Topic: Light at the end of the tunnel so to speak...

OK, quick summary: Resection 9/14/11 at Sloan Kettering (3/4 of liver, gall bladder, 7 lymph nodes, reconstructed bile duct out of small intestine) with all clean margins, wasn't officially diagnosed with CC until 5 days after surgery when pathology came back (it was 1cm x 0.7cm x 0.5cm in the bile duct only), returned home to FL 11/1/11 and back in Sarasota Memorial Hospital 11/2 with a 5" abscess, added a drain in the center of my chest, it took 7 weeks for bile to stop leaking, drain came out 12/27/12 started adjuvant chemo on 1/13/12 with no real 'plan' in place.

Found out today that I only have one chemo cycle to go! Gemzar only for one cycle was in Jan. We then added Cisplatin and I'm getting my 2nd dose of round 3 Gemzar/Cisplatin combo right now, next Friday is the off day, then 2 more doses for the 4th cycle and chemo will officially be DONE!! I will then have a CT to see what there is to see and schedule an appointment with a radiation oncologist for adjuvant radiation therapy.

It's been a heck of a journey so far and I've met a ton of great people on this blog, everyone cares so much about everyone else even though they are thousands of miles apart and probably have never met... I find it very therapeutic to be able to write posts, read others posts, and share with everyone else who is dealing with this disease.

I've probably had 13-15 CT's over the past 6 months, and every one after surgery has had nothing to report. The last one was 1/13/12, the first day of chemo. Did the CT in the morning, chemo in the afternoon so I'm not going to give in to scanxiety, forget about it!  Hope you all have a great weekend, I'll be jacked up from the steroids tonite, going to a friend's surprise 50th birthday party, and heck, one beer won't kill me so I may indulge a bit!! Oh yes, since I won't be able to sleep, gonna grab that fishing pole around 1am and have some fun for an hour or so too! We got 3 keeper speckled trouts Saturday last weekend with my brother in town (daughter caught 2 18"ers and son caught one 17"er) and that was Sunday dinner, fed 6 people!! See ya!

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Light at the end of the tunnel so to speak...

Derin:
What great news! I'm so happy for you! Watch that alcohol, tho, buddy! smile
I know how you feel about one drink tho: the other day I would have killed for a chocolate martini! I just order my Arnold Palmers and pretend.
I hope this round went as well as all the others, so you can have a great time at the party and out fishing. What a powerhouse you are.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Light at the end of the tunnel so to speak...

Dear Derin, all sounds great and doesn't sound 'fishy' to me at all. Great post and enjoy your weekend! By the way, Teddy's ONC had always told him he could have a little red wine here and there. If he felt like a brewsky he did it with non-alcoholic beer. Actually he really lost his taste for liquor! A Mish aberic coming your way tonight. LOL  Let's see our good people figure that one out!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Light at the end of the tunnel so to speak...

Hi Derin,

Sounds like a good weekend ahead for you.  Hope you have fun at the party.  It's funny but John's onc never told him not to drink.  He acted like wine or beer was fine--just don't overindulge.  Bet the kids were excited about catching the fish.  Kaden loves to fish; in fact, he would stay out all day long if he could.  You have been so strong and upbeat through your journey with CC and hopefully everything will look great on your scans.  I hope you will continue to post as I have enjoyed reading what you have written.  Hugs,  PeggyP

Re: Light at the end of the tunnel so to speak...

Hi Derin,

I am glad you are doing so well and can still enjoy all of your favorite activities. I hope to hear great reports as your journey continues. All the best to you and your family in your life ahead.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Light at the end of the tunnel so to speak...

I find it funny that some oncs never say anything bout drinking. They ask me EVERY time I go to the oncs to make sure I haven't had a drink. I hope they tell me I can have a little something for my birthday, etc.....

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Light at the end of the tunnel so to speak...

Hi Derin,  I am a fellow cc patient who also catches speckled trout in FL, not too far from you at Saint James City on Pine Island. Just visited my onc and surgeon at Mayo in MN and specifically asked about alcohol. Dr. Alberts (a great doctor) told me it was ok to have 2 or 3 glasses of wine a week.  Whew! Because that's what I've been doing. Now I'm going to go post on the good news board.  Congrats on having only one chemo cycle to go!

Re: Light at the end of the tunnel so to speak...

Dianne,
I went out this week Wednesday fishing in Sarasota bay, had a blast. Caught a bonnet head shark about 2.5' long, fought for 15 minutes and my arm was way tired. Also, nice keeper 18" spanish mackerel, and (this is the good part) 5 gator trout!! Shortest one was about 19", all were fat fat fat! Lots of fun! We had the mackerel and trout for dinner Wednesday night and still have a bag of trout frozen that will feed the family for one more dinner. Fresh fish, right out of the water, nothing better!

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Light at the end of the tunnel so to speak...

Hi Derin,
I'm going to show your post to my husband who is a bigger fisherman than I.....he'll probably know about gator trout....I don't remember hearing about them.  We have a friend who actually catches alligators in the Everglades and my husband thinks he'd like to try that.  Not me! Do you go tarpon fishing?  We are snow birds so will head back to MN in a couple weeks, then just plain old walleye and northern pike to fish.
Best wishes with your chemo and your CT's.  I am glad I got switched to MRI's because I sure didn't enjoy drinking that CT solution!  And keep on a'fishing!

Re: Light at the end of the tunnel so to speak...

The term 'gator trout' just means a speckled trout that is a BIG FAT MOTHER!! Typically 20" or more in size and a huge girth with a big fat mouth and large two front teeth! You get a lot more meat off of them than the typical 15" -18" trouts.

Don't mess with tarpon too much, they are a trophy fish, I like being able to keep what I catch and put some of it on the table, not that I could with the bonnet head shark, but that thing was fun anyway! Good luck up north!

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Light at the end of the tunnel so to speak...

Hi Derin,

Thanks for your fishing update, sounds like you had a blast and a very successful trip as well! 20" trout, that is indeed a big old trout, I hope it tasted good! I used t do lots of fishing with my dad years ago, all of it sea fishing mainly from boats out in the North Sea off of Scotland. Plenty of very cold trips for cod and haddock mainly with the occasional large eel and if very very lucky, a halibutt too!

Gator trout is a new one on me, but it sounds like what we have in Scotland and is called the brown trout. We get brown, rainbow and sea trout as well, all most tasty too! Especially the sea trout when they are in season. Mackerel, I love them but we only get them in the summer months here. I'm sure I've heard of tarpon before, are they not quite aggresive fish which could give you a nasty bite? We obviously don't get them here, far toooo cold!

Thanks for your post. It brought back a lot of memories for me in going out fishing with my dad when I was a teenager. He used to get sea sick badly and I would have to get his rod and reels set up when we went boat fishing! Happy days indeed. Good luck with your future trips and get that freezer filled!!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Light at the end of the tunnel so to speak...

Thanks Gavin! Like I said the term Gator Trout just means a bigger than normal Speckled Sea Trout. Tarpon are not at all aggressive towards humans and really don't have teeth, but very much aggressive towards other bait fish! They are also not good eating, only a sport fish. Mackerel and kingfish are running a bit now. You can get the macks in the bay, but kings are slightly offshore, but within a mile or two. I'm familiar with the halibut, cod, haddock somewhat, but they are very northern fish.

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Light at the end of the tunnel so to speak...

Derin...hmm....why do I feel like preparing fish for dinner today?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Light at the end of the tunnel so to speak...

Thanks Derin. Yes the hallibut, cod and haddock are northern fish and they are plentiful around our cold waters, very cold actually! The hallibut not so much but the cod and haddock are and haddock is Scotlands most popular fish. Very tasty it is too!! Hallibut is so expensive and is the most expensive fish in our waters. Mackerel is cheap and plentiful and also very tasty. Yum!

Fish for your dinner tonight then Marion!!!

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Light at the end of the tunnel so to speak...

I love, love, love, smoked Mackerel, but only the European version.  (It is much less salty than the American counterpart.)  It is my staple when visiting my family.  In fact they joke by saying I should consider swimming back home to the U.S. 
BTW; we had fish for dinner tonight.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER