January 29, 2008 at 3:06 am #17272lindaParticipant
Thank you Nancy. We are meeting with a surgeon tomorrow from Columbia University/NY Presbyterian Hospital. I hope we get good news. I will keep Dr. Journigan on my list if we do wind up at Sloan. I’m glad your friend is doing well. Thank you for the kind wishes and prayers.
LindaJanuary 28, 2008 at 7:07 pm #17271peterMember
Wonderful news and just the kind of encouragement we hope for many of the new folks who join our community each week to hear.
We must advocate for our health care. Second opinions and finding the right hospitals and surgeons can make a huge difference.
Have you tried the search function on the top of the page for your Chemo questions?
-PeterJanuary 28, 2008 at 12:34 am #17270nancypkeenParticipant
So sorry to hear about your dad. You will find this website to be incredibly helpful and the people are so very caring.
As I indicated my friend was operated on at Sloan Kettering. His surgeon was Dr. Journigan. He was wonderful. He had a great bedside manner and was always very straight forward. We new going into surgery he had only a 50% chance of having a complete resection. He basically told us if the surgery was over in an hour it would be bad news and if it went on for “hours” we could hope for some positive news. He was turned down for surgery from two other major hospitals. At no point did either hospital refer us anywhere else. They just left us with that dreaded statement, you have 6 – 12 months to live. Ron is 60 years old and was very healthy before being diagnosed. He had never been in the hospital or even had a stitch to his body. The nurses joked with him and told him he had a “virgin” body — too funny!!
He did have a complete resection — State 2A. He has just finished 4 months of Gemzar and will have a CT scan tomorrow. If the scan is clean, our Oncologist here in Richmond, VA thinks that is all we should do at this point with the exception of having CT’s scans quarterly. If the CT is not clean, of course, that is another ballgame. We are hoping and praying for GREAT news. He looks wonderful and has gained all his weight back. He tolerated the Gemzar very well and had zero side affects from it. We actually just got back from a cruise yesterday to celebrate his having finished chemo. We wanted to take a vacation before hearing good or bad news with his CT scan. All of his blood work is great and his CA-199 remains in the low twenties. We are so aware that CC likes to come back and re-visit old neighbors so we are hoping his was not friendly and the old neighbors are glad it is gone.
If you have any questions at all, please do not hesitate to ask. I will add your dad to my prayer list — best wishes!!
NancyJanuary 24, 2008 at 10:26 pm #17269lindaParticipant
Hi, i’m new to the message board. My dad was just diagnosed with a possible cholangiocarcinoma. (small blockage in the bile duct leading to his liver and a small lesion in his liver.) I’m researching liver surgeons and i’m wondering which one you used at Sloan Kettering. I would appreciate some advice.
LindaOctober 15, 2007 at 5:32 pm #17268devoncatParticipant
Wonderful news! Hopefully it will all pay off! My friends husband calls such insistance and fighting character you showed in finding a doctor who would do surgery “being a doberman”. I think it aptly describes what many people have to do.
Good luck to your friend!October 11, 2007 at 10:18 pm #17267julesParticipant
that is great to hear that you found a surgeon who was willing to help – I have always said to people keep going until you find a surgeon who will operate. We consulted with yuman fong at sloan kettering – he was willing to operate on my dad although he said that he knew an excellent surgeon here in the UK – as it happened we went to the surgeon (peter lodge) here and he was brillliant. My dad’s cancer did return but i think that was because it was at a very late stage. the surgery did help in that my dad never experienced pain throughout his illness and i think that this was because the huge tumor in his liver was removed.
I understand your concerns re chemo – I had always though that it was better to go for a combination chemo, my dad had gemcitabine and carboplatin which was effective however it was very harsh – it hammered his bone marrow, his platelets and hb levels never really recovered and this caused alot of problems for us to manage. It is so hard to make these decisons though, as some patients can cope with platinum drugs (cisplatin, carboplatin and oxylplatin) very well. It really is an individual thing.
after my dad’s surgery we were told that chemo was unproven in terms of benefits and with that we should wait – if the cancer reared its ugly head we might want to think about it later on… in hindsight I wish my dad had adjuvant chemo as it might have just killed off those stray cancer cells before they had chance to establish themselves. I also wish that he had been given radiation. I wish we had slung everything at it and not just gone for the ‘wait and see’ option…I think that you will find that alot of people whose cancer did return after resection might say the same.
But then you have the decision of which drug(s) to go for – when it comes to answering this question I would start with the excellent chemo worksheets on this website (I think they are still there) print it off, take it to the onc meetings and also do some research on current trials and ask your onc about promising early results, an experimental treatment maybe a better option..
wishing your friend a speedy recovery from the surgery and all the best for the future,
julesOctober 11, 2007 at 9:47 pm #17266marionsModerator
Congratulations in many ways. First and foremost, your friend had been offered a resection and that being attributed to your persistancy of seeking further opinions in the medical community.
Hoping for continued success.
MarionsOctober 11, 2007 at 3:21 pm #767nancypkeenParticipant
I have posted only a few times but faithfully check-out this website to see how everyone is doing. My friend had a successful resection on August 20 at Sloan Kettering Hospital in New York. Two other major hospitals told him there was nothing that could be done and he had 6 months to live without chemo/radiation and 9-12 months to live with radiation and chemo. As so many others on this website have shared, second/third opinions are a MUST!!! He was diagnosed with hilar CC. Three biopsies prior to surgery showed benign pathology reports. His CC is stage 2A and we are thankful for that but certainly know we are not out of the woods by any means. His cancer has not metastized and there was no lymph node involvement. He starts Gemzar chemo tomorrow and is expected to continue on that for 4 – 6 months and then decide if radiation is necessary. I have done enough research to know there is a lot of controversy as to whether chemo does any good. Prior to surgery his CA-199 blood count was 550 and then after stents were placed in it went to 310. His recent CA-199 count this week was “10”. His question to the oncologist was “so tell me again why I am doing chemo” and his response was it was a much needed adjuvant therapy because it really likes to come back around to visit old neighbors.
I have not seen a lot of posts from people who took Gemzar alone. He based his recommendation of this drug based on a recent European trial. I would love to hear from others who have heard of or who are taking this drug. The side effects do not seem to be as bad as some others I have read about.
God bless you all…
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