Topic: Info on Johns Hopkins & other treatment centers on the east coast

Dear all,
I'd like to introduce myself to the group after being a silent discussion board peruser for many weeks now. My name is Sarah, I'm 23, and my boyfriend is "jur777" who is 29 and was diagnosed with cc about 1 month ago while we were living in France.

We are currently at the Mayo Clinic and have seen Dr. Axel Grothey and Dr. Louis Roberts, and have been advised to go with the Theraspheres treatment. They have told us that John's cc is intrahepatic, inoperable, and transplant not possible. The tumor is about 6.5 cm, mostly on the right lobe but moving towards the left. Lymph nodes seem to be involved. Yesterday they successfully put a stent into his distended gall bladder to relieve some of his discomfort. It's Christmas Day and we thankfully got him discharged!

As we are from the east coast (NJ) we are searching for a treatment center that does Theraspheres closer to home. I have seen "Wayne" post that Dr. Kennedy in NC is the preeminent doctor for that treatment, but how about some other hospitals closer to NJ? Have any of you had or heard of experienced doctors treating CC with Theraspsheres at Sloan Kettering, Mt. Sinai, Johns Hopkins, in Pittsburgh or Philadelphia perhaps? We are looking to get started quickly, and of course closer to home would be best We could still do this at Mayo if we cannot find another hospital.

Please help!
Thanks for your input, this message board has been invaluable to me over the last few weeks.

Hugs and thanks all around,
Sarah

2 (edited by dlm2010 Sun, 28 Dec 2008 09:16:43)

Re: Info on Johns Hopkins & other treatment centers on the east coast

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.

Re: Info on Johns Hopkins & other treatment centers on the east coast

Hello Sara....thanks for posting.  Where are you located, presently?  Thereasphere is done at John Hopkins as dim2010 has mentioned however, there are many other places who will also treat with Therasphere.  Due to the Holidays others may lag behind in responding to your questions so, please don't hesitate to re-post in a few days. 
So, glad for joining us.
Tons of good wishes coming your way,
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

Re: Info on Johns Hopkins & other treatment centers on the east coast

Thanks for the responses to marions and dlm2010. We feel we are definitely racing against the clock. We have just arrived back home in Woodbridge, New Jersey (very close to NYC). I still am not convinced that John's Hopkins performs Theraspheres, our doctor at Mayo hasn't confirmed this. As I understand it, Theraspheres are different from Brachytherapy, using ytrium-90 instead of strontium-90, and using tiny glass beads to encapsulate the radiation.

I will look more into Johns Hopkins. I am glad they have treated your husband well there dlm2010. On their website they do not seem to treat CC with Theraspheres. Maybe it's just an outdated site?

Any more info from others about east coast Theraspheres treatment centers?? Thanks so much!

Re: Info on Johns Hopkins & other treatment centers on the east coast

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.