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(5 replies, posted in Introductions!)

Ginger, I live in Derby, Kansas. My husband, Ted was diagnosed with Cholangiocarcinoma (Klatskins Tumor) in August 2008. His tumor was unresectable. We went to John's Hopkins hospital in Baltimore, Md. However,
he received followup treatment in Wichita. The surgeon in Wichita, Dr. Duane Osbourne was instrumental in setting us up with a colleague at Johns Hopkins, Dr. Pawlik who performed the surgery. Both wonderful! Dr. Osbourne is very familiar with CC. You might try to contact him and get an opinion. Ted's oncologist is Dr. Parva Reddy (Cancer Center of Kansas) in Wichita, he is also familiar with CC and his treatment plan has worked well for Ted. He was recommended to us by an oncologist specializing in Bile Duct Cancer from KU Med. Center. Ted also received daily radiation from Dr. Joseph Kelly at the Cyberknife Center in Wichita. Excellent doctor! If your daughter needs to have surgery you really need to be at a hospital like Mayos, MD Anderson or Johns Hopkins where a team of surgeons specializing in CC will be able to help you. The doctors I have mentioned above are in Wichita and able to advise you. Ted's tumor was unresectable but was treated with Xeloda and Radiation and he has responded well, to the point they can't see the tumor on the PET/CT scans and MRI tests that he has done every 3 months. It has been almost 3 years since his diagnosis and we are very grateful to all the doctors that treated him. If you would like to talk anytime, please let me know and I can share more information with you.

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(187 replies, posted in Hospitals)

My husband, Ted, has been treated by the following doctors:

Dr. Pawlik performed an 8 hour surgery on Ted, but a liver resection was not possible due to the extent of the tumor. He took out his gall bladder and performed a Roux en y to allow better drainage for the bile which has been instrumental in keeping his GI area functioning properly.  Dr. Pawlik is highly regarded in this area of surgery and has performed many successful liver resections.
Dr. Timothy Pawlik, (Surgeon  Specializes in Bilary Surgery)
Johns Hopkins Hospital
600 N. Wolfe Street
Halsted 614
Baltimore, Maryland  21287
410-502-2387


2nd Opinion Doctors (Kansas City, Kansas area)
Dr. Joaquina  Beranda  (Oncologist - Specializing in Liver and Bilary Cancers)
The University of Kansas Hospital
Westwood Cancer Center & Medical Pavilion
2330 Shawnee Mission Parkway
Westwood, Ks.  66205   
913-588-7750   
             
Dr. Eashwer K. Reddy (Radiation Oncologist)
The University of Kansas Hospital
3901 Rainbow Boulevard
Kansas City, Ks.  66160
913-588-1227
Our 2nd opinion doctors helped set us up with treatment plans and the doctors we currently see in Wichita, Ks.


Current doctors we are receiving treatment from in our hometown of Wichita, Kansas

Dr. Parvan Reddy  (Oncologist)
Cancer Center of Kansas
818 N. Emporia
Wichita, Ks  67214
316-262-4467

Dr. Joseph Kelley, M.D. (Radiation Oncologist)
Via Christi Cancer Center
817 N. Emporia
Wichita, Ks.  67214   
316-268-5927

We have truly been blessed to have received excellent care from all of these wonderful doctors. Their knowledge and expertise have been crucial in helping us make decisions and giving us strength.

3

(8 replies, posted in General Discussion)

Suzanne,
My husband has a hernia right under his abdominal surgery incision sight. He developed this about 4 months after surgery. We had an appointment today with our Radiation Oncologist and he wants our surgeon to look at it to see if anything should be done. He really thinks it should be left alone but the hernia has grown since our last visit and he wants the surgeon's opinion because it is getting larger. He did tell us that the hernia is "flat" and shouldn't cause any problems but it does protrude and is annoying because he has to consistently push it back in to his chest. The hernia is also located very close to his external drain sight and that would make the surgery more difficult. I am really hoping our surgeon says he shouldn't go through the hernia repair because I really hate to see him go through surgery again and the risks of infection and other complications that could occur. My point is we were told by our oncologist and radiation oncologist to leave the hernia alone and neither one recommended surgery until the hernia got bigger and then they wanted us to consult with our surgeon just to be sure. 

Make sure your doctor is aware of your hernia and be very careful not to strain yourself or lift anything heavy. My husband feels good and tends to try to do too much around the house, it is hard to keep him down. That could be why his hernia has grown.  We were told that post operative hernias are very common.

Debbie

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(7 replies, posted in General Discussion)

Kris,
I read your post and wanted you to know I am thinking of you. This is such a difficult journey and I so admire your strength. When you mentioned being tired of "the roller coaster of hope and despair", that is so true. This journey for many of us has been getting our hopes up one day only to be let down the next. The many posts I have read have given my husband and I the strength to continue to have hope and a postive attitude as well as the love of family, friends and prayer.

I wanted to share with you what our doctors told us about the PET scan and this might be helpful to you regarding the reason your doctors may want to do additional tests. Our doctors both in Wichita, Ks. and Johns Hopkins in Baltimore, Md. both ordered Pet Scans to help with determining if surgery was possible. For example, my husband had a PET scan before surgery to show the doctor whether or not the cancer had mestasized. My husband's results showed that the only "activity" on the PET scan was contained in the Bile Ducts. So the surgeon proceeded with surgery only to find out when he got in, that the tumor encased the major blood vessels on both sides of the liver and a resection was not possible. It has just recently been approved by our insurance company to use PET scans for bile duct cancer. Basically what the doctors told us the information from the PET scan is useful, but other imaging tests are needed and give them more information. I was always under the impression the PET scan showed more information but in the case of bile duct cancer, the doctors need additional tests. I don't know how helpful that information is to you but I wanted to share our experience with you. What we learned is that the PET scan is more useful to the oncologist and radiation oncologist rather than the surgeon.  After chemo and radiation treatment, my husband is now being monitored every 3 months with a PET scan and CT scan. Please stay strong. I am thinking and praying for you. This site is and has been a blessing to my husband and I.

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(7 replies, posted in General Discussion)

Ron,
My husband was diagnosed in Aug. 2008, unresectable in Sept. 2008, began 6 weeks of daily radiation in Nov. 2008 with 2 weeks on Xeloda and 1 week off. He completed 6 rounds of Xeloda -2 pills in the morning and 2 pills in the evening. He got along great and finished treatment at the end of May. The only side effects he had was hand and foot syndrome. He said it felt like his hands were very slick and dry and it was hard to hang on to things. His feet were very dry and our oncologist recommended Bag Balm (you can get it at WalGreens), to rub on his feet. He did say during the time he was on chemo certain foods did not taste good and had a "metal" taste. We used plastic utensils during this time to help with that symptom. He is now being monitored with imaging tests and blood tests. So far the tumor has shrunk and is not showing up on the tests. His latest CT-19 (tumor marker blood test) showed he was at 14. He previously had been at 650. We are very encouraged with the results from radiation and Xeloda. The treatment of Xeloda was recommended to us by the oncologists at Johns Hopkins and KU Medical Center.

Dear Asif,
My husband was diagnosed with Cholangiocarcinoma in August 2008. Our surgeon in our hometown made arrangements for us to go to Johns Hopkins in Baltimore, Maryland to hopefully have a liver resection. Our surgeon was great but unfortunately my husband was not able to have the resection because the tumor involved the confluence of the bile duct as well as the portal vein and hepatic artery. The surgeon took out his gall bladder and rebuilt part of his bile duct so he could drain the bile from his liver. He also still has 2 plastic stents in his chest helping to drain. We were very happy with our surgeon. He worked for 8 hours on the tumor but just couldn't get it all out and it was more involved than what showed up on the imaging tests. The following is our surgeon's name and contact information:

Dr. Timothy Pawlik, M.D., M.P.H.
Division of Surgicial Oncology
600 N. Wolfe Street
Halsted 614
Baltimore, Maryland 21287

Phone 410-502-2387
Fax  410-502-2388

You can find his profile at www.hopkinsmedicine.org/surgery/faculty/Pawlik


I am sorry but I don't have an email address for him. I would highly recommend Dr. Pawlik.  However, if you can't get an appointment with him, there are other surgeons at Johns Hopkins that perform bilary surgery. Johns Hopkins is experienced in this kind of surgery and research. My husband had excellent care at this hospital.  Good luck and I will be thinking of you and your brother.

Hi Sarah,
My husband, Ted, has two bilary plastic stents on the left and right side of his bile ducts. They truly have saved his life allowing him to drain the bile internally so it doesn't backup in his liver. They are capped off and not attached with bags. He also had a roux n y to help him drain which was performed during his surgery. His bile duct tumor was deemed unresectable during surgery, however, the Roux n y has proven to be a lifesaver.  Our oncologist told us that Ted will have the plastic stents in until he is in remission and then they will be replaced with metal stents. Right now they are working wonders and my husband's bilirubin levels are within a normal range. I wanted to share with you that everytime we go for a stent change, the next day my husband develops fever. The interventional radiologist has told us the stent changes are very hard on the patient's system with the possiblity of scar tissue developing and infections. We have learned at this point to treat the fever at home with Tylenol (as that is what they used when his fever was 103 degrees in the emergency room). We treat his fevers at home if they are l00-101 degrees. If the fever climbs to 102 as it has on 2 occasions then we call the doctor and go to the emergency room. We have an antibiotic (Levaquin) to use only when the doctor tells us to use it. He gave us directions not to use it frequently as Ted would develop an immunity to it and it could quit working for him. We have only used it with the higher fevers and after the high fevers for a week. His 100-101 fevers are occurring at fewer times now and usually with two Tylenols and a wet wash cloth on his forehead it goes down within two hours. However, your doctors may give you different advise including whether or not you should use Tylenol and what will work for your specific situation. I know we feel very grateful for our doctors and the care they have given my husband. But each case is different and everyone responds differently to various treatments. This has been our experience with fever and infections and thankfully we have been able to manage the low fevers up to this point.

8

(41 replies, posted in General Discussion)

Kris and Hans,
My thoughts and prayers are with you. Keep thinking positive. My husband was not able to have surgery and we were told that the tumor encased the portal vein and hepatic artery. He just finished 5 weeks of daily radiation and is currently taking a morning and evening dose of Xeloda. He has done very well so far. We will have an MRI done in February to see if the tumor has shrunk. If it has, we are hoping he will be able to have Cyberknife treatments as suggested by our Radiation Oncologist. There are so many treatments out there. Please ask your doctors about radiation. My husband got through the treatments with only fatigue as a side effect. Please let Kris know that her friends on this site are sending our love and prayers with lots of hope that she will get stronger each day.
                                                                     Debbie

I am so happy that John is doing great after his first chemoembolization. That is truly a blessing! Johns Hopkins is a wonderful hospital with brilliant  doctors that are dedicated to helping our loved ones with bile duct cancer! Thank you for the update. My prayers are with you both.

Sarah,
I was thinking that Brachytherapy was the same as Theraspheres treatment. I'm probably wrong. Sorry! If you want to contact a wonderful Radiation Oncologist at Johns Hopkins with experience treating Bile Duct Cancer please contact Dr. Joseph Herman, Dept. of Radiation Oncology & Molecular Radiation Sciences, Phone # 410-614-3823, Fax# 410-502-1419. If you go into the Johns Hopkins website you can find his email address. He would be able to answer your questions about what kinds of treatments are being done at Johns Hopkins for Bile Duct Cancer.  I would be hesitant on relying upon your doctor at Mayo's to tell you what treatments are being done at another treatment center. We found doctors in the same city are not always aware of what is being done as treatment for this cancer. I had better luck and quicker responses doing my own research. In my quest to find out more about Bile Duct Cancer, I did come across the following treatment centers in the East that focus on treating Bile Duct Cancer: Memorial Sloan Kettering, New York Presbyterian Hospital and Barnes-Jewish Hospital in St. Louis. I don't know anyone with experience as a patient at these hospitals, but found they kept coming up on sites that focus on treating Bile Duct Cancer. Keep the hope and thinking positive. My thoughts are with you in your journey to find treatment. I know how you feel.

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(2 replies, posted in Introductions!)

Hi Everyone!
I wanted to introduce myself to you, although, I feel like I already know you. I found this website when my husband, Ted, was diagnosed with a Klatskin's Tumor (Cholangiocarcinoma) in August 2008. I can't begin to tell you what a lifesaving source of information this site has been for us. Until August my husband and I had never heard of Bile Duct Cancer. We were hit with the grim diagnosis and devasted. I came home from the hospital every night searching for information to help us understand what we were facing. Of all the research and websites this one has been the best!! I have learned so much from you all. I got into the habit of checking the discussion board every day for information about treatments, symptoms, caregiving, nutrition, etc. Thank you from the bottom of my heart. We learned about the various types of treatments that have been successful in treating this cancer which has helped us as we talk with our surgeons, oncologist and radiation oncologist. Mostly we have learned there is hope and survivors and just because the doctors give you a devastating prognosis, don't give up. Thank you for restoring our strength and hope.  My husband is 57 and is doing well. We are from Kansas and we were referred to Johns Hopkins Hospital in Baltimore, Maryland where he had an 8 hour surgery on Sept. 24th. Unfortunately, because of the location of the tumor and the fact it encased his hepatic and portal vein arteries close to the liver, the liver resection we had hoped for could not be performed. Our surgeon removed his gall bladder and performed a roux en y to help his bile drain normally. He currently has 2 stents in the confluent area of his bile duct to keep them open. These tubes extend out of his chest, but he has no external drain bags, although he had bags early in his diagnosis. Currently we are back in Kansas where he is receiving daily radiation treatments and chemo (Xeloda). So far his only side effect has been fatigue. Our hope is that the tumor will shrink enough that he will be able to receive Cyberknife treatments in Wichita, Ks. We won't know until further testing is done in January. I was shy about posting on the site but then I felt like if our experience can help someone else I need to do it. I know how much all of your postings have helped me as a caregiver and I am so grateful to you all. Thank you!!
Debbie

Sarah,
I am new to this forum, but I wanted to respond to your recent posts about treatment centers closer to your home. My husband has been diagnosed with intrahepatic bile duct cancer (Klatskin's Tumor) since August 08. We were referred to Johns Hopkins Hospital in Baltimore, Maryland and were there for 5 weeks - a long way from our home in Kansas. We had a wonderful surgeon and met with a great Radiation Oncologist who performs Brachytherapy. The doctors at this hospital specialize in Bile Duct Cancer and are very up to date with current treatments. They present your case to a team of liver surgeons weekly and together they determine what should be done. My husband had surgery on Sept. 24th but unfortunatley the tumor encased his portal vein and hepatic artery and they could not perform the liver resection we had hoped for. They removed his gall bladder and rebuilt his bile duct with a procedure called a roux en y to help drain the bile. He has 2 stents, one on each side of the confluence of the bile duct close to the liver and now the newly built roux en y. Recuperating from surgery was difficult but he has done very well. We are back in Kansas and he is currently receiving daily radiation treatments and chemo (Xeloda). He has gotten along well. Our hope is that the tumor will shrink enough that our radiation oncologist will be able to administer Cyberknife treatments. We won't know until the middle of January. I wanted to post this to let you know that Johns Hopkins is a wonderful hospital and we are so thankful that we received treatment there. Our surgeon was brilliant and we were so pleased with the care he provided us. My husband's surgery took 8 hours and our surgeon did all that he could before he decided to abandon the liver resection. My husband is doing well at this time and he is 57 years old. It sounds like your boyfriend is young and would have the gift of strength and youth on his side. Please don't give up. We were given a dismal prognosis in August and faith, hope and prayers have brought us a long way. If you would like to ask me anything about Johns Hopkins please e mail me and I would be glad to give you our doctor's names and any other information you need. Good luck.