Topic: New to the Group

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.

Re: New to the Group

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by PCL1029 Tue, 08 Oct 2013 07:09:44)

Re: New to the Group

Hi,
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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New to the Group

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.

Re: New to the Group

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.

Hope, love, strength...2013 and for the years to come, Porter.

Re: New to the Group

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: New to the Group

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.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New to the Group

Matt,
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 Crainr

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: New to the Group

Hi Matt,

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.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New to the Group

Matt, Welcome and sorry you had to find us. I am a CC survivor, 4 years cancer free. I was lucky to have been able to qualify for a liver transplant. I have an a amazing story to share and I keep it posted at www.catherinedunnagan.com under the telegraph link. There is HOPE
This is a very rare and misdiagnosed cancer, so you need the most knowledgeable and aggressive doctors. My miracle worker/hero was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO.
Like Lisa said feel free to call (618-567-3247l or email any time.
Lots of prayers and HOPE-Cathy

Re: New to the Group

Thanks everyone for the welcome and tips. The blood sugar is doing ok so far. I'll check it before I go to bed and see if I need a little.

Matt

Re: New to the Group

Matt....please keep us posted.
Hugs,
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: New to the Group

Hi Matt,

Welcome to the site. Sorry that you had to find us all here but glad that you've joined as you are so in the best place for support and help and you'll get loads of both from everyone here. Hoping that your PET and meeting with the Docs in Chicago goes well and you will learn more about your options then. Please let us know how that goes and what they recommend as to further treatent options. Keep coming back here as you are not alone in this now. We are here for you and we care.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New to the Group

Hello Matt,

Welcome to the site that no one wants to have to join, but where you will find the most special, supportive, and informative people. 

I wish you great good luck on your upcoming PET scan.  Please update us when you can.

Best wishes,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New to the Group

Hey Matt, like everyone said, sorry you had to find this site. I'm 42, was diagnosed after the resection surgery officially, but am 2 years cancer free as of 9/14/13. This web site is great and very informative. All of the moderators have a ton of insight and if you have a question, just post it and you'll get a helpful response.

Best of luck with your scans and in getting a game plan together. The game plan is probably the most important thing, knowing that you're doing something instead of just the waiting. Keep us updated!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: New to the Group

Hello, this is Matthew's wife Stephanie. I just found this website on Matt's computer today. I wanted to let you all know that Matt lost his battle with cholngiocarcinoma November 5th, 2013. He passed away at the University of Chicago two days before his 36th birthday. They did remove 60% of his liver but it didn't look good when the doctor opened Matt up. The doctor said that Matt's liver was green. Matt did well the first week after surgery and even was able to be off of the vent for several hours, but then had to be placed back on it later in the day because he was having trouble breathing. The second week after surgery things were not going well at all. He was retaining too much fluid and his liver was barely functioning. Toward the end of the week his kidneys stopped working, he had an episode that caused his heart to be damaged. The kidney machine did not help him because his blood was clotting too much. His oxygen level went down and his BP did the same. My father-in-law and I had to make one of the most hardest decisions of our lives. We said goodbye to Matt at midnight. He fought so hard, but God needed to taken him home and heal him there. I miss him so very much. I'm surprised that I'm not crying as I write this, but that too comes and goes. I just want everyone to know that he did appreciate your kind words and suggestions! He was very happy when he found this website! I hope all of you take care and get well soon! Keep fighting no matter how hard the battle is God will get you through it! Peace.

Stephanie D. Sanford

Re: New to the Group

Oh, Stephanie, I am so sorry. My thoughts are with you. I know it's not much, but at least he is now cancer free. And he will be with you always.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New to the Group

Dear Stephanie,

Thank you for letting us know that Matt passed away.  I am so sorry for your loss.  You have my deepest sympathy and understanding.  Losing a loved one to this disease, so quickly, is hard to understand and deal with.  Especially someone so young.  Try to take some comfort in knowing that at least for him it is a blessing that it went quickly and he is now in a better place, no longer suffering or in pain.  Keep him with you forever in your heart and memories. 

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: New to the Group

Dear Stephanie,

I am so sorry to hear of Matt's passing. Thanks for letting us know about that and my condolences to you. I wish there was something that I could say that would help right now but please know that my thoughts are with you and your family.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New to the Group

Thank you for your kind words and thoughts! I'm truly grateful!

Re: New to the Group

Stephanie....so very sorry to hear that another young person had to succumb to this cancer.  My heart is with you in this difficult time.
Hugs and love,
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: New to the Group

Stephanie,

I was so sorry to read your post about Matt, but thank you for updating us.  Sounds like Matt fought a good fight. My sincere condolences.

Please come back here when you need support. Many here on this site have unfortunately been in your shoes. 

My thoughts are with you and your family.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New to the Group

Oh my gosh, Stephanie, I'm so sorry. Even though I saw my own husband fade before my eyes in two months' time last fall, it is still so shocking to me to hear when others also pass so quickly from this disease.

As someone who is only about six months into being a widow myself, I offer you my deepest sympathy.

I'm glad you've found this community of fellow travelers. I've learned so much here about the disease my husband died from and it's helped me to understand what our family, particularly my husband, went through.

I suspect you take comfort from knowing Matt found this site and was making use of it. I hope you'll find this family of supporters will also be a comfort and a help for you too.

Again, I'm sorry. May the caring of others help you find some respite from the sorrow and pain of your husband's passing.
Margaret

Re: New to the Group

Stephanie,  I'm so very sorry to hear about your husband's death.  My heart goes out to you.

Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.