Introduction and my story
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Nathalie,
Forgot to ask this: Do you also have Primary Sclerosing Cholangitis? This can cause a lot of the dilation that you mentioned in your imaging reports and is a major risk factor for CCA. It is important to know if you have this liver disease in the setting of your treatment for CCA. I’m sure that the folks at Mayo will do a full work up on you for this. I’m very interested to hear who your Dr’s are there – I’ve seen many of them for my J-pouch and now for the liver issues. They’re all fantastic!
Rick
Nathalie,
Do you know who you are meeting with at Mayo? I just left there yesterday after consults with Dr. Lindor and Dr. Gores and I also have a mass in the cystic duct. All of my testing was done during the week: MRCP, ERCP, Endoscopic Ultrasound with biopsies, and full abdominal ultrasound. They’re waiting for the FISH staining from ERCP and will be calling me with a course of action next week. I’ll probably be heading back around Wednesday. Maybe I’ll run into you or Jamie D.
I don’t have any experience to share with you about the cystic duct involvement, but as soon as I do I will post it because it sounds like we are in a similar boat. I am hoping for transplant protocol – but not sure if that will work for this tumor location……
Best of luck to you tomorrow. You’re in a fantastic place! Oh – and also to forewarn you – there is a lot of construction on I-90/94. I live in Michigan so I take the same route you would driving and just encountered that construction. It might slow you down an hour or so total.
Rick
Oh, girls, I so hope you can meet!!! You have no idea the feeling when you meet someone from this Board! You really know then that you are not alone.
When we met Marion, in March, I was so excited, wasn’t sure I would make it without 5 stops before I got there. Then the tears when you meet and then finally to know you have found a friend who truly understands. Its awesome.Nathalie;
Just wanted to send good thoughts and prayers for your drive and appt on Monday. I hope you aren’t driving yourself!! I will be at the Mayo clinic on Monday for my chemo appt. Sorry I didn’t respond to your post earlier but I’ve not been online much this week. Family stuff going on. Let me know if you’d like to maybe meet when you’re at Mayo. I’ve gotten to know my way around there pretty well! I first went to Mayo in Oct 07 and have been getting my treatment there ever since. Take care and if there is anything I can do just let me know.
God Bless,
JamieYou ALL are sooooooooooo wonderful! You are all in my heart and my prayers! I will be leaving for the Mayo Clinic on Sunday morning, it is a 10 hour drive, minimum. No telling how many stops I will need to make, since sitting or laying too long creates a lot of pain. I asked my hubby to make me a sling that holds me up in a seated position, leaning forward and a little to the left!
God and Positive thoughts be with you all. I am so blessed to have you ALL in my life!
Hugs n Fuzziesssss
NathalieNathalie, good luck at the Mayo. My sister is being treated at duke univeristy. She would love to talk with someone your age when you know more. Please let me know if you are open to that and thanks. Her name is kathy and she would love to speak with somone–she is having the whipple surgery on august 20th and she has the diagnosis of : cancer of the ampulla vater in the early stages. So maybe you both can compare notes. Please let me know if you might want to talk on the phone–I have already spoken with Lainy and she is such a big help. My number is 757-773-5197. Thanks and God bless to you and your family. Love, heather
Nathalie, I’m not sure when you’ll be leaving for the MAYO for your biopsy on Monday…but wanted to make sure I sent you lots of good thoughts, wishes, and prayers. Keep in touch and safe travels.
Jolene
Chris that is a wonderful and inspiring story! My husband, age 77, has his 4th anniversary this month from having the Whipple. It is these success stories that keep us going. Thank you for sharing that with all of us.
Hello Heather, sorry to hear about your sister. I haven’t heard or learned anything yet. I am just now starting my journey.
Yes, I am scheduled to go the Mayo Clinic in Rochester this coming Monday! I am excited knowing that they are so well informed and on top of things.
It looks like we can learn about these things together. Is your sister going to the Mayo clinic? What have they mentioned about her treatment plan? Stage?
You are definately in the right place, here. These wonderful people here have been so extremely helpful, supportive and loving.
God Bless you, you and your sister are in my prayers… Keep me posted~
NathalieHi to all,
I only want to re-assure anyone facing this challenge that there is a light at the end of the tunnel.
I am an adult male and I had all the symptoms; weight loss, jaundice, bowel changes, itching etc. I was fortunate because my doctor picked up on those things early and sent me on to the Loma Linda VA Hospital for tests. I was diagnosed and then because of my age; 71 and with chronic COPD, it required many more tests before I had the Whipple Resection. The surgery took about ten hours and then I had four days in ICU and two weeks on the surgery ward. My surgeon stopped by my room on the day I checked out and told me that they had gotten everything in the surgery and I would not have to have chemo. I went home with two drains still installed and a feeding tube that was installed just to the left of my navel. The drains were removed after a time but I continued to use the feeding tube for a couple months. The healing was long and at time tough but fast forward to the present where I am back to normal and I am a 7 year 6 month survivor. One of a very, very few but I want everyone that is facing this ordeal to know that it can be done. I live alone and just had my 79th birthday and I feel great. The complaints I have are all caused by my age and of course the COPD is still present. My surgeon and his team were experienced in the Whipple surgery so much of the success of my story has to be directed to them and the great care I received at the Loma Linda VA Hospital in Loma Linda CA.
My doctor tells me that she thinks my success is mostly because I have a positive attitude so if there is a suggestion here it would be to stay positive and keep the stress to a minimum. I donNathalie, my sister was also just diagnosed with this at age 41. Have you found out anything else about the treatment prospects and did you say that you were going to the MAYO clinic? Please let me know and thanks. best to you, heather
Will do Lainy. Again, I thank you so very much for being here. It’s hard enough to be a caretaker, my husband is a great advocate, but having a tough time too. And, you not only take wonderful care of your husband, you take time out to care for us here!
Thank you! From the bottom of my heart! And thank all of you here on our boards helping and informing, praying and supporting everyone!
You are all ANGELS!
Hugs n Prayers,
NathalieYou are spot on about going to VERY experienced doctors for this very ghost of a cancer. Sounds like you do have a good handle on things and honestly you just have to go with the flow until you get to Mayo, where you will be in excellent hands. Please keep us updated and drop in often!
marions — thank you and I will post what I find as I go along. I am so new to all of this, I am not sure what I find would be something new. But, repeating some things aren’t so bad either.
Lainy — Oh yes dear! I didn’t mean it to come across that you couldn’t live without it. From what I can understand, yes you can live with part of your pancreas. The issues I was talking about was my report states intra/extra ductal dilations with a 3.7 x 1.7 cm area in the common duct. It reaches my pancreas with a ductal dilation of 8mm and has impressions upon my marginal region and pancreatic head.
What I had read on stents was, if stents are put in the ductal areas, it creates infamation and scar tissue. Making surgical repairs to the ducts even harder to do. I also read metal ones are even worse in creating damage. They said unless the Dr. has expertise in this disease, does at least 100 surgeries a year and is very familiar with what is involved with this surgery, do not allow them to use you as a guinea pig. They say that the tissue and organs involved in this surgery are so delicate, many patients that inexperienced Dr.’s have done testing on and inserted stents have damaged the area that were once repairable, like the pancreatic head. In other words, it was repairable, but now they have to remove it because of damage done by the inexperienced ones.
I will try to find it again and I will post the link to this site that had given me the information. It was of great help in my choices.
Hugs n Prayers~
NathalieNathalie, not sure what you mean by the head of the Pancreas being involved. Teddy had stents and no other damage occurred and then the doctor had to remove the head of the Pancreas to get to the bile duct valve. Other than detesting sweets for a few months he was fine. I always understood you could live with a part of the Pancreas and be fine.
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