He is feeling well except for some mild cramping which he's pretty much always had since the Whipple. His energy is definitely depleted - I think the cancer is consuming his energy. All other tests are normal. He continues to gain weight which is great. I just hope the folfirinox works. I just spoke with Dr. Kato's assistant and she is going to have him look at the scan when it arrives. A second surgery is not ruled out at this point. We will have to see what Kato says. I think it depends if he has enough healthy liver. I'm so lost and distraught. My dad is just crying
Re: Received bad news yesterday and looking for advice (11 replies, posted in General Discussion)
Re: Received bad news yesterday and looking for advice (11 replies, posted in General Discussion)
I have family including 3 younger brothers, 29, 10 and 8. My parents are divorced, so I am the only one to take care of my dad in terms of getting him to the right Doctors. Everyone else is more there for emotional support. They just don't know enough to help me with finding the right care. I just called MGH and am setting up an appointment. I also left a message for Dr. Kato's medical assistant who was in the OR during his surgery. I am in the process of filling out the new patient form for Dr. Javle. I didn't think about Sloanekettering. I agree in that we need a multidisciplinary team...I'm guessing Dana Farber doesn't offer that? Is folifornox used specifically for liver mets? If it shrinks these tumors, do they then use radiation? I know he is never going to be rid of this cancer which is the hardest part to deal with. His one chanced to be cured was the initial surgery. Still praying that God gives us a miracle so he can be around for his children. Thank all for getting back to me so quickly. It means more than you know.
Topic: Received bad news yesterday and looking for advice (11 replies, posted in General Discussion)
My dad receive a Whipple and partial liver resection with Dr. Kato at the end of March. He received gem as adjuvant chemo. His scan in July was clean, however his CA-19 had been rising in very little increments. Yesterday we were floored when the Oncologist at Dana Farber told us that he now has a significant amount of liver mets including a very large tumor on the side they resected. Of course we were shocked because since day one everything had been going in the right direction. They gave him a year and said no surgery, no radiation just chemo (folifornox). I don't understand why they wouldn't suggest anything like Y90 or radioembolization. I am sick to my stomach. I can't sleep or eat. I have been his caretaker and advocate and I was so happy when we thought we were coming to the light at the end of the tunnel. I don't know where to turn. Do I get a second opinion? Where? I just can't understand how the reoccurrence happened so quickly and the tumor grew to the size of a grapefruit from July to December. Please help me with suggestions. I am so lost. Please feel free to call me at 978-360-9613. Thank you so much.
My dad had a Whipple procedure and a partial liver resection at the end of March. Since then, he completed one cycle of gem (the last one was on 11/1). He has had his CA-19 tested multiple times, and the results are as follows:
His Doctor told him not to be concerned, that there are various other factors that can play into the CA-19 reading, however, it's hard not to be concerned. When he was first diagnosed, his CA-19 was up around 100. He has a CT scan and will get his CA-19 tested again on 12/5. I have read that this number isn't a great way to detect a recurrence, but I know that it is used along with a CT scan. Has anyone experienced a gradual increase in their CA-19 without any other sign of a recurrence? He looks and feels great and has been gaining weight back slowly. All of his other tests are exceptional. Thanks!
Just another quick update...my dad could not handle the gem/ox combo, so he is now just doing 3 weeks on and 1 week off of gem. We went 10/3 and they decreased his dose by 25% because of his platelet count. He will be done on 11/1. He will get a base line CT scan, then it's just back for regular CT scans and blood work. His Doctor was not there, so we asked the nurse how often he would get scans and she thought maybe twice a year. I thought that was a little too spread out, so we will see what the Doctor has to say. His CA-19 is still hovering around 26 which is fantastic! Other than the chemo completely making him sick to his stomach, he is doing A OK! His Doctor called him 1 in 1,000! I find it very difficult not to keep worrying...I don't want to get too excited, but I feel like we should celebrate his good health. We are very blessed and we thank God everyday for each day he gives to our family.
First CT scan post surgery and it's CLEAN! CA-19 is normal! Best part of receiving the good news was seeing my dad's eyes well up with happy tears for the first time in almost a year He received his first gem/ox post surgery treatment...6 more to go! My dad is a walking miracle.
Thanks Lainy! It's funny how their taste buds change as well as their reaction to foods they have been eating their whole lives! I guess it takes a long time to figure out what works and what doesn't! We talked to his ONC about his ailments and they did offer suggestions - talking to a therapist, a low dose anxiety medicine, seeing a nutritionist...he is on pain medication for the cramping, but luckily he has been able to decrease his dose overtime. He hates taking any kind of medication at all! Although they give him all this advice, it is only him that can make the decisions on how he wants to handle his ailments. He can be stubborn and mostly I think because he doesn't want to come off as "weak". I keep telling him how strong he is and that it's okay to need help. The doctors said that a lot of the cramping is from his digestive tract healing and growing. We hope that is the case!
Hello CC Family!
Even though I don't have much to report, I wanted to give a quick update because I know how much it helps for other people reading the posts on this board to hear good news.
My dad is closing in on 2 months post Whipple/Liver Resection and is doing remarkably well according to his wound nurse and his doctors at Dana Farber. His wound only has about two inches to go before it is completely closed. He will start his one cycle of chemo on July 25th. His first CT scan is July 23rd (which he is already pre-stressing)! His doctors at Dana Farber told him that he has so much to be thankful for and that he is exactly where he wanted to be when this whole rollercoaster started back in September of 2012. They are very hopeful that he CT scan will be clean. I know it will be too He is gaining energy back and eating a lot more than he was. He has his bad days too - nausea, cramping, exhaustion, anxiety - but like I said to him, he has more good days than bad. He is going to start working again soon - he is a bartender/manager at our family owned Italian restaurant. I think this will help get him back into the swing of life and will take his mind of the C word.
I can't tell you how important positive thinking is. We are thankful for everyday and go out to the world with the attitude that we beat CC because we did and we will continue to do so!
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!
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.
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.
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!
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!
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!
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?
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!
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!
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!!
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.
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!
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!