Topic: Hello, new member!!

Hello my husband was diagnosed with cholangiocarcinoma in November of 2012. He has undergone two regimens of chemo gemzar and cisplatin and then gemzar and xylota. We got to MD Anderson in April. Before that they the local surgeon said it was inoperable well MD Anderson says it is!! Surgery is set for Aug 20th. He has had a lot of difficulty with the stents....infection after infection. The stents have been replaced 4 times now. My husband is 45 years old....this isn't supposed to happen to young people we thought. So I would love to here your experiences are the similar to my husbands?? His tumor was rather large 8cm but it is local...should we be excited that they are going to do surgery or is their still a high possibility it will come back? I know lots and lots of questions. This ride has been a roller coaster ride for us hmm

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: Hello, new member!!

Dear Heather,

Welcome to the forum although I wish you had not needed to come here.  There will be others along soon to help answer your questions but surgery being possible is what you want to hear.  There is always someone that can answer a question here - it is a pretty amazing place to be honest.

Infection and stents are fairly common but with the right treatment can be dealt with.

I too thought it didnt happen to young people but sadly it seems the numbers Re creeping up.

Clare

In the stars now . . . .

Re: Hello, new member!!

Dear Heather, welcome to our extraordinary family but sorry you had to join us. Be grateful, very grateful that MDA has a date set for Surgery. Surgery is really the ONLY cure. we love the word, Surgery! Can it come back? We hope not but there are no guarantees with any Cancer. At least he is going to have the best chance there is. Knowledge is one of our best tools in fighting CC and I would suggest that when you have time to spare use it to research and to read up some of our past posts. We also have a search button at the top and just type in any word and a ton of posts will appear on that subject. Is he having a Whipple? If not what kind of surgery are they doing? Who is the ONC at MDA?
Yes, this is the roller coaster ride that no one wants to buy a ticket for!
Attitude is extremely important and will get you both far. Please keep us updated as we truly care. You will see what a cheering section you have here on August 20th!

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: Hello, new member!!

Heather...I would like to follow Clarem and Lainy and welcome you to our site.  As has been mentioned, this disease strikes without any warning and symptoms often are related to other illnesses. The absolute good news is that the tumor is local and no visible disease metastases have been found.  If possible, your husband may want to stay active (as much as possible) eat well and build up his strength for the upcoming surgery.  Please continue to reach out to us.  We are here to support you and answer questions of any kind.  I am glad that you have found us; we are in this together.
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: Hello, new member!!

Thank yall so much!! I should have reached out sooner! Gordon is having a liver resection and vein resection?? Not sure if im saying that right. It will be an eight hour surgery!! His surgeon at MDA is Dr. Vauthey! He got a hug from me because I had said whoever gives us good news about surgery will get a hug!!! He gladly accepted! And Dr. Javle is the medical oncologist. Amazing drs, it is worth the trip to Houston! I don't want to give false hope to anyone but I didn't even think they could do anything if the portal vein has cancer. They will remove 50% of his liver.

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: Hello, new member!!

Thanks for the information, Heather, and I might add you are not only at a great Hospital you are with some great Docs. We are already getting so excited with you. Who ever thought people would get so excited to have surgery! Please stay in touch.

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: Hello, new member!!

Heather...you and your husband are in great hands.  I too believe in hugs- we can never give or receive enough hugs.   
I have learned that isolated involvement of the portal vein makes the operation more difficult and in most cases is not achieveable, but if there are then those instances where a "very" qualified surgeon is able to reconstruct this vein.  Your husband is very fortunate.
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: Hello, new member!!

Welcome Heather..
my husband has ICC as well--he's 44 and has never been sick a day in life
besides having a cold (or two).

His has gone to lymph nodes (two-local) and lungs so he is NOT
a candidate for surgery.  (He's Stage 4).

BUT he's a fighter and has responded well to the Gem/Cis chemo
regimen so far...

Best wishes with all that lies (lays?) ahead....

Dorien

Re: Hello, new member!!

also the fact that surgery is even an OPTION for you guys?

HUGE and wonderful!  very very good news!

Re: Hello, new member!!

Yes there is also another dr that will help with the portal vein reconstruction and they said they only reason this surgery can be done is because My husband has a unique anatomy compared to the general public! Crazy right!! Total God thing! We have people praying for Gordon all over the world!!

I am realistic and understand what can happen though so I totally appreciate your honesty and want  everyone to keep it coming!!!
 
Heather

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: Hello, new member!!

Heather, I call that being realistically optimistic! You can now add our Board which has Members from all over the world as well. I can see the surgery room now, there will be so many of us in spirit the Surgeons may ask us to leave!

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: Hello, new member!!

Hi Heather,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your husband. But I am glad that you've joined us all as you're in the best place for support and help and you can expect a lot of both from everyone here.

Not much I can add to what has already been said to you but I wanted to welcome you here. Your husband is in good hands at MDA and yes, if I was in your shoes I would be excited that surgery is going to happen as for so many, my dad included surgery is not an option.

My fingers are crossed that the surgery goes well and please keep us updated on how everything goes. If we can help in any way then please just ask and we'll do what we can. We are all here for you and we care.

My best wishes to you and your husband,

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: Hello, new member!!

Hello Heather,
My wife Dawn was 47 when she was diagnosed with CC. That diagnosis was done in November of 2005. She was able to have surgery and is cancer free today. I wish you and your husband all the best in this difficult journey.
God Bless,
Richard

Re: Hello, new member!!

Hi Evan, so good to see your smiling face again! Better yet it's wonderful to hear how well your wife is doing. This gives others such hope!

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: Hello, new member!!

I agree with Lainy, Evan.  Your wife has become a poster child for this disease and her story brings hope to many. 
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: Hello, new member!!

Wow Evan that is amazing!! Well as I type this Gordon is in the er. Not sure what is wrong. He had an ercp two weeks ago.  Ugh!!! So frustrating. He has been in and out of the hospital since he was diagnosed.

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: Hello, new member!!

Heather, what was going on with Gordon that he had to go to ER. High Temperature? Pain?

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: Hello, new member!!

Heather, please stay in touch.
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: Hello, new member!!

Heather
Welcome to our wonderful family of loving and supportive people. I am 49 and I have had two liver resections. If you have any questions or want to talk please feel free to call me at 330-903-6868.
Hugs
Lisa

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: Hello, new member!!

His stents are infected. He's had discomfort but his fever has been like 99. So crazy. His blood pressure was really low so they are watching him very close. He will be admitted and then they will have a plan to get him to md Anderson tomorrow. Not sure if I'm driving him or he will be transported.

Lisa I may be calling you soon....how are you doing now?

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: Hello, new member!!

Heather,

Unfortunately infections are very common with this cancer and they are something that definitely you need to keep an eye out for. A spike in temperature is a good sign of an infection and you so did the right thing in getting Gordon to the ER. Meds should help clear that up and they will certainly get to grips with this at MDA. I hope that it goes well there and please let us know how things go.

My best to you both,

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: Hello, new member!!

Heather.....oh these stents - can't do without it, but problems do arise. Hopefully things will be sorted out at MD Anderson. Be safe and 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: Hello, new member!!

Hi Heather,
It  sounds like your husband and I were diagnosed at the same time. I was hospitalized in September with jaundice and was diagnosed in November as inoperable. The tumour spread to the liver and pancreas. Cheemo and or radiation were not recommended due to my severe weight loss of 50 pounds or more. I am 49 years old and have 3 grown children. No we are not supposed to get this type of cancer. I will say I am doing very well. I am not gaining any weight but I am maintaining my weight. I feel good. I have been travelling throughout Canada to visit family and this Sunday am going on a road trip from Nova scotia to Bangor Maine on a shopping trip with friends. I live every day to the fullest and most days feel very well. Even on what some would call bad days I am just tired so I rest, watch movies and regain my energy! I hope things continue to go well for your husband be very grateful that surgery is an option for him. I have been lucky I have had no problems (knock on wood) with my stent. I had a permanent one put in in December and have had no issues as of yet. Good luck!

Re: Hello, new member!!

Gordon is doing ok...morphine every 3 hrs. A lot of IV antibiotics. Md Anderson called me and if they have to do a drain that comes out of the skin then it needs to be done there if he just needs stents replaced that can be done here. Hope we don't have to go but will do whatever they say. md Anderson is like a security blanket for us!! All were doing at the hospital right now is hurry up and wait.

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: Hello, new member!!

Bonnie,
I have been reading up on your journey!! You amaze me!! I'm so glad your doing well and you can enjoy the things u like to do!! I'm going to have my husband read your post in fact I'm trying to get him on here!! What inspiration!!!

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!