1

(33 replies, posted in Good News / What's Working)

Hello!

I wanted to give a little update on my dad's progress.  We finally travelled back to Boston from NYC on 4/19.  We met with Dr. Kato that day to go over all of his biopsy results...Dr. Kato informed us that exceptionally clean margins were obtained with NO lymph node involvement (after removing 19 all together)!  Dr. Kato said that for my dad's stage, he couldn't have asked for better results.  He was thrilled as were we!  My dad is still recovering at home.  His biggest challege remains the enormous incision.  Unfortunately, the incision got infected a few days after surgery, so they had to remove the staples which left a huge open wound.  He is starting to eat a little bit more too which is also a major challege after a Whipple.  We will be going to a follow up appointment at Dana Farber to discuss follow up chemo on 5/14.  We are so thankful for each and every day and want to remind everyone that there is hope and never to take no for an answer! 

Nikki

2

(122 replies, posted in General Discussion)

Pam,

This is great great news!  I love to hear these success stories.  Praying for lots of liver growth and a successful 2nd surgery.  Lauren is very lucky to have such a great Mom!  Having a "partner" through this battle is invaluable.  I talked to Dr. Sonnenday over the phone when my dad was first diagnosed...he is amazing.

Love,
Nikki

3

(33 replies, posted in Good News / What's Working)

Thank you ALL so so much for all of your responses!  I love posting to this board because of the support and great feedback I receive from all of you! It has officially been 2 weeks since the day of his surgery.  He would have been discharged, however, his incision is still infected (which is common).  Today he has to walk A LOT - Dr.'s orders.  His pancreas is still leaking so he cannot eat solids until that is cleared up.  My aunt is with him now.  Hoping and praying that he can come home Friday as we have a pilot lined up from Angel Flights! 

Laura - thanks for giving me an update about your mom...obviously hearing from someone that has also had surgery with Dr. Kato is invaluable.  They watch over him at the NY Pres like a hawk.  It's a great hospital.  I'm happy to hear your mom is progressing well...that is great news!

Lainy - I took your advice and told him how large this surgery is and that he has to give himself some credit! 

Taking one day at a time...focusing on the positive - that he was lucky enough to be a candidate for surgery and that we found Dr. Kato through this amazing web-site.  I don't believe anyone else could have accomplished what Dr. Kato and his team did for my dad.  He is truly gifted from God and the most humble man I have ever met.

4

(33 replies, posted in Good News / What's Working)

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!

5

(33 replies, posted in Good News / What's Working)

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!

6

(33 replies, posted in Good News / What's Working)

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!

7

(10 replies, posted in Good News / What's Working)

Holly - for what you had done, 7 days in the hospital isn't bad! My dads surgery won't be too involved as it stands right now, but Dr. Kato said he might be in the hospital for 10-12 days. We are praying he gets to leave earlier than that! His surgery is 3/26. I am excited and dad is beyond nervous.  I love Dr. Kato. He is amazing. I am staying at Aloft in Harlem. It's about 240 a night, which is expensive, but it's a 10 minute subway ride and near my NY office (I work out of Boston), so it's more of a convenience. Do you have to pay to get over the bridge to and from the Crowne Plaza to NY Pres?

8

(10 replies, posted in Good News / What's Working)

Hi Lauren,

Your post brought me so much joy today!  I am so happy to hear of your mom's success with Dr. Kato.  My dad and I met with Dr. Kato for a consultation on March 1st.  My dad will be getting surgery in the very near future.  We are still unsure as to exactly the extent of the surgery, but there was mention of possibly having to remove 1/2 the liver and hepatic artery like your mom.  I'm happy to know you are pleased with the care at NY Pres.  I have heard nothing but good reviews.  Did you stay at a near by hotel during your mom's recovery?  How has your mom's recovery been? 

Praying for a quick recovery for your mom!

Nikki

9

(33 replies, posted in Good News / What's Working)

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

10

(33 replies, posted in Good News / What's Working)

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

11

(33 replies, posted in Good News / What's Working)

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!

12

(33 replies, posted in Good News / What's Working)

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!

13

(33 replies, posted in Good News / What's Working)

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

Hi Darla,

My dad and I will also be meeting with Dr. Kato for a consultation on March 1st!  Our appointment is at 3 PM.  I have heard nothing but good things about Dr. Kato.  We are extremely eager to meet him.  Good luck to you!  Can't wait to hear how it goes.

Nikki

15

(20 replies, posted in General Discussion)

Marion - thank you for your insight.  Yes, he was placed on minocycline for the possibility that his skin breaks out.  It's only been a few days since receiving Panitumumab, but he hasn't broke out thus far.  I am going to tell him about drinking gatorade.  That is a great suggestion!  The least we are going to do is meet face to face with Dr. Kato.  We need to weigh our decisions and what the best approach is.  Surgery immediately?  Receive more chemo before surgery?  Try to kill the tumor with just chemo?  These are all very difficult decisions, but the more Dr.'s we meet with the better information we will have to make the right choice.  It is so unbelieveably overwhelming! 

PCL1029 - although everyone fear reoccurrence, I am truly happy for you that you are able to have surgery the 2nd time around.  That is wonderful, wonderful news!  I wish I knew how many successful surgeries for cholangiocarcinoma Dr. Kato has performed.  I'm assuming he will answer that questions when we meet with him in January.  It's hard to tell how my dad reacted to Panitumumab because as you may have saw from my last post, he ended up in the ER with an infection the day after infusion.  Do you mind telling me when you were diagnosed, when you had surgery and how long you went before reoccurrence?  Thank you for your response...the more people I hear from the better I feel!

16

(20 replies, posted in General Discussion)

Update:

I had to rush my dad to the ER on Wednesday.  This was the day after his 2nd round of chemo.  He had chills, a fever and was vomiting.  He is still in the hospital with an infection most likely from the metal stent that was placed on Thursday.  He had the metal stent removed and the plastic ones put back in yesteryday afternoon.  The metal stent seemed to be causing the gallbaldder to inflame, most likely because it was pushing it closed.  It seems to be too large for his bile ducts.  His temperature is down this morning.  He is on multiple IV antibiotics for the infection.  He is pushing through! 

Now for the good news...Dr. Abrams came by to see him last night and took a look at his CT scan and said that the 1st round of chemo has significantly shrunk his tumor!  We were all shocked (including Dr. Abrams).  One treatment.  It's amazing.  And the 1st round didn't even have the trial drug in it, so going forward the infusion could be even more effective.  If he continues on this road, he might not even need the surgery and could kill it with chemo and then radiation.  We feel so blessed even though he is so ill right now!

17

(20 replies, posted in General Discussion)

Thank you Lainy!  We are lucky to have found Dr. Kato's name and it's all because of this wonderful board and it's wonderful members!  I hope you and your family enjoy the holidays as well!

18

(42 replies, posted in Introductions!)

Hi Holly,

Thank you for your opinion!  I'm so glad to have found someone that has met with Dr. Kato.  I have read countless articles on his success with some of the most difficult surgeries in the world. Right now, we need someone who is going to be brave and think outside the box!  We are so excited to meet with him.  I know he does not take on all cases and will turn patients away if he believes he cannot help them, so the fact that he is willing to take my dad on means only good things.  I am excited that you are in some of the best hands in the world!  Let's definately keep in touch.

Nikki

19

(42 replies, posted in Introductions!)

Hi Holly,

My dad is meeting with Dr. Kato in January.  He had an unsuccessful resection and 2 other surgeons said they would not operate after this attempt.  Dr. Kato called us yesterday and is confident he can help my dad.  I would LOVE to hear about your experience with this team thus far.  Sending prayers and strength your way!

Nikki

20

(20 replies, posted in General Discussion)

We found out yesterday that my dad did not have a mutation to the KRAS wild-type gene so he is officially on the trial and as I type this is receiving Gemcitabine, Oxaliplantin and Panitumumab.  It's a long day for us here at Dana Farber.  We arrived at 7 AM and will not leave until 3:30.  We are lucky that we live so close to Boston.  The first treatment was two weeks ago and the next day my dad's pain that he had been experiencing was completely gone.  We assumed there was no way the chemo would work that quickly, but it was confirmed by Dr. Abrams and Phelps this morning that it is a sign that my dad is responding.  This is such great news for us!

About a 1/2 hour after I received the call that my dad officially got the last spot on the trial, we received our long awaited call from Dr. Kato.  He has reviewed my dad's records and is confident he can remove his tumor.  This is so great to hear since we had an unsuccessful attempt at Beth Israel in Boston.  We are meeting with Dr. Kato in January.  It is definately nerve racking because you wonder why three surgeons say no and then the 4th says yes.  You ask yourself, why is Dr. Kato confident and others not?  We were not thrilled this morning when meeting with the Doctors because they weren't very excited  about the news about us meeting with Dr. Kato.  They warned us of the high reoccurence rate and said we need to weigh the pros and cons of surgery.  Our thoughts right now are get it resected if at all possible.  Trying to stay positive!

These are great suggestions!  I am going to send them to my dad.  I will let you all know if they help at all.  Thank you Lainy, Susie and Marion

My dad has been experiencing nausea for a good 4 days after his first round of chemo.  He was prescribed three different types of nausea medication, but he does not like taking pills.  I was wondering if anyone had any suggestions for natural ways to reduce nausea and increase appetite.  Thank you!!

23

(20 replies, posted in General Discussion)

Just wanted to give an update on my dad.  My dad went in for his first round of chemo at Dana Farber this past Tuesday.  He is on a clinical trial which combines Panitumumab with Cisplatin/Gemcitabine.  On Tuesday he only received the Cisplatin/Gemcitabine (4.5 hour infusion) because we are waiting for the results of his biopsy.  He cannot have any mutations to the KRAS wild-type gene in order to stay on the trial.  My dad had been in pain since he was diagnosed in September and since he received chemo on Tuesday, he has not been in any pain at all!  It seems almost silly to think the chemo has already helped control his pain, but that is the only new regiment he's added into his routine since he was diagnosed!  He is tired and slightly nauseous, but he said he would take that any day over the pain he was experiencing.   

He recently got a CT scan and it showed no growth of the tumor since his very first CT scan in September.  This is great news since the only treatments he was doing up until this week were natural - accupuncture and Ton Reng Healing.  He is an amazingly strong man and I know he is going to make his was to surgery and into the cancer free zone!

24

(20 replies, posted in General Discussion)

Thank you both so much!  That's all we need to hear is that there have been people that have gone from unresectable to resectable.  If we keep that as our goal and keep praying everyday, I am sure we will get there! 

My dad's records are with Dr. Kato, Dr. Sonnenday and Dr. Chapman.  If he has promising results from chemo, then we are at a head start having my dad's case already in their very capable hands.

Marion - I am excited about Panitumumab.  It is the first fully human anti-EGFR monoclonal antibody.  The phase II trial is full (we got the last spot), so I'm sure that people have been having positive results. 

Praying like crazy for detachment!  First treatment is on Tuesday.

Hello,

My name is Nikki and my father (age 57) was diagnosed with a Klatskim tumor (4 cm) back in September.  In October he had surgery, but was told that because the tumor was wrapped around the hepatic artery, they could not safely remove it.  He is starting a clinical trial next week at Dana Farber.  The clinical trial is the use of Gemcitabine, Oxaliplantin and Panitumumab.  We are praying that the tumor detaches itself from the artery, so it can be resected.

I wanted to know if anyone was initially told they were unresectable, but then was able to have surgery because of good results from chemo/radiation.

Thank you!
Nikki