CancerCompass message board discussion started by Mary b. on 6/10/2004 http://www.cancercompass.com/message-board/message/all,1163,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mother of 64 years was just confimed having Cholaniocarcinoma. I am her daughter and I am trying to find the best possible care for this rare and compicated cancer. I keep reading that an experienced surgeon and team is important but I am not having much luck getting surgeon names and hospitals. She lives in Southern California, the LA area, but we are not oppossed to travel. Does anyone have some direction to give me??? Mary b. Thu, 10 Jun 2004 00:00:00 GMT I went to a hospital in Houston, TX. They have wonderful facilities there, caring staff, a hotel, etc. My surgical oncologist was in the Gastro dept. All they treat is Cancer and it worked for me. Good luck and God Bless, K. Bodac Mon, 14 Jun 2004 00:00:00 GMT Hello. My name is Lyra and I am 29 years old and live in Albuquerque New Mexico. My husband was diagnosed on May 15, 2003 with Cholangiocarcinoma. He died on January 31, 2004 this year. If it were not for the miraculous surgery he got, he would have only lived 2 days instead of 8 months! I really never check the posted messages like yours because he is passed away and I have gotten out of checking the updates to this site. However, for some reason I just clicked on to see and here you were. The surgeon who performed my husband's 20 hour operation to remove a large tumor in the common bile duct was part of a cancer center in New Mexico. He is one of the best in the country and specializes in cancers of the stomach. I wish the very best to you and your mother. Please e-mail me if you need any other information or phone numbers. Blessings many times over. Sincerely, Lyra Lyra F. Wed, 16 Jun 2004 00:00:00 GMT I am 54 years old and am a cancer survivor for your mom's kind of cancer for over 4 years. I was fortunate enough that my doctors found my cancer early, and I was operated on in May 2000 (had the Whipple Procedure) by a noted specialist in pancreatic cancer in Philadelphia. I understood that he is one of the best in the country, but from the other messages I just read, there appears to be others in this area. I followed surgery with chemo and radiation. However, if you read the articles posted by the Cancer Treatment Centers of America, you'll find new information that indicates no radiation, just chemo afterward. I also know someone who had pancreatic cancer and was operated on and during surgery, after the removal of the tumor, he was wrapped in plastic and taken to the radiation department where he underwent radiation treatment while he was still opened. In doing so, more radiation was directed at the area of the tumor than you can receive after surgery. After the radiation treatment, he was sent back to the hospital for the completion of the surgery. I wish I had known about this treatment for myself. He's a 5 year survivor!!!! And he's doing great, with no recurrence whatsoever! Unfortunately, my cancer recurred in December 2002 and I have been undergoing more chemo since April 2003 (Gemzar). It has spread, but the Gemzar seems to be working even after over a year of treatment. I also received second opinions from several hospitals but they couldn't offer anything other than what I received. I am getting my treatments near where I live and I am very pleased with the treatment I am receiving. If you haven't already, contact an Oncology Information Specialist at CTCA for any input she can give you about their facility. I did, and was pleased with her assistance. Best wishes and God Bless to you and your mother!! My daughter has been taking care of me over these past 4 years, and I know the care-taker's role is extremely hard as well. If I may be of further assistance, please feel free to contact me. Fondly, Marsha B. Marsha B. Thu, 17 Jun 2004 00:00:00 GMT My daughter, age 44 had a modified whipple surgery over 5 years ago for a malignant polyp in the ampulla of vader. She even had some cancer cells in the pancreas and about 2/3 of it was removed. Her doctor in Memphis, TN did an excellent job on her surgery. I would highly recommend him to anyone needing similar surgery. Although she has had liver abscesses and was hospitalized off and on for a year, she is doing fine now and has gained back up to her pre-op weight of 145#. Marlene B. Tue, 22 Jun 2004 00:00:00 GMT My husband had renal cell carcinoma and malignant melanoma in 2000. Surgery was done for the renal cell and only 1/10 of his kidney was removed and he took no treatment. He went every six months for cat scans, bone scans and MRI. In April was his four-year check up and they found a tumor in his bile duct. Because they were unable to get a biopsy the liver transplant surgeon at Integress Hospital in Oklahoma City took out the bile duct and 1/2 of his liver. He suggested we go to M. D. Anderson in Houston for treatment. When we arrived down there they did all of his scans again and then found a tumor in his head and two in his pancreas. They decided to treat the cholangeo first with three months of Chemo (Gemzar and Cisplatin every two weeks. After the treatment we went back to M. D. Anderson and had Sterotactic radiosurgery on the head tumor and then they put him on Interferon for the renal cell in his pancreas. After two month the tumor in his head shrank 25% d the tumors in his pancreas are the same. We are going to be on Interferon until Jan 7 when we go back for scans. My husband is 64 years old and with these four types of cancers has never had any symptoms or has ever been sick even from the Chemo or Interferon which he gives himself a shot twice a day every day. He has amazed the doctors and hope that we can keep up the fight. Redhorse Mon, 15 Nov 2004 00:00:00 GMT I was told that I had Pancreas cancer and a whipple was attempted on July 20th at Georgetown University. They failed to remove it and gave me 6 to 9 months to live. I called John Hopkins University and set up an appointment is Dr. John Cameron. He said he could remove it and he did on Oct 15, 2004. I actually had Cholaniocarcinoma that invaded the pancreas with negitive margins and cells in one out of seven lympth nodes. I highly recommend both Hopkins Hospital and Dr. Cameron however, I hear one of the world's top Pancreas surgeons is located at University of Irvine in Irvine, CA. At present I am searching for advice on further treatment. Dr. Cameron wants me to take the Picozzi Regement but I am looking into other options. Anyone that has had the Picozzi I would appreciate hearing from you. Glenngary Thu, 16 Dec 2004 00:00:00 GMT Did you find a great specialist in southern california? Did you find a great doctor anywhere? Who is it and what were your results. My sister was just diagosised with Bile duct cancer that spread to her uterus and abdomin, she just had a baby 5 weeks early (he is OK). They told her it is Stage 4. What information have you found out, PLEASE let me know. Do you know anything about Canelim Capsules? Helpsister Wed, 09 Mar 2005 00:00:00 GMT I'm not exactly sure what my purpose was for replying to your message.. I guess I was compelled by your young age as I am 25 years old and my 29 year old husband has been diagnosed with bile duct cancer. As with most, his prognosis is short. Because of the advanced stage I am told he is not a candidate for surgery. He is currently at UCI hospital in Orange, California. His oncologist Dr. Shin has recommended a clinical study that is a combination of capecitabine and gemcitabine(chemotherapies) and as I am aware now is the only option left that might be more effective then just improving quality of life. This is all so new..we found out 3 days ago. I guess any information/suggestions/tips for emotional support/physicians, etc. would be great from anyone. I have heard of canelim capsules and am searching for anyone that has infromation regarding them as well. I am so scared, I just don't even know where to start. I stumbled upon this website and decided to respond..I guess that is all. Thank you for your time. Tanya Tue, 29 Mar 2005 00:00:00 GMT This is in response to Glenn F., my brother has just been diagnosed with this type of cancer it sounds very similar to yours and we are searching for the best medical teams for fast consultation. The difference is that his cancer has begun to spread to his liver, very early stage of travel, he was in for a modified whipple when they discovered it had started to spread. They removed his gallbladder and gave him a roux-en-y, but did not remove the bile duct or really treat the cancer. I live in DC and he would very easily be available to travel to Georgetown and Hopkins, you mentioned Dr. Cameron, where can he be located...we have also been looking to the Mayo clinic for help. I am hoping we have caught this early and can come out with success, congrats on yours...and thanks for the very helpful and hopeful info on something that has left our family in a state of shock, my brother seemed to be a healthy 55 year old. Maria M. Barlow Sun, 03 Apr 2005 00:00:00 GMT Maria, we also live in the DC area. My 40 year old husband was diagnosed with cholangiocarcinoma (Bile Duct Cancer) in Sept 2004 and had surgery in October which removed part of his bile ducts and 60% of his liver. They did a combination of radiation and chemo in Jan and Feb 2005. They had hoped that combined with the surgery would take care of it all. Unfortunately another tumor showed up in March 2005. He will start another round of a combination of chemos (FOLFOX 6) next week. He is being treated at Bethesda National Naval Medical Center which is connected to NCI and NIH. I believe they have a couple of trials that we might try if this round of chemo doesn't shrink the tumor. We also went for a second opinion at Georgetown Hospital. We were told that Dr. John Marshall there is one of the best GI cancer doctors in the mid Atlantic. He recommended the treatment we start next week and also said he has options if Bethesda runs out of things to try. There are several ongoing clinical trials there. I have a friend whose Dad was treated by Dr. Cameron at John Hopkins in Baltimore. My understanding is that he is a surgeon (and one of the best around) but I'm not sure if he can provide treatment beyond surgery. Does anyone know if he does? Also, does anyone have any suggestions for treatments and treatment centers or doctors? We want to try everything possible since the diagnosis for this disease is so bleak. Thank you. Susan i Sat, 09 Apr 2005 00:00:00 GMT Thank you Susan I have forwarded your important info to my brother in helping to find the best place for treatment... It sounds as if your husband was a soldier, the first Iraq conflict? My Brother was also in Iraq, just wondering if this is a result of some sort of chemical exposure. Stay Strong Maria Barlow Sat, 09 Apr 2005 00:00:00 GMT Maria, I hope the information helps your brother. My husband was also healthy - something like this is such a shock. My husband is still on active duty in the Army (18 years). He did not serve in either war in Iraq but served in Just Cause in Panama. There is another message board at this site that addresses the question of soldiers getting this cancer. I believe the subject is Viet Nam. It might be helpful to look at that message board also. It seems very odd that so many young military guys are getting this disease. Maybe it is just coincidence but who knows. Good luck with your fight. I hope your brother gets the care he needs. Susan Susan i Sun, 10 Apr 2005 00:00:00 GMT I understand your feelings and am sorry that you both have to go through this. My husband is 45 and diagnosed November 2004. What a roller coaster ride it has been. By posting a message to this site, you are already headed in the right direction. Start searching and researching everything you can. It's overwhelming and frightening but knowledge is power. Talk to people, post messages, email specialists - do what ever you can. Find your local support groups. My husband went to UCLA. They are great but his liver resection surgery deemed unresectable. His stage has advanced. He is receiving radiation but can not have chemo because his bilirubin count is too high. He was accepted as a transplant patient but he won't live long enough to get to the top of the organ list. We must find a living donor. I am buried in information but email me if you want to share any of it. PS. Ask a lot of questions - I have found that there are many different aspects of this cancer & no two people have the same ordeal. Baldnblonde Thu, 14 Apr 2005 00:00:00 GMT Hi Susan I wanted to thank you for the info on Dr. Marshall we are trying to get in to see him now, I wanted to know how your husband was doing, and where the second tumor appeared. My brothers tumor started in the bile duct and spread to the outside of the liver ..but does not appear on any scans since the spots are very small, the cancer is extrahepatic. Was it the same for your husband. Thanks Maria Barlow Wed, 20 Apr 2005 00:00:00 GMT Hi baldnblonde The info is truly overwhelming we are searching and researching... My brothers cancer started in his bile duct and has traveled to the outside of the liver, he had a first surgery which left the tumor and took out the gallbladder. We are trying to get info but some hospitals we have contacted are telling us the only treatment is chemo..we of course do not want to start and end at this point...any reccomendation of doctors would be a great help we are trying to get some cross referance of names, since it takes forever to get an appointment...I feel like I am on a deadline here and can not get the info we need... We are head strong girls and not about to take no for an answer... Thanks so much for any inf and I hope your husband can find a donor..do not give up... Maria Barlow Wed, 20 Apr 2005 00:00:00 GMT Hi Tina The info is truly overwhelming we are searching and researching... My brothers cancer started in his bile duct and has traveled to the outside of the liver, he had a first surgery which left the tumor and took out the gallbladder. We are trying to get info but some hospitals we have contacted are telling us the only treatment is chemo..we of course do not want to start and end at this point...any reccomendation of doctors would be a great help we are trying to get some cross referance of names, since it takes forever to get an appointment...I feel like I am on a deadline here and can not get the info we need... We are head strong girls and not about to take no for an answer... Thanks so much for any inf and I hope your husband can find a donor..do not give up... Maria Barlow Wed, 20 Apr 2005 00:00:00 GMT Thank you Susan I think that this website is fantastic and the more info we get the better. We are at trying to understand this type of cancer and how it is treated, which at this point seems many different directions... Please keep us updated with your husbands progress ...and again the type of chemo you mentioned I found was also used on another patient.. Good Luck Maria Barlow Wed, 20 Apr 2005 00:00:00 GMT Mary, my husband has this rare type of cancer. Unfortunaly his is not operable. We have been attending MD Anderson in Houston, Texas for the past three years. They are supposed to be "the best in the world" Good Luck to you and your family. Marilyn Sat, 23 Apr 2005 00:00:00 GMT My wife was diagnosed with this disease 2 months ago. I can relate totally to your fear. It gripped me for about a month. You get used to it if you direct your energy positively to beating the disease - very hard to do, but not impossible. There are people out there who have survived 4 years and more with it - and with decent quality of life. Two that I know of are still going. You need to look at the combination therapies involving multiple chemo drugs administered at lower doses. I have a collection of internet research that I have compiled over the last 30 days, from reputable peer-reviewed sources. It would save you hours and give you a lot of ideas. Do not give up. Your husband's youth is a plus and the fight is not over. It is just beginning. Regards, Jeff Jeff_s Tue, 26 Apr 2005 00:00:00 GMT Tanya, I neglected to put your name on the previous post(message #20.)It was directed to you. Best of Luck. Jeff Jeff_s Tue, 26 Apr 2005 00:00:00 GMT Marilyn, My mom lives in Texas and has just found out that she has a tumor in her bile duct (klatskin tumor). Who is the doctor you are seeing at MD Houston? We need to get a second opinion. Thank you very much. Chef Karla Chef Karla Fri, 29 Apr 2005 00:00:00 GMT Hello, What is the Picozzi Regement? My mother's oncologist at Virginia Mason in Seattle is Dr Picozzi, Any relation? She had a tumor in her bile duct and had it removed about 6 weeks ago. Now she is going to have combo radiation and chemo. Thanks for your time, Jenn Jennjo Fri, 13 May 2005 00:00:00 GMT My dad was diagnosed with bile duct cancer last july and is still doing fairly well. His doctor said that they could not remove it but it is contained in the bile duct so I would like a second opinion. Could you tell me who the doctor was in Memphis? Thank you so much for any help. I feel like all this information is so overwhelming. I am scared for my dad. He is 59 but was in excellent health before this. He was running and playing all kinds of sports until this terrible disease hit him. I just want to help him. If you have any other information helpful please let me know. I am sorry that your daughter is going through this also. I will pray for her and all of your family. Cheraldo Tue, 14 Jun 2005 00:00:00 GMT Cheraldo: As I said in a previous message, my 44 yr old daughter had cancer at the ampulla of vater and had surgery (a modified whipple). About 2 yrs ago, she started having a lot of pain and spent most of a year in the hospital and lost all the weight she had gained and then some, but God and her doctors in Memphis pulled her through and she has gained all of her weight back (from 89 pounds to 160) and is doing well. Her surgeon in Memphis is Dr. Scott King and her gastroenterologist is Dr. Michael Dragutsky. We would highly recommend them both to anyone. I will keep your father and you in my prayers. Marlene B. Marlene B. Tue, 14 Jun 2005 00:00:00 GMT My wife is 46 years old and has stage 4 gallbladder cancer. We have been told it is unresectable. The most aggressive surgeon I have come across is Dr. Jesus Esquivel at St. Agnes Hospital in Baltimore, MD. Here is the link: http://www.stagnes.org/cportal/general/content.asp?cid=301 I have also contacted a Dr. Leslie Blumgart at Sloan-Kettering in New York and Doctor Nadar Hanna at the Greenbaum Center at the University of Maryland. All of these doctors reviewed my wife's records and called and talked with me. My wife started a clinical trial but unfortunately got the older medicine, 5FU and Leucovorin. She is on her second round. On the 27th she will have a CAT scan to see how the disease has responded. She will then start a new trial with rebeccamycin and oxaliplatin in August. Trials can be found at http://www.nci.nih.gov/. In California, I found a company called Rational Therapeutics, www.rational-T.com. Thet test tumor samples in the lab and tell you which chemotherapies are most effective. My doctor said this doesn't work, but in desperate situations you have to try anything. Anyone who has experience with this disease please keep responding. Even if your loved one has passed, you input and support are invaluable. Rick Wamba138 Thu, 07 Jul 2005 00:00:00 GMT Jeff--my fiance has stage 4 cholangiocarcinoma...I would love to see the internet research you compiled. It would save me lots of time that we don't have as we race to find a treatment for him. He did one round of chemo--it did nothing. He waited 6 weeks to get into a clinical trail at Johns Hopkins--they gave him the runaround, and then bounced him out of the trial after 2 weeks. For no rational reason. The Hopkins doctors acted deplorably. That's a topic for another day. Any help would be appreciated. Liz_s Sat, 20 Aug 2005 00:00:00 GMT Jeff- I would love to get the info you have compiled. My father was recently diagnosed with non-operable cholangio. We are At UCLA medical center right now for a stent placement. We still have a lot of faith and hope and any info on treatments, clinical trials, new chemo drugs(pretty much anything) would be greatly appreciated. Our prayers are with you and your family. Elizabeth N. Elizabeth n. Tue, 30 Aug 2005 00:00:00 GMT There are a number of good people out there. In the order I would go: 1) John Chabot at Presbyterian Columbia Hospital in New York. Here is the link. http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=jac4&DepAffil=Surgery 2) Leslie Blumgart from Sloan Kettering. http://www.mskcc.org/prg/prg/bios/34.cfm He is one of the pioneers in this surgery, but very expensive and you should be sure your insurance will cover. Ours did not. Ouch! 3) Kevin Roggin at University of Chicago. http://siss10.bsd.uchicago.edu/common/bio.cfm?staffid=KRoggin He trained under Leslie Blumgart and is smart as hell. I dealt with him when my wife was at Sloan. Very professional. The only reason I put Chabot above the others is that he took a tough case that Blumgart would not touch and saved the woman's life 9 years ago. Good Luck! Jeff_s Tue, 30 Aug 2005 00:00:00 GMT I would like to set up a web page for this info and will try to do so soon, but in the meantime, send me your email address and I will send back everything I have in a zip file. You can contact me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---. In the meantime, you may want to consider aggressive combination chemotherapy. My wife receives 6 drugs at a time once every 2 weeks: Gemzar, 5fu, leucovorin, Avastin, Camptosar and Oxaliplatin. She gets lower than standard doses, but the mix seems synergistic. She was diagnosed in February and is better now than she was then. You never know what the future holds, but so far so good. Keep fighting; I am convinced this is a battle that can be won. 5 years ago, 4 of the 6 drugs my wife gets now were not available. Imagine what we can expect 5 years from now if we can just hold the cancer at bay? I am in contact with 2 people who are 4 years out from their diagnosis and doing well - not disease free, but enjoying life and expecting to do so for a long time to come. Jeff_s Tue, 30 Aug 2005 00:00:00 GMT Susan--can you share with us WHAT EXACTLY Dr Marshall has recommended? We, too, are going to see him for a treatment regime. /Liz Liz_s Wed, 31 Aug 2005 00:00:00 GMT Hi Liz, We went to see Dr. Marshall and have been on a consultation basis with him. He has worked with our doctors to come up with the last two treatment plans for my husband. I would imagine his treatments would vary by patient but I can tell you what they came up with us. The first round was FOLFOX6 with Erbitux. The Erbitux gave my husband a really bad rash so they switched out Erbitux for Avastin on the second round, still continuing the FOLFOX 6. The first round seemed to be working but the second round did not so we are deciding what to do next. The other treatment recommended by Dr. Marshall was Gemcitibine combined with some other agent. We do not have time to go see Dr. Marshall this round but our doctor talked to him. Dr. Marshall thought it might be time to skip the chemo and try some Phase I trials he has at Georgetown but after consulting with our other doctors we decided to try one more round of chemo and then see about trials. I am going to run the combo on message 30 by our doctors and see if that is an option. They are recommending Gemcitibine and Cisplatine or Gemcitibine and Taxotere. Apparentely the Taxotere is supposed to be pretty rough so we are leaning towards Cisplatin. There are so many options, it's hard to know what to do. It's nice to be given choices but very stressful to have to make them. Good Luck! Susan i Thu, 01 Sep 2005 00:00:00 GMT Thanks for the info, Susan. As another data point for you, my fiance started with a chemo treatment of Gemcitabine and Xeloda. It was a big zero. His cancer spread. We were then going to do a 2nd chemo round with Cisplatin--but THAT has very harsh side effects.(Check that out carefully.) So, we then looked into other options and ultimately went into a Phase I trial at Johns Hopkins. That took 6 weeks to get in, then they bounced us out after 2 weeks because he didn't have perfect organ conditions. (That's the downside of trials--they can dismiss you in a NY minute. So, we're going to see Dr. Marshall. Take a look at the National Cancer Institute. www.cancer.gov. You can fill out a form online or on the phone, and they'll match you up with NIH trials. So, you don't need to research, you don't need to call. They call you. In fact, I just rec'd 2 new trials today via email from them. Makes research MUCH easier. /Liz Liz_s Thu, 01 Sep 2005 00:00:00 GMT Who is the excellent surgeon you mentioned in Memphis TN? My brother-in-law was just diagnosed with cholangiocarcinoma. We live in the Chattanooga area. Thanks for you help. Robby Robby Sat, 18 Mar 2006 00:00:00 GMT Jeff_s You seem to know a lot about cholangiocarcinoma. Just wondered if you might know a great surgical oncologist in the Tennessee area? Would greatly appreciate your help. Thanks, Robin Robby Sat, 18 Mar 2006 00:00:00 GMT Sorry to say I do not know of anyone in your area. But since messaging on this topic last, I have become aware of an excellent interventional radiologist who does a radiation treatment called Therasphere at Northwestern Memorial Hospital in Chicago. His name is Riad Salem. Very smart and a good guy as well. Therasphere involves injecting microscopic radioactive particles directly into the blood supply of the tumor. The particles lodge in the capillaries of the tumor and radiate at a high level for about 10 days, then go inert. The advantage over conventional external radiation is that the intensity within the tumor is very high, but the collateral damage to good tissue is very low. If they can get it all, surgery is still by far the best option - the only one with real potential for cure. But if surgery is impossible, this is worth considering. My wife just had it done and we are about a month away from re-imaging to see how well it worked. Good Luck. Jeff_S. Jeff_s Sun, 19 Mar 2006 00:00:00 GMT  On 3/19/2006 Jeff_s wrote:Sorry to say I do not know of anyone in your area. But since messaging on this topic last, I have become aware of an excellent interventional radiologist who does a radiation treatment called Therasphere at Northwestern Memorial Hospital in Chicago. His name is Riad Salem. Very smart and a good guy as well. Therasphere involves injecting microscopic radioactive particles directly into the blood supply of the tumor. The particles lodge in the capillaries of the tumor and radiate at a high level for about 10 days, then go inert. The advantage over conventional external radiation is that the intensity within the tumor is very high, but the collateral damage to good tissue is very low. If they can get it all, surgery is still by far the best option - the only one with real potential for cure. But if surgery is impossible, this is worth considering. My wife just had it done and we are about a month away from re-imaging to see how well it worked. Good Luck. Jeff_S.Hello,My father's tumor is not resectable and is currently taking radiation theraphy at UIC- Chicago. I was wondering if your wife's radiation was a success. Thanks, Keeping Faith Fri, 05 Jan 2007 00:00:00 GMT