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Kathy already updated her surgery story under another thread, but in case anyone was searching for HIPEC and sees this thread the surgeons ended up not performing HIPEC during her procedure because they didnt think Kathy had any peritoneal spread of disease (the omentum and peritoneal node were negative on initial and final path reports). She did end up with one positive lymph node (periportal, one of the 2 removed) though according to her pathology report.
Thank you all,
BillyDear Joe,
If your mom is truly in unbelievable pain, its time to see a pain management specialist. They may offer a celiac plexus block which will control the pain and may reduce her need for opioids; however this block does come with unpleasant side effects and complications (the most common are diarrhea/flushing) so its usually a last resort type block for liver/pancreas/stomach cancer pain. Here’s a link from cleveland clinic explaining a bit more:
https://my.clevelandclinic.org/health/articles/celiac-plexus-block
There was also a study from MAYO that suggested that aspirin may reduce the risk of cholangio (although its a retrospective, case controlled study). Here’s the link:
Bob,
I noticed you posted on another thread that you’re going to be re-evaluated for surgery. Good luck.. And if there are no mets, and your surgeon still says no due to location send your newest scans to some of the more aggressive surgeons. They may be more comfortable in resecting, you never know.
Billy
Just to update/close this thread (Kathy posted in the Gen discussion a more detailed account of her latest update)- we ended up meeting with Dr. Kato who did not think HIPEC would offer any benefit and was willing to operate ASAP, but Kathy decided to wait the extra month and thankfully Dr. Schwartz and the Hipec team at Mt. Sinai are willing to resect now also as Kathy’s last scan (Feb) showed even more shrinkage. So after 5 months of neoadjuvant chemo, Kathy will finally be operated on. In our last meeting we tried to ask if they were willing to perform the HIPEC regardless of node status as a prophylactic measure, but the HIPEC surgeon said they will only do the HIPEC if there is evidence of disease outside the liver (although if there is frank peritoneal spread/metastasis on initial laparascopy the resection/surgery will be stopped just like in all cholangio cases). Hope this helps explain our HIPEC options to anyone else who is presented with it.
-billy
Richnkim,
Cis/gem seems to be the first treatment option offered by most if surgery is not an option. Due to the lung mets I presume your husband was deemed inoperable. When Kathy went to sloan I initially wondered why they didnt offer radiation or other options at first (just the cis/gem was offered, with a re-evaluation for surgery later), but now I realize that’s their first step. That being said, if you are not comfortable with the answers you ve received, then I’d highly suggest a third opinion. Based on some of the other users’ posts it seems that MD Anderson is probably the top place to go for non surgical options. Also you can search the clinical trials posts on this site and at clinicaltrials.gov to search for any trial your husband might be eligible for; although most seem to want the patient to have tried chemo first.
Did your husband have a biopsy of the tumor? If so push to have it genetically tested. Weird that even at sloan we had to specifically ask for it to be tested but if genetic mutations are found it may open up clinical trial opportunities.
Good luck,
BillyI was not able to talk with them yet. The lead investigator in the US set up a phone meeting with me but that fell through and by then it was close to the Foundation’s annual conference so I didn’t follow up. I will attempt to ask again when I have some time.
-Billy
At the conference did they present any new data? Any follow up from their pt in the Milan study with complete remission in 2014?
Thanks,
BillyThank you for your reply BGlass. I’m asking because now my gf is presented with getting a resection now vs. waiting 2 more months of chemo to get resection with intraop hipec included. If a lot of people have had abdominal/peritoneal mets after their resections, then I think it’d be worth the wait for including intraop HIPEC. Obviously different surgeons have different opinions, which is why we are presented with these 2 options.
-Billy
Kathryn,
In addition to your questions above, I would also ask if they can test your tumor for its molecular genetics profile, as that can lead to options with clinical trials and such. I would think MDA would do this automatically, but at Sloan we actually had to ask since it wasnt offered up front, which was a little surprising. I would also ask if there’s any chance the tumor is resectable, and why or why not. Different surgeons have varying degrees of aggressiveness, but there are unfortunate circumstances (distant mets for instance) which make the tumors inoperable to all surgeons. Bring someone you trust with you into the room as a second pair of ears or to ask more questions, and keep copies of all your lab and scan results. You never know when you’ll need to send them to someone for another opinion.
Good luck,
BillyStephanie,
While I dont know your specific situation or if you are a surgical candidate, if there is any chance of surgery in your future and you end up seeking a second opinion at Sloan Kettering, perhaps it would be wise to also meet with the surgeons at Mt Sinai and Columbia while you are visiting NYC. For surgeons Katherine has sought out opinions from Dr. Jarnagin (Sloan), Dr. Schwartz (Mt. Sinai) and Dr. Kato (Columbia). They each have a different level of aggressiveness and one may offer something that the others do not.
Good luck,
Billy
Glad to see that they will be presenting at the conference (which I wont be able to make) this year. I had emailed their company but havent heard back from them yet because I wanted to see if they would open up their US trial to ICC pts (posted at http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=15712). It would also be interesting to see if they had any followup on the one ICC pt from their Milan study group with complete remission in 2014 and if that patient remained in remission.
Not sure if youre able to travel to germany but this trial is open there as long as your dad has no metastases. Worth a shot to try it or at least ask your oncologist about it. In 2014 one dr claimed to get a good response with an intrahepatic cholangio pt. Not sure if the whipple excludes him from the study but u can always ask. https://clinicaltrials.gov/ct2/show/NCT02415036?term=NCT+02415036&rank=1
BillyIt seems they have current clinical trials in Europe open to intrahepatic CC patients: https://clinicaltrials.gov/ct2/show/NCT02415036?term=NCT+02415036&rank=1
I have asked (email due to the holiday) if any will be opening up in the US for cholangio pts and am awaiting their response. I am hoping Kathy will be able to have her surgery and not require this but it would be interesting to see if the trials can replicate the claim of complete response from the Milan trial of this technique.
Bob,
Just wondering how you are doing on the chemo and if you ve heard back about potential surgery yet. Have you had rescans? how often? how much chemo do they want you to do? Although Katherine’s tumor is a little different, she’s also on the chemo first then hopefully surgery next, although the timeline has been pushed back a little. She was also presented with the opportunity for possible HIPEC after the surgery bc they think her abdominal lymph nodes are involved.
Billy
