December 27, 2009 at 3:52 pm #33874
Thank you for your welcome. I have already found this site to be informative and supportive I too am so glad I found it. I did sign up for a Cancer Care group but they did not have a cc group so they grouped me with women over 40 with cancer. Although they are very supportive and caring most are not familiar with cc being with others who are means a great deal to me.December 24, 2009 at 6:22 pm #33873gavinModerator
Welcome to the site, although I am sorry that you have to be here. I just wanted to join the others in welcoming you here. This really is an excellent place and you will get tons of support and help here.
I am glad that you are up for the fight and you have a very positive attitude, and that will be a great help to you in fighting this.
My best wishes to you.
GavinDecember 24, 2009 at 5:15 am #33872
Hi Bean…I am so sorry to hear about your brother and I so much understand your feelings of dispair following the diagnoses of Cholangiocarcinoma something, all of us can relate to. You are saying that he is not resectable and my first question is: who has has come to that conclusion? Is this a physician very familiar with this cancer? Regardless of that I would definitely seek out another opinion or, two. Where is your brother located? Hang in there Bean because, this is way too early to throw in the towel. There is this saying: first you cry – then you fight. We are with you….all the way.
MarionDecember 23, 2009 at 7:06 pm #33871
thoughtsbecomethings…..thanks for joining and sharing your pertinent information with us. It warms my heart when someone like you comes on board in order to help someone facing this disease.
My best wishes for continued success with your Mom.
MarionDecember 23, 2009 at 5:26 pm #33870thoughtsbecomethingsMember
My mom was diagnosed in October 2009 and had a liver resection performed at Mount Sinai by Dr. Myron Schwartz. Could be worth getting a second opinion from his team of 4 partners as they perform a lot of transplants too, so they’re at the cutting edge. The surgery was riskier then other liver resections because of various technical reasons and our feeling was that other surgeons would have not done anything. We had originally spoken with another liver surgeon and we’re fairly sure he would have opened and then just closed her up, if that (he wanted a biopsy first and a scan or the hepatic artery and portal vein called an mra scan). He said if these were affected and if other technical issues existed he might not operate and said it was 50/50. But, Schwartz looked at the scan and went straight to surgery and yes he did have to splice the hepatic artery and deal with other various risks since almost 75% of the liver was removed. Hats off to him and his team. It’s now week 5 post surgery (a tough surgery) and she’s recovering, and started her first chemo session in week 4. She’s doing GFLIP with cisplatin with Bruckner Oncology. Dr. Bruckner is one of the authors of the research on this chemo cocktail treatment that I’ve seen on one of the posts on this bulletin board. He seems to have a batch of patients who have been with him for years. Hope this is helpful. Would like to hear other people’s experiences with chemo in the nyc area and the regimens prescribed.
—Think positive healing thoughts and envision recovery.December 23, 2009 at 2:45 pm #33869lainySpectator
Hi Nancy. While it sounds like you are getting excellent care when they say NO to anything I just feel its time for another opinion. When Teddy had his Whipple 4 years ago we were told no chemo would work for his type of cancer. We talked to 5 doctors and all agreed. I had no question in my mind then. When we came home (everything occurred out of town) and got our “permanent Oncologist” his first remarks were, “I have no problems doing trials, if you want. I don’t do them but I know who does”. This told me he was aggressive and he is excellent. You also want to make sure that whomever you end up seeing has much experience with CC. While I don’t know doctors out East I do know you will get some great suggestions on this Board. You have a winning attitude and with your fighting attitude you should do well.December 23, 2009 at 2:12 pm #33868
Thank you so much for the infromation. I’am so sorry to hear that your dad has had a reoccurence. Did he originally have surgery to remove the tumor? I’am on my first cycle and have had 3 treatments with the Gemcitabin/Cisplatin so far no side effects. Did your Dad have any other treatment-radiation? is he a candidate? Being diagnosed just in early October I have so many? my oncologist is caring, compassionate but still I have ? The only thing I don’t question is my will to live. I will keep you and your Dad in my prayers.December 23, 2009 at 1:29 pm #33867kayMember
Dad had a reoccurence of CC in August after almost 2 years. He received Gemcitabin/Cisplatin for 6 cycles. Significantly shrunk tumor. 35days of radiation followed. Now he is having 6 more cycles of Gemcitabin/Cisplatin. PET scan will be at the end of January. He feels horrible days 4 & 5 after chemo but other than that side effects have been managable.
Good luck! I am sure you will do great!December 23, 2009 at 12:34 pm #33866
Sorry Lainy you had asked where I am from I live in NJ on the border of PA. in a town called Phillipsburg. Easton PA is right across the Delaware. Philadelphia is a little closer than NY which is where I am being treated now. I do not have any travel limits on where I would go for a consult. Maryland where John Hopkins is not to far only about 3 1/2 to 4 hours so I would be interested in any referrals. I saw a local oncologist yesterday not my Dr. from Sloan and he said that I should get a second opinion right away. He said being that I’am fairly young with no underlying medical conditions that I should not be satisfied with the standard of care. He feels that I should be considered for trials or other treatment options. I realize with the holidays just days away the posting is slow but whenever anyone gets back on I would be interested in learning about Drs. treatments etc… Thanks to all have a very Merry Christmas!December 23, 2009 at 12:21 pm #33865
So sorry to hear that your moms sugrgery could not be completed. I hope this finds her feeling a little bettler and less sore. I pray that her chemo will be successful. You sound like a wonderful caring daughter your mom is lucky to have you. I have a daughter she is my rock she has just been unbelievable in the face of this horrible disease. I would be interested to learn how your consult with the Mayo Clinic turns out. I will keep you and your mom in my thoughts and prayers.December 22, 2009 at 1:19 pm #33864tstewart4128Member
Hi and welcome. My mother was recently diagnosed with stage 4 cc. She was in NY consulting with Sloan and did have surgery. Unfortunetly, once they got in there was mets on her liver. Everything is still small, no huge tumors and like you sad she pretty much feels fine. Shes still sore from the surgery but is going to be starting the same type of chemo as you on Dec 31st. She lives in Florida and is having her treatments at Moffitt Cancer Cener. We are also consulting with Mayo Clinic.
I wish you the best. You sound like you have a great additude and alot to live for and I have read stories on this board of people with stage 4 kicking it and living their lives. There is always hope. Please keep on posted. Have a great holiday.December 22, 2009 at 12:00 pm #33863
Thank you so much for the replies. I’am so appreciative. I live in NJ and have been having my treatment at Sloan Kettering in NY. I was so close to being a candidate for surgery that when my husband and I were told it was not being considered we were devastated. We have been reeling from that decision. I have three children-wonderful children the youngest 20. I’am scheduled for a CT scan after 9 weeks of chemo that will be sometime in January I believe the third week i was diagnosed in October had a stent internalized for removal of bilirubin in very early November my wedding anniversay actually can’t say I remember to much of that day. I have had no problems I feel like myself no pain, no nausea, no fatigue I’am tolerating chemo well my energy level is good labs have been good. I feel like I’am getting excellent treatment from Sloan but am extremely interested in a second opinion I have all of my discs from my studies and have all labs, consults, etc… Sloan has told me they will make all treatment options available to me being that I’am healthy and have no underlying medical conditions. They do not believe I am able to have radiation. I have been looking into Fox Chase Cancer Center in Philadelphia I live in western NJ and right now it is taking about 1 hour and 40 minutes to get to NY without much traffic. Fox Chase is affiliated with a local hospital Hunterdon Medical Center which is about 30 minutes from my home I wonder if they can offer all treatment options of the larger facicilities? I’am ready to fight and give this all I have and more. My attitude has been good I do have some very bad days not all day long but times where I just sit and weep. I know others are in the same situation I’am and that is why I’am so grateful to have found this site. Thank you all you have made my day.December 22, 2009 at 6:40 am #33862
Lulu….I would like to echo ajcarman and Lainy in welcoming you to our site. The Gemcitabin/Cisplatin study was the largest multinational bile duct cancer/ Cholangiocarcinoma study ever conducted. You may read up on the abstract and on postings from other members by using the “search function” on top of the page. Simply, type in gemcitabine cisplatin (you don’t need an author) or you may use the “google” function, top, right hand side. I am hoping for others to come forward and share some of their personal information with you although, historically, this time of the year, our board seems to slow down a bit. Nevertheless, the information hidden in our postings is numerous and informative and it may bridge you over until you receive some responses from our members. Positive biopsies for this tumor are not always obtained in fact, I believe that in most instances they are negative. In such a case all other symptoms will be evaluated and a diagnoses is made based on those values as it was handled in your case. I do agree with Lainy in that I would pursue at least another medical opinion. In that case you might want to make sure to have copies of all reports including, CT scans, MRI’s, blood test, doctor’s reports, etc. in order to forward those to physicians familiar with this cancer. Hang in there Lulu and continue to put out your questions. And yes, miracles do happen. We have seen it on this board.
Best wishes coming your way,
MarionDecember 22, 2009 at 12:05 am #33861lainySpectator
Hi Nancy and welcome to our family. Would you mind telling us where you are located, it would help in possibly advising a surgeon or a second opinion. Looks like the chemo cocktail of G and C is the popular one lately and others seem to have fared pretty well with it. I am sure they will chime in with their welcome. Sorry you had to find us but so glad you did.December 21, 2009 at 11:57 pm #33860ajcarman72Spectator
Wishing you the best Nancy! My mom is 55 and was diagnosed this year and is on gemcitibine and oxaliplatin right now. I don’t have answers for your questions, but am confident others here will.
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