Viewing 15 posts - 1 through 15 (of 15 total)
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  • #92903
    chinesechick
    Participant

    Aloha Layne,

    We live in Aiea and my mom was diagnosed with intrahepatic cholangiocarcinoma in March while on a trip to Taiwan.

    Before she left Hawaii, she visited Pali Momi ER 2x because of severe abdominal and back pain. They said they saw ‘something’ in the images but asked her to see PCP for further exams. My mom saw her PCP then a specialist…but while waiting for appointments for ultrasound, which was taking long to schedule, the specialist ok her for travel to Taiwan.

    Long story short. She’s been in Taiwan since after being diagnosed here. Thinking of taking her back and finding a doctor at Queen’s. Can you please let me know the name of your doctor?

    Mahalo, Nancy

    #92904
    layneluke
    Participant

    Marion,

    I and my oncologist have been in contact with MATCH (as the local university has a administrator) however they want fresh tissue and that is why we were hoping to be able to have my lung tumors biopsied. TAPUR requires genetic mutation test results so you’re right, MSKCC testing may make available TAPUR or other trials.

    Thanks for the info,
    Layne

    #92907
    marions
    Moderator

    Layne….Also I was thinking of the MATCH trial. http://ecog-acrin.org/nci-match-eay131
    Not sure a site has opened in Hawaii as of yet, but it’s worth investigating.

    Your physician may contact: match@jimmy.harvard.edu

    Additional information can be found here:
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13860

    Trying to get updates on the TAPUR study, but your physician may also want to take a look at it.
    In either case, it’s easy to make contact with the principal investigators of TAPUR or MATCH.

    Perhaps the tumor analyses at MSKCC will reveal a targetable mutation, but I would ask your physician to investigate the other options as well.

    Hugs,
    Marion

    #92906
    layneluke
    Participant

    Hi Marion,

    My oncologist discussed my latest scan showing eight tumors in my lungs with an oncologist I saw at MSKCC in NYC and he decided to test the tumor removed at MSKCC in March, we are awaiting the results and STARTRK tested my tissue specific mutation and I did not meet their needs. A radioglist also reviewed my scan and determined that a biopsy on my lung is too risky.

    Thanks,
    Layne

    #92905
    marions
    Moderator

    Layne….any results with the insurance company?

    Hugs,
    Marion

    #92916
    layneluke
    Participant

    Hi Marion,

    Spoke to my insurance company who contacted my oncologist and although they could not tell me if the testing was covered, they will have my oncologist submit a request for pre-approval which will allow the insurance company review the tests and let me know if it’s covered.

    Thanks,
    Layne

    #92915
    marions
    Moderator

    Layne….in comparison to prior years we hear little of patient pay for molecular testing. I can’t guarantee you won’t pay, but considering the value of such testing and the possibility of eligibility of enrollment in a clinical trial, I believe it’s a chance worth taking.
    I assume your oncologist inquired about non-payment of lab testing with the insurance company.
    Hugs,
    Marion

    #92914
    layneluke
    Participant

    Hi Marion,

    My insurance is Hawaii Medical Service Association (HMSA) which is affiliated with Blue Ccioss, Blue Shield. My MSKCC surgery was covered.

    Thanks,
    Layne

    #92913
    bostonguy
    Participant

    My mother was not charged for molecular testing at DFCI. In speaking with my oncology colleagues they have indicated to me that it is generally covered by insurance, and almost always if initial therapy does not work.

    #92912
    marions
    Moderator

    Layne….what type of insurance do you have? Was your MSK surgery covered?

    Hugs,
    Marion

    #92911
    layneluke
    Participant

    Hi Marion,

    Good to know and hoping mine does not grow. My oncologist said molecular testing is expensive, not covered by health insurance and recommend that I find a clinical trial that would cover the rest. Called Foundation Medicine who said they offer financial aid and payment plans but would not give me an estimate or price range. He said every case is different and some require additional test which is determined after the initial tests.

    Mahalo,
    Layne

    #92910
    marions
    Moderator

    layne…..this cancer likes to travel to the lungs and sometimes the nodules just stay there, they neither disappear nor do they grow. I would consider molecular testing so that you have pertinent information if and when the next treatment needs to be considered.
    Hugs,
    Marion

    #92909
    layneluke
    Participant

    Thanks Marion,

    Met with a STARTRK coordinator today and they only test for a couple of specific mutations.

    My tissue is available at MSK for future testing.

    Went through 12 cycles of gem/cis and it did not work so those agents have been ruled out.

    Have a good weekend,
    Layne

    #92908
    marions
    Moderator

    Layne….a warm welcome to you. At this time, we don’t have anyone reporting back on the STARTRK research study.
    In order to enroll patients must have the NTRK/ROS1/ALK gene rearrangement (also called gene fusions) determined by genetic/molecular testing.

    MSKCC must have stored your tissue, which can be retrieved and send for lab analysis. If not possible, results of a liquid biopsy may prove sufficient for enrollment in a clinical research study.

    I looked up the eligibility requirements for both, MATCH and TAPUR, but both trials require measurable disease of 1 cm.

    Have cytotoxic agents been ruled out i.e. gem/cis or Xeloda?

    Hugs,
    Marion

    #12671
    layneluke
    Participant

    Hi All,

    Does anyone gone through STARTRK-2 RXDX-101 and if so, how did it go?

    I’m 58 years old, live with my wife in Hawaii and was diagnosed with intrahepatic cholangiocarcinoma in February of 2015 by a 6 cm tumor in the right lobe of my liver. Resection surgery in March 2015 (at Queens Medical Center in Hawaii) removed the tumor, followed by 12 cycles of cisplatin and gemcitabine which took six months. Two months later another tumor was found adjacent to the location of the previous tumor. This second tumor was removed (at MSKCC in NYC) on March 23 of this year and now I have a small tumor in each lung that has grown from 2 mm to 5 mm in two months. Requested for but have not had mutation testing done on either of my removed tumors. My CA19_9 is 9 (it was 108 for the original tumor and 7 for the second tumor) and CEA is 3.4 (it was 2 for the original tumor and I’m not sure what it was for the second tumor).

    Looking for a phase 2 clinic trial however they are saying that my current tumors are to small, it needs to be at least 10 mm or 1 cm.

    V/r,
    Layne

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