Hi Vanessa. I second what Jim said. I am also alive today because of Dr. Kato. Jim and I are lucky enough to have crossed paths with such an amazing and brilliant man. Please check into every resource you can. Dr. Kato is certainly a miracle worker and perhaps it's worth giving him a call. If you need any info on Dr. Kato, please let me know. Best to you and your family. Stay strong. I will keep you in my prayers.
Hi Sitaram, I responded to your question under the intro section, but I am re-posting this here in case you missed it. Please read the posts under the intro section where you had also asked this question. I also had a 10 x 10 cm inoperable tumor. However, I found a dr who is like none other, Tomoaki Kato. My tumor & 3/4 of my liver were removed. My left portal vein and vena cava were replaced by synthetic parts & my jugular vein. Lots of reconstruction, but it was successful. First of all, if you question statistics, you are placing yourself in a position to believe what you hear and then live, or allow your father to live for that suggested period of time. Don't let others set the rules, make your own. No one really knows how long because the reality is cancer has a mind of its own. Rather than question, tell your father to continue fighting with all of his might. I never asked the drs what my time frame was. I knew the prognosis was grim, but rather I said "I will tell them how long I have". And that's just what I did. I am alive & well today. Regarding therasphere, when it comes to CC, everything is worth a chance, however, in order to truly set out for a cure, removing the tumor is the only true chance. Dr. Tomoaki Kato at Presbyterian Med Ctr in NY gives people with inoperable tumors an opportunity to become operable. He is unable to attempt surrgery for every patient, but I would certainly contact him to find out if your dad may be a surgical candidate. If he isn't, then by all means try chemo or therasphere, whatever it takes to beat this. I am a firm believer in never giving up, so please don't stop fighting for your dad. Without treatment, the cancer will do its best to take over. With treatment, you make it a little tougher for the cancer to win. Anything that can attempt to slow the progession of these cells is worth a try. Every day that your dad is on this earth brings the hope for a new treatment and a cure. Dont ever give up on hope. I am living proof of miracles. My true hope is to have many, many more people join that group. I will pray for you & your family. If I can help in any way, please do not hesitate to call upon me. My email is firstname.lastname@example.org. Best to you.
So excited for you Nancy. You deserve to sit back a bit & smell the roses. I agree with you about spending time helping others. That's what life is all about. One of my favorite quotes is: You make a living by what you get, you make a life by what you give. So many people believe that success is how you live and getting all the material things you can out of it, but that's really not living. I believe the most happiest people in the world are those who give & help others whenever they can. I have always been a happy person, so I guess I must be a giver. Well I wish you much happiness during this wonderful time in your life. If you ever get bored, just stop by here and say hello. Wishing you a wonderful LIFE. Enjoy!!!
Sitaram, please read the posts above. I also had a 10 x 10 cm inoperable tumor. However, I found a dr who is like none other, Tomoaki Kato. My tumor & 3/4 of my liver were removed. My left portal vein and vena cava were replaced by synthetic parts & my jugular vein. Lots of reconstruction, but it was successful. First of all, if you question statistics, you are placing yourself in a position to believe what you hear and then live, or allow your father to live for that suggested period of time. Don't let others set the rules, make your own. No one really knows how long because the reality is cancer has a mind of its own. Rather than question, tell your father to continue fighting with all of his might. I never asked the drs what my time frame was. I knew the prognosis was grim, but rather I said "I will tell them how long I have". And that's just what I did. I am alive & well today. Regarding therasphere, when it comes to CC, everything is worth a chance, however, in order to truly set out for a cure, removing the tumor is the only true chance. Dr. Tomoaki Kato at Presbyterian Med Ctr in NY gives people with inoperable tumors an opportunity to become operable. He is unable to attempt surrgery for every patient, but I would certainly contact him to find out if your dad may be a surgical candidate. If he isn't, then by all means try chemo or therasphere, whatever it takes to beat this. I am a firm believer in never giving up, so please don't stop fighting for your dad. Without treatment, the cancer will do its best to take over. With treatment, you make it a little tougher for the cancer to win. Anything that can attempt to slow the progession of these cells is worth a try. Every day that your dad is on this earth brings the hope for a new treatment and a cure. Dont ever give up on hope. I am living proof of miracles. My true hope is to have many, many more people join that group. I will pray for you & your family. If I can help in any way, please do not hesitate to call upon me. My email is email@example.com. Best to you.
Well hello Jim. Don't forget to let me know how your trip was. Donna, both Jim and I are patients of Dr. Kato and both are doing well. Definitely worth giving Dr. Kato a call. Good luck with everything. Thank you so much Nur1954 for following my story. Whenever someone tells me that I am an inspiration, my heart smiles. If there is one thing that I want to accomplish in life that is to inspire others. I am hoping to write a book one day and definitely do some public speaking. Finishing nursing school isn't out of the question either. I recently designed a pendant for cancer patients & am keeping busy getting ready to launch & market the logo. It's a very empowering symbol. I so excited to be able to begin sharing it with others. How blessed am not only to still be here, but to have an opportunity to give back. My heart goes out to everyone who is living with cancer, as well as their family & friends. It is the most difficult challenge of one's life, but something that brings with it such rewards. Cancer has truly given me the gift of clarity and has enabled me to cross paths with the most amazing people in the world. Hey Jim, that includes you. ha ha Never take your eye off the target. Keep the focus & you will reach that goal. Hugs to all!!! xoxo
Hi Donna, sorry to have to meet you on here, but everyone's paths cross for a reason. This is unbelievable, but I was under the care of Cooper Hospital, Dr. Nancy Lewis. She had left the practice and referred me to Dr. Hageboutros. He was unable to help me & basically was only too happy when I told him I was seeking treatment elsewhere. I have heard good things about him, but honestly, for CC, I would not even bother consulting with him. No one at Cooper was ever able to help me, not the oncologists nor surgeons. My CC was pretty much localized to the liver. I had a 10 cm tumor in the liver that no one wanted to touch. I went to many, many drs and was told my tumor was inoperable. My entire story is listed under the intro section here as "My inspirational story". I never gave up and never listened to any drs, especially the ones at Cooper. To make a long story short, I miraculously found the only dr in the world who performs ex-vivo surgery (outside the body). His name is Dr. Tomoaki Kato, affiliated with Columbia Univ in New York. I successfully underwent surgery 8 mos ago and am alive and well due to the bravery and intelligence of Dr. Kato. I do not know if he would be able to help your brother, but he wiill give you an honest answer. He believes that nothing is impossible. He is truly the most amazing person I have ever met. If you send him all reports & scans, he will let you know via phone if it is worth the trip to see him. He is extremely kind and sweet. Please look him up. If he can't help, then I would suggest Sloan Kettering or one of the hospitals more equipped to handle CC. Cooper is NOT the answer, believe me. I recently turned 46, which seems to be the new age for this type of cancer. It used to be a disease that struck older men, but not so any more. Losing was never an option for me & please tell your brother to never give up. I would be more than happy to speak with you since it seems as though your brother lives in the same area as I do. I was seen by drs in Phila, NJ and New Brunswick without any success, so perhaps I can be of help. Having traveled down this path, I can certainly relate and offer some advice. My email is firstname.lastname@example.org. Keep the chin up. I will help you get thru this, as will everyone else on this site. Remember, nothing is impossible. I am living proof of that. My new oncologist calls me miracle girl. Just believe. I look forward to hearing from you Donna.
Re: My dad newly diagnosed questioning treatment choices (15 replies, posted in Good News / What's Working)
Hello Kathy. I'm sure you've been hit like a ton of bricks by the words CC and I'm sure you have a lot of questions. First of all, every case is different as every individual is unique. My advice is to take the info you have been given by drs with a grain of salt and then march on to find a brave & intelligent dr to tackle your dad's case. No one person, oncologist, surgeon or patient can hand you the right answers. They can only provide statistics, case scenarios and opinions, all of which provide no concrete answers. Believe in your heart & mind that a cure is possible & then succeed at doing just that. I also had an inoperable 10 x 10 cm tumor. I had failed treatment with Gemzaar and Cisplatin. I sought the expertise of many physicians only to be told that there were not any good options left. Refusing to believe this, I continued to search for someone who believed that my life was worth living. My never-ending persistence paid off and finally led me to an amazing man, Dr. Tomoaki Kato. He is affiliated with Columbia/Presbyterian Med. Ctr in New York. A google search of his stories will amaze you. I am alive today because of one man's belief in the importance of human life & the belief that anything is possible. Although I do not know what the future holds for me, as I am fully aware of the recurrent nature of this disease, I can tell you that I am currently 8 mos out from surgery and doing well. Dr. Kato performed ex-vivo surgery on me, which basically entailed removing my liver entirely from my body in order to remove my tumor. 3/4 of my liver was removed, along with the enormous tumor. My jugular vein was also removed & replaced the left portal vein, as well as a synthetic vein which replaced my vena cava. A lot of reconstruction was done & a lot of healing was needed, but the bottom line is my tumor WAS OPERABLE - maybe not to anyone else, but it was to Dr. Kato. Please contact his office. He will let you know via phone if your dad's case is able to be handled by his expertise. Not every case is, but it sure is worth finding out. I wish your dad much luck in the search for a cure & will pray that he becomes one of the many miraculous statistics. Please keep me posted. If you would like any further info regarding Dr. Kato or my case, my email is email@example.com. God bless.
Re: New and Stage 4 CC - surgery discovered rampant spread - help? (13 replies, posted in Introductions!)
Hello there Miles. I am sorry we have to meet under these conditions, but everyone's paths cross for a reason. I will not bore you with all of the details of my story, but if you keep scrolling under the intro section of the discussion board, you will find my story listed under "My insprirational story". I posted it months ago, so you'll have to go thru a few pages. First of all, you are only a "goner" if you believe you are. I had successful surgery 8 mos ago and am alive and well. Yes, CC is a very rare and difficult type of cancer. I was lucky enough to find the only dr in the world who performs a surgery known as ex-vivo. I believe I was the 6th patient to undergo this type of surgery. Most cases of CC are inoperable, although there are many who have successfully underwent surgery. I am one of those cases. The miracle man, Dr. Tomoaki Kato, was brave enough to tackle my case. He is located at Columbia/Presbyterian Medical Center in NY. You may want to google him. I had undergone chemo, but failed the treatment of Cisplatin and Gemzaar. I was told by many physicians that my tumor was inoperable and there wasn't much else left for me. Once again, I was lucky to find Dr. Kato, but it was because of my refusal to listen to anyone and my never ending determination that led me to him. I wish I had the perfect words to say to you, but unfortunately I don't. All I can tell you is to keep searching for someone who will fight this fight with you. Too many drs and patients give up at the starting line. Please don't do this. We all have a power deep within that can conquer anything. If you steer the wheel in the direction you want to go, you will get there. My belief, along with Dr. Kato's is that nothing is impossible. You must try every drug, surgery, etc. until you conquer this. Of course, any cancer that has advanced never "looks good" but there are many survivors who have been told to get their affairs in order and are alive and well today. Don't think of this in terms of statistics. If I did that, I wouldn't be alive today. Tell yourself that you will beat this and keep the focus. When you hear all the negativity that accompanies this disease, you can very easily start to give up. Once again, please don't do this. You are fighting for your life, so fight with every ounce of power you have. Time is of the essence with CC, so begin your fight right now. Do some research on drs and then go out & find one that has the most courage and intelligence that you can. With the right treatment, you can not only prolong your life, but actually beat this. Please keep me posted on your pursuit, and do not hesitate to call upon me if you should need anything. My email is firstname.lastname@example.org. Email me any time. I will keep you in my prayers. I have just designed a pendant for cancer patients which says: This C will never defeat me. They are words I live by....for cancer will not defeat my spirit or my hopes & dreams. I hope you won't let it defeat yours either. Your fight is my fight and I would be more than happy to help you along this journey. Anything is possible my friend. Never give up!!!
Re: Finding Cholangiocarcinoma specialist in New Jersey/New York (8 replies, posted in Hospitals)
I am also a successful surgical patient of Dr. Tomoaki Kato's. To say he is amazing doesn't even come close. Please look him up. His magic is limitless. Good luck!!!! In my prayers.
Re: Need Help Finding a Surgeon Who will remove tumor (12 replies, posted in Good News / What's Working)
Well, since Jim and I have had the same surgeon, I will not reiterate too much. All I can say is Dr. Tomoaki Kato is like none other. If you google him, you won't believe your eyes. He is amazing. I am alive today because of this one brilliant and very courageous man. New York may be a distance, but when your life is at stake, geography is not an issue. Please contact him. He will let you know by phone if he is able to help. Best wishes to you! I will keep you in my prayers.
So happy to hear your news Theresa. Keep the focus & continue to believe that you can conquer this nasty disease. It will go in the direction you steer it in, so if you drive towards the cure, you will get there. You're in my prayers!! As for Joolz822, I'd love to hear more of your story. I don't live far from you. I used to frequent the Warminster area very often years ago. I had a friend who lived there when I lived in Phila. I'm in NJ now, but only about 15 min from Phila. Don't listen to those doctors....you have much more power than they do. Keep positive and live your life. This cancer might be tough, but it's not tougher than all of us, so keep fighting. I've just designed a pendant for cancer patients. It's being made in China, but the point is, on the back of the pendant I have the words of Jack Dempsey engraved on it which reads...""A champion is someone who gets up even when he can't". So let's all stand up and continue fighting. No one can fight this fight for us, so use your mind, body, spirit and whatever else it takes to knock this cancer out. Best of luck to you.
Hi Christie, I will try to give you a little insight into tumor markers. First of all, you must take the results with a grain of salt. It is not a perfect science and I am not a fan of the tumor marker. I had a 10 cm tumor, so clearly I had cancer, but my tumor markers were never elevated, not even close. They were always normal. How could my tumor markers be normal when I had such a huge tumor? Therefore, some doctors don't even use them, as they are not considered very reliable. I would concentrate more on CT Scans and PET Scans to show if the treatment is working. I was on the same regimen, and my cancer cells (at the cellular level on PET Scan) actually doubled while on this treatment. I believe I was on it for 4 months until I finally convinced my doctors that it wasn't working. With that said, this treatment has worked for a lot of people, so don't go by my results. Everyone is an individual and responds differently. I did handle the treatment well, however. I had them lower my saline amount since my body didn't handle the large amount of fluids. I also did not take any anti-nausea meds during my treatment, as they seemed to bother me more than taking nothing. I never had nausea or vomiting. Cisplatin is very hard on the kidneys, which is why they really push the fluids. Drinking is very important while on this drug. You can learn more about my story on this site if you have time. It is listed in the intro section under "My inspirational story". I would love to learn more about your mother's case. It is difficult to advise you further without knowing more of her history. If I can help in any way, please call upon me. I try to visit this site often, but if you would like to email me, I always check my emails. My email is email@example.com. Please keep me posted, and best of luck to your mom. You are in my prayers!!
Hello my father's daughter. I have had experience with Gemzar/Cisplatin, had innumerous swollen lymph nodes in my chest & abdomen which were considered metastatic (but weren't), had resection by ex vivo technique (which there is only one dr in NY who performs this, who was my dr) and just had a CT Scan 5 mos out from surgery, which seems to be ok, but I'll elaborate on that after. So the bottom line is, every case is different and every radiologist who reads a CT Scan, etc. doesn't always know what they are reading. You can hear more about my story on this site under the intro section listed as "My inspirational story". As far as Gemzar/Cisplatin are concerned, the regimen didn't work for me. My cancer at the cellular level actually doubled while I was on that treatment. However, there are many who have had success with it. Once again, everyone is an individual and each person reacts differently to medications. I was told that I was inoperable by many, many well-reknown physicians, but I didn't listen to any of them. By the hand of God, I found a surgeon in NY who was not afraid to tackle my case & did remove my tumor. I underwent extensive surgery & thought I'd never feel human again, but almost 6 months later, I feel wonderful. My recent CT Scan did show something very tiny in my lung, but the radiologist wasn't sure if it is infection related, inflammatory or a neoplasm. My oncologist isn't very concerned. I believe it may be inflammatory since my lungs underwent a lot following surgery, but if it turns out to be a neoplasm, I will certainly make sure the doctors do whatever it takes to get rid of it. My oncologist agrees. All I can say is do your homework and believe in your heart that your father can conquer this. Take everything you've read and have been told with a grain of salt. Things aren't always as bad as they appear. I'm so sorry your family members had to deal with wrong diagnoses. This just proves how unstable the medical profession is. If you have time, please read my story, and if you have any other questions, or just want to talk, please feel free to email me. I would love to hear more about your dad's case, and hopefully my story will give you all some hope. I had a visit with my new oncologist today and he told his staff that I am the reason to believe in God. I was so moved by his statement. It made me feel like I've been chosen to be some type of messenger....Wow, how special is that. After being told by many that there was no hope for me, I guess I can say never lose hope. Miracles happen every day. I'm still here & yes they do. Good luck my friend. Hope to hear from you soon. I will keep you in my prayers.
So, so sorry to hear this news. I was so happy that your mom reached her goal of seeing another birthday and New Year. I was hoping that she would see many more. Life isn't always fair, and I certainly do not have all the answers, but I can only wish you strength and courage to get through this rough time. You mom seemed like a very strong woman, and hopefully you will carry on her legacy and remain strong yourself. There are no words that I can provide to ease the pain in your heart, however, please know that I, along with everyone on this site, are here for you. If you ever need to chat, cry, or yell, bring it on. I am a good listener and not afraid of anything. Please take me up on the offer if you ever feel the need. I know how empty you feel, and no one will ever be able to replace your mom, but you truly are not alone. I will provide my email if the need arises. I'm like the energizer bunny, so no matter what time it is, if you need to talk, just send me a note. Many hugs to you. I will continue to keep you in my prayers.
Happy holidays to you too Mr. J. I hope this New Year finds you in good spirits & good health. Congrats on the upcoming birthday. I'll be turning 46 on 1/29. Here's to the January b-days. Blow out those candles & make a wish...and may all your wishes come true!! Keep us posted on the follow-ups & scan. Best wishes.
Hi Sharon, so happy to hear! Happy birthday to her. I told you that your mom would be here to celebrate her birthday. I never had a doubt. When you have a strong will, anything is possible. Get ready to ring in 2011 with you mom because she will reach her next goal. Wishing you & your family the happiest & healthiest of New Year's. May you have many more magical moments with your mom. Stay strong. Hugs!!
Kim, what can I say? Your quotes speak mouthfuls. I've lost many close loved ones and unfortunately we don't have a choice but to continue on our journey without them. It is so very difficult however. With each loss, I have grown, become stronger and built up a strong will and determination. Now I'm fighting the battle, but this time for myself. There is nothing harder I have ever had to face. As a single mother, the thought of leaving my daughters is something I refuse to dwell on, or to ever allow to become an option. As for you, I am sure your mom never left your side and never will. I am so happy that your holiday was joyous, and I am sure your mother was smiling on all of you. Have a wonderful New Year filled with much joy, laughter & memories of your mom until you meet again.
Wherever I am & whatever I am doing, you can count on me to join in the prayer on 12/29. I will also pray for your grandma today & every other day. Wishing much health & healing for her & all of us who are suffering from this nasty disease. Keep up the good work John.
I've read all of your posts & want to respond to everyone. First of all, Kristin, I totally agree with what you've said and yes you are a survivor since you are surviving. My story is listed under the Intro section as "My inspirational story". Since it's so long, I won't reiterate. As I've mentioned before, I don't know if I will ever believe I am a cc survivor or even cancer-free, but to date, I have undergone ex vivo resection with a lot of reconstruction. This is a very rare type of surgery. I believe my surgery was the 6th one performed by my miracle worker surgeon, Dr. Kato. Although I was told in July following my surgery that I was cancer-free, I will forever be looking over my shoulder. As a matter of fact, I have a CT Scan scheduled for 12/28 & I must admit that I am a bit nervous to know of the results. I just keep positive & won't allow my mind to drift onto negative thoughts. I have fought quite a few battles during the past year & I'm certainly not about to stop now. Regardless of what this next CT Scan shows, I will face it with my eyes wide open & fight with all of my might as I always do. It truly saddens me when I hear of people who begin to "give up". I know all too well what it feels like to not be able to get out of bed, or to feel like you're not going to make it, but through it all, I never allowed giving up to be an option. If anything, the more I was told that I was inoperable, the madder I got & the more I found the strength to fight even harder. As I mentioned, I will know in about another week if my CT Scan is still clear, but all I can say is I am alive today & feeling very well. I was able to Christmas shop for my children, partake in Christmas festivities, eat like a pig, and hug my daughters on Christmas morning. My current oncologist said that I should not be alive right now and that he believes someone took me by the hand. I truly believe that as well. He never even heard of the type of surgery I had, but he said he is certainly going to tell other doctors about it. During my recuperation period from my extensive surgery (5 months ago), I have even designed a pendant/bracelet for cancer patients. It is currently being made in China. I should have the finished product in a few weeks. The purpose of my pendant is to provide cancer patients with a sense of empowerment. Although we don't have much control over this nasty disease, we do have control over our ability to fight. If anyone is interested in seeing my design, I would love to share it with you. To anyone who feels as though they want to give up, I would like to leave you with the words of one of my favorite quotes by Jack Dempsey which states: "A Champion is Someone Who Gets up Even When He Can't". Please never give up. Get up & keep on fighting!! This disease can be conquered, but you must fight to win. Best wishes & God bless to all!!
When it comes to those we love, I don't think awkward, uncomfortable, inappropriate or anything of the like should even be a thought. You had a son, whom I sure was the light of your life, so why not talk about him. When those we love are gone & we can no longer display and express our affection toward them, the only thing we have left is to talk about them every minute we can. What better way to honor their memory. No matter how uncomfortable others may have felt, I'm sure it couldn't come close to how badly you felt, so never feel bad about letting others know how wonderful your son was. No one likes to hear of sad things, but ignoring them does not mean they don't exist. You shouldn't ever regret keeping John's memory alive regardless of who may feel uneasy about it. I understand blocking things out. When I was 3 yrs old, I lost my best friend/sister to leukemia. She was just about to turn 5. As young as I was, I never talked about it because I saw the pain in my mother's eyes. Now I realize that keeping it in really doesn't make the memory go away & certainly does not help anything. Over 40 yrs later, not a day goes by when I don't think of my sister & I speak about her to anyone or anything that will listen. I think she deserves at least that much. We don't have control over dying, but we do have control over keeping memories alive. Now dealing with cancer myself, I could only hope that when I am gone, I will be spoken of fondly by many, even if over a Christmas dinner. I wish you the strength to be able to think of your son & face the reality with courage & love. I think he would want that. I am sure he will never leave your heart, so allow your mind to join in as well. You will be together again some day. Until then, keep talking about John. I know I'm sure glad you did, and I truly believe others would feel honored to know of him as well. Continue to grace others with the life of your son. Wishing you a wonderful New Year filled with much joy, health, sunshine & laughter!
Susan, always hold onto today. After all, today is all we really have. Every second that we are able to spend with our loved ones should be cherished. No one knows what tomorrow brings, even those who are healthy. I wish you many more days like today. Merry Christmas & may the new year bring a little miracle your way. God bless you! You are in my prayers.
Hi Julie, I can definitely relate to your situation. I also have two children, ages 15 & 12, and the thought of ever leaving them is something I choose not to think about. I just tell myself that it is not an option in my world and I'm sticking to it. I am glad to hear of your "stable" news. We would love to hear that the tumors have gotten smaller or, better yet, have disappeared, but stable is something positive. Don't ever give up on total disappearance. It may sound cliche, but miracles do happen. I'm told that I'm a miracle, but I don't think I'll ever feel confident enough to believe I am cancer-free. I had very extensive surgery to remove my tumor, 3/4 of my liver & much reconstruction, but due to the recurrent nature of this disease, I'll always be looking over my shoulder. I have a scheduled CT Scan on 12/28 and I'm a little nervous to see what it shows, but I just let my mind stay strong & guide me. Continue to stay positive & fight with every ounce of power you have. Don't let fear & negativity cloud your focus. If you believe that you can conquer this, then it can be done. I hope your treatment begins to shrink your tumors, or that a new treatment comes your way that brings you closer to becoming cancer-free. You are in my prayers. Please stay strong. Wishing you much health, happiness, sunshine & laughter in the New Year.
So happy for you Randi and, yes, may you have many, many more happy, cancer-free years ahead. Wishing you the happiest of holidays. May they be filled with joy, sunshine & much laughter!! Happy 55th....may all your wishes come true! Hugs to you.
Great to hear that things are moving right along. I agree, the tests should also be forwarded. My doctor won't even read reports. He wants to see the actually films at all times. Maybe they can make arrangements to have that done. You really have to be persistent with these facilities. Well at least the ball is rolling. I will be anxiously awaiting your news. Keep the chin up my friend. Once again, have a wonderful holiday Mr. J.