Klatskin Tumor
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Fred –
So glad things are going good for Chris. It is always rough. I know there is a roller coaster ride that goes with this cancer.My husband had gram-negative infections several times. These are usually gut bacteria like E. coli, Klebsiella or others like that. Our infectious disease doctor, GI doc and surgeon said that those types of infections are very common with resections due to the rearrangement of the gut. The small intestine connection to the liver can sometimes “back up” gut bacteria into the blood stream. Mark was hospitalized three times for significant infections. Twice we came home on oral antibiotics and once on IV antibiotics. The one that worked the best for us was Levaquin which is the only antibiotic that works exactly the same orally as IV. Our infectious doc gave us a refillable prescription for this antibiotic and we kept it on hand at home for “just in case.” I used it once for an infection and kept him out of the hospital. The other thing they did was put him on Ursodial 300 mg twice daily and that was supposed to keep the bile moving and keep things from “backing up.”
Hope this helps.
KrisVHi Fred,
Found this googling for you, it’s quite lengthy though.
http://cmr.asm.org/content/25/3/450.full
http://www.cancernetwork.com/cancer-management/infectious-complications
Found this as well from MSKCC – https://www.mskcc.org/cancer-care/integrative-medicine/herbs/squalamine
Hope some of these are useful Fred and very happy to hear you say that your son is doing better and my fingers are crossed for that to continue!
Best wishes,
Gavin
Fred….so happy to hear that your son has made a turnaround for the better. I recall santineerp posting mentioning gram-negative e-coli in one of her threads. BTW: e-coli is a gram negative bacteria. You may want to enter the keywords: “gram negative bacteria” in the Search function in order to retrieve her posting.
Hoping for others to chime in on this as well.
Hugs,
MarionAll-
Our son is doing better and will be coming to our home over the next few days. He is up to 1200 calories a day so we’ll work to ensure that his favorite foods are available throughout the day.
His WBC is down to normal but will be on anti-biotics given through an IV for the next week or so. A home care provider will come to our home for an hour daily to administer the anti-biotics.
The Dr mentioned that it was a gram-negative bacteria that caused the infection. After getting off the phone and going research, we feel fortunate that Chris is still with us.
Does anyone have experience with a gram-negative bacteria that could provide experience and recommendations?
Thanks
FredFred –
I know people say you can’t live on nutritional shakes but you can. I have had many many people that live on those alone. You can look for shakes that are more calorie dense….Nestle believe it or not is one of the biggest suppliers of these supplements. If he is having difficulty with his stomach getting full and hurting you may want to talk carefully about any kind of feeding tube…..they can sometimes make that worse….ask about a J-tube which is a little further down the gut. Nutritional IV is probably a better choice for short-term. These are just suggestions of course but be sure and ask a lot of questions about both procedures…..risks, benefits of each….and my favorite question…If it was your family which would you do?KrisV
Dennis and Chris V-
Thank you for sharing your experiences.
We just visited the hospital where Chris is still in the ICU. They are still trying to determine the type of infection so that they can use the proper antibiotics. His WBC is still around 20,000 but his temperature is normal. They should receive the results of the cultures tomorrow so let’s hope that the infection can be isolated. His port was also removed yesterday and is being tested for bacteria.
Our bigger concern is his appetite and he is hesitant to eat anything, is picking at his food, and is primarily living on nutritional drinks. At about 1000 calories a day, he is probably losing weight. After 3 days of counting his calories, a decision should be made tomorrow to start him on a nutritional IV or a feeding tube.
Should we consider asking that a psychologist meet with Chris to discuss the eating issue?
Thanks
FredFred,
I can only support that my recovery had a very similar course with ups and downs. It’s important to remember that your son went through a major surgery and likely every organ in the digestive track was ‘touched’. I experienced swelling and fluid build-up in the gut that forced me back into the hospital a few weeks after the surgery. Getting comfortable with eating was a struggle. What helped me was smoothies, protien drinks, fruits/vegetables and nuts (walnuts and almonds). I started with small meals 4-5 times a day (as opposed to 3 bigger meals). I was also diagnosed with iron deficiency (which seems to make sense since have my liver was removed). I started taking an iron supplement each morning with Orange Juice (better absorbsion). Keep the spirits up and there will be positive progress ahead! Continued best wishes and God Bless!
Dennis
Fred –
Unfortunately infections can be a part of the process. My husband had three hospitalizations for sepsis (bacteria in his blood) after his resection. Once after his port was placed for chemo and then again after his first two rounds of chemo. There were two more times after that where I was able to keep him our of the hospital by starting antibiotics at home as soon as I notices symptoms. They never really figured out where it was coming from and everyone had their own ideas. The GI doc said it was from narrowing where the liver and the small intestine come together. He thought there was too much swelling which caused the bile to back up. He started Ursodial 300 mg twice daily for that….never were sure if it worked or not since he had two more episodes after that. They were sure it was his port finally so they pulled his port out and he did the bulk of his chemo without a port or PICC line.As far as appetite goes, Mark’s was always terrible when he was sick with the sepsis. He would just pick at his food. We tried to stay with a more soft even liquid diet. He would drink a lot of protein shakes. Also sometimes food that is too warm or too cold can irritate the stomach so try stuff that is kind of room temp or lukewarm. Also small high protein meals…..we did the protein shakes with frozen fruit, a couple scoops of ice cream, protein powder, yogurt and a little milk. The other thing you can do is make jello and instead of adding cold water, add something like Ensure clear or another clear protein drink (IsoSource is another one). It adds quite a bit of protein and it’s also considered a fluid. Fluids are the most important.
Good luck and keep us posted.KrisV
All-
As always, thank you for your beneficial comments, recommendations, and support and I do apologize for not replying sooner.
The weeks since the 4 May meeting with Dr Yopp have been challenging and Chris is now back in the hospital.
During the 2 weeks immediately after the removal of the egg-size tumor, he seemed to be recovering well. He was starting to eat more normally and gaining his energy and stamina. He moved from our home to his and was excited about going back to work. One note- he is to start chemo in mid-June as microscopic traces of cancer are thought to be remaining in his remaining right lobe.
Then about a week ago, his appetite was dramatically diminished and he was very lethargic. Our youngest son felt that Chris was becoming non-functional. He was readmitted to the hospital last Friday.
They believe that he has an infection and are treating it with antibiotics. They are even concerned about blood clots. And as he is not eating and has lost even more weight, he is getting nutrients through IV.
A few questions-
– Are infections and blood clots one of the complications from the removal of a Klatskin tumor?
– How do we get through the challenge of not eating? He says that he experiences pain when eating. Would his stomach be so small that it would be painful to eat?
Any recommendations at this point would be helpful.
Thanks
Freddhometexas wrote:First- thank you to all your your support, guidance, and recommendations over the past months. Tomorrow, we have a visit with the surgical oncologist that removed the Klatskin tumor 2 weeks ago and would like your advice on questions to ask. So far we have:1. What are the results of the biopsy and the margins?
Ask for the “official” staging based on their findings.
2. At what point would adjuvant treatment be recommended? Chemo, radiation, hormone, biological?
Request to have a tumor sample sent to FoundationOne for genetic testing a future possible targeted therapy.
3. How long does it take the liver to regenerate?
The liver doesn’t actually “grow back” – what’s left just grows a bit and compensates for what was resected. Usually 3-6 weeks but you won’t even be aware of it (I wasn’t).
4. What are the chances of recurrence?
Good luck getting an answer to this other than “high”. I don’t think you’ll pin a provider down on this.
5. What diet should Chris be on?
Be sure it’s protein-rich during recovery.
6. What should his range of activity be?
Good question – Other than no driving or picking up heavy objects for a few weeks, I had no restrictions.
7. Should PT or OT be recommended?
Usually not necessary.
Is there anything else that we should ask?
Ask about frequency of follow-up scans and labs. Every 3-4 months for the first year is normal. Try getting MRIs vs CTs of the abdomen if you can to avoid the xrays associated with CTs.
Ask about what to look for complication-wise, such as bile or intestinal blockage from scar tissue that forms post-op. I had none of this, but many do.
Thanks
FredFred
That covers it from my perspective. I believe nutrition is a major thing at this point in recovery. If you haven’t already, you might ask if there is a nutritionist available to be refered to. Might also add the following:
What does the follow up testing schedule look like? Blood Tests (Liverpool function, and CA19), Scans, and Frequency of such?
Best wishes and continued prayers for healing,
Dennis
First- thank you to all your your support, guidance, and recommendations over the past months. Tomorrow, we have a visit with the surgical oncologist that removed the Klatskin tumor 2 weeks ago and would like your advice on questions to ask. So far we have:
1. What are the results of the biopsy and the margins?
2. At what point would adjuvant treatment be recommended? Chemo, radiation, hormone, biological?
3. How long does it take the liver to regenerate?
4. What are the chances of recurrence?
5. What diet should Chris be on?
6. What should his range of activity be?
7. Should PT or OT be recommended?Is there anything else that we should ask?
Thanks
FredFred. Came to that same fork in the road. We asked and rec’d varied options pro/con. We opted not to have chemo/radiation. At the time there just wasn’t enough solid evidence to support it being more helpful than harmful based on our specific situation. We weighed all considerations as to tumor size, location, margins, differentiations, lymph nodes …before making the choice (which was supported by our Oncologist). Once the decision was made, it was full speed ahead doing all the things required to support liver health and a full recovery. Hope this was helpful and continued best wishes to you and your son. Dennis
Dennis and Pat-
Thank you for your comments and support and for now smoothies seem to be our approach working towards vegetables, low fat meats, eggs, and fish.
A question- did you have any adjuvant therapy (mentioned by Marion previously) – chemo, radiation, hormone, or something else? I’m sure that the next steps will be based on the margins but I’d like to benefit from your experiences.
Thanks
Fred
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