REHAB - Part 2 What the heck do we do now????

For someone with nothing to do and little strength to do it, the past several days have been pretty busy around here!!!  Of course, when it takes a couple of hours to just get up, get going, get a shower and get dressed....your day fills up pretty quickly!!!

Had to have the car serviced on Tuesday, no big deal, and B could have done that, but we also needed all the records from my recent crazy to take to the specialist in Nashville.  In order to attain those, they required my presence, my signature, and my ID.  Thanks to a nice, efficient lady in the records department, things went much more smoothly and rapidly than I had anticipated.  Kinda weird to read a clinical report of your surgery and process!  Discovered that my hemoglobin reached an in-hospital low of 7.3, so I guess my current (as of last week) 9.3 is pretty good indeed.

Yesterday - up bright and early and off to Nashville for our consultation with Dr. Berlin at Vanderbilt.  The trip was pretty easy.  Yes, I drove.  I like to drive and actually having the steering wheel to support me, plus being better able to anticipate the bumps and curves as the driver, actually decreased my pain and discomfort.

We began by waiting to sign our life away in an impressive waiting room.  Large.  Well appointed.  Fairly clean.  Interior designer completely swept away with a leaf motif.  There were leaves on the carpet, carved into the backs of chairs, embedded in glass panels inserted into walls, in watercolors that were framed and hanging on the walls.  It was a good idea taken one (maybe 12???)  step(s) too far!!!  It really has to be seen to be be- LEAVED!  (I crack myself up!!!)

You see what I'm say'n????  And there was actually much more!!!

We didn't have huge waits.  Folks were very nice and helpful.  Here's how it all went down....

To start, little background ~  as most of you can well imagine, B has already done his homework and then some.  Melanoma is not a terribly common cancer as it is ranked 19th in frequency of occurrence, but even so, the Pub Med data base on melanoma contains more than 121,000 abstracts.  For my current condition, there are only 6,000. (Of which B has read more than half!)  Melanoma occurs at a rate of 3 per 100,000 peeps, or 30 cases per every million humans per year .  My new and special cancer has an incidence of 0.12 cases per million humans per year.  As such, there are not a lot of peeps with "adenocarcinoma ex-goblet cell carcinoid" and certainly not a lot of peeps studying it.  In the US, Dr. Reid at Emory has a report on 77 patients.  Dr. Taggart at MD Anderson has reported on 142 patients.  Dr. Tang at Memorial Sloan Kettering has 63.  Dr. Berlin at Vanderbilt now has 30, if you count me.  And understand, these numbers do NOT reflect their patient population collected as of this year or even last year!  These are patients both actual and reviewed retrospectively through their institutional data bases over MANY YEARS!!!

You may ask, "What so about adenocarcinoma ex-goblet cell carcinoid???"  {Phraseology from my childhood!!}  It's complicated.  Regular old colon cancer is referred to as "adenocarcinoma".  It sucks.  It is treated with surgery, sometimes radiation and the same old school chemo I talked about in a prior post:  Now what?? FOLFOX and FOLFIRI????  My cancer, "adenocarcinoma ex-goblet cell carinoid" is rare, has been given a lot of different names at different times, is categorized differently depending on who is doing the categorizing, and is a bit of a combo.  A combo of goblet cell carcinoid, a condition in which your goblet cells...the little do-dads that produce the mucus in your gut....go a bit nuts and produce a bunch of mucus and grow in a chaotic manner - and regular old adenocarcinoma type colon cancer.  FYI - with plain goblet cell carcinoid - patients do really well, considering, even when found in late stages.  Okay.  Back to the combo.  If you have my fancy schmancy cancer combo...the thing you look at next is percentages.  Meaning, the percentage of goblet cell mess vs colon cancer nastiness.  The more colon cancer crap your tumor has, the worse off you are.  My pathologist, dear Ox, reports my cancer to be Stage 2a (based on clear margins, negative nodes, etc) and on a cellular level to be not the best combo, nor the worst, but not great either with 75% of the material being adenocarcinoma and 25% being goblet cell carcinoid and mucus material.

But on to our visit ~ Shortly after being placed in an exam room, we were met by Dr. Das.  He is in the process of completing his fellowship in hem/onc under Dr. Berlin and will be joining the faculty at Vandy in the next few months.  Turns out he was also very kind and extremely knowledgeable.  Whatever B threw at him regarding this study by so-and-so where no difference in those who were treated and those who were not, vs this study by the-other-fellow where blah, blah, blah...he could discuss intelligently.  He treated us with respect and was aware of my history when he entered the room.  So...bottom line:

• No.  There are no reports of folks who did treatment vs folks who declined treatment to really see who did better and determine if the "treatment" really had a positive effect.
• I have a 75% chance of never having a recurrence if I do nothing.  Or...to put it another way, I have a 25% chance of recurrence if I do nothing.
• His best opinion is that with treatment, I will decrease the odds of my having a recurrence by 10%.  In other words, decrease my chance of recurrence from 25% to 15%.
• He did have some "news" from this 2013 study:  The IDEA (International Duration Evaluation of Adjuvant Chemotherapy) Collaboration: Prospective Combined Analysis of Phase III Trials Investigating Duration of Adjuvant Therapy with the FOLFOX (FOLFOX4 or Modified FOLFOX6) or XELOX (3 versus 6 months) Regimen for Patients with Stage III Colon Cancer: Trial Design and Current Status  in which it was determined that folks who were treated with only 3 months of chemo (given every 3 weeks for a total of 4 rounds) did just as well as those who did FOLFOX for 6 months.  AND this 3 month regimen used only 2 meds:  Capecitabine (an oral pill given twice daily for 2 weeks and then one week off) as well as Oxaliplatin (an IV infusion given in the office every three weeks).
• Now, when you read the nitty gritty of the study, turns out that most folks can't tolerate the entire 6 months of the FOLFOX mess anyway and have to quit due to side effects.  On the flip side, these drugs (while pretty awful) are not quite as awful as those used in the FOLFOX and FOLFIRI regimens.  Additionally, the 3 month regimen as noted above, had slightly better outcomes - as best as they can tell.
• Most common side effects of Capecitabine:  decreased white count, rash and pain to palms and soles, diarrhea, fatigue, nausea, vomiting.
• Most common side effects of Oxaliplatin:  Peripheral neuropathy (numbness and tingling of hands and feet, often triggered by cold), nausea, vomiting, diarrhea, mouth sores, low white count, fatigue, decreased appetite.  It can also rarely cause angina which can make you feel as though you are having a heart attack!  You're not really having one...you just feel like it!  Weird, right???  And, 3% of patients experience hair loss.
• On the good side, for both drugs, if you are having side effects, a decrease in the dose often decreases the side effects in the process.  Additionally, though 90% of folks (per a couple of studies) DID experience neuropathies with Oxaliplatin, most of these resolved with resolution of the treatment.
• Another positive, given that there is just the one infusion, I wouldn't need the pump scenario I was told of when I discussed FOLFOX with my local onc.  Additionally, side effects are cumulative.  Meaning, the more drug you take, the more likely you are to have side effects.  So the 3 month plan helps (in theory - though they do use a higher dose in the 3 month regimen) limit side effects when you compare it to taking the drugs for 6 months.
• So. A lot to take in.  And when nausea and vomiting are pretty consistent side effects across both meds...and you can't take meds like phenergan and zofran that are typically used to control those very things....what are you supposed to do???????????

On that note, B also did some research into dyskinesia with these drugs!  It's a thing y'all!!!  It doesn't happen with everyone, by any means.  But it happens.  Enough to be in lots of case reports and op-eds!!  Check out what happened to this lady who went in for a simple gall bladder removal:

This chick was having jerking of her arms, was confused and didn't know what was happening, and had jerking movements of her head and neck!!  Sound familiar????

• Thankfully, Dr. Das didn't treat us as though we were psycho when we reported the side effects I had experienced on phenergan and zofran.  Nor did he throw up his hands like Mr. ER Doc.  Instead, he immediately started brain storming about how we could deal with it!!!  I like this guy!!!
• He suggested that I could take aprecitant (emend) as an IV infusion when I got my infusion of Oxaliplatin and its effects would work for about 3 days.  B knew of this drug, though I did not, and get this!  It has been considered in and of itself as a treatment for both melanoma and colon cancer!  Crazy, right?
• Das also suggested that I could use ativan and/or marinol (the marijuana derivative I took as pre-op) as needed for nausea at home.  B also came up with decadron as a possibility if needed.  Knowing that there are SOME options to deal with nausea and vomiting certainly made me feel better.
• By the time Dr. Berlin arrived, we really had hashed through a lot of territory and Dr. Das had answered most of the questions we had.  Dr. Berlin was very nice and informed as well.  He admitted their lack of absolutes, but said the plan as laid out by Dr. Das was what they felt was best under current circumstances.  He acknowledged that this treatment plan is really that used to treat basic colon cancer.  But, when that is 75% of your problem, that's the best they've got at the moment.
• He and Dr. Das noted that it would be a perfectly acceptable choice to do nothing more than observation - which would consist of a CT of the chest, abd and pelvis with contrast, 6 months from diagnosis and then annually, as well as some basic schedule of colonoscopies.  This cancer does not typically metastasize to far distant places, preferring the abdominal cavity and the surrounds....going occasionally to the lung.
• When I looked directly at them and asked, "What would you do if you were in my shoes?"  Both promptly replied that they would do the 3 month chemo regimen...hoping to gain an additional 10% of protection against recurrence.
• Both gave me the song and dance about lots of veggies and exercise in order to protect my colon and my health.  You can imagine the eye roll.
• Both did not feel that I needed to travel to Vandy for this treatment, saying that my onc in Chattanooga could manage this perfectly well.   Simultaneously reassuring me that I was now a patient there and was welcome to return or call should there be a need.
• And finally, I thought to ask, "Should I opt for this treatment, when should I start?"  Dr. Berlin was adamant, that sooner was better.  I was a little startled by that, not sure why.  But, he made it clear that starting within 4 weeks was much better than even 8 weeks out.  So ~ WOW!
• They are going to have a Vandy pathologist they feel is especially skilled at analyzing these sorts of tumors review my slides on Friday.  On Tuesday they will review my case with the tumor board.  They will call us with their final thoughts at that time.  Dr. Das apparently spoke with my local onc today to review their recommended plan of care.

So, damn!  I know that folks survive hard core chemo hell for years at a time.  I know that compared to some regimens, this one is pretty brief and mild.  But, geeze.  I am so tired of this shit.  So very, very tired.  Not that it is what ANYBODY plans on dealing with, but this is NOT what I thought I would be facing just now.  I'm supposed to be in Italy right now.  Vernazza to be precise.  Oh, well.  A pity party won't do me much good.

B is a man possessed.  Trying to learn everything about everything.  He says he would do it if it were him, but that I can decide whatever path I choose with his full support.  He's a nervous wreck about dealing with me being sick and not eating and keeping me warm because apparently cold can trigger the neuropathies.  As in....you are warned not to drink things with ice, pick things up out of the freezer, breathe cold air.  So. Very.  Weird.  And while everybody uses their hands for everything, I had been thinking, "Okay, I'll just sit and sew and write for three months."  That may not be so easy with numbness and tingling in your hands as the skin peels off!!!  Geeze!

I lost another pound today, but I am still losing a great deal of fluid off my belly so it is hard to tell when that is going to settle out so that I can actually start demonstrating weight gain!  I am eating well, I promise.  Was going to share pics of what I've been eating and up to apart from this drama.  But, this has droned on for so long, you are probably as tired reading it as I am writing it...so I will give that report tomorrow.   Interested in all thoughts.  Much love, les