Gallbladder Cancer Info

LeoLady
LeoLady Member Posts: 29
in Rare and Other Cancers #1

Here is some info from an email response I just received in regards to a question I submitted to the Nagourney Cancer Institute regarding their current research and treatment for gallbladder cancer.  This may be redundant for some but thought I'd share it anyway in case it is helpful for others:  

 

Cholangiocarcinoma is quite common in Asia and rising in incidence in the western world. It is broken down into intrahepatic and extra hepatic.

Treatment with Cisplatin + Gemcitabine has provided  meaningful benefit.

The biology of this disease  is under investigation.

Among the gene aberrancies are kRas, P53, SMAD4.

More interesting is the finding of IDH1/2 mutations.

 

Our laboratory examines patients with this diagnosis to assess the role of cytotoxic chemotherapies, like the taxanes (Abraxane), antimetabolites (like Gemcitabine, 5FU)  and others.

 

We are also extremely  interested in signal transduction inhibitors that target IDH, SMAD, EGFR, FGFR, cMET, BCL2 and many others.

Our platform uses fresh biopsy material to isolate cellular aggregates (organoids) from the tumor and then conducts studies to measure drug induced cell death, synergy analyses and novel drug combinations.

 

To proceed we would require a biopsy specimen of about 1 cm3 (1 gram) in size.  In addition ascites fluid can sometime be used for patients accumulating abdominal fluid.

 

Tissue must be fresh, sterile and transported to us by overnight courier. Some patients choose to travel to California to have the biopsy conducted by our surgeons.

 

If you would like to consider this approach, we can review the Ct’s to determine whether it can be easily done.  

 

Robert Nagourney, MD

Medical and Laboratory Director

Nagourney Cancer Institute &

Rational Therapeutics

Associate Clinical Professor

University of California, Irvine

Office 562 989 6455

rnagourney@rational-t.com

 

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Comments

  • richnkim
    richnkim Member Posts: 31
    #2
    I'm confused

    I to e-mailed them about my husband who has Intrahepatic Cholangiocarcinoma-Bile Duct Cancer and got about the same e-mail as you did sent back to me. What is confusing is you asked him about gallbladder cancer and they sent you something back about Cholangiocarcinoma which is bile duct cancer not gallbladder cancer. I must be missing something here? I know they treat both about the same when it comes to chemo but they are 2 different cancers. I am going to ask his Drs up at Mayo Clinic in Rochester this Thur about getting another sample and sending it to them, doesn't sound like I'll have much luck in talking them into it.

  • LiliTM
    LiliTM Member Posts: 32
    #3
    richnkim said:

    I'm confused

    I to e-mailed them about my husband who has Intrahepatic Cholangiocarcinoma-Bile Duct Cancer and got about the same e-mail as you did sent back to me. What is confusing is you asked him about gallbladder cancer and they sent you something back about Cholangiocarcinoma which is bile duct cancer not gallbladder cancer. I must be missing something here? I know they treat both about the same when it comes to chemo but they are 2 different cancers. I am going to ask his Drs up at Mayo Clinic in Rochester this Thur about getting another sample and sending it to them, doesn't sound like I'll have much luck in talking them into it.

    Yes, I am concerned that they

    Yes, I am concerned that they replied to those of us who are asking about Gallbladder Cancer as if it's the same as Cholangiocarcinoma - they are different, especially regarding the mutations. As far as I understand, only Cholangiocarcinoma would have the possibility of finding mutations in IDH & FGFR... not Gallbladder Cancer.

    Can they clarify that further? If we are asking about Gallbladder Cancer, does that mean they would essentially only be able to tell us which chemotherapies might work but no targeted therapies? 




  • LiliTM
    LiliTM Member Posts: 32
    #4
    also thanks so much for

    also thanks so much for sharing LeoLady! I got the same response just yesterday evening! 

  • LeoLady
    LeoLady Member Posts: 29
    #5
    LiliTM and richnkim -

    LiliTM and richnkim -

    Sorry for the confusion of the email content.  

    I got it late last night before I went to bed and did not look up any of the terminology, figuring that perhaps some of the members on the site who have more experience with this or are deeper into their research would know more of what they are referring to.  I did not know that cholangiocarcinoma is not the official term for gallbladder cancer (is there even one???)

    I called before coming on here and was informed that in my situation it would not be necessary to work with them at this time based on my test results.  The explanation I got of what they do if I understood correctly was that they treat the cells with different drugs or drug combos, and that sometimes drugs used to treat one type of cancer is successful in treating another.  

    Since it appears we are pretty much getting similar email responses I'd contact them directly for clarification.    

    Hope that helps even if a little bit..     

  • KCFlash
    KCFlash Member Posts: 23
    #6
    Interesting NHI Report

    Hello - Just thought I would share this link.  It's an interesting NCI report.   http://ushealthmagz.com/2018/05/04/cancer-institute-finally-admits-marijuana-kills-cancer/

     

  • LiliTM
    LiliTM Member Posts: 32
    #7
    LeoLady said:

    LiliTM and richnkim -

    LiliTM and richnkim -

    Sorry for the confusion of the email content.  

    I got it late last night before I went to bed and did not look up any of the terminology, figuring that perhaps some of the members on the site who have more experience with this or are deeper into their research would know more of what they are referring to.  I did not know that cholangiocarcinoma is not the official term for gallbladder cancer (is there even one???)

    I called before coming on here and was informed that in my situation it would not be necessary to work with them at this time based on my test results.  The explanation I got of what they do if I understood correctly was that they treat the cells with different drugs or drug combos, and that sometimes drugs used to treat one type of cancer is successful in treating another.  

    Since it appears we are pretty much getting similar email responses I'd contact them directly for clarification.    

    Hope that helps even if a little bit..     

    Thank you LeoLady,

    Thank you LeoLady,

    I'm very grateful that you shared ~ don't ever worry about sounding confusing. It was actually clarifying.

    It reminded me that I don't know if Dr. Nagourney has any drugs to test on my dad's Gallbladder Cancer that would really be promising (if it turns out the targeted agents are highly unlikely to work for him without the mutations exclusive to cholangiocarcinoma... and if they only focus on testing chemotherapy drugs, if my dad's already been on Gem/Cis and Folfiri, then the only category left that might work are taxane chemos? I worry that the biopsy would not be worth it for us if the test potential might be really narrow...)

    However - if it was at the start of our diagnosis, and if we have biopsiable 1-gram tumor tissue, then I feel it would definitely be worth it to see what drugs he should try. At this point for us specifically, I just don't know what to think... I have vague hope that they would find something random that my dad's cancer would respond to which we would not have otherwise known to try, but I can't tell if that's even really an option if they don't have anything promising to test on GBC besides the chemo I mentioned above...  so hard to make the call since a laparoscopic biopsy doesn't sound totally simple (hard to get clear answers on what it would really be like for my dad!) 

    I called Dr. Nagourney's institute but the person I spoke to didn't know medical answers, she was like a receptionist. I will try again. 

    Thankfully, you shouldn't have 1 gram of tumor tissue so they would have nothing to test on (as it sounds like they told you!) but if you ever did have that scenario (I hope not), or anyone else reading this, then perhaps it's worth it to get the biopsy and do the testing - I wish we had known at the very beginning : / 

    Thanks again and sending hopes and love!

  • LeoLady
    LeoLady Member Posts: 29
    #8
    KCFlash said:

    Interesting NHI Report

    Hello - Just thought I would share this link.  It's an interesting NCI report.   http://ushealthmagz.com/2018/05/04/cancer-institute-finally-admits-marijuana-kills-cancer/

     

    How about that - thanks so

    How about that - thanks so much KCFlash.  

  • LeoLady
    LeoLady Member Posts: 29
    #9
    LiliTM said:

    Thank you LeoLady,

    Thank you LeoLady,

    I'm very grateful that you shared ~ don't ever worry about sounding confusing. It was actually clarifying.

    It reminded me that I don't know if Dr. Nagourney has any drugs to test on my dad's Gallbladder Cancer that would really be promising (if it turns out the targeted agents are highly unlikely to work for him without the mutations exclusive to cholangiocarcinoma... and if they only focus on testing chemotherapy drugs, if my dad's already been on Gem/Cis and Folfiri, then the only category left that might work are taxane chemos? I worry that the biopsy would not be worth it for us if the test potential might be really narrow...)

    However - if it was at the start of our diagnosis, and if we have biopsiable 1-gram tumor tissue, then I feel it would definitely be worth it to see what drugs he should try. At this point for us specifically, I just don't know what to think... I have vague hope that they would find something random that my dad's cancer would respond to which we would not have otherwise known to try, but I can't tell if that's even really an option if they don't have anything promising to test on GBC besides the chemo I mentioned above...  so hard to make the call since a laparoscopic biopsy doesn't sound totally simple (hard to get clear answers on what it would really be like for my dad!) 

    I called Dr. Nagourney's institute but the person I spoke to didn't know medical answers, she was like a receptionist. I will try again. 

    Thankfully, you shouldn't have 1 gram of tumor tissue so they would have nothing to test on (as it sounds like they told you!) but if you ever did have that scenario (I hope not), or anyone else reading this, then perhaps it's worth it to get the biopsy and do the testing - I wish we had known at the very beginning : / 

    Thanks again and sending hopes and love!

    Hi LiliTM -

    Hi LiliTM -

    I talked to a Glen there and I don't know what his role is with the company, but maybe try asking for him?  

    I get the impression that all of this is so experimental and in the case of GBC because it isn't so common there is even more trial and error.  It breaks my heart to hear how people are suffering from either the cancer itself or the treatments and their desperation in the search for the right cure/treatment.  I wish it didn't have to be so agonizing.  I vowed that whatever I learn along the way I will certainly share with others.

    Prayers and positive energy to both you and your dad.    

  • glenn4health
    glenn4health Member Posts: 3
    #10

    I can help clarify what the Nagourney Cancer Institute does since I went through there as a patient.  They do NOT only test chemo drugs.  They can test almost all cancers with chemotherapy drugs, targeted agents, etc to see what your cancer cells would be sensitive or resistant to.  It is certianly not experimental - they've been doing it for over 20 years.

    Dr. Nagourney told me that some drugs while not indicated for a particular cancer nonetheless might show activity towards other types of cancers in some individual cases  e.g, a drug usually used for treating lung cancer might be effective against someone's kidney or liver cancer.  Everyone's cancer is truly unique.  Three people all with the same type of cancer mught require three totally different drug protocols to be effective. 

    It really reduces the guesswork out of oncologists just guessing out of the (NCNN) book and hoping you are an "average" patient.  Does this help?

     

     

  • LiliTM
    LiliTM Member Posts: 32
    #11
    glenn4health said:

    I can help clarify what the Nagourney Cancer Institute does since I went through there as a patient.  They do NOT only test chemo drugs.  They can test almost all cancers with chemotherapy drugs, targeted agents, etc to see what your cancer cells would be sensitive or resistant to.  It is certianly not experimental - they've been doing it for over 20 years.

    Dr. Nagourney told me that some drugs while not indicated for a particular cancer nonetheless might show activity towards other types of cancers in some individual cases  e.g, a drug usually used for treating lung cancer might be effective against someone's kidney or liver cancer.  Everyone's cancer is truly unique.  Three people all with the same type of cancer mught require three totally different drug protocols to be effective. 

    It really reduces the guesswork out of oncologists just guessing out of the (NCNN) book and hoping you are an "average" patient.  Does this help?

     

     

    Thanks Glenn ~ that is where

    Thanks Glenn ~ that is where my vague hope comes from, that some random drug for a different cancer might work for my dad's gallbladder cancer. But it sounds like they're saying the only real potential besides the chemo we've already tried (plus one chemo we haven't, the taxanes - like abraxane) would be for targeted treatment related to mutations exclusive to Cholangiocarcinoma - (different from gallbladder cancer)... so I am wondering if in our specific case, a laparoscopic biopsy procedure would not be worth the invasiveness/risk for the narrow window of potential that the test could give us... 

  • LiliTM
    LiliTM Member Posts: 32
    #12
    LeoLady said:

    Hi LiliTM -

    Hi LiliTM -

    I talked to a Glen there and I don't know what his role is with the company, but maybe try asking for him?  

    I get the impression that all of this is so experimental and in the case of GBC because it isn't so common there is even more trial and error.  It breaks my heart to hear how people are suffering from either the cancer itself or the treatments and their desperation in the search for the right cure/treatment.  I wish it didn't have to be so agonizing.  I vowed that whatever I learn along the way I will certainly share with others.

    Prayers and positive energy to both you and your dad.    

    Thank you dear LeoLady. It is

    Thank you dear LeoLady. It is so heartbreaking, I wish that nobody had to suffer like this... positive wishes back 

  • LeoLady
    LeoLady Member Posts: 29
    #13
    glenn4health said:

    I can help clarify what the Nagourney Cancer Institute does since I went through there as a patient.  They do NOT only test chemo drugs.  They can test almost all cancers with chemotherapy drugs, targeted agents, etc to see what your cancer cells would be sensitive or resistant to.  It is certianly not experimental - they've been doing it for over 20 years.

    Dr. Nagourney told me that some drugs while not indicated for a particular cancer nonetheless might show activity towards other types of cancers in some individual cases  e.g, a drug usually used for treating lung cancer might be effective against someone's kidney or liver cancer.  Everyone's cancer is truly unique.  Three people all with the same type of cancer mught require three totally different drug protocols to be effective. 

    It really reduces the guesswork out of oncologists just guessing out of the (NCNN) book and hoping you are an "average" patient.  Does this help?

     

     

    Thank you glenn4health - that

    Thank you glenn4health - that is extremely helpful, clear and makes total sense.  I would certainly contact them again for myself if needed at a later date.       

  • LeoLady
    LeoLady Member Posts: 29
    #14
    LiliTM said:

    Thanks Glenn ~ that is where

    Thanks Glenn ~ that is where my vague hope comes from, that some random drug for a different cancer might work for my dad's gallbladder cancer. But it sounds like they're saying the only real potential besides the chemo we've already tried (plus one chemo we haven't, the taxanes - like abraxane) would be for targeted treatment related to mutations exclusive to Cholangiocarcinoma - (different from gallbladder cancer)... so I am wondering if in our specific case, a laparoscopic biopsy procedure would not be worth the invasiveness/risk for the narrow window of potential that the test could give us... 

    LiliTM - how do you know for

    LiliTM - how do you know for sure that Cholangiocarcinoma is not at all related to gallbladder cancer?  I am just curious.    

  • LiliTM
    LiliTM Member Posts: 32
    #15
    LeoLady said:

    LiliTM - how do you know for

    LiliTM - how do you know for sure that Cholangiocarcinoma is not at all related to gallbladder cancer?  I am just curious.    

    They seem similar in lots of

    They seem similar in lots of ways - but our oncologist at MSK told us that Gallbladder cancer doesn't express mutations in IDH or FGFR, and that those are only seen in Cholangiocarcinoma... according to the cholangiocarcinoma foundation, there are some mutations specific to intrahepatic cholangio that even extrahepatic cholangio doesn't show, let alone gallbladder... 
    I wish there was more for us under the biliary cancer umbrella! 

    Right now I am really scared because we just found out my dad's latest scan shows overall growth and a biliary obstruction, which is new for us. We're getting a consult for an ERCP to get a stent. This also means we are done with Folfiri. I don't know what treatment to pursue next... they haven't given us any options yet except to mention checkpoint inhibitors (but my dad doesn't have the immunotherapy markers...) 

  • LeoLady
    LeoLady Member Posts: 29
    #16
    LiliTM said:

    They seem similar in lots of

    They seem similar in lots of ways - but our oncologist at MSK told us that Gallbladder cancer doesn't express mutations in IDH or FGFR, and that those are only seen in Cholangiocarcinoma... according to the cholangiocarcinoma foundation, there are some mutations specific to intrahepatic cholangio that even extrahepatic cholangio doesn't show, let alone gallbladder... 
    I wish there was more for us under the biliary cancer umbrella! 

    Right now I am really scared because we just found out my dad's latest scan shows overall growth and a biliary obstruction, which is new for us. We're getting a consult for an ERCP to get a stent. This also means we are done with Folfiri. I don't know what treatment to pursue next... they haven't given us any options yet except to mention checkpoint inhibitors (but my dad doesn't have the immunotherapy markers...) 

    LiliTM - thank you and I am

    LiliTM - thank you and I am so, so sorry to hear that about your dad's scan and wish I could offer more helpful info at this time.  Prayers for your dad and you, and hope you find the right treatment.  He is lucky to have you.  

  • LiliTM
    LiliTM Member Posts: 32
    #17
    LeoLady said:

    LiliTM - thank you and I am

    LiliTM - thank you and I am so, so sorry to hear that about your dad's scan and wish I could offer more helpful info at this time.  Prayers for your dad and you, and hope you find the right treatment.  He is lucky to have you.  

    thank you so much LeoLady,

    thank you so much LeoLady, your hopes and prayers are deeply appreciated. sending you a big hug. 

  • KCFlash
    KCFlash Member Posts: 23
    #18
    LiliTM said:

    They seem similar in lots of

    They seem similar in lots of ways - but our oncologist at MSK told us that Gallbladder cancer doesn't express mutations in IDH or FGFR, and that those are only seen in Cholangiocarcinoma... according to the cholangiocarcinoma foundation, there are some mutations specific to intrahepatic cholangio that even extrahepatic cholangio doesn't show, let alone gallbladder... 
    I wish there was more for us under the biliary cancer umbrella! 

    Right now I am really scared because we just found out my dad's latest scan shows overall growth and a biliary obstruction, which is new for us. We're getting a consult for an ERCP to get a stent. This also means we are done with Folfiri. I don't know what treatment to pursue next... they haven't given us any options yet except to mention checkpoint inhibitors (but my dad doesn't have the immunotherapy markers...) 

    I am so sorry LilTM about

    I am so sorry LilTM about your dads latest scans.    Good luck to you for future treatment plans.  

  • LiliTM
    LiliTM Member Posts: 32
    #19
    KCFlash said:

    I am so sorry LilTM about

    I am so sorry LilTM about your dads latest scans.    Good luck to you for future treatment plans.  

    thank you dear KCFlash.

    thank you dear KCFlash. thankfully he is recovering from the ERCP well (although they placed a plastic stent to make sure it's working properly first, and next time (in about 10 weeks) will place a metal stent. so he has to go through this again, sigh... and we still don't know what the treatment options will be. I'm researching trials and alternatives before we find out what MSK will say, likely sometime next week. wishing you luck too, and lots of love your way. 

  • richnkim
    richnkim Member Posts: 31
    #20
    New trial

    Just thought I'd put out that there is a new drug/trial for gallbladder cancer. Was just notified about this because my husband has Bile Duct cancer which is alot like Gallbladder cancer that the company has put out a new drug for gallbladder and bile duct cancer it's called Halo you can go to http://halo110-101.com and read about it. Something to keep in your back pocket if and when treatments you're on right now stop working.

  • LiliTM
    LiliTM Member Posts: 32
    #21
    richnkim said:

    New trial

    Just thought I'd put out that there is a new drug/trial for gallbladder cancer. Was just notified about this because my husband has Bile Duct cancer which is alot like Gallbladder cancer that the company has put out a new drug for gallbladder and bile duct cancer it's called Halo you can go to http://halo110-101.com and read about it. Something to keep in your back pocket if and when treatments you're on right now stop working.

    thank you RichnKim! I saw

    thank you RichnKim! I saw that trial but think it's for previously untreated patients? (so it would be their first-line treatment)... another site that notifies me about new biliary trials is called smartpatients.com, i marked down the category of trials i was interested in and it emails me every now and then... 

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