Looking for Sue?
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Hi Jennifer,
I can’t help you with your specific questions regarding treatment, but I just want to say that I am sending you loads of positive thoughts your way. Please don’t give up hope.
My best wishes to you and your family,
Gavin
Jennifer…..I believe that Sloan would be a good place to start and as you have mentioned, the treatment options may very well be in agreement with the one offered to you by UPenn. But, you would want to make sure.
Best,
MarionI am living happily and well more than three years after I had my recurrence. The tumors are still there– they’re stuck on blood vessels, so they can’t be removed surgically– but they haven’t grown since I finished radiation treatment in December 2006.
This disease is really different in everyone. Doctors can tell you what USUALLY happens– but they can never say what WILL happen in YOUR case. There’s always hope! Please feel free to email me if you want.
Sending you my very best wishes–
Kristin
Hi Jennifer. We never went to Mayo. Teddy was in Milwaukee WI when it happened and was an emergency. We had no choice but lucked out with the surgeon as only a couple did the Whipple at the time.
Our 2 week visit turned in to 3 months as they aborted the 1st Whipple attempt due to his pancreas “wilting” from dye that hit it during the Endoscopy.
Then 2 weeks later he developed a double e-coli infection. Then they did the deed. 2 months later we were headed home to Phoenix and his 2 tubes blew out of his stomach on Midwest. Now we laugh about it. What a mess!! Got home and 2 weeks later he developed a small hole at the resection and went in to rehab for 1 month on NOTHING but an IV in hopes that starving the hole would heal it. It did and then everything went fine.
We have a Mayo here but were advised the best was in Rochester MN (the best for CC) By that time of course it was not needed. Honestly the hardest part was the worry of finding doctors once we would come home. He was the perverbial healthy Sicilian stallion! I researched and talked to a few people and made the decision. You see I practice medicine…..it’s called my gut feeling. We feel very lucky to both have a team of the best of the best doctors here in Phoenix. We share our Oncologist, Urologist and Gastro man. If I needed to I would also use his Radiation guy. 5 different docs told him from the beginning that he would never be a candidate for chemo however, he can have radiation or cyber knife. His regime is to see the ONC every other month and have LABS every month. They are keeping an eye on his 2 new little tumors. And here we are 4 1/2 years later. I call it our Cancer Dance and I say, we are doing just fine as long as we are dancing to the same tune.Sue – thank you so much for responding. I am going to read your story.
Janet, Margaret and Darla – thank you all so much for the positive energy and good thoughts. As hard as it is I am trying to stay positive.
Lainy – Teddy truly sounds like a miracle. He is lucky to have you taking such wonderful care of him. Is Teddy being treated at Mayo?
Marion – I live in Philadelphia PA and am currently being treated at UPenn. I am willing to go wherever if it would help. Sloane would be the closest for me but if I would be better off I would go somewhere else. I don’t know how much of a difference it would make – Mayo vs. Sloane? They may not do anything different than Penn is doing right now I just thought getting another opinion again wouldn’t hurt.
Jennifer
Dear Jennifer you are reading and researching and that is a good thing to start with. Sue’s is such a wonderful story and I can add my husband Teddy to that Miracle as well. We were visiting in Milwaukee and he totally jaundiced. With in about 10 days he was having his Whipple. You would not believe what he went through, not in disease but in healing. You can read about him under Lainy. And here he is 4 1/2 years later at the age of 77 going strong. Oh, it cropped up a year ago where his duodenum used to be and they zapped it with cyber knife. Now it has appeared as 2 very small tumors near a kidney and outside the liver. Nothing is being done at this point as they seem to be shrinking on their own!!! We are all dumbfounded. The Radiologist and the Oncologist believe Teddy has a certain kind of hormone that is shrinking them. Pet Scan due in March again. This wonderful site dubbed him their Miracle Man.
Remember, something new is always around the corner in some form of treatment. It helps mind and body to try to stay positive. Like I say, Attitude is everything. This is all still so new for you and it takes a little time. There are some great Center now for care but Mayo, MN. is considered one of the top.
Also Sloan Kettering and MD Anderson and a couple in California. I give thanks so many times that here we were in Milwaukee, there were only a couple of surgeons who did a Whipple, it was an emergency and Teddy was really in Gods hands. Miracles do happen!2reasons2fight:
Hello! This is Sue. I am so glad you found us, but so sad that you had to.
Here is a link to my very first post:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=608
You can also search “scragots” in the forum search to find all posts by me. Please, please ask me anything you want. I will answer any questions you have. I try to come on here every now and then to remind people that there ARE miracles, even when it comes to CC. Stay strong and stay on top of the doctors etc. Try not to dwell on the bad stuff too much (yea, right…) and know that you can ALWAYS come here for support.
You can also email me personally by clicking on “e-mail” on the left side under my name. And please do! I look forward to hearing from you.
Hugs,
SueJennifer,what a lot you have to deal with.It is so hard you must be reeling with it all.Kids complicate everything for us as we are always as mums putting their needs first,thats how it is.I am on the other side of the world so do not know about hospitals etc where you are but I am a nurse and mother so know about general sorts of things. Janet
Thank you all so much for your support and prayers. This is a whirlwind for me as I was just diagnosed in December. My head is just spinning.
Marion – thank you so much for your advice – I have been doing some research and it seems the best place is the Mayo Clinic?? I think Minnesota is what I have been reading.
Does anyone know??
Thank you all – again.
Jennifer
2reasons2fight……I am hoping for you to receive a response to your two questions soon and would like to tell you how sorry to hear of the quick recurrence of this cancer. I remember you mentioning of contacting Sloan Kettering for a possible second opinion. Dr. Abou-Alfa at Sloan is quite experienced with this cancer and he may be someone you would like to contact. In the meantime I am rooting for you and sending all my love.
Marion2reasons2fight:
Your name says it all, you have those two reasons so you stay positive for them! This type cancer can sure try to ‘take the wind out of your sails’ but stay positive! I firmly believe that attitude is everything.
Prayers are coming your way!
Go with God and KEEP KICKIN’ THAT cancer
Margaret
Hi,
I am so sorry for what you are going through. Please try to stay positive. There is always hope. To find Sue’s posts, go to the search function and type scragots in the author section.
I will be hoping for the best for you and your family.
Love & Hugs,
DarlaHi all – I am new to the site – I have only posted a few times. I really enjoy reading everyone’s experiences and I look for a glimmer of hope in everyone’s stories. I had large tumor in my bile duct which was removed by by Whipple on 12/28/09. They believed the cancer was “gone” because nothing showed on any scans. I started my chemo last week and went for my 2nd treatment yesterday. However I had an MRI on Friday which showed tumors now in my liver. They are now not planning radiation and have me on the gemzar and tarceva – seeing how I respond and if the tumors shrink. The wind has totally been taken out of my sails. I was looking for 2 things – the first was anyone’s opinion on this treatment plan – has anyone had a similar situation? The 2nd thing I was looking for was to hear Sue’s story – I didn’t know what her situation was but I was really inspired by her update on the “Good News” board. I know she has been cancer free for 3 years. I am looking for some good news and inspiring stories. I am trying to stay positive and hope I can beat this evil, evil disease for my 2 small children and husband but it is getting hard. Looking for some light here – please help
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