1

(7 replies, posted in In Remembrance)

On June 15, 2012, 7 months and 1 day after diagnosis with stage IV CC, my Dad lost his battle with this evil, selfish bastard.  I was blessed to be with him when he passed away.

Our family requested that donations in his memory be made here, so that maybe in the future someone else will be spared our heartache.

I love you, Dad.  I miss you.

not only did you run it - that's a fantastic time!
i'm a runner myself, and you are an incredible inspiration.  congratulations!

3

(14 replies, posted in General Discussion)

mary, i am so sorry.
i'll be keeping you in my thoughts.

4

(13 replies, posted in General Discussion)

last i heard, he gets decadron and aloxi before the infusion.
that may have changed, they live far from me and it's hard for me to keep up with everything.

5

(13 replies, posted in General Discussion)

This is the protocol Dr. Javle has my dad on as well.  It is, to be blunt, kicking the s**t out of him.  In much the same way it has affected your son.  We are not yet to tube feeding status....yet being the key word.  The diarrhea and dehydration are the current stumbling blocks for him, and he's not eating much to speak of, although i'm told he's eaten more the last day or two.  His comments have been "i'm not eating if i can't taste anything and i'm just going to s**t it out".  He looked and sounded marginally better after a couple of weeks off the 5FU (his counts and electrolytes were just pitiful).  His markers have consistently risen as well, despite near-complete clearing of his metastases.  Weird, weird.

His original protocol was FOLFIRINOX, and that was like tylenol compared to this.  This is just rotten. 

please let us know how your son's doing.  i'll be thinking of you, lots.

6

(2 replies, posted in Chemotherapy)

He sees Javle also! 

Yes, it's good news.  No one can explain the rising CA 19-9, so they're just rolling with it until there's a reason not to.  Since the pancreas is clear, there's no reason not to change chemo. 

The 6 & 3-year-old will do it, for sure!  I've only got half that....the younger half....and i cannot begin to imagine.  Girl, you've got some iron in you.

7

(2 replies, posted in Chemotherapy)

Dad's been at MDA the past couple days.  Current thinking is that he may never have had cancer in his pancreas at all *scratches head*.  Lung mets are considered dormant.  A very small increase in liver involvement but stable overall.....and you won't ever hear us complain about stable.

so, buh-bye FOLFIRINOX, hello gem/cis.
he's happy to be shuffling loose that ass-kicking pump. 
i can only hope he tolerates the new protocol as well as he did the previous. 

scan week just sucks, no two ways around it.  but for another 8 weeks, it's done.  he and mom will be able to celebrate their wedding anniversary next week with a little less of an albatross.  not that CC isn't an albatross, but at least they don't have scans staring them in the face.

8

(26 replies, posted in Introductions!)

Les, i'm sorry to hear about Sarah's passing.  we are keeping you and your family in our thoughts.

9

(4 replies, posted in General Discussion)

Scans are next week.
CA 19-9 keeps rising.  it rose despite a very large reduction in tumor amount, per previous scans. 
They are discussing changing Dad's chemo protocol from FOLFIRINOX to gem/cis or something else.  We definitely trust Dr. Javle and Dad's local oncologist to make the correct decision.

I am torn between wishing scans would hurry up and get here, and wishing they would never come.  I'm afraid this appointment will bring the bad news we don't want.

Cancer, i hate you.

Dad's been on FOLFIRINOX since december and has done beautifully in terms of side effects and tumor response in the pancreas.  the most notable side effect has been diarrhea.  he hasn't had any of the cold sensitivity/neuropathy-type side effects at all. 

dr. javle's awesome.  let us know how you're doing.

11

(2 replies, posted in Chemotherapy)

Dad had a lot of tumor when he was diagnosed.  chemo totally cleared his pancreas (per CT), shrunk everything in the liver, and shrunk or cleared everything in the lung.  to say that everyone has been flabbergasted would be an understatement.

so why is the d**n CA 19-9 going UP?  he's been scanned from top to bottom, there isn't anything new anywhere that they're aware of.  he goes back to MDA in 2 weeks and scanxiety has set in, his local oncologist is talking that a change in chemo might be considered because his protocol is for pancreatic adenoCA which he no longer has.  i get that it's like using a breast protocol to treat leukemia, but still...if something worked so well it's hard to conceive of changing it.

unless, of course, the scans missed something huge.
gah.  i'll stop talking.  i haven't had enough coffee to be this freaked this morning.

12

(9 replies, posted in General Discussion)

Dad has been using it since he was diagnosed in november.  it works beautifully for him, so much so that he's not using anything else right now for pain.  he is also on chemo.

don't let yourself get into the pain cycle.  pain is harder to manage when you let it go without treating it.  let us know how you're doing?

13

(17 replies, posted in Introductions!)

i am so sorry.  thinking of you and sending lots of positive energy your way.

while you're on the search for info re. use of 5FU-based protocols for treatment of CCA -

am i looking in the wrong place for any studies describing the use of FOLFIRINOX/FOLFOX/FOLFIRI for CCA?  can't find anything other than pancreatic CA studies.

15

(7 replies, posted in Adverse Reactions & Side Effects)

i was going to suggest a proton pump inhibitor as well.  also, have you asked about aloxi (palonosetron, given IV on the first day of chemo) or kytril (granisetron - does come in a tablet)?  let us know how she's doing.

16

(30 replies, posted in General Discussion)

Dad had a PICC for the first 2 months (grrrr) and thursday was his first round of chemo (FOLFIRINOX) with the port.  he is so much happier without that infection risk dangling from his arm.  he was pretty sore last week, and itchy from all the tape, but he's much, much happier with the port.

17

(16 replies, posted in General Discussion)

sharonlee, i'm sorry.  i'll be keeping you in my thoughts.

18

(10 replies, posted in General Discussion)

jtoro, how's it going?  what are they giving you for premed when you get chemo?  dad gets aloxi and decadron, and he takes immodium and zofran on his own beforehand, and does - with occasional exception, and he's not chancing a long car trip, LOL! - beautifully. 

if you're still having a lot of pain, maybe your doc would consider a patch?  fentanyl works well for a lot of people.

19

(3 replies, posted in Introductions!)

Hi everyone, thank you for letting me post here.  I've been lurking for a couple of weeks.  just upfront, i tend not to capitalize when i post online - please bear with my laziness  big_smile

Dad (62) was diagnosed with stage IV pancreatic adenoCA (mets to liver, lung) 11/16/11.  he was seen by dr. javle within 2 weeks of diagnosis and started on chemo.  he's just completed cycle 4 of FOLFIRINOX and has done amazingly well.

when i say amazing, i mean it.  his recent scan shows shrinkage or stability of all lung mets/mediastinal nodes, shrinkage of all liver tumors and clearing of nodes, and disappearance (!!!!!) of the rather large pancreatic tumor.  the tumor is gone.  dr. javle said he'd never seen anything like this, and that he'd had the radiologist read it multiple times.  his official diagnosis is now listed as CCA.  so here we are.....

he met with dr. vauthey this morning.  at this time, he's got too much liver involvement for surgery to be an option, but they aren't discounting it for down the road if he continues to respond like a champ to chemo.  they don't plan to alter his chemo regimen at all, even though this protocol isn't traditionally used for CCA.  i'm actually upset that they were put through a surgical consult, knowing how much of the liver is involved, but i guess they are covering all their bases. 

i'm a medical speech pathologist who has worked with a LOT of people with cancer and my husband is a physician, so we're very comfortable throwing around words like FOLFIRINOX and ANC and metastasis and whathaveyou.  what i'm NOT comfortable with is that my dad has cancer.  i'm more comfortable with his odds now than i was when the diagnosis was pancreatic primary, but still.  it's so much harder when it's my dad as opposed to a patient i like. 

sigh.  i am happy to have found y'all.  sorry to have, but glad.  you get it.....