mistyk
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Goodness, I just looked at the drive from Savannah to Atlanta. 4 hours probably does seem daunting. Make lots of stops so she can stretch her legs. Maybe keep a pillow handy, she might feel more secure having one to hold across her tummy.
I hope she’ll agree, for your peace of mind. My father-in-law just lives 1/2 hour from us.. in the same metroplex area, but that’s plenty far when a late night call comes and he needs our help.
Hi speppers12,
You are experiencing what we did 8 months ago. There is a lot to learn in what seems like a very little amount of time. Like the others, I’m sorry you have had to find our group, but I am glad you did. These boards are a wonderful resource, and I’m still learning as we move into our second round with CC.
Misty
speppers12, in my father-in-law’s case, the resection involved the bile duct containing the tumor, and the common bile duct, and the right lobe of the liver. How much or how little they take during the surgery depends on what the surgeon finds once he is doing the surgery. Pops still had his gallbladder, so they removed it during the surgery as well.
My FIL had a followup appointment for the results of his biopsy today. The pathology shows no malignancy, but the radiologist told us that usually is the case with CC before he did the biopsy. A CT Scan will be scheduled in a couple of weeks, and we visit the oncologist in 3 weeks. He says we are going to watch it for changes and growth.
Pops asked if there are any treatment centers that focus their study on CC. The doctor told him there aren’t because it’s just too rare. Then we asked about a referral for a second opinion. The oncologist got very defensive and said that we are looking at this the wrong way. He said the treatment for CC is pretty standard no matter where you go, and that we should be focused on whether or not Pops is able to handle a treatment with all that he has going on internally (his white cell count and platelets are low). We have asked 3 doctors about those numbers being low, his MD, the liver specialist, and the oncologist. None have given us answers as to why they are low and what they indicate. His answer on the referral was essentially, “No.”.
I was infuriated! Fortunately, Pops had the same reaction I did to this doctor’s attitude. He is contacting his MD to get a referral for a second opinion. Several of you mentioned MD Anderson, and I know they have a lot of information about CC on their web site. Have any of you been treated there?
Eating was a BIG ordeal for us after Pops had his liver resection. He had just been through pancreatitis two weeks before his resection, so he had zero appetite for months after the surgery. He dropped 24lbs. and his bloodwork showed him as malnourished, so the surgeon told him the oncologist wouldn’t be able to do anything for him until he was more well nourished and gained some weight back. 8 weeks after surgery, 5″ of his incision reopened. The surgeon claimed it was because of his poor nutrition.
As his caregiver, I was beside myself trying to encourage him to eat. The surgeon wanted him taking in 2500-3000 calories a day! It did not help matters that Pops has been on a very strict diabetic diet for 20 years. That really limited my choices of things to make for him because he insisted on sticking to that diet until he saw that his A1C was in a good range.
I found that counting his calories was the only way to diffuse the daily arguement about food. I used a calorie counting software. I highly recommend it, so the caregiver doesn’t worry terribly about how many calories their loved one is getting per day.
The nurses who came out to care for his incision when it reopened told us that his protein intake should be doubled while the incision healed, and to increase his intake of Vitamin E.
These are a few tips that worked for us:
*Eat something every 2 hours, especially if there isn’t much of an appetite.
*The Carnation Breakfast Essentials shakes were wonderful. There is a “No Sugar Added” version in the chocolate flavor.
*Add powdered milk to baked goods, creamy casseroles, and shakes to increase protein and calories.
*There is a higher protein milk available in some areas.
*Glucerna Bars and Shakes are great. The Hunger Smart version has more protein.
*Tomato juice is great for healing. We worked in a small glass every day.
*I did a lot of baking, and warming things in the oven thinking the smell of food cooking would help encourage his appetite.
Pops gradually transitioned from several mini-meals a day to larger meals 3-4 times a day, and his appetite has finally returned. It took about 5 months for him to move from eating because it was time to eat to feeling hungry again.
I hope some of these suggestions help!
Misty
Welcome Anne,
I feel like I’m following in your footsteps, just about 4 months behind you in your mother’s battle with cc. I’m glad you went the route of a second opinion. Please keep us posted as to your mother’s progress! Best of luck. I’ll be thinking about you.
Misty
Pops’ biopsy was today. The procedure today was complicated by his previous liver resection. Normally a needle biopsy is done through the abdomen, but now part of his colon is taking up the space where the right lobe of his liver was, so they had to go in through the lower part of his chest to get to the hot spot between his liver and diaphragm. There was a risk of piercing part of the lung, but it went well.
No complications so far! *Knock wood* We should have the results in 2-3 days.
I also had the opportunity to discuss second opinions with him. He’s agreeable to the idea, so it’s something we’ll follow up with as soon as possible.
My father-in-law has a dog. The only concern was when he was recovering from his surgery, because he couldn’t walk her and care for her, but she stayed with us during that time. She is a full grown dog, though.
Do you know why they advised her not to have pets?
He’s being treated at Medical City, Dallas.
I’m not sure about the ‘brushing’ versus another type of biopsy. I do remember the liver specialist mentioning a brushing during the ERCP, but that was when the tumor was in the bile duct. I suspect this biopsy is to determine if this new tumor is the same type of cancer, because the oncologist says it is not where they would expect to see a hot spot connected with cholangiocarcinoma. I appreciate the information, though, and will definitely ask the questions before the procedure.
It is also good to hear that PET scans can be wrong. I am a complete novice at these types of tests. I’ve never been a caregiver for someone with cancer before this, so I’m in a heavy learning curve. The SUVmax on this tumor is 11.2, so the oncologist is pretty certain it is a carcinoma of some kind.
Second (and third) opinions are something we need to discuss with my father-in-law again.
