Topic: Update on my dad!

My dad, Jim, was diagnosed with CC on 9/16/12...he's since been on gem/cis and has only had 4 treatments.  We received a CT scan after the 1st treatment and his tumor already shrunk from 4 cm to 3 cm which is a whopping 25%!  He had a metal stent placed at the end of November.  The end result of this procedure had him admitted to the hospital for a week with 3 major blood infections.  They believe this was caused from bacteria on either the stent or the tools that were used.  This was a major set back for my dad, as he missed 2 rounds of chemo and actually ended up back in the hospital overnight after being home for a week or so.  For over a month, he had antibiotics administered by an IV that he could not take off of him at home.  His gallbladder also became infected and he had to have an external drain placed to relieve it.  They ended up putting a plastic stent back in.  Now for the good news...when they placed the plastic stent, the Doctor came out and told me that his bile duct really isn't restricted anymore because of the signigicant shrinkage.  The Doctor said he might not even need the plastic stent replaced because there is no major restriction.  His infection is gone and tomorrow, the Doctors are pretty sure that they can remove the drain entirely as his gallbladder seems to be functioning again.  His liver tests are all normal and his CA-19 went from 600 to 39!!  He is pain free, has energy and pretty much feels like he did before CC.  The best news is that he has been approved by his insurance company to see Dr. Kato on March 1st.  Dr. Kato has reviewed his scans and is confident that he can remove the tumor.  We are definately a mixed bag of emotions!  One concerning issue is that his Oncologists at Dana Farber aren't thrilled about the surgery.  They want him to just remain on chemo even though it is not a cure.  We do not like this attitude and it really gets my dad down.  We understand that there are major risks and there is a high recurrence rate, but other people on this wonderful board have had great success with surgery and we hope to be one of those stories!  Thank you everyone for taking the time to post your stories and advice.  Honestly, I would have never found Dr. Kato if it wasn't for the board!! 

Nikki

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

Nikki, a big YIPPEE and please, please....do as you are and listen to your own gut, it will NOT steer you wrong! I should not say this BUT I would listen to Dr. Kato before Dana Farber, My husband had a Whipple and 5 ONCs said NO to chemo that it would not help him. We never regretted our decision. Yea for Dr. Kato, I am so excited for you and yur news. BTW, infections unfortunately just go with the territory. You are doing everything right, keep up the great job and welcome to GUT 101! Can't wait to hear more.

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: Update on my dad!

Thanks Lainy!  That is great advice.  If you listen to your gut then you can't regret any decisions you make.  Every doctor is going to have their own opinion, so we just have to do what WE feel is right.  We want this tumor OUT! IF it grows back, we fight it again smile I will tell my dad that many other CC fighters have also had infections, so he is not alone!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

Hi Nikki,
Just to add my 'two cents' to the conversation, surgery is the only path to cure for this hideous disease. The risk is significant and the recovery can be awful (personal experience). So it is a risk/reward situation. But I would recommend serious consideration of surgery - it appears to be the only hope. Praying that God will give you guidance and the doctors divine insight.

bob

Re: Update on my dad!

Nikki, Teddy used to get a "blood" infection 2 X a year. I knew when the fever and chills came it was time for the ER> They would put him on a Levaquin IV and he was fine every time in a few days. Oh, a blood culture always neded to verify. My Teddy used to say, "now we know what the problem is, lets fix it". Your Dad sounds much the same way and that makes for a good attitude.

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: Update on my dad!

My dad and I met with Dr. Kato on Friday.  Before our appointment, he had an MRI which showed no mets and about a 50% reduction in only 5 rounds of gem/cis!  Dr. Kato is absolutely amazing...so much so that I had to give him a hug!  He spent over a hour with us, showing us the images and explaining the surgery.  Because the MRI was right before our appointment, radiology did not have time to read the MRI, so Dr. Kato is not positive as to whether my dad will either have his entire right side of his liver (including the artery) removed or if he will just cut the artery and sew it back together (as they do in liver transplants).  If the tumor is still branching up into the liver, then the right side of the liver will be removed.  My dad's gallbladder will also be removed which is nice because he will no longer have to have the external drain.  Dr. Kato feels like right now is the best time to do the surgery because my dad is showing such great progress with chemo, has no mets and is in good health.  He did remind us of the high recurrence rate which we are aware of, but he said that my dad is having such a great response to chemo, that it might just keep the cancer from ever returning!  To top it off, ABC was there to film our story for their hit show, NY Med!  Our visits and my dad's surgery will be featured on an upcoming episode...hoping to raise awareness for cholangiocarcinoma!  I cannot say enough good things about Dr. Kato!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

Hi Nikki,

That is such great news about your Dad!! When is his surgery date? I am a huge fan of the NY Med show. That is so awesome that you were filmed to be a part of that show!! Please keep us informed as to when it will air. I am hoping and praying your Dad will have a very positive outcome. Way to get the word out about CC!!!!

Love and hugs,
-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: Update on my dad!

Oh, Nikki, I am doing cartwheels, well in my mind, anyway, YIPPEE What a fantastic appointment you had. Please let us know when the surgery is to be and can someone tell us what Channel NY MED is on and when? Are we something? We now have celebrities! Oh, I am so very happy for you and your family!

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: Update on my dad!

I will definately let you all know what date we schedule the surgery for!  NY Med is on ABC.  Since they have to film the surgery and then edit the footage, it won't be aired for some time, but I will be SURE to post a new topic to this site to let everyone here know exactly when to watch.  During my interview, I will be sure to give a shout out to this board as it has helped so many including my family and I.  I made sure to tell Dr. Kato that I found him because of this site! 

Thank you Pam and Lainy for your kind words as always smile

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

A big THANK you little Grasshopper, you have learned your lessons well! We most excitedly await all the news!

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: Update on my dad!

Nikki....This is fantastic news- so excited for you and your family. 
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: Update on my dad!

Hi Nikki,

This is great news for you all and I am so chuffed for your dad!! Please let us know how it goes and my fingers are crossed for you all! And that is great about the ABC piece as well, hopefully I'll get to see it over here as well.

Hugs,

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: Update on my dad!

Thanks Marion and Gavin!  Gavin - the episodes can be viewed online...hopefully you can watch them here!  http://abc.go.com/watch/ny-med/SH55214626

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

Thanks for that Nikki, looking forward to seeing this!

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: Update on my dad!

Nikki-CONGRATS!! I am so excited for your dad and all of you!!
Exciting about NY Med show, this will be the second time they will film Dr. Kato doing surgery on a CC patient . Tell your dad we will alway an autographed pic of him and Dr. Kato!!
Lots of prayers and HOPE-Cathy

Re: Update on my dad!

Surgery is scheduled for 3/26. Pre-op PET scan shows no mets. He passed the cardiac stress test. We are on our way!  Any advice for post-op is welcomed! We are nervous and excited!  Hoping his recovery is speedy one so we can get back home. Might have to spend Easter in the hospital, but it will all be worth it!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

Nikki....your Dad passed with flying colors, fantastic news.  I have learned that the nurses in these units are incredible people.  They know exactly what to expect and what to look for.  Know that each and every day is a step toward complete recovery and that virtually everything that may pop up, will be addressed immediately.  Oh, the pillow.  I am sure that others have tons of information for you, but I am still stuck on the pillow for coughing up phlegm.  When pressed gently against the abdomen, it really helps reduce the pain. 
Have a wonderful Easter - what greater gift is there than what you will be receiving?
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: Update on my dad!

Nikki, I wish to add my excitement and good wishes to all the others. Dad might want to ask for an Epideral as it will numb the area for 24 - 28 hours. BTW I have yet to hear of the Easter Bunny skipping a hospital! I don't think we have ever had such a busy time as we have coming up on the 25th and 26th. This is truly awesome!

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: Update on my dad!

Hi Nikki!!

March 26th must be a great day!! My daughter, Lauren is having her surgery that day too at U of M. I know it is scary, but we are all so thrilled for the opportunity. God bless your Dad and I will be hoping and praying for a successful surgery and recovery!

Love and hugs,
-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: Update on my dad!

Okay...a pillow for coughing and an Epideral...got it!  Thank you SO much for your kind words and advice.  It's nice to have people that know what you are going through support you!  Every time I read a response from all of you, I tear up! 

Pam - what a crazy coincidence!  I will be praying for Lauren while I pray for my dad in the waiting room.  I agree, just having the opportunity is a blessing.  It's such a mix of emotions, but I always remember to keep it positive.  I truly believe that positive thinking brings positive outcomes!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

wow, great news.  Lots of prayers for the upcoming surgery.  I was not treated by Dr Kato, but from what I have read on this board, he sounds amazing!

Keep us posted!

Susie

Re: Update on my dad!

Hi Nikki,

What great news about your dad passing the cardiac test and also about the PET as well! Excellent stuff! Fingers crossed that his surgery goes well and I look forward to hearing about it. Loads of positive thoughts coming your way!

My best wishes to you and your dad,

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: Update on my dad!

Hello!  My dad's surgery was on 3/26.  We arrived at the NY Presbyterian Hospital at 5:30 AM.  Surgery began at 7:30, right on time.  Dr. Kato estimated it to be about 8 hours.  I made my way to the waiting room and was a nervous wreck until about 11 when I knew that they must have gone through with the surgery since 2 1/2 hours had passed.  Around 3:30 PM, Sarah (Dr. Kato's assistant), came out of the OR and my heart was pounding.  She told me that they were not finished resecting the liver and that surgery was going to be about another 4 hours because they were going to go ahead with a Whipple.  The tumor, to everyone's surprise, was wrapped around the duodenum and to get very clean margins, Dr. Kato decided this was the best route.  At about 9:45 PM, Dr. Kato came out covered in sweat with bloodshot eyes and told me the tumor was out and they got clean margins!  I didn't even know what to say...I think I just babbled a bunch of words that I hoped were meaningful.  Dr. Kato resected my dad's right lobe of his liver (including the atery), the gallbladder, the duodenum, the bottom portion of his stomach and the head of his pancreas.  He had to reconstruct his portal vein as well.  He removed some tissue around a nerve near his pancreas which is being tested.  He also removed a bunch of lymph nodes which are also being tested.  Although I am worried about the results of the tissue surrounding a nerve, I am beyond thrilled the surgery was a success!

My dad spent two days in ICU.  He would have went to step down on the 2nd day, but he has a bateria in his GI tract (that most of the general population has) so they want to keep him away from other patients for their protection.  Once a single room was available, he went to the regular floor.  He has been doing okay.  He started eating clear liquids about 3 days ago.  He is on a lot of morphine because of the pain.  Today we found out that there is a leak from the pancreas that needs to be resolved (apparently this is common).  He does not have to be asleep for the procedure.  Besides that, he is making baby steps.  I keep reminding him that this is one of the most difficult procedures to recover from and that he is doing great! 

It is tough having him in NY when we are from MA.  I just came home last night.  Today was the first day he had to spend alone and although my heart is breaking, I know he is being taken care of.  My family will be back with him starting Saturday.  It looks like he will be there till at least 4/12.  If anyone has ANY advice or information regarding recovery from a Whipple, please share!!  Thank you so so much for all of your thought and prayers that have got us this far!

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Update on my dad!

Dear Nikki, first I have to give a rousing YIPPEE for your Dad. I had tears of joy as I read your post. Tell him that my husband had a regular Whipple and that it is the largest surgery to the human body, not life threatening like heart surgery but the largest and then to add all the extras Dad had, OMG. The only thing I can add is do not rush the back to normal things, to take his time. Take the pain Meds as long as you need to otherwise you are using the energy up that you need to heal. I will keep my prayers going for a smooth recovery! I need to give him one more YIPPEE!
I wonder if wonderful Dr. Kato is still sleeping.....

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: Update on my dad!

Hi Nikki,

This is great news about your dad, superb news really and thanks for sharing it! I know that your dad has got so much to recover from with the surgery but it is great that he had this and that it went so well. Majorly chuffed for you both!

I know that it must be so hard for you having to leave your dad at the hospital and for you not being there with him, but he is in great hands and i know they'll take excellent care of your dad too. Stay strong and try and focus on the positives if you can. Fingers are crossed for your dads recovery to go well.

Hugs,

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.