1 (edited by Mvg Wed, 18 Sep 2013 17:10:02)

Topic: Dad diagnosed ICC 9 months ago

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.

Re: Dad diagnosed ICC 9 months ago

Hi Marc,

Welcome to the site and I am so very sorry you had a reason to be here.  Your Dad sounds like a fighter and that's what you need with this horrible disease for sure.

I hope that his latest treatment helps.  My thoughts are with you.

Best wishes,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Dad diagnosed ICC 9 months ago

Hi Randi,

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.

Marc

Re: Dad diagnosed ICC 9 months ago

Dear Marc, wow, now you know why we call this a roller coaster ride. Sorry Dad had to buy that ticket. I know we have had some others go to Dr. Bruckner. If you go to our search engine at the top and type in his name posts will appear about him and who went to him. You have done everything exactly right, you are to be commended and I would say Vinnie has a couple of great strong kids. Remember that attitude is everything and to be very strong. I know you will keep us posted and give Vinnie a Ciao!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Dad diagnosed ICC 9 months ago

Marc...I'm a patient of Dr Bruckner and Dr Hirschfeld..this is my second round of chemo with them...my first was after my resection in 2010 with Dr Myron Schwartz...I received 6 months of adjuvant chemo and I was cancer free for 2 1/2 years...so that says something I think about the cocktail....I did have a recurrence and Dr Schwartz again operated.....unfortunately the CC made its way to my ovaries which I had one removed just to confirm it was CC and not ovarian cancer...after my laproscopy I was found to have CC cells in my peritoneum...back to Bruckner I went ...just want to let you know I started chemo in April..had a scan in June which showed no cancer in my peritoneum...my right ovary is still misshaped but CT could not confirm that it was cancer that was causing that...there is no cancer in my liver or elsewhere just the ? of the ovary...I to went to Sloan and was originally told I was not a candidate for surgery thats when I went to Mt Sinai and Dr Schwartz for a second opinion....It will be 4 years since my diagnosis in Oct and I know I would not be responding here if I did not seek a second opinion....so you have done the right thing for your Dad in sending his records to as many as you can....needless to say I feel like I'm getting the best treatment I can...that does a lot for ones piece of mind...of course it doesn't hurt that all the people at Bruckner Oncology are just wonderful...they have an amazing group....I'm scheduled for treatment on the 25th and 26th of this month...Jackie is my nurse...she's absolutely #1 in my book...maybe I'll see you and your Dad there and we can talk some more.
Nancy

Re: Dad diagnosed ICC 9 months ago

Hi there Lulu, I am so glad to hear how well you are doing! Those doggone Ovaries, always trouble with those guys! I knew there were some people with Dr. Bruckner so I am very happy one was you! Good to see you and keep up the amazing work and kick that ovary to the curb!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Dad diagnosed ICC 9 months ago

Hi Nancy,

    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.

Marc

Re: Dad diagnosed ICC 9 months ago

Hi, Marc,
I'm sorry Vinnie didn't get accepted at Fox Chase, but glad he found his new docs. I hope he told you I met him, your mom and sister(?). He didn't look too hopeful, so I hope I helped. I'm a bundle of energy!!
It's great to hear of people getting better suited help because of this site! How wonderful that Vinnie is getting some therapy. I sure hope it works! Say hi to them for me. And feel free to call me again if you want to talk. I was hoping he would call me later that day or the next with his results.
I do have to say that there's nothing wrong with going along with your docs, if you are comfortable with them. I did it, because I thought it was best for me. When I made my decision to change therapies, I gave it a lot of thought. I KNEW it was right for me, but I still weighed the pros and cons.
Good luck to Vinnie!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Dad diagnosed ICC 9 months ago

Lainy..I would love to kick that ovary to the curb but, right now it seems like it is doing me no harm...Marc... I'm very happy that I could bring a little light into the darkness of this disease...I'm sure you and your family were like mine...never heard of this cancer and then to be diagnosed and find out there is no cure or no definitive treatment...you have done well...I appreciate how much you would do for your Dad..my Dad is thankfully a robust 91 year old and there isn't much I wouldn't do for him..it seems like we are on different weeks for treatment but I will have a CT on the 15th of October. Hopefully we can connect at some point...I'm sure you have realized you have brought your Dad to a very special place...we feel like family at Bruckner and I hope if not now you feel that very special bond soon..
Nancy

10 (edited by Mvg Sun, 29 Sep 2013 09:22:48)

Re: Dad diagnosed ICC 9 months ago

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

Re: Dad diagnosed ICC 9 months ago

Mvg....my most heartfelt congratulations for todays loving event.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER