(18 replies, posted in General Discussion)

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.

2 quick things my sister hates about cancer:

1. Hates that her cat still behaves like a cat and is hot and cold to her but now she transposes meaning to it: "Oh cat! You want to snuggle with me? Great! Wait, why are you being so nice?? What do you know??" or "Why won't you snuggle with me?? Is it the stench of cancer?? Where is it?? Point it out to me!?!"

2. Hates that she has to wish for beating cancer in wishing situations (wishbone, shooting star, etc) instead of winning the lottery. Although, I actually think she still wishes on winning the lottery instead of beating cancer.

Hi Derin,

Just thought I'd chime in here. My sister (31 at the time) also had extrahepatic CC located on the common bile duct (diagnosed Sep 09). She had a Whipple done (removed gallbladder, ~12" duodenum, head of pancreas, bile duct) and had clean margins but 2/37 lymph nodes affected.

She did 8 cycles of Gemzar/Xeloda (2 weeks on, 1 off) and tolerated it well. I think cycle 5 or 6 got her where she hit critical saturation and vomited almost immediately upon finishing chemo (so keep a lookout for the cumulative effect). No radiation at the time because her oncologist said there wasn't really something to direct the radiation at (much like you pondered in a previous post).

She had clean scans until Sep 2011 when they found a necrotic lymph node and a recurrence of CC in the node. She's since done 5 treatments of SBRT and has just started a chemo regimin of FOLFIRINOX.

To give my 2 cents? I say do as much adjuvant chemo as you can tolerate. You had no nodal involvement and a small tumor by comparison (I think my sister's was 5cmx2cmx1cm) but this cancer is crazy. Write your name on the lawn, set it on fire and cry about why you don't love it crazy.

I'm linking this 2007 case study where a 60s Japanese woman had curative surgery on her extrahepatic CC (no nodal involvement) and then had it come back in a lymph node nowhere near her original tumor location. Just to point out how crazy this cancer is. Punch you in the face, steal your lunch money and then shocked that you don't like it crazy.

As far as radiation? I don't know what to do about that. In retrospect, I suppose my sister should have done radiation? I really have no idea, but the radiation oncologist mentioned recently that they don't like to do radiation to a site that's already received it. I also don't know if that's true or not but I'm simply passing that information along. If it was true I guess it's a question of keeping a bullet in the chamber?

I'm also including her bloodwork from the 09 chemo so you have some frame of reference:
Before chemo:
WBC 9.5
Hgb 11.4
HCT 35.5
Plat 340
ANC <I don't see this on her old bloodwork sheet

After 1 dose:
WBC 5.3
Hgb 11.5
HCT 36.2
Plat 329

Before final dose:
WBC 3.3
Hgb 11.2
HCT 35.9
Plat 348

WBC and Plat fluctuated pretty widely treatment to treatment. Hope this info helps!



(18 replies, posted in General Discussion)

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).


(10 replies, posted in General Discussion)

My sister just started a FOLFIRINOX regimin (5FU, Oxaliplatin, Irinotecan, Leukovorin) this week and she was not a happy camper. She did 8 cycles of Gemzar & Xeloda in 2009 and experience some nausea but nothing else significant. I'll keep you posted but I can already tell this is harder on her from a nausea standpoint.


(18 replies, posted in General Discussion)

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

@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. tongue


(18 replies, posted in General Discussion)

Background: My sister (then 31) diagnosed with extrahepatic CC in Sept 2008 (1cmx1cm). Whipple + 6 mo. adjuvant Gemzar/Xeloda. Clean scans until Sept 2011 (2cmx2cm necrotic lymph node near porta hepatis).

Sister started SBRT this week and has 4 more treatments. She says it feels like someone punched her in the stomach and then microwaved her guts. So that sounds like it sucks. We're hoping she gets mutant powers out of all of this. She's hoping for Wolverine powers. I want her to get telepathy. Neither of us want her to get Spiderman or Hulk powers. smile

We reached out to USC for a second opinion on treatment but never heard back. Not a big deal as we had our Hem/Onc doctor do a peer consult with Mayo and other doctors at UCLA. Basically he said what most on this board already know; there isn't strong data showing the effectiveness of adjuvant chemo and a few colleagues suggested doing nothing because the SBRT will have eliminated all detectable amounts of cancer. The majority was in favor of some chemo and our doctor favored aggressive chemo considering my sister's age and general health.

We're all in favor of aggressive treatment so this is music to our ears (although my sister hates needles so she's dreading chemo again). The doctor wants to start another 6 mo. cycle of 5FU+Oxilplatin+Irinotecan about a month after she finishes radiation. Any thoughts on the drugs/treatment plan or what X-Men powers we've overlooked?

I have no idea if this is common medical knowledge but it's recent and more info never hurts.

Have you tried medical marijuana for the nausea? I don't know its effectiveness in radiation but my sister had good results with it in chemo (Gemzar/Xeloda). She had one bad nausea episode when we experimented with her not using any marijuana after an infusion.
Also, the nutritionist at UCLA said ginger candy helps greatly with the nausea. We had mixed results with it. But again, it was during chemo only.

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.



(12 replies, posted in General Discussion)

Hi Susie. I think my sister qualifies as a young person (32 at diagnosis, 34 presently), at least for CC it seems she's a young person. What has worked for her is a darker sense of humor. Joking about death and dying as a method of coping with the legitimate prospect of it seems in poor taste and incredibly morbid (at least that's what our friends say) but dispelling some of the fear in death/dying has been a boon to her psyche; Jokes and focusing on procedure and protocol to give her the best chance at survival. Although, we have tapered the public joking a bit because our friends are uptight and haven't loosened up... maybe don't be so brazen with the joking smile

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. smile


(128 replies, posted in Hospitals)

Providing some info for SoCal readers. My sister (32 at the time) had a Whipple performed in 2009 and adjuvant chemo (Gemzar/Xeloda) for 6 months (2 weeks on, 1 off). So far we've been working through the UCLA Jonsson Comprehensive Cancer Center and have had no problem with their aggressive planning and decisive nature. Currently investigating radiation oncologists and others for more variety in opinions.

Dr. Oscar Joe Hines, surgeon, UCLA
Dr. Edward Garon, chemotherapy oncologist, UCLA
Dr. Percy Lee, prospective radiation oncologist, UCLA

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. smile

Hi Lainy. Thanks for the warm welcome.

In regards to what stage CC she had, my sister originally had Stage 2B (T1, N1, M0) Extrahepatic CC in 2009. Now? I couldn't really say. The only thing we have to go on at this moment is the positive biopsy of a 2cm necrotic lymph node in the porta hepatis.

Reading the CT scan, biopsy and pathology report makes no mention of cancer anywhere else but I don't know if that means there isn't more cancer or that they haven't looked.

Hello all. I wasn't sure where to post this question so seems like General was as good a place as any.

My sister (age 32 at the time) had a Whipple in Sept 09 for an extrahepatic CC. 12" duodenum, gallbladder, bile duct and head of pancreas were removed. 2 of 34 lymph nodes were positive for cancer. Surgeon was confident the tumor was fully resected. Procedure was done at UCLA.

She recovered well from the surgery (no complications) and proceeded immediately to 6 months of adjuvant chemotherapy - Gemzar and Xeloda. I believe it was 8 cycles (2 weeks on, 1 off). Chemotherapy done at UCLA.

While she's had clean scans every 6 months since then, her most recent scan showed a 22x20mm necrotic lesion in the porta hepatis. Biopsy confirmed it's cancer. Sucks, but what can you do, right?

The oncologist wants her to meet with a radiology oncologist and start radiation in a couple of weeks (and potentially another round of chemo) which is fine but when asking questions, it seemed like he was considering this to be more managing the disease.

My questions are: is there more that we can do? Is another resection possible? It seems like the only "cure" is resection or liver transplant and I didn't really understand why neither of those are an option (and I was too frazzled/it didn't occur to me to ask at the time). Should we be seeking a second opinion? And is that opinion another oncologist or a surgeon? I keep reading about CyberKnife. Is that something we should pursue instead of radiation?

It's somewhat confusing; logically I understand that recurrence of cancer is more serious than an initial diagnosis of cancer. But the size of her tumor is much smaller than two years ago and her health at the time of recurrence is much better versus two years ago. And yet the oncologist made it very clear that this time it is more serious.

Thoughts and ideas to clarify would be greatly appreciated.