November 6, 2007 at 3:25 am #17660micheleParticipant
This is so helpful and as usual Jeff, your input is so positive. I hope more additions will be added and maybe we should even consider a separate topic with referrals for new folks?
C0olleen, I am going to probably ask for a consult with Dr Choti too. Hope your Fred is doing better? We go in tomorrow to get results of the 3 embollizations and next move, To having consistent back pain so am going to ask for a bone scan as per jeff’s suggestion. Thanks to all.November 5, 2007 at 6:05 pm #17659colleenParticipant
At Johns Hopkins we have been seeing Dr. J.F. “Jeff” Geschwind – Intervenial Radiologist and Dr. Mike Choti – Liver Surgeon, he is still on our case even though they have ruled out surgery for my husband.
ColleenNovember 5, 2007 at 4:10 pm #17658jeffgMember
Michele…. Dr. David M. Nagorney, Gastroenterologic and General Surgery. He is also the Professor of Surgery for the Mayo Medical School in Minnesota. He performed my surgery in in March,1999. All other doctors Lungs specialist,oncologist, Radiologic oncologist have been been a few as I’ve traveled and had care at local hospitals and centers in North Dakota,Maine,and Kansas. The surgeon at Mayo is the one who made the biggest difference surgically. All others followed standard protocals of chemo treatments. I strongly believe my attitutde and a few things I do for relaxation and visualization have helped greatly with prolonging my life. I’m no where close to any cure. Iv’e noticed many little down hill trends in my health as days go by. It’s falls back to the individuals. They are different our bodies are different and the way we deal with our disease psyhcologically is different. Some of us don’t get a chance to practice and then, some like my self slowly decline while trying everything. will I/we succeed? I don’t know. I have tried almost everything from A-Z according to my current condition. The fact that I am still walking around and driving around is a miracle in it’s self if you were to look at my Medical records. Main thing is a good surgeon and the area of resectability with clean margins, After that it’s trying something new, also knowing when to say hey doc, that’s enough of that chemo. Don’t be afraid of some radiation treatments on areas that tumor activity appears. Ask for bone scan if you think for a second it’s mets to th bones. I’m currently recieving no treatment. I just take some pain relief meds as needed and a homemade concoction of over the counter herbs and spices all combined together in equal parts. One heaping teaspoon in 8oz glass of water everyother day. I got the list of herbs and spices from the site link I posted here in the website section. I did make contact with an Oncologist from Mayo about maybe doing a comparison of blood and tissues of me and someone else who’s disease is moving more quickly and see if some type of difference between the two could lead to something worth trying but that was a year ago and he knows how to contact me if he wants to pursue it. I was under the impression he was quite interested but I guess not. Maybe it has something to do with me wanting them to pay for a second hospital bill from having a staph infection of my gallbladder resection site. I gave that up as I could not be bothered at the time. I have rambled enough. God Bless,
Jeff G.November 5, 2007 at 12:30 pm #17657peterMember
The Lahey Clinic in Burlington MA outside of Boston is fortunate to have two Doctors with a great deal of CC excperience.
Dr Roger Jenkins (781) 744-2500
is a surgeon there who has helped many CC patients and
Dr Keith Stuart , (781) 744-8400
is an oncologist who has worked with many of Dr Jenkins patients as well as others with Cholangiocarcinoma.
-PeterNovember 5, 2007 at 1:39 am #17656carol58Participant
Dr. Hanna Sanoff is a wonderful oncologist at UNC Hospital in Chapel Hill, NC. She is very smart, personable and took all the time we wanted to answer lots of questions our regular oncologist in Winston-Salem didn’t know. She presented Charlie’s case to the tumor board there and Dr. Benjamin Calvo is the surgeon who will be performing Charlie’s resection this week. Hope this helps.
CarolNovember 5, 2007 at 1:19 am #17655scragotsMember
My outstanding liver specialist/surgical oncologist can be found at IU Medical Center in Indianapolis. It is a world renowned teaching hospital offiliated with Indiana University. Her name is Mary Maluccio. You can get her info off of the IU Med Center website. She’s funny, caring and smart as a whip. Of course, you would have to travel to Indy, but I am sure she s available to check over cases from out of state. This woman saved my life. It’s hard to find a doc who will give you all the time you need. She reads my scans immediately afterwards so there is no “waiting on the results”. She has even met me at a DIFFERENT hospital when my scan had to be moved. She may be one in a million.
SueNovember 5, 2007 at 12:54 am #839micheleParticipant
I would appreciate geting some names of doctors, hospitals etc where people have had treatment, For instance, Jeff G, you seem to have had a lot of treatments and you give hope and great information to many of us who are dealing with CC. Would you share your names of doctors, and or treatments centers, as well as any others who have been at this for a longer time? My husband’s doctor is Dr John Marshall a GI oncologist and head of the Lombardi Canger Center at Georgetown University Hospital. We have great faith in him and his experience. But we would appreciate knowing of others, surgeons, radiologists, and especially any experts on CC.
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