pain is so subjective, so individual, it is impossible for one person to know the pain of another. 

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