My Dad has Stage IV Cholangiocarcinoma
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Monica, great news that the port is out! When my Teddy used to get the infections in the Bile Duct stents they would put him immediately on an IV of Levaquin and the ONC once told me that Levaquin will take out ANY infection and he was right. I have been on it several times and it usually works in just a few days. I am so glad that mystery has been solved and Dad will start to feel better now. As we well know, welcome to the roller coaster ride that none of us care to be on!
Thank you so much for your kind words Gavin!
Dad’s port is out and there was much more infection within and underneath it than we thought. They are sending a sample off for culture. It may not help that he is allergic to penicillin, so the antibiotics they have been giving him may not have been strong enough to do the job.
Who really knows, just glad to out!Hi Monica,
Welcome to the site. Sorry that you had to find us all and sorry to hear everything that your dad is going through and please, no apologies are ever needed for the length of a post. So you go ahead and write that book if you want to and sometimes writing about things really helps. I know it helped me when I first came here when my dad was diagnosed.
Thanks for sharing everything and I too hope that things will improve dramatically when the infected port comes out. Big grrrr to infected ports! Please let us know how things go and know as well that we are all here for you. Looking forward to hearing much more from you.
My best wishes to you and your dad,
Gavin
SGM…..Once the infection clears hopefully many of your father’s symptoms will lessen.
Good luck tomorrow and please keep us posted.
Hugs,
MarionAh, now I understand more! Your Dad is young yet. We are here for you so no need to apologize for length of post. I don’t believe we have ever kicked anyone off! lol
Also relieved to read that Dad has a good “team” around him as that is the only way to beat this CC down.
Teddy had tried quite a few Nutritional drinks and landed on Carnation Instant Breakfast in Vanilla flavor and I would blend in a banana. Carnation was the one Home Hospice recommended and he really liked it. Good luck to dad tomorrow and I hope he gets his new stent and in a few days you could see a good change for the better.Lainy, thank you for your response and the link!
Dad has just recently turned 56yr and is being treated at a local clinic. We did have a second opinion from a top notch Liver Ong from Duke Cancer Center. They are both working side by side to help treat dad. So, I can tell you we are satisfied with the medical team….. We just have a very stubborn patient!
I wrote the post so I did not get kicked off…lol! But I did not want to write a book so I left out a lot of detail. Dad did have molecular testing done and that is where the problem was on determining the right treatment plan. 90% positive Liver and I think it was a very low positive % bile duct. They did suggest Nexavar and chemo Both to start Aug 2014 but Dad was not having it since he just lost his dad to cancer. My grandfather did not respond to Chemo so I think that scared my dad. When, it comes to meds, well, he has a pharmacy….. He just has to take them correctly. He has all that you mentioned and plenty more. When he was in a lot of pain over the mets to bone, he refused to admit it might just be cancer so he was in denial until I stepped in for pain management. This is when he agreed to chemo which has been wonderful for him! Also, he could be a walking add for Ensure
Hello, Monica and welcome to our remarkable family and the best place to be for CC support, as you have already seen.
I am wondering your Dad’s age and where he is being treated.
I am not sure about the time frame that Chemo does not work but I do know it is time to get a 2nd opinion. Sometimes Diagnosis takes a while but NOT 10 months. We are big believers in 2nd and 3rd opinions and I do feel it is time. The infected port could also be playing a part in his discomfort.
There are things they can do to help Dad feel better. Meds for Nausea, not eating meds and Nutritional drinks and meds for pain. Sorry, I just don’t get the feeling that where he is being treated is doing all they can so I hope they have a lot of experience with CC.
Below is a site that you may find helpful and please keep us informed of Dad’s progress.http://cholangiocarcinoma.org/newly-dx/
Hi All,
I have been reading everyone’s post for a while now, and I am just so pleased of the support and information that is given by everyone!
My dad found out in May of 2014 that he had a tumor in his liver. They did a biopsy and it came back cancerous. Did Scan & small spot in lungs, bone, and couple more liver tumors. Then for the next several months they were having a hard time naming it because it was adenocarcinoma found in the liver, so they finally agreed on Heptocellular Carcinoma. He refused Chemo but did start taking the Nexavar pill in Aug 2014. Next scan in Oct 2014 showed no growth, so Nexavar was working. He then started to complain of very, very, bad lower back pain. Went through the holidays barely able to work , basically in fetal position on couch month of Jan 2015 before he finally went to hospital to get some pain relief. Now, they determine mets to bone marrow and bones. Scan showed many many small lesions on liver and bone. He started GEMOX chemo in March 2015 & has been doing very well except his port always is infected! So, now they have changed diagnosis to Cholangiocarcinoma. 5 months in & he is tired, fighting fatigue, low blood pressure at times, nausea, lost weight in last month when he was gaining and LFT’s are starting to rise again. I wonder if this is the chemo resistance period the dr & I talked about at the beginning or if this is just a minor set back due to an infected port that is coming out tomorrow!
Thanks for letting me tell you my dads journey thus far!
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