dhometexas
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All-
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
FredDennis 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
FredAll-
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
FredFirst- 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
FredHello-
It will be interesting to compare notes as our sons Klatskin tumor was surgically removed two weeks ago and we will get the results of the biopsy on Monday. At that time, we’ll also ask about our next steps.
I’ll let you know what our Dr recommends but it will be interesting to see other comments on your post.
Take Care
FredDennis 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
FredAll- Just an update
After an 8 day stay recovering at the hospital, Chris is now with us for a couple of weeks before he move back to his home. Fortunately there were no complications from the operation. His next appointment with the surgical oncologist is on 4 May where we should find out about the margins and potential future treatment.
Our focus for now is to help him get his appetite back and to gain weight.
Thank you all for your support and beneficial advice.
Fred
All- an update and question
Our son’s 10 hour surgery went exceptionally well and the surgeon believes that all the tumor and cancer has been removed. We are overjoyed.
It started off with a laparoscopy to ensure that the tumor had not metastasized. They then cut an L shaped incision and remove the tumor, the left lobe, and some lymph nodes. The final step was to perform a Roux-en-Y to connect the small intestine to the liver.
We updated every hour and the surgeon at UTSW in Dallas, Dr. Yopp came out at the 3 hour point to update us just before they started to remove the tumor.
So our son will be in the hospital for the next 4-5 days and then 4-6 weeks of recovery.
The results of the biopsy will be back in a few days to determine the margins.
What questions should we be asking now and what could be the next steps for our son?
Thanks to all for your support.
Fred
Louie-
Our 42 year old son was diagnosed with a Klatskin tumor last November (presented through jaundice). Initially a stent was inserted to start the drainage of his bile and his original brushing also came back as negative. His CA 19-9 was 4484. Over the next three weeks in the hospital, a biliary bag with three tubes were inserted. He was released when his bilirubin lowered.
He then went through three rounds of radiation using the M6 Cyberknife and two rounds of chemo using Gem/Cis.
Just recently, it was determined that the 3mm tumor was resectable and an operation is scheduled for 16 April. At that time, his CA 19-9 was 400 but the Dr explained that it is not a good indicator of the stage of the tumor or of its respectability. He just said that it is good that it went down.
For the operation, the Dr explained that, although it appears that the tumor has not metastasized, the first step would be to perform a laparoscopy.
If all is OK, they would then cut an L shaped incision and remove the tumor, the left lobe, and some lymph nodes. The final step is to perform a Roux-en-Y to connect the small intestine to the liver. It would be a 6 hour operation with 7-10 days of recovery in the hospital.
Our visit to the surgeon went well and the surgery is on for 16 April. He did explain that, although it appears that the tumor has not metastasized, the first step would be to perform a laparoscopy.
If all is OK, they would then cut an L shaped incision and remove the tumor, the left lobe, and some lymph nodes. The final step is to perform a Roux-en-Y to connect the small intestine to the liver. It would be a 6 hour operation with 7-10 days of recovery in the hospital.
We did get the surgeon to draw it out which helped considerably.
So it all looks good. Between now and the operation, our son will try to gain back some of the weight that he lost.
Thanks to all for your support.
Thanks to both of you and I am sure that I’ll turn to you all again after we see the Dr tomorrow to discuss the surgery in detail.
It would be great to have a good graphic of the liver, veins, arteries, and ducts. Any recommendations?
Good news- and thanks to all in these discussions for sharing your knowledge.
After moving our son to UT Southwest in Dallas to get a second opinion from a surgical oncologist, we were just informed that his surgery to attempt to remove his Klatskin tumor is scheduled for next month.
As we reviewed his MRIs and CTs, the decision was made based on the tumors size and location and impact on the left portal vein and left hepatic duct. Surprisingly, his left hepatic artery appears good. So it appears that only the left lobe has been impacted by the tumor.
He also cautioned that, even after operating, the tumor can be removed in only 50% of the cases. A bit surprising to us.
Would you have any guidance as we approach his surgery?
Thanks
FredCatherine-
Thank you and I will let you know. I hope that your Mom is doing well.
As our son’s tumor has been hard to located- even with all the imaging tests- they may need to do exploratory surgery.
Take Care
FredMelinda,
That you for sharing your experiences and including our son in your prayers. We’ll include you and others from these discussions in ours.
As I am learning more of this disease, his tumor is actually perihilar CCA or a Klatskin tumor. I’ve posted that topic under general discussions on the site.
A question for you- how were you included in the NIH trial? I have read some on the topic and it appears promising.
Thank you
Fred
