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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 5
My treatment center in Tampa, FL, is H. Lee Moffitt Cancer Center & Research Institute (aka Moffitt).
My surgeon is Mokenge (Mo) Malafa, Division Chief, Gastrointestinal Malignancies
My oncologist is Jonathan Strosberg
My radiologists are Sarah Hoffe and Michael Yu
Elizabeth, you're lucky to have found this site so early after your diagnosis and resection. It took me 2-1/2 years to find it. My procedure was very similar to yours so to a large degree, I know what you've been through and possibly what's ahead for you. My surgeon warned me not spend time on the internet researching cc because most of what you read isn't good. Other cancers have their support groups and websites, but our type is so rare, very few have heard of it. However, I've found this site extremely helpful by providing such positive support and information. I also told my surgeon about this site in hopes he'll share with other patients so they, too, will know they're not alone in this battle.
Please know you're not alone on this journey. I look forward to reading more about your successful venture into the world of cc. God bless.
My PET & CT scan results today indicated my cc lymph node tumor, which is outside my aorta off the left kidney, shrank and that the tumor isn't as "hot" as previous scans in Nov. 2008 and April 2009 (Y E A H !!!!!!!!).
After my recurrence diagnosis in November 2008 (initially deemed inoperable), I received Gemzar & 5-FU with Nulasta booster during the winter followed by a one-week round of radiation. April scan results showed minor shrinkage with a "wait and see" diagnosis (no further treatments ordered). Today, my surgeon said that I must have a "direct link above" for such positive results since that was the only explanation for the continued shrinkage. That's the most likely answer since I do have a vast support network of family, friends and faithul believers. They're my soft place to land.
Thanks for sharing in my good news. This website gives me a forum where people truly do understand the challenges of this disease and faith that a cure is forthcoming.
Never give up hope and never give up fighting.
I've spent the past hour or so familiarizing myself with the posts on this site. I've begun to understand the magnitude of this rare little disease, and was shocked to learn this was Walter Peyton's cancer -- who knew?
Although I've had several surgeries (3) and rediagnoses, I will conquer this critter. On 7/30/09 I will learn the results of my latest PET/CT scans & blood work to see if the tiny malignant lymph node outside my aorta has grown or stagnated. Moffitt Cancer Center's GI tumor board will discuss my scans to determine my next course of action. Dr. Mo Malafa is my GI surgeon and Dr. Jonathan Strosberg is my oncologist; both are in the GI clinic at H. Lee Moffitt Cancer Center & Research Institute in Tampa, FL.
Gemzar and 5-FU, which were well tolerated, had little effect on my tumors. Radiation was more effective, but didn't obliterate the little rascal. Possibly the chemo kept it from spreading. This site has provided some treatment options for discussion with my doctors.
Thanks to all who take the time to give hope and guidance to those of us living with this disease. I especially like all the positive phrases emphasizing good attitudes and outlooks.
I've dealt with cholangiocarcinoma for over 2.5 years and have been unable to find much on the web except some pretty scary info. This site seems to be tailored to people who are actively dealing with our specific type of cancer. I am relieved.
Posts found: 5
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