I'm sorry I haven't "gotten back" to you all, and I appreciate all of the supportive comments. The last week has been trying, but I will address all your posts above, and update you all on my Dad's progress. It's comforting and informational to hear from you all. For now, I just wanted to tell you guys that my mother and father are getting remarried in a few hours. Unfortunately, it's at the hospital chapel - my father has been staying in the last 5 days. God Bless
Thank you for responding. "There is no cancer in my liver or elsewhere..".
Just incedible. Gives me chills to read that, and I am so happy for you. Coming up on 4 years fo you- have a great anniversary, and many, many more!!! And it gives us all the more hope. And I pray that everything w/ your ovary will be fine.
When my dad was first diagnosed, I wasn't even hearing 5 years as a "cure'. I though 5 years was BS. No way my am I settling for that sh*t. Sadly, realistically, I think- 4 years..well, I know my dad - well, he would say he would take 4 good years. When I once told him I want to be living donor if I could. No, I said I would give him my whole liver - I meant it. I am single. No kids. Maybe that is my purpose. It is nuts. Would never happen. He said I was crazy to say least. I am on computer at Dr. Bruckner's and I have to get off so I am sorry if the rest is muddled. And the computer is malfumtioning, as is my brain.
You know, I would never bash a hospital, but I am coming close as I keep hearing stories about Sloan. Personal stories and otherwise. I know it's a great hospital and no doctor/hospital is God. Further, I do read great stories about Sloan.
But when you are told something w/ a certainty-Seemingly, and to layperson. That, to muyself, smacks of a God complex. Ego. Ideally, my Dad should have/could learn more. Educate himself to further degree. He went along w/ what Sloan said at every point. Gospel. Nothintg wrong w/ that, maybe. But I would have liked him to ask his own questions. Not just rely on my brother, sister, myself, mom, etc. To know treatment is his decision- based on all knowledge from docs, etc.
We are here at Dr. Bruckner's for our 2nd day of cocktails, after the 9-month journey above. I am so ahppy for your success and look forward to meeting you here. It is ironic - to say the least - that we met w/ Dr. Myron Schwartz also in the past, & he said he could do a resection. We liked him, but since no ogher surgeon including Dr. Kato came close to saying yes, we declined.
From following this site closely for 9 months - I signed up in April but didn't post until yesterday - I know about all the long, brave journeys. And you epitomize such a journey. The ups and downs. Successes and recurrences.
Thank you again. I will look at my Dad's schedule and see if it coincides w/ yours. I dont have my phone w/ me but if you would like call me any time...718-344-4622.
Thank you very much. And just one look above- all you have gotten through. And no doubt will continue to successfully beat. Thank you again.
Hi. I'm Marc. My Dad-Vinnie-received ICC diagnosis in Jan. 2013. Though I never introduced him here until now, I've come to this incredible place early & often from the horrible start. Quickly, I learned I need look no further than here 4 the requisite knowledge, personal experiences, & inspiration. This site- and ones like it- are the only good things about the Internet. Plus the Family atmosphere here, Everyone pulling 4 one another. People coming together out of the uncommonly tragic towards a common goal. My Dad- 71 and strong, always athletic. After diagnosis, went to Sloan for Gem/Sys, consult w/ Kato. My gut always said sloan too conservative- that drastic circumstances require drastic measures. Not the "usual" protocol. And who's to say what's drastic w/ this anyway. W/out having exact numbers in front of me, the 1st scan showed 14x16 tumor encasing right hepatic vein, a few other very small tumors, nodes in lungs suspected metastasis. Since Kato has b$lls, we hoped- I guess naively at the time- 4 resection. 1st round chemo shrinks it to 13x15, but smaller ones bigger, and lung nodes bigger. Research tells me chemo gonna stop workin, but I'm not a doc. So on to 2nd round and it was a knock-out: huge tumor bigger than when started. On to 5-fu. During these 9 months we saw or sent discs to many places- Anderson, NYU, Bruckner, Fox-Chase, rhode island, Myron Schwartz, Hopkins. In April or so, we saw Bruckner- we were set on him. But that very day, it just changed & we stayed w/ Sloan. A few months ago, I notice someone here in a fox-chase trial- one I had found shortly after diagnosis. In the thread, she gave her number to someone else. I call her- thank you for taking my call Kris and being so nice to me and my Dad. Continued success w/ the trial. Ironically, we visited fox then and would have been accepted. But 5-fu continued to no avail. So on to fox in late August, after blood work-up, calcium to high and no fox trial. 2 days ago, last Sloan scan- "liver isn't functioning". Nothing they can do. 5- f?ck you. Give us hope. Somethin. "Will any doctor anywhere try anything?" "Never". Yesterday we go Back to Bruckner. Hope. We know there's no magic bullet, but we want a shot. We won't give up. We want my Dad to never lose heart. We need hope. Today, we got a well-needed cocktail. I shouldn't put it that way. Bruckner doesn't follow the party line and believes in cocktails - 3 or more drugs Simultaneously, but in smaller doses. And I'm Grateful. Dr. Bruckner, Dr. Hirschfeld- hope spelled name right. They believe their methods will help. And that gives us belief that our Dad will get better. Thank you for indulging me, and I hope for any and all insight. Percy, are u listening? Lol.
Oh. This THING. This THING inside my Dad. I want to pull it out, take a Baseball bat, And beat it down endlessly.
Thank u Lainy. I deleted my initial response that appeared here because it introduced my Dad as a new member and is in the wrong place...I apologize to Jane, the original poster. Jane, though I am introducing my Dad as a member today when My stupid self finds the right place to post it, I have been following this site closely since My Dad's ICC diagnosis 9 months ago. And though I too am so sorry you find yourself here, I KNOW you are in the best, only place for knowledge, inspiration, support, hope, etc. I'm happy your husband is doing well and hope and pray he goes on to get stronger and better.
I'm sorry. I tried to introduce my Dad as a new member here and Posted in the wrong place. As I did not yet read the initial Post, I wish them the best and will read it in detail later. I cannot read it now because I'm with my dad who is on his way to get treatment as we speak.