jhagopian
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Dina I am back on My doctor was dr. schulick at hopkins who was great. unfortunately he is leaving hopkins so I am now searching for a doctor. I heard that Dr. Chodo was one of rthe best surgeons at H0opkin. I AM DOING WEE
JUDYHi Dina- ihavs tried to send you 2 emails but they were never delivered so I will make this short. I had surgery for cc Dec 9 2009. the surgery went well. However I did have some memory problems and lost about a week. I recovered and then wemt to hav Gwnxyme for 6
weeks I am doing great-A lo of friends formed a telephone tree and brought us food. I’ll be thinking og you
judyI am sorry that you are going through this difficult time. I am so glad that your tumors are shrinking. I am age 69 and was diagnosed with CC in September 2009. I hope that the longer we live, there might be a new drug down the pipe line. I worked at the National Cancer Institute/NIH in Bethesda for 6 years as a pediatric oncology social worker. I saw incredible positive results of the research done on various cancers including new drugs. When I first arrived at NCI the researchers were not able to get leukemia under control. By the time I left leukemia had become a chronic condition. The same is true for other cancers.
I wanted to share with you that my sister died at age 46. Dana Farber in Boston thought that her diagnosis was cholangiocarcinoma but the death certificate said probable cause pancreatic cancer I never had a discussion with this doctor after she died so am not certain of her exact diagnosis but am suspicious that it could have been CC. I haven’t done any thing to find out if there is a genetic component. If there are any registries around I’d like to be included in one especially to see if there are any other siblings with the same cancers. I am currently being followed at Johns Hopkins.
I wish you well and know that I am thinking of you.
Fondly
Judy
Dear
Srengle
I’m sorry that you and your husband are having to go through this.I will never forget when I was told my diagnosis of cc and all of the physical and emotional adjustments that I, my family and friends had to make. I am 26 months since my diagnosis with cc with no evidence of recurrent disease. I try to take it one day at a time or one MRI at a time. keeping my fingers crossed. Toward the end of chemo and for a number of months after I was really fatigued. I just had to pace myself as one step at a time. I had more and more energy and am now back to normal I have not had the same symptoms but hopefully they will resolve. I’m so glad that you were able to access this group.
How blessed your husband is to have such a caring spouse. My husband was unbelievable during that time and I only wish that I could have lifted his burden. Make sure to take care of yourself.Lainy,
After surgery I was treated with for 6 months with genzyme. I am a young 69 year old and until cc have been in excellent health.I had my surgery at Johns Hopkins but am being followed by the same surgeon and locally by an oncologist. I’d like to find an oncologist at a center that has experience with
cc. The one whom I met at Hopkins was obnoxious, told me that I didnt have cc(this was after my surgery. Any way, after he finally spoke to my surgeon he changed the diagnosis back to cc. i refuse to return to him so I am still in need of an oncologist or center up to date in cc.
any ideas? I am not sure why I am having both a scan and mri-I will make a point to ask at next visit. thanks so much for your help.Hi,
I am a 68 year old woman diagnosed with cholangiocarcinoma October 2009 and received a resection of the right lobe of my liver at Johns Hopkins. The tumor was very large but had not spread to the lymph nodes and was not detectable anywhere else. The margins were deemed clear. There was some question of the pathology being unclear but it was decided to go with cholangiocarcinoma. I received 6 months of gencime and so far all my markers are normal. I received treatment from a local oncologist. Except for the cancer, my health has been excellent.
As an aside my sister died at age 46 over 20 years ago of either pancreatic cancer or cholangiocarcinoma (diagnosis unclear). I am concerned that my young adult children could inherit this disease.
I had a bad experience at Hopkins with an oncologist who told me that I had pancreatic cancer and had obviously not read my reports or talked to the surgeon or pathologist. He rescinded his diagnosis after doing his homework. Needless to say I don’t have any faith in that particular individual. I do not feel like I am receiving really straight answers and am looking for someone to be absolutely honest and clear with me.
I thank you for your suggestions of cancer centers but am also looking for the name of a specific oncologist at each of the sites mentioned especially at Sloan Kettering which would be the most convenient given that I live in the DC/ Maryland area.
I feel blessed to have found this group and hope that I can also be of help to any of you once I get my feet on the ground.
Judy
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