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Hi Julie,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your mum. But I am glad that you’ve joined us all here as you are in the best place for support and help and I know that you’ll get loads of both from everyone here.
From what you say it sounds like you have a great team with your mum and I know that she will be in good hands at SK. No personal experiences with the HAI pump but this link has a bit of info on it for you.
http://www.mskcc.org/cancer-care/adult/gallbladder-bile-duct/treatment
I hope that your mums treatment goes well with the best possible results and I also hope that she has her surgery in time as well. Please let us know how everything goes for your mum and know that we are all here for you.
My best wishes to you and your mum,
Gavin
Hi, Julie,
Please check the link below for my medical history.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=76800#p76800
God bless.
Julie,
Welcome to this wonderful group. I also consider ICC a chronic illness as I was diagnosed in 2010 and have had 2 liver resections. Sounds like you have a good medical team and plan.
Peace
LisaHello Julie –
Welcome to the best family no one really wants to be a part of. We are great resource and a great place to vent, talk or just research information. Sounds like you have a great team working with you.
I don’t know anything about the HAI pump. We thankfully haven’t had to go that route. However my husband had his resection in June 2013 followed by 6 months of Gem/Ox as adjuvant chemo post-surgery. He tolerated it fairly well as I hope your mother is. The only problem he had was the cold intolerance and a couple of reactions to the Ox towards the end. We are now working toward IMRT sometime in the near future.
Hope everything goes well for both of you and don’t forget we are a great resource.Good Luck,
KrisVJulie….I would like to welcome you to our site as well and would like to point out that we have several postings on the HIA pump. Thought to include a link:
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=577452402
Please know that you can always click on the “poster’s” name in order to retrieve his/her additional postings on this site.
Most likely those with personal “liver pump” experience will come forward and share thoughts with you as well.
Hugs,
MarionThank you for those kind words! Three resections in 5 years is certainly tough. What was your situation like when you were first diagnosed, if you don’t mind me asking?
Hi, Julie,
As you have already known, HAI pump is a clinical trial for ICCA patients ;it is a method that can directly deliver high dose of chemotherapy agent at the site of tumor. Less side effects of chemotherapy agents has been observed in colon cancer study as compare to traditional intravenous method .However, you are absolutely correct that recurrence rate for ICCA is>75% even after liver surgery with R0 (clean margin). that is why we call ICCA as a chronic disease. I am a patient of ICCA for 58 months with 3 resections and 3 RFA (ablation); It is tough,but if you keep learning and watch your mom closely. you will enjoy lots of Christmas to gether in the years to come.
God bless.
I am new here. This site and all the support and information it offers is fantastic. My mom was just diagnosed in Dec. 2013 with ICC after many tests. She has a large (10cm) mass in her left lobe and two microscopic, as her onc described them, tumors clustered around the larger one. She is being treated at Sloan K by Dr. Lowery (oncologist) and Dr. Jarnigin (surgeon) as part of a clinical trial. They are confident that all can be “easily removed” in time but have opted for neoadjuvant chemo first. Her regimen consists of bi-weekly Gem/Ox cocktails and continuous use of an HAI pump that was implanted a few days before Christmas. She had another MRI last Friday and we should get the results tomorrow to see if there has been any response yet. Her exploratory surgery at time of pump placement confirmed no vascular/lymph invasion and no mets, but the recurrence rates terrify me. I’m curious if anyone else has had luck with an HAI pump for this kind of cancer?
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