*Resection recovery – what to expect*
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There is a least one discussion line on “statistics” – search on that word.
There is also a topic on deciding whether or not to do adjuvant chemo after resections in “General Discussion” from anrena18 on 10 Oct 2014.
Duke
Thank you All for your suggestions. I am noticing my mom starting to eat a little more since our last hospital visit. We do mini-meals or “grazing” as Duke mentioned, and I do see that mom likes lighter foods such as fruits and juices! I didn’t know coconut water would help with regulation – i’ll definitely go buy some fresh coconuts today and I bet they make really good substitute for water in fruit smoothies.
Here’s an update from our first oncologist meeting yesterday:Doctor recommended 6 months of Gemzar straight with weekly infusions. She said adjuvent chemo would only decrease changes of cancer coming back by 5%? Is this what others have been told? I really hate statistics but its such a big factor for my mom in deciding whether or not to do it. Have there been any cases of people who have had surgery and chose not to do chemo? I want my mom to do whatever she needs to do to prevent this horrible disease from resurfacing, even if it is 5%, but ultimately its up to mom and currently it looks like she doesn’t want to do it. In the mean time, we will be looking for second opinion. What is everyone’s thoughts on adjuvant chemo?
Thank you,
Serena
Much as we might like to encourage anything that seems to sound “good”, if constipation is an issue, be careful with too much ice cream…or milk products. They can be very constipating. I was lucky not to have any constipation problems during chemo , but I did stay away from milk products most of the tine. I can’t drink milk when I’m healthy….because it causes constipation for me. The couple times I did allow myself ice cream, I could tell the next day in the bathroom that it wasn’t a good thing for me to eat. After that, I pretty much stuck with protein/red meat….and veggies…and occasionally fruit.
I would also suggest trying some frozen applesauce…slightly thawed…or frozen peaches in juice, also slightly thawed. A favorite of mine is frozen fruit covered with a clear pop….(I used diet because I’m diabetic and try to limit the sugar…but if you’re trying to add calories…the regular wouldn’t matter). I often use frozen , red, sweet cherries covered with the pop in a glass…and then I eat it with a spoon. It’s pretty yummy. Anyway, the frozen fruit, slightly defrosted or in pop….could help with being appetizing….and also with constipation issues.
Julie T.
My husband had his resection surgery in April of this year and following his surgery he could only tolerate a tablespoon or two of food at a time. He couldn’t stand to look at a plate of food so I just put a tablespoon or so on it. After about a month, he could eat a little more at a time. By a few months out he was eating about half what he did presurgery. He still doesn’t eat as much as he did before, but he it careful to eat mostly healthy food and as much protein as possible. He mixes protein powder with hot chocolate to help increase his protein intake.
He still doesn’t have as much energy as he did before, but it has increased over time. It just takes time to heal from such a major surgery.
We found that stool softeners and coconut water (mix it with some juice if you don’t like coconut) help keep him regular while he was on pain meds following the surgery and while he has been on chemo. He usually has two small containers of it a day.
Good luck with your mom. It’s tough watching them go through this and you feel like you can’t make it better for them.
Sennakot S was my best friend for a while. I would hav e a chemo treatment which would bind me up. So I learned to anticipate it by taking Sennakot S the day before. See if there is something cyclic that can be worked around.
Duke
Serena….constipation is a major issue post surgery (and beyond) and one of the most discussed subjects on this site.
Most often enzymes are necessary to aid the digestive tract and assist the digestion of fat, carbohydrates and proteins. Some physicians automatically prescribe “Creon’. Additionally stool softeners may be necessary.
Additionally, medications are prone to cause constipation and stool softeners (Lactulose or something of this sort) might be helpful. Warm prune juice has been mentioned as well.
Definitely talk to the physician about this as you don’t want to delay intervention on this troublesome issue.
The search function provided these postings:
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=1347339463
Hugs,
MarionThank you Sprinter67, Gavin, and Marions for your responses. I will definitely experiment with different foods for mom. Marions – just bought a pint of vanilla ice cream
hopefully mom indulges in that!On another note.. has anyone experienced any changes in bowel movements? Notably constipation?
Hope everyone is doing well,
Serena
Serena,
I had a liver resection for intrahepatic CC and had most of my right lobe removed along with my gallbladder and a bile duct stent was inserted. I also ended up with an absess due to leakage. I lost about 35lbs in 6 weeks, 185 down to about 150. I lost my appetite for quite awhile, partly due to the antibiotics causing most foods to taste different to me. My doctors recommended me eating anything I wanted and to focus more on gaining back some weight as opposed to focusing on nutrition. My energy level dropped quite a bit as well, at my weakest point, brushing my teeth and taking a shower would completely wipe me out. Once I was able to start eating more food, which was after a couple months, my weight and energy returned very quickly. I experimented with lots of foods and often something that seemed good to me for a while would lose its appeal and I would need to move on to something else.You are to be commended for being there for your mother and doing everything you do. It isn’t easy going through CC and it isn’t easy being a caregiver either. Keep doing what you are doing and get your mom anything that sounds good to her. Best wishes to you and you mother.
Rod
Serena….although we stayed with mostly nutrition reach food, but for weight gain all bets were off. Ice cream, my husband’s favorite, was always available. Perhaps there is something your Mom likes and that may get her taste buds going.
Hugs,
MarionHi Serena,
Here is a link that should be of use and interest to you.
Hope some of these are of use to you Serena and I hope that your mums recovery goes well.
My best to you and your mum,
Gavin
Thank you Duke and Julie T. (my mom’s name is also Julie
).It is interesting that her tastes have definitely changed. She says everything tastes so different, even her savory favorite foods! I know its a long road. taking it a day at a time.
Serena
I did not have a resection, only chemo. I lost almost 35 pounds in five months before I started putting weight back on. A year later and it’s all back. As Julie said, small snacks (grazing) seems to work best. I concentrated on what tasted best, with nutrition as a secondary consideration. I used Kellog’s ToGo, others like Carnation Instant Breakfast. Whatever works is the best answer. Her tastes may have changed, so don’t be afraid to try new foods. Maybe even add hot sauce to put some zip into things.
Most hospitals have some sort of nutritionist on staff to help you. Take advantage of that.
This is a long road. It will take time to get your mother back to where she wants to be. Keep your spirits up and look for a miracle each day. They are out there, waiting for you to find.
Duke
Serena,
I had surgery for intrahepatic CC, and had most of my left lobe removed. I can’t speak to the bile duct reconstruction, but what I can tell you is that after having the surgery I did have, I could not eat much at any one time. That isn’t all that unusual. Numerous small meals and snacks are better than trying to stick to regularly scheduled normal portion meals. I have to tell you, that the feeling of being full after only a few bites, did not go away for a long time…maybe at least a couple months. Your mom has had even more insult to her body than I had….the surgery she had, itself, was rougher, and then to add the extended hospitalizations for these other issues, I’m not surprised if she hasn’t regained an appetite back yet. The walks are an excellent idea and if she is able to walk for a half hour, after what she’s been through, it seems to me that she’s doing pretty good. I do understand your concern though……you want your mom and buddy back the way she was.
Julie T.
Hello everyone. just want to say i’m glad to have found these discussion boards. All your posts have been really helpful and informative. I’m been a member for a few months, mostly as a silent onlooker and not much of a participator, but everyone seems to have most of their concerns and questions answered. So here it goes..
My mom is 61 and had a liver resection. Klatskins tumor, 5 cm. Developed jaundice June 1 and surgery July 11th. She had a left lobectomy with roux-en-y procedure. Her recovery has been pretty rough. Ended up in hospital for a total of 32 days due to a bile leak, infections, and ileus. We are home now and just got home from another hospital stay because of another bile infection. Sent us home with two weeks of antibiotics. I’m very grateful that my mom was given a chance for this surgery. VERY GRATEFUL. However seeing her suffer the past months has been scary and difficult. I’m 28 and her primary caregiver and trying my gosh darn best here, but I feel my best isn’t enough sometimes and so i’m seeking advice here.
Due to her multiple complications, doctors want to give her some more time to recovery before we see oncologist on what next steps are. At this point i’m really concerned about her weight and appetite. My mom and I had the best time together going out to eat and enjoying delicious food.. but now my mom barely wants to eat and I’m wondering if she will ever regain her appetite? She’s lost total of 30 lbs and continues to lose weight. She makes sure to drink at least 1 can of Ensure daily. Her energy level is still low but we try to take 30 minute walks daily in the neighborhood. We can’t stay out for long so my mom usually stays at home while I’m at work during the day. I’m just curious as to what recovery has been like for those who have had major liver resections and bile duct reconstruction? Did your energy and appetite slowly come back eventually? Any insight would be helpful. Thanks in advance.Serena
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