nikki4470
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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?
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
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
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
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!
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
I will tell my dad that many other CC fighters have also had infections, so he is not alone!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
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!
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!
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!
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
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
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
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!
