October 2, 2013 at 1:33 am #76110pamelaSpectator
I just wanted to welcome you to the site and tell you that I am sorry that were diagnosed with cholangiocarcinoma. Try and keep your spirits up and never give up hope that a chemo, radiation, or something else might help. Please keep us informed on your plan. Wishing you all the best.
-PamOctober 1, 2013 at 6:23 pm #76108lisacraineSpectator
Welcome to the most amazing group of loving and supportive friends. I am a three year survivor of ICC. If you would like to talk to someone please feel free to call me. 330-903-6868.
Lisa CrainrOctober 1, 2013 at 6:07 pm #76107kris00jSpectator
Lainy knows all the tricks! Sorry you had to join our little family, but you will find tons of support and answers from so many of us.
Good luck with your PET scan and meeting with Dr. Kozloff.October 1, 2013 at 5:48 pm #76106lainySpectator
Hey Matt. A little secret for you. I also have Diabetes II and I am on Insulin. When I was having PETS I would use a few units of insulin and never had a problem with the sugars. Also do not eat after the Insulin. I know it’s cheating a tad but it worked as it was too irritating to run back and forth. Don’t tell anyone I told you this! LOL My bad!October 1, 2013 at 5:37 pm #76105pfox2100Member
Hi Matt welcome to the site. I wanted to reach out and say hello as you and I are very similar in age. I am 34. I was misdiagnosed 3 and a half years ago and was diagnosed with ICC this July. It sounds like you are on your way with starting on your journey. I wish you well on what lies ahead for you and your PET.October 1, 2013 at 5:20 pm #76104mhsanfordSpectator
They scheduled me with Dr. Mark Kozloff at the University of Chicago for next week. They had to reschedule the PET scan for tomorrow because my blood sugar was slightly high. So just more waiting.October 1, 2013 at 3:06 pm #76103pcl1029Member
May be you should ask a multidisciplinary tumor board for a complete evaluation of your situation.
Dr. Catenacci is the GI oncologist you should start with.
Daniel Catenacci, MD
Assistant Professor of Medicine
University of Chicago
900 E 57th Street Suite 7128
Chicago, IL, 60637
Phone: 773 702 7596
Fax: 773 702 9268
God bless.October 1, 2013 at 2:51 pm #76102lainySpectator
Dear Matt, welcome to our extraordinary family but sorry you had to join us. Talk about getting lost in the system!! I am happy now that at least you are on your way. Did you get stented for the Jaundice? It should have been done immediately to give you relief. Good luck on your PET today. Suggestions: Read up as much as you can as knowledge is one of our most powerful tools for CC. I am glad you are going to the U of Chicago as you want to be at a Hospital and with an ONC who has experience with CC. Please keep us updated as we truly care and we are all here for you.October 1, 2013 at 2:26 pm #8970mhsanfordSpectator
Hello. My name is Matt Sanford and I’m 35. I have done some reading on here for a couple days. This is a very informative site. I went to the hospital 2 1/2 weeks ago because I had been having vomiting and diarrhea along with being dizzy and lightheaded when I stood or bent over. I had been having non-stop problems for many months prior. I went to the ER back in May for the same problems and they checked my blood work and gave me fluids for dehydration. They said my liver function test was slightly elevated, but they didn’t do anything else. I finally went in to my regular doctor a month later for the same problems. I have been a diabetic for 13 years so he and I thought gastroparesis and he referred me to a diabetic specialist. Through many different scheduling errors by the doctors office I was referred to I still hadn’t seen the diabetic specialist by September. Getting back to 2 1/2 weeks ago my symptoms were getting worse and I was down to 1 meal a day, if I could even keep that down. I went to the ER again. They started fluids for dehydration and took my blood for blood work. My liver function test was terrible and I was jaundiced and itching severely. They did a CT scan and found a 5 cm mass on my liver. Since I went in on Saturday they couldn’t do a biopsy until that Monday. That Thursday they had the results that I had cancer, but they didn’t know what type so they had to send it to Johns Hopkins for further testing. Last Wednesday I found out it was Cholangiocarcinoma. I have my PET scan today and after that I will be scheduled for a consultation at the University of Chicago to see what the treatment options are. I’m trying to work, but it is getting harder and harder to do so. I have no energy and I am still getting dizzy and lightheaded (from my BP from sitting to standing). Looking forward to gathering helpful information and meeting you all.
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