- This topic has 16 replies, 14 voices, and was last updated 15 years ago by DianeC.
September 22, 2008 at 1:47 am #22404DianeCGuest
Dear Jan — I’m very excited for you and your husband! We met with Dr. Gores at Mayo in 2006. Although my husband turned out not to be a candidate, the experience was so worthwhile. Dr. Gores is outstanding, and the Mayo Clinic is exceptionally well run.
Bless you !
DianeSeptember 22, 2008 at 12:51 am #22403darlaSpectator
Sorry we all have to meet this way, but you are among friends. We all have been where you are now. Good luck to you both on your journey. You will find a lot of support & knowledge here. You are in my thoughts & prayers.
DarlaSeptember 21, 2008 at 8:42 pm #22402paulineMember
Good luck to you and your husband Jan. The Mayo transplant protocol is without doubt the very best chance for someone with this disease. My husband, Anthony, and I were prepared to sell our house here in the UK to fund the treatment there if he had been eligible. Unfortunately, he wasn’t for various reasons. Dr Gores was excellent when we contacted him too. I really hope your husband stays on the list and gets the transplant. Fingers crossed!
London UKSeptember 21, 2008 at 8:04 am #22401iris-aMember
I like to wish you and your husband very good and hopeful weeks to come. It will be tough on you, but since there seem to be chances ….. go for it!
Iris.September 20, 2008 at 11:52 pm #22400newfjamSpectator
Hello you wonderful people!! Wanted to update on the Mayo visit. It is truly an amazing place. After 8 days of testing we are back at home before we return in a week. They are going to place my husband on the transplant protocol. While at the Mayo Clinic they were able to place stents in both ducts (here in Atlanta only able to get one stent in). When we return he will start on chemo and radiation for 3 weeks. There is a “dim” spot in the liver that showed up on PET scan, but they are not sure if this is an abscess or perhaps mets. They will watch this spot – if it grows they assume mets and he will be off transplant list – if it resolves or stays the same we will go forward. The good news is that there is no lymph node involvement. Is there anyone on the boards that has had transplant?
I know this is going to be a long journey. Thank you all for being here.
JanSeptember 12, 2008 at 9:05 pm #22389iris-aMember
Even on the other side of the ocean we are thinking of you and your husband. All the best, Iris.September 12, 2008 at 5:14 pm #22390swartyMember
I can tell you that the Mayo Clinic is wonderful! After the news of my Dads CC diagonosis on 8/8/2008 we met with the local doctors after a CT Scan, ERCP and PTC. They said “Surgery was not possible.” I e-mailed Dr. Gregory Gores and told him of what we had been through and 12 minutes later he responded. We were at Mayo 2 days later and met with Dr.Gores that day. Dad went through a number of tests over the next 3 days. Dr. Nagorney is still there and attempted a liver resection 1 week later but was unable to complete it as the tumors had spread farther than they thought. My point is this, the Mayo Clinic has been wonderful, Dr. Gores is amazing as is Dr. Nagorney. The hotel across from the clinic is the Kahler Inn and Suites. One piece of advice, ASK ALOT OF QUESTIONS !! I wish you and your husband the best, you will be in great hands.September 6, 2008 at 11:18 pm #22399jeffgMember
Hi Jan….. Mayo Clinic ,Rochester, MN Is where my twisting and bumpy road bgan, 9 1/2 years ago. My Doctor was Dr. Norgorney. He is still there. I’m not sure. I’ll have to double check but Dr. Gore was doing his internship and assited with my surgery. It sounds so familiar. Wish you and your Husband the best! With alot of intervention and God’s Will, I’m still fighting the battle but would not have had it any other way.
Bless ya Both!
Jeff G.September 6, 2008 at 10:44 pm #22398heatherkpMember
Hey Jan! Wow! It seems like years ago that we were at Mayo there in Rochester…yet it was just in April. Our Dr. was Dr. Gores…We saw him after three days of VERY INTENSE testing that left Lee a mess…my suggestion to you is wherever you are staying….grab a wheelchair and keep it with you. We stayed right across the street at a hotel I cant remember the name of….I do remember the Caribou Coffee house! The process of going from one place to another seems absolutely overwhelming when you arrive..actually very frightening…but it really is very simple…it all goes off without a hitch it seems….be prepared for lots of waiting and walking….much of the time you will be waiting alone…so of course…a good book….munchies and beverage are a girls best friend….cell service seemed to be pretty good…when you go to the class on liver transplant education…ask ALL the questions you want EVEN IF YOU FEEL LIKE A DORK! The nurse who did our class was incredible…we had to leave the tiny room she held class in because Lee was so ill, but she would stop for a moment and help us whenever we had to get out….we felt very embarrassed, but remember….everyone there is there for the same reason…I broke down when the class started because it all just came to a head….and the wonderful nurse was right there to comfort not only me…but everyone else….it all seemed so surreal….I look back on the entire process and the only way I know we got through it was that God was right there with us every step of the way….it helped too that all of the staff of the hospital were very friendly…Let’s see…I’m trying to think of anything else….I’m sure I’ll think of things as I go….Your husband will be doing alot of fasting….but they will give you an entire schedule for every day and complete details of what to do…right down to what he should wear during testing….OH! We stayed at the Kahler Inn…most places have free transport to and from the hospital if you dont want to use their underground walking system….if you need anything or can think of anything to ask…I’ll check the sight often for you…..until then…please know that we will praying for you that you will have strength, courage and comfort through this difficult time and be sending good thoughts right your way!
HeatherSeptember 5, 2008 at 6:16 pm #22397missing-uSpectator
Jan, my thoughts and prayers are with you and your husband. I have heard many positives about the Mayo Clinic when it comes to rare cancers. There are many on this board who have been living with this illness for several years, beating the odds and are beacons of hope for those newly diagnosed. I only found this site after my Dad passed away; I am glad you found it when you did and hope that you can find much support and knowledge here.
Missing USeptember 5, 2008 at 5:58 am #22396barbSpectator
back in 2003, i paid a “firm” to research for information and treatments for intrahepatic cholangiocarcinoma. the booklet i received was very informative and Dr. Gores was very prominent in the credits.
i think, from what i’ve read, that he is one of best doctors in treating this nasty disease.
i think you are off to a good start, certainly much better than how i started.
barbSeptember 2, 2008 at 7:53 pm #22395newfjamSpectator
Suzanne, – My thoughts and prayers are with you. I will be interested to learn what Dr. Heffron has planned for you. We saw Dr Rubin at Piedmont and he made the referral to the Mayo Clinic. When we get there next week they will do additional tests, and we will have appointments with surgeons, oncologists, nutritionist and social worker. The protocol that they are using at the Mayo Clinic is combined radiation and chemo followed by liver transplant. We don’t know yet if that is the route they will take, if Andy is even candidate. Please know that you are in my thoughts as you take this journey. None of us planned for this, but it is comforting to know we don’t walk alone. JanSeptember 2, 2008 at 6:36 pm #22394suzannegmMember
Hi Jan – I’m in Atlanta area also. I was diagnosed in Mid July. I’ve been going to Emory and tomorrow I have my first oncologist visit at the Winship Cancer Institute at Emory.
I’m starting my 4th week of recovery from unsuccessful liver resection (at Emory), surgery performed by Dr. Tom Heffron. I know that if there had been any way to resect, he would have found it.
Please keep the site updated as to your husband’s progress. I am anxious to find out tomorrow what options Dr. Kauh will suggest and also get some questions answered.
Good luck to you both,
SuzanneSeptember 2, 2008 at 6:33 pm #22393marionsModerator
Jan…good wishes coming your way and we are awaiting to hear from you as soon as you are able to report back. So glad for you to have found us.September 2, 2008 at 6:11 pm #22392westsSpectator
I wish you the best. I just lost my mother to this cancer last week. The people on this site were very nice and forthcoming with information. I will keep you and your husband in my thoughts and prayers.
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