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(13 replies, posted in Introductions!)

Katielinn,
Perhaps, this information can jump start your research into Johns Hopkins.

Suzanne Smallwood-Massey
Multi-Disciplinary Liver Clinic Coordinator
Johns Hopkins Liver Tumor Center
600 N. Wolfe St., Harvey 611
Baltimore, MD 21287
Phone:  410-502-2846
Fax:  410-502-2388
Toll Free:  1-877-Liver99 (877-548-3799)
hopkinsmedicine.org/livertumorcenter

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(13 replies, posted in Introductions!)

Katielinn,
Please read my post regarding my father. We also live close to Philadelphia and were discouraged by the information provided to us by U Penn. We chose Hopkins and while my father's outcome was not successful, the treatment he received for this disease at Hopkins was exceptional.

Tim

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(16 replies, posted in Introductions!)

Good afternoon,
I realize it has been quite awhile since my last post. The last 4 months for my family have been extraordinarily difficult. While each day during my father's battle felt like an eternity, it also seems like only yesterday that we received the diagnosis. His diagnosis led me to this website and all of the wonderful people who share their successes and failures regarding this terrible and devastating disease. My father's battle ended on Saturday at Johns Hopkins University Hospital. He was 70 years old and leaves behind a loving family, a thriving business, and many friends. My father battled to the very end, and unfortunately, his body could not respond to the will of his mind. My father underwent successful liver resection surgery last Tuesday. The surgery lasted in excess of 12 hours, but by the end, the tumor was removed in its entirety. The days after the surgery were painful and in the end heartbreaking. My father was originally scheduled to undergo the surgery at the beginning of May. Unfortunately, blood infections continuously delayed it as each setback required longer doses of IV antibiotics that sapped his energy level to the point that it appeared as though surgery was no longer an option. Each setback was followed by the replacement of the biliary stents, a procedure that itself is not very simple. In the simplest of terms, the resection surgery stirred up the residual infection, and my father's life became dependent on his liver's ability to regenerate itself before infection ravaged it and his other organs. For a period of time last Friday, it appeared as though he was heading in the right direction. That being said, I was not surprised when the call came from the hospital at 4:00 AM on Saturday that his condition deteriorated to the point where he would likely become unsupportable at some point on Saturday. By 4:00 PM, the fight was over.
         While the loss of my father has been devastating as we were so optimistic that he would beat this, I want to share some of my thoughts on his experience at Hopkins. Because his case ended in death, it is hard to call his experience a success, but I cannot speak more glowingly about the level of care he received. Firstly, Dr. Timothy Pawlik, the man who performed the surgery on my father, is incredible. My father and mother lived at Hopkins for 7 weeks before the surgery and during that time, Dr. Pawlik and my father formed a special bond. In his own words, he loved my father and tearfully explained that he wished he could have done more. Furthermore, his nurse practitioner, Tam, provided daily reassurance to my parents throughout this process, one that had more ups and downs than your favorite roller coaster.  Dr. Pawlik is extraordinarily busy, and for him to take such special interest in my father illustrates the quality of people you meet at Hopkins. In the end, Dr. Pawlik did everything he could for my father. Perhaps, proceeding with the surgery in light how sick my father was before it could be questioned, but if my father were told last Monday that the surgery could not be performed, he would have died from heartbreak. The preoperative procedures and the resulting setbacks were hard on my father so hard that he was close to death at least once before surgery. The hope of recovery allowed him to persevere. An extra 3-6 months of life where the quality of that time would continue to diminish was not the way my father wanted his life to end.
         In closing, I want to thank all of you who shared information with me that gave my father a fighting chance. I want to extend a special thank you to Jim Wilde, who spoke to my father and me on several occasions. The world needs more people like Jim. Nothing will bring my father back and I expect that I will be thinking of him everyday for the remainder of my life. My sincerest hope is that people will be saved from what was learned from my father's case. Cancer is nasty and this cancer is especially nasty, and I hope that you do not have to read this because it will likely only be read by those of us touched by it. I also make myself available as a resource to anyone seeking more information for themselves or a loved one.

God Bless,

Tim

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(16 replies, posted in Introductions!)

Jim,
I want to thank you for all of the information and speaking to my dad on Friday. I think he is resigned to the fact that it is inoperable, and as such is preparing for to start chemotherapy. I, nevertheless, contacted Dr Kato's office Friday and sent scans and doc reports to his office today. It is hard waiting patiently when I know that time is the enemy in this battle. My sister also reached out to Johns Hopkins today and I expect to send them a similar package tomorrow. I really cannot thank you enough because as helpless as I feel you have provided inspiration and much needed direction. I pray that Dr Kato is able to review information tomorrow and believes he can help my father.


Tim

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(16 replies, posted in Introductions!)

Good morning,
I want to thank all of you for reaching out. Dad's surgical procedure to insert the metal stent was a success according to the surgeon and he will come home today if blood tests show that the liver has begun functioning correctly. The choice for the metal stent was made as a similar procedure was performed last week with a plastic stent and it did not improve liver function whatsoever. I have yet to speak to the oncologist, apparently affiliated with U PENN, but he indicated to my father that it may be inoperable, which might be another rationale for the metal stent. That being said, these docs are not at the forefront of treatment of CC. While they have done well to treat dad and keep him upbeat, I think based upon the responses to my post it is a mistake to deem his situation as inoperable, until we have contacted a surgeon who does resections. My concern today is of course time, and how the standard course of treatment (i.e. metal stent, chemo) may or may not conflict with the more advanced, aggressive forms of treatment. The local oncologist told dad that he could start chemo as early as next Wednesday. I feel we must get a second opinion and being within driving distance to NYC and Baltimore, the resources are available, but I do not want to delay chemotherapy if that will be part of any future treatment program. As far as treatment options, it seems like that depends on the staging, which I suppose the biopsy taken during yesterday's procedure will help determine. Because removal is the best option, it seems that finding a 'miracle surgeon' is step one. The 'miracle surgeons' that many of you have kindly shared your experiences about are not necessarily affiliated with the hospitals that have active research programs. So my question is this, is the first step to contact NY Presbyterian and Dr. Kato's team to determine if it is operable? If he determines that it is not, would a better course for treatment be to go to Johns Hopkins where research is being actively pursued. From hour to hour, I feel both overwhelmed by the availability of information and optimism that there are such resources available for this horrific disease. Thank you again for all of your support and information.

Tim

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(16 replies, posted in Introductions!)

Jim,
We are located near Philadelphia. Thank you for your response.

Tim

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(16 replies, posted in Introductions!)

Good morning,
My father was recently diagnosed with CC and is having a metal stent inserted into his bile duct today to hopefully allow his liver to begin draining normally again. He is 70 years old and has been healthy throughout his entire life, until now. I suppose I like many who have posted on this site had never heard of CC, until this diagnosis. As the initial shock was replaced by the grim reality of this terrible disease, it is comforting to know that there is a resource such as this where I am hopefully able to gather information that may extend my father's life. I have read much about the disease in the last 48 hours, and as far as the diagnosis we are not at the point where the stage has been defined and without that the next step seems to be a little unclear. From the little that I have learned, it sounds as if there are many treatment options, but they vary based upon the stage, so it is likely premature to seek out advice on what works and does not work. That being said, is an appropriate first step to forward his imaging results to the research hospitals listed on this site? If this is not the best step forward, what is? My father has been my rock, has provided everything for which my mother, siblings, and grandchildren could ask. He is a fighter, but I know that it is now my responsibility to lead this fight on his behalf. I appreciate any feedback that others have to offer.

Tim