Introduction, father with GB cancer
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Dear Only One,
I am hoping your visit to Mayo in AZ will open more doors for your father. I can see you are leaving no stone unturned, and that you are an amazing daughter! Please know that I will be keeping you and your father in my thoughts and prayers.
MelindaHello. I am posting to see if I can gain any more knowledge or updates in regards to options for gallbladder cancer patients. My dad was diagnosed in December 2014 with stage 4 GBC. He has had 5 rounds of Gemzar and Oxaliplatin and his latest scan showed a significant increase in lung micro nodules. He is now off chemo for three weeks and we are looking at study options vs doing FOLFIRI and Avastin with his local doctor. He looks otherwise healthy and you would have no idea those awful scans belong to him. We are going to the Mayo Clinic in AZ (we live in San Diego) to meet with a doctor there and look into a BBI608 and BBI503 trial. I was wondering if anyone has participated in either of those and if they have had any success. Also if anyone has exeperienced FOLFIRI and Avastin and had any success. We are running out of options and time. He doesn’t want to suffer too much but wants to stick around for his wife of 50 years, his daughter (me) and his beautiful grand children. Open to other ideas as well. Thanks
Onlyone……although one of the Biliary cancers, gallbladder cancer is different than that of bile duct (cholangiocarcinoma) hence it is unlikely for you to find gall bladder cancer specifics on this site. Treatments can be very similar though. The below link may offer some additional information:
http://www.cancer.org/cancer/gallbladdercancer/
I hope this helps.
Hugs,
MarionThank you, Melinda for info on that NIH trial. Unfortunately , my dad does not qualify as he is 76. I am wondering if there are any members of this site who have any experience with gallbladder cancer specifically with KRAS amplification. I would love to know what treatments were used. I Am now looking at clinical trials . I have heard good things about the Merck Drug MK-3475 but most trials are full for this type of cancer. He is about to have his fifth chemo and is not handling it well perhaps due to a Genzar drug reactiion. My guess is it is time to move to another type of therapy. Hoping to get feedback.
Dear Onlyone,
I have been involved in the immunotherapy trial at NIH for the past three years, unfortunately it does require travel to Bethesda, Maryland. I still would highly recommend giving them a call and asking if there might be trial recommendations near you! The link to my trial is here and there is a contact number at the bottom of the page. Hope this helps!
Melinda
onlyone….have you looked at our Clinical Trials thread? We highlighted 2 trials in particular.
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=14
Additionally there is the Clinical Trials Section on our home page. Perhaps you have perused it already, but thought to include the link as well:
http://cholangiocarcinoma.org/professionals/research/clinical-trials/
Hoping for others to chime in as well.
Hugs,
MarionOnlyone, just type in Folfiri in our Search Engine and a ton of posts will appear. My goodness you have done all the right things and I must say you have hit on the best! Dr. Lenz is one of our top as is MDA Houston. I know others will post information today as well so just hang in there and keep up your great attitude and read, read away as knowledge is the best way to fight CC.
Thanks for responding so quickly. We already had a few opinions and have changed his primary onc in San Diego from a general to one specialized in GI cancers. We have also been to LA to see Dr. Heinz-Joseph Lenz and have a doctor at MD Anderson reviewing his records as well. Thanks for the links and if anyone else has some clinical trials to recommend or an opinion on FOLFIRI that would be great.
Onlyone, Welcome to the best place to be for CC support. I am sorry to read about your Dad and strongly suggest a 2nd and possibly 3rd opinion. I have been saying that different eyes see different things. Normally but not as a rule GEM/CIS seems to be the first chemo cocktail of choice, so you may want to ask about that.
At the top of our page here there is a Search engine where you can enter a couple of word and many posts will appear on that subject. Like, enter the word Trials. I know we have a couple of patients on Ketruda so type that in as well.
Please keep reaching for the stars as without hope we have nothing. Hang in and hang on for this wild ride but know that you are not alone as we have all become one big family. I am posting a few sites that may be helpful to you and please keep us updated on your Dad.Newly diagnosed:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-emergency-information-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/My father was diagnosed late December 2014 with stage 4 gallbladder cancer (adenocarcinoma) with a primary tumor in the fundus of the gallbladder and spread to the retroperitoneal lymph nodes and lungs. CA 19-9 at the time was 1,500, its now 8,000- scary. He has had 3 rounds of chemo with Gemox (gemcitabine/oxaliplatin) and had a rough time post chemo with high fever, shakes and rash. The docs think its due to Gemzar reaction and will be modifying his premeds for round 4 on Monday to include Benadryl 25 mg IV and start him on 4 mg of Decadron twice daily the day before chemo for 3 days, Hope it works. If not, his doc suggested FOLFIRI. It seems the side effects are worse and it can be less effective. Can anyone weigh in on this?
At the moment he has shown shrinkage of the primary tumor but increase in lung micronodules (they are many tiny nodules scattered throughout his lungs) and some nodal areas. I am concerned about this mixed response and am actively looking for any Clinical Trials that may be of help. We already did a Foundation One test and he does not have HER2 of FGFR that have some promising studies. His results showed KRAS amplification, STK11, MDM2 amplification and FAT1. He is on the wait list for one in Utah for Ketruda. We live in California and although my dad looks fairly healthy I prefer not to have him travel too far for treatment. Does anyone know of any promising studies? If yes, can you provide NCT numbers.
Thanks and I am hoping all these efforts will allow my dad to live a couple more years and hopefully longer. I know that’s reaching for the stars, but I have to!
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