debnorcal

Megan,

Welcome to our group. I’m sorry that you have reason to be here, but am also very impressed with how quickly you have gotten on top of understanding the scope of this
Disease and moved on to appropriate treatment. Your husband is lucky to have you advocating for him. We are here for you both, to guide, support, encourage – whatever you need. Please keep us posted on your husband’s progress.

Debbie

Tim and Julie,

Wow, your son has been through a lot! I agree with Lainey – you did the right thing by staying calm and finding the best treatment (I’m sure not easy when your young son is involved). I am so thankful that he has been responding so well to the treatments! I’m praying for a full recovery for him!

Please keep us posted on his progress.

Debbie

Lainy, so glad it was quick and easy and you’re feeling well!

Dear Alicea,

Welcome to our group of knowledgeable and caring patients, caregivers and friends. I am so sorry that your grandmother is dealing with cc. I know that this is a very scary time for you, but you will get through it, one day at a time. Lainy is so right that this will be a long ordeal for you and you need to take care of yourself in order to be strong and a good advocate for your grandmother. And, despite all of the negative information and statistics you have undoubtedly read, you really can’t know what lies ahead for your grandmother. Every patient’s particular cancer biology is different and their responses to various treatments can be quite different as well. My husband’s bile duct cancer was quite advanced when diagnosed (hilar stage 3B). And he was told repeatedly that it was inoperable. His prognosis was grim and I truly didn’t think he would survive long. I was so sad and worried, for him, for myself and for our children. I joined this discussion board and began reading as much as I could about people’s similar experiences and it was so very helpful to have access to a wealth of information and support. I initially resisted the suggestions to get a second opinion from a Cholangiocarcinoma expert, because we were confident in our doctors medical experience. It took a while to realize how critical it is to be treated by a top medical center that handles many such cases. They are the folks that have their finger on the pulse of the latest treatment options/research. We eventually south several second opinions from such top centers and my husband had a resection and is now 15 months cancer free. (You can read my prior posts or I can email you a summary.). My point is, we can’t just assume the worst or spend our time worrying about “what ifs”.

In your grandmother’s case, it sounds to me that she is very fortunate that it was found at an early stage and that she is feeling relatively well. You didn’t mention what about the tumor location makes it inoperable, but generally, at stage 2, there are more options than at later stages. I hope this is the case for your grandma. I would strongly advise you to seek out one or more second opinions. There are a number of great choices on the east coast. You want one that uses a multidisciplinary team approach, so that input is received from the medical oncologist, surgeon, radiologist etc.

Regarding the stent issue, it sounds like the stent has been for approximately 6 months, which is really stretching it’s useful life. If an infection develops, she can very quickly become very ill and need to be hospitalized immediately. If you decide to take her on vacation this week, minimally, I would pack Tylenol, a thermometer, and the patient care card available on this website so that you can be alerted to an oncoming infection at the onset, and so that it can be explained to a community hospital admitting Doctor that may never have heard of cc. I would also set up an appointment for a stent exchange before you leave so that it can be done quickly upon her return.

I hope this is helpful. So many of us have been in shoes similar you yours, and we u dears tank how difficult this is and we are here to provide comfort and guidance. Please keep us posted.

Debbie

Kris, I’m sorry you are so uncomfortable. Hopefully the symptoms will clear up quickly now that the new stent is in place.
Debbie

Hi Jennifer,

Mike’ tumor was 10 cm in length and about 5 cm wide, and it was in the right side of the liver. He had nearly 70% of his liver removed. Perihilar cc . He also had bile duct involvement, so bile duct reconstruction and portal vein reconstruction. Surgery was at UCSF Medical center, Dr. Carlos Corvera.

Hope this is helpful.

Debbie

Oops, my error on my comment above. I assumed current provider is a small community hospital, didn’t remember it was Vanderbilt. I should have taken a few more moments to read through prior comments to see where treatment was. Thanks, Marion for correcting that comment.
Debbie

Daisy,

Sleep deprivation can negatively impact immune function and can lower white blood count. Sleep is such an important component of good health. I would suggest you try to identify the cause of your mom’s lack of sleep and then remedy that.