Newly Diagnosed Father in law
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Dear Jack, welcome to the bumps in the road situations. Sorry your FIL had such an ‘exciting?’ Thanksgiving. Not!
When my Teddy had biliary drains they had to be changed every 6 weeks to 3 months. They can get clogged or infected so easily. He would get a high fever, up to 104 with chills so bad I would put 3 blankets on him and then crawl on top. After the 1st time I knew to call the ambulance and get him to ER. They would do an IV of Levaquin which knocked the blood infection right out. They always did a blood culture to make sure it was an infection and the ONC said Levaquin can knock out anything.
As for the neulasta? or nupogen? We have a search engine at the top of the page and if you type in a word posts will come up on that subject. Wishing you and the family the best and smoother roads.So a few updates:
After follow up with Dr. Javle, my FIL’s bilirubin was not decreasing fast enough. It was still 3.8, and we weighed the risk/benefit of waiting vs starting treatment. Given the elevated Bili, we were no longer candidates for the abraxane clinical trial, so we started traditional gem/cis chemo on 11/15. Dr. Javle wanted to initiate treatments at MDA due to the elevated bilirubin. If things went well, we would likely continue treatment closer to us in Shreveport.
First treatment went fine, (aside from starting at 4 in the afternoon and not being done until past 1 am!), the week following was relatively uneventful. They made the trip to Shreveport for thanksgiving and everything was going well until thanksgiving night, around midnight, my FIL developed a fever. We brought him to our hospital here and admitted him with a severe neutropenia. His WBC count was 0.5. Long story short, he did well, aside from fever, no other complaints. Counts are back up and we are simply dealing with some kidney injury from the antibiotic. Hopefully home today.
A few questions for the group:
-Has any one else experience such low white blood cell counts?
-Do you get colony stimulating factors with treatment?
-does anybody have any bad experiences with neulasta? or nupogen?
-how often do you change biliary drains? and do you get admitted overnight when they are changed?I hope everyone was able to have an enjoyable holiday. We have plenty to be thankful for and wish all dealing with this disease a happy holiday season.
Rishelle,
My FIL has family in the woodlands. They have been staying there for now, and coming back to shreveport in between to stay with us. After we gather more info on the Abraxane + Gem/cis trial they will make a decision. If they enroll in the trial, then obviously, they have to get treatment at MDA and we would look for housing nearby. MDA website has a great resource for local housing options from extended stay hotels, short term apartment rentals, and the like. Thats where we’ve started so far.
Jack,
Dr. Javle told us of that clinical trial as well, but my parents don’t love to fly and it would have ruined my father’s quality of life to travel back and forth that much. Where in Houston are ya’ll staying? Is your father-in-law planning on getting all of his treatment here?
Rishelle
Jack…I too would like to welcome you to our group. Several patients are enrolled in the above mentioned trial, but we have few reports as of yet. Perhaps your posting will entice others to comment on this trial.
You may also want to consider reaching out to Rachna Shroff, MD 713-792-2828, the PI of the study:
https://clinicaltrials.gov/ct2/show/NCT02392637Perhaps she is able to pass on some information.
Please stay in touch, we care and we are in this together.
Hugs
MarionDear Jay, welcome to our remarkable family and the best place to be for CC support. Sorry to read about your FIL but he is truly at the best place with the best of the best! Please know that GEM/CIS is the norm for the first treatment and I have read where they are adding Abraxane. We have a search engine at the top of the page and if you type in Abraxane posts will appear on that subject. Below is a site you may find helpful and please keep us informed of FIL progress. Sending you all the very best.
http://cholangiocarcinoma.org/newly-dx/
My father in law was just diagnosed with an extra hepatic CCA with local invasion of the left lobe and mets to the left lobe and caudate.
He lives in Holand, Michigan. He went to PCP on 10/11 for symptoms of abdominal discomfort, pasty stools, itching, and jaundice. Labs showed a bilirubin of 9. CT done on 10/14 showed tumor at confluence of left and right ducts, extending up to the left lobe.
My wife is an ENT and I am a Trauma/critical care/general surgeon practicing in Shreveport, Louisiana. We made calls and were able to get into see Dr. Vauthey at MD Anderson. He got biliary drain. And now seen by Dr. Javle.
We are currently waiting on his bilirubin to get below 2 to start chemo. Dr. Javle made mention of a clinical trial at MDA, the addition of Abraxane to the standard Gem/Cis regimen.
I was posting to hopefully see if any other folks have any experience with this trial and what the results have been?
Thanks.
ps. as much as we never wanted to be a part of this group, we are thankful for having found it.
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