mlepp0416
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Dmeek:
Welcome to the site! Wow, 6 years! I only wish that after my husband Tom’s left resection of his liver that the VA had given him Chemo. Then maybe we’d be looking at 6 years! Knowing what I know now, I highly advise that after a resection one SHOULD have Chemo!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My Husband and Cholangiocarcinoma)
Rick:
The yellowing of the eyes, skin and the darker urine is possibly due to a blockage in the bile duct. This is what my husband Tom experienced and a CTScan revealed a reoccurance of a tumor after a successful resection of the liver. Jaundice is never a good sign. If you have a liver stent it could also mean that the stent is plugged and may be time for a stent exchange. Call your doctor asap.
Go with God and KEEP KICKIN’ THAT cancer
MargaretMatilda:
So sorry to hear of your loss. Your dad is still with you in your mind and your heart. Please read the post “Hello from Heaven” that I posted yesterday. It’s a wonderful poem, words of hope and comfort in time of loss. It was given to us by the funeral home when my husband’s sister passed a few weeks ago. I thought the it was fitting to post on this site.Never forget the wonderful times you had with your dad during his life. Those memories will always be with you.
Go with God.
Margaret
Dianne:
With my husband Tom when he experiences the chills and when he is running a temp, our instructions are to present to the ER right away as that is generally a sign of an infection. The last time he had a tube exchange (he has an external drain for bile, internal stent not possible) he started getting chills and a fever and he ended up in the hospital for 4 days with a severe infection. He was so weak that he could not even walk….It’s a good thing that you took him in! Never wait because an infection can be fatal.
Go with God and KEEP KICKIN’ THAT cancer
Margaret (My husband and cholangiocarcinoma)
Emily’s Stepmom:
My heart goes out to Emily and to your family. No one ever wants to experience the journey that this cancer takes one on. Emily is very lucky to have you as her Step-Mom and I know that you and her father will be there to help her deal with everything that her mother is going through.
It sounds like Michelle is doing the right things by getting second opinoins. I am by no means a health professional, but even with my husband Tom, we got second opinoins. Tom was given a 6 month prognosis and was told by his oncologist that radiation and chemo would not help. We fired that oncologist and got 2nd and 3rd opinoins. After Radiation and chemo, his tumor is dead (but still blocking the bile duct) so he had an external drain to drain off the bile that was causing his jaundice.
I am adding Michelle to my prayer list and hope that for Emily’s sake she continues to fight and keeps a positive attitude. No one has an expiration date stamped on their butt.
You tell Michelle that she has everyone on this site pulling for her!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Exercise in moderation is VERY important, else the muscles waste away as is the case with my husband Tom. He now has to start walking and he also lifts weights (only 2 lbs) to begin with to try to build up his muscles. I only wish that someone had told us that to begin with, however with that being said, he was in so much pain for two months with a kidney stone that he was incapable of doing anything let alone any excercise or walking. So for those of you who CAN exercise, it IS a good thing to be doing as much as you are able!
Margaret
Mimi:
My thoughts and prayers are with you. So sorry to hear of your Grandmothers passing. Hold her memory close to your heart. I’m so glad that you were able to spend time with her and have wonderful memories of your extraordinary grandmother.
Go with God…
Margaret
KentuckyJack: AWESOME words!!! I’m right up there with you on this one on behalf of my husband Tom who is fighting this evil-wicked-bad-and-nasty cancer.
Go with God and KEEP KICKIN’ THAT cancer
Margaret
My thoughts and prayers are with you and your family in your time of loss. Words cannot express…..
Go with God and hold your brother near to your heart in your memories.
Margaret and Tom
Hi Bob:
Welcome and so sorry that you have to be here. I will keep your father in my prayers. If you have read the posts on this site, you will find that there are many different paths, twists and turns with this type of cancer. My husband Tom was diagnosed in Mar ’08 and is continuing to fight the battle. He was given a 6 month prognosis in December ’09. That 6 month mark is fast approaching, but he has undergone radiation and is currently on chemo and we are hoping to beat the 6 months.Depending on where the tumor is means a lot. In Tom’s first occurance the tumor was in the left lobe of the liver, about 2cm above where the common bile ducts splits to go into the left lobe – therefore he was able to undergo a left hepatoctomy (sp?) or a liver resection, meaning that they were able to remove the left lobe of the liver. That was done in June ’08.
With his reoccurance of a new tumor, the tumor is in the main bile duct (above the common bile duct) and it involves the arterty that feeds the liver, therefore it is inoperable. (the luck of the draw eh?) Based upon the location, his only option was radiation and chemo. Right now, the tumor is dead (or dying) and his main problem is that the tumor is still blocking the duct and he has an external drain to draw off the excess bile so that his color is not as yellow.
We are currently waiting to get the remainder of his cholangiograms and Ercp films to arrive at Mayo so the Interventional Radiologist can decide if he can possibly get the internal stent placed based on those pictures. We should know for certain if they will attempt in again within the next few weeks.
My advice is to read all you can on this disease and write down all your questions, no question is a dumb question. In fact, while we were at Mayo, Tom’s liver specialist asked me if I were a doctor based on the questions I was asking. He was surprised that I was so knowledgable about what has been done to Tom, what proceduces he has had done, etc. (It pays to pay attention!)
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Thanks Lainy and Gavin. We are giving it one more shot it Dr. Edwards feels he has a chance after he sees the films. Just a case in point, when going for a second opinoin, make sure that when you request information to be sent to another doctor, have them include pictures, films and basically everything from any and all ERCP’s and Cholangiograms as well as CTScans and MRI’s because there may be something that the new doctor can learn from seeing EVERYTHING!!!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
All: Dr. James Edwards, interventional radiologist from Mayo tried to get the internal stent in and it was once again a no go…But the doc wants to get his films from his pre tumor ERCP so that he can ‘map’ the bile ducts and then he feels that ‘maybe’ he can be successful. Doc Edwards was very excited that Tom had at least one ERCP ‘pre new tumor’ so he now can get a ‘road map’ of his bile duct where the tumor is….
However, the Liver Specialist, Dr. Dunn pretty much tried to talk Tom out of trying any more. His words, “Your quality of life is pretty good, so why mess with it”
On the six hour drive home we discussed it at length with Tom’s son and one of our good friends….and the end result is that we are having the requested information sent to Dr. Edwards and if he thinks he may be able to get the stent in we will give it one last shot….more to come as we know more.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Donna:
So sorry to hear that news, but if I were you I would seek a second opinoin. Find a doctor that has had experience with CC or have his records sent to Mayo Clinic.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My Husband and Cholangiocarcinoma)
