Update on my sister

A bit of news here. My sister had a PET scan done two weeks ago and her oncologist just informed her that there was no metabolic activity in the affected lymph node. After a bit of coaxing the oncologist went as far as to say there is no detectable cancer in my sister. Doctors must go to law school in addition to med school because they sure are cautious about liability!

So, as far as modern medicine is concerned, the SBRT did its job and eliminated the recurrent CC and now my sister’s FOLFIRINOX regimen is adjuvant chemo. I should briefly mention that FOLFIRINOX side effects (nausea, fatigue) was much worse than Gemzar/Xeloda until they switched her premeds from Zofran to Aloxi/Emend. I wouldn’t say it’s a piece of cake now, but maybe a piece of pie?

Cautious optimism is out the window for my sister though as I spent most of the time prior to the PET scan results managing her expectations. She seemed unfazed about the SBRT possibly not working. Is it still the 5th stage of grief if you indefinitely remain in Acceptance?

Otherwise, there’s nothing much new. She got a snowboarding video game to relieve her snowsport itch. She’s learned to play a zombie shooting game. She’s terrible at it but seems to enjoy it. The other 90% of her time is spent learning about the lives of housewives in Beverly Hills/Atlanta and young adults on the coast of New Jersey. She has acquired one superpower (I know you were all wondering) but I think it’s temporary: horrible, horrible, awful poo/fart smell. I’ll spare the details but suffice to say I thought someone was doing sulfur work on the street when I first smelled it. And if you think rectal odors aren’t a superpower, then I refer you to Paul Reubens’ character in Mystery Men.

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