baroque

Well, the ball is finally rolling on my sister’s chemo treatment. It was delayed a week because when we arrived at the infusion clinic, they realized she didn’t had a port. My sister was not a happy camper because she is not a fan of surgery or things being in her body not wrapped in bacon. But there wasn’t much choice and we scheduled the surgery and rescheduled the FOLFIRINOX regimin start for this week.

She’s scheduled for 14 cycles (1 cycle = 2 weeks) and the regimin is:
Day 1 – Oxaliplatin, Irinotecan, Leucovorin + 5FU (injection + 48hour pump)
Day 3 – Disconnect 5FU pump
Day 4 – Neulasta

The oncologist said not to be discouraged if she couldn’t finish the regimin as it’s much higher in toxicity than her Gemzar/Xeloda treatment 2 years ago. She does seem to have a higher tolerance for drugs and pain so I’m hoping she makes it all the way through (Doctors, for the second time, commented on the amount of sedation she needed during surgery. Apparently it was alot; enough that they said she needed to tell doctors in the future).

SBRT was finished at the end of Nov but we won’t know how successful it was until they do a PET scan in Feb. The oncologist said he wanted to give the body some time to heal before scanning. Sadly, she has not developed any powers from the radiation. Unless being super snarky and watching bad television is considered a power.

She’s only taking comfort in the fact that so far this has been a relatively poor snow season on the west coast (we’re in California). Snowboarding is what she wanted to do leading up to winter and a mediocre snow season means she isn’t missing out on much (she’s terrible at snowboarding but she likes it).

@Lainy Giving my sister powers after a hero named SuperWoman would cause catastrophic big-headedness. Maybe a hero like “ReallyAwesomeButDon’tGetAheadOfYourselfBecauseNoOneLikesEgoManiacs Woman”?

@PCL1029 I haven’t asked about PDT yet. Mostly because my readings have me fixated on the Mayo Clinic strategy of radiation, chemo + liver transplant. The Radiation Onc and Hem/Onc both contend there should be no detectable cancer after the SBRT so I’d like to keep some tricks in the bag in the crummy instance of recurrence.

@Susie My sister definitely thought radiation was worse after her first treatment. She just finished her second and it seems like she’s managed some kind of coping technique: Zofran before + Zofran, ginger tea, pot after + 6 hours sleeping. That deals with the worst of it but she hasn’t had any back-to-back days yet. Also, my understanding is that SBRT is easier to tolerate than conventional radiation so she lucked out, I suppose. You know, you’re the 5th person to suggest flying as a power? I heard an NPR story a while back suggesting people that pick flying are more “noble” and people that pick invisibility are more “mischievous”. I’m for invisibility over flight.

@Pam My sister most definitely hates needles but she’s going to go with an IV for as long as possible. I think it’s a psychological thing for her. They offered her a port last time and she declined saying something to the effect of the internal struggle is also an external struggle. I think she meant she couldn’t control how crappy she felt with the chemo in her but she could control the crappiness of the IV. Sounds logical but also insane. Maybe we should be hoping for super rationality instead of super powers.

@Marion Our Hem/Onc pretty much said the same thing as far as adjuvant therapy. I did ask why 5FU+Oxilplatin+Irinotecan and he said Gemzar/Xeloda were drugs designed to be more targeted for GI cancers (colon, pancreas, etc). Considering they were not effective in eradicating the cancer last time, he wants to use a completely different set of targeted chemo drugs. Articles I’ve read suggest Gemzar and 5FU are similar in terms of effectiveness. Oxilplatin is a platinum based drug in the same group as Cisplatin. And I don’t know much about Irinotecan other than it’s generally used for colorectal cancer. Seems like our Hem/Onc’s strategy is to mishmash chemo drugs from similar types of cancer. I don’t see that as a negative considering CC is such a mysterious bastard.

@Patty Hulk had to be eliminated from a practicality standpoint; she’d be tearing through clothes like crazy. The only sound effect she makes is SNORE. Her logic is that she can’t be in a medically induced coma to bypass the side effects but she can be in a self-induced coma. :p

Bleh. We’ve basically been in a holding pattern while waiting for insurance to approve the PET scan and the hospital to schedule the appointment. It’s more annoying than anything, although my sister does seem to be enjoying her unexpected time off from work.

Susie (wallsm1) do you recall the name of your medical oncologist at Mayo? Were they the CC specialist there? In lieu of going to MN, we thought maybe a peer consult with our oncologist would be worthwhile. Mayo is fine with this idea but declined to give the name of anyone. They just said that our doctor should call and ask for a GI doctor specializing in CC. Seems like that would waste a lot of time for our doctor so I’m trying to do some of the leg work.

I did a search and saw medical articles but not much in actual travel: Does anyone have experience going to Asia for treatment? Western or Eastern style medicine? Because CC is 4 times more common in Korea and Japan, I’d imagine they have more familiarity if not improved treatment.

+andrew

Met with UCLA radiation onc. to consider my sister’s options. They wants to do 5 sessions of SBRT followed by chemotherapy. He mentioned the possibility of liver transplant but said they would have to discuss with surgeon/transplant team since CC is in lymph node and it is a recurrence. I don’t remember which post, but this strategy sounds similar to Mayo Clinic’s protocol for hilar CC.

Oncologist also confirmed there were no visible tumors, just the 2cm necrotic lymph node with CC. My sister will have to do a PET scan to confirm no missed spots and also prep for SBRT.

Requested an appt. with Dr Lenz to get second opinion per Marion’s suggestion (thanks Marion) and tried to set up a phone consultation with Mayo but they don’t do that apparently. I like this radiation oncologist’s treatment strategy and was glad to hear our ideal plans were similar to his but I’ll still be looking for other doctors to get opinions from to make sure what I think is optimal actually is.
+andrew

Her original surgery and chemo were done at UCLA. Dr. Hines performed the Whipple. Dr. Garon oversaw the chemo regimen, the semi-annual CT scan checks and is the one who is currently recommending radiation.

Now we have an appointment with Dr. Percy Lee (also at UCLA). I’ll probe him for more answers but, since he’s a radiation oncologist, I don’t know how that will color his perspective on treatment.

I’m just trying to get as many of my ducks in a row before speaking with Dr. Lee.