Discussion Board Forums Introductions! Help needed…much appreciated!

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  • #92977
    chinesechick
    Participant

    We are still in Taiwan and after more research, I found a doctor/researcher from another hospital that did research on Keytruda and presented his findings in a conference in Europe last year. I emailed him and he informed me Keytruda is available in Taiwan, but its out of pocket expense. Hoping to get an appointment earlier than 10/27.

    I’ve read Keytruda works best with PD-L1 gene…but anyone had positive results with Keytrude without having PD-L1 gene?

    I also found a clinical trial here and will be contacting the lead investigator tomorrow.

    Fingers crossed!

    #92978
    chinesechick
    Participant

    Hi Debbie,

    Dr. Javle did recommend Keytruda and said others have positive results.

    I contacted the Hawaii Principal Investigator for MATCH. He was awesome. Emailed back and called me within a few minutes. Dr. Berenberg recommended an oncologist in Honolulu, who I will call in the morning.

    Mahalo, Nancy

    DebNorCal wrote:
    Nancy, I am sorry the trials didn’t have good results for your mom. If Dr. Javie thinks Keytruda may work for your mom, I hope you can find a way to get it for her.

    Sending positive thoughts to your mom.

    Debbie

    #92979
    debnorcal
    Moderator

    Nancy, I am sorry the trials didn’t have good results for your mom. If Dr. Javie thinks Keytruda may work for your mom, I hope you can find a way to get it for her.

    Sending positive thoughts to your mom.

    Debbie

    #92980
    marions
    Moderator

    Nancy…are you contemplating returning to the US?

    Sorry, this crossed while you were typing your post. Also wondering whether your Mom could get into MATCH or TAPUR study.

    Hugs,
    Marion

    #92981
    chinesechick
    Participant

    Hi Marion,

    Yes, my mom and I are currently in Taiwan. She was diagnosed with cc during her trip here back in March…been here since. We were originally from Taiwan…moved to Hawaii almost 40 years ago. Good thing we still have lots of family here :)

    marions wrote:
    Nancy….is your Mom in Taiwan at this time?

    Hugs
    Marion

    #92983
    chinesechick
    Participant

    Thanks Lainy.

    Actually, we are definitely looking into going back to Hawaii. I have already contacted a family friend, who is an oncologist back home.

    Also sent Dr. Javle and Dr. Chapman the CT images.

    Gotta be fighting!

    Lainy wrote:
    Dear Nancy, I am so sorry to read this about your Mom, I know you both are strong fighters and you have done everything the right way. My only thought is, would it be possible to bring Mom back here with you? I know you have been with her in Taiwan. Not sure if she is able to travel. It is not because they are not doing enough for her but all ONCs an see things differently. I am sending you my best thoughts. Hang in and hang on!
    #92982
    marions
    Moderator

    Nancy….is your Mom in Taiwan at this time?

    Hugs
    Marion

    #92984
    lainy
    Participant

    Dear Nancy, I am so sorry to read this about your Mom, I know you both are strong fighters and you have done everything the right way. My only thought is, would it be possible to bring Mom back here with you? I know you have been with her in Taiwan. Not sure if she is able to travel. It is not because they are not doing enough for her but all ONCs an see things differently. I am sending you my best thoughts. Hang in and hang on!

    #92985
    chinesechick
    Participant

    My mom just had another CT scan 2 days ago. She’s been on her 2nd clinical trial (Varlitinib ASLAN001-005) since beginning of August.

    After a week on this chemo, she developed high fever and chills suddenly one night and I rushed her to ER. Doctors admitted her for a week for observations. She was off the pills during this week but restarted after being discharged. Another week on the pills and then she was experiencing diarrhea, so off the pills again a week for observations.

    Anyways, the scan did not show any reductions. The results were the opposite. Her tumors increased in size. We were so crushed to hear the results today.

    …but about a week ago, I had a phone consult with Dr. Javle. He recommended Keytruda and also genetics analysis. I have already contacted Foundation Medicine but looks like the tissue samples completed in Taiwan is too small to be analyzed.

    I asked the doctor today about Keytruda but was told its not available here.

    Thought with CC rate higher in Asia, there would be more treatment options. The 2 clinical trials my mom was on are only available here. Wished they had positive results, but sadly, they didn’t.

    #92991
    chinesechick
    Participant

    Hi Debbie,

    I asked the doctor today. He said molecular profiling was not done but he can refer us to another doctor for this procedure.

    I also asked about gem/cis. He said they did not use this as it only has approximately 15% success rate. From what I’ve been reading, gem/cis is the first treatment plan for those diagnosed with CC. Maybe the doctors and procedures are different here?

    Nancy

    #92990
    debnorcal
    Moderator

    Nancy, welcome to our family of caring folks that have all been affected by CC. I am sorry your family is dealing with this.

    Do you know if molecular profiling has been done? If the doctors know the particular gene expression (s) in your mom’s tumors, they may be able to match her with a trial or treatment that is producing good results in shrinking similarly expressed tumors.

    Debbie

    #92989
    chinesechick
    Participant

    Thank you Catherine for the link. I’ve been reading and researching night and day the last couple of weeks.

    I just obtained the ER report from home.

    Findings: small mild somewhat patchy opacities in the lung bases bilaterally.

    Fatty liver. Cholecystectomy. Poorly defined masslike area in the central right lobe of the liver measuring at least 5cm. There is mild to moderate intrahepatic biliary ductal dilatation peripheral to this area. This masslike area constricts the right portal vein. Small amount of air in the biliary tree mainly on the left. A 2cm cystic structure in the right lobe of the liver may be a cyst or a focally dilated intrahepatic bile duct.

    I’m going to request the medical reports from the hospital here…hopefully they are able to provide them in English.

    Nancy

    #92988
    middlesister1
    Moderator

    Nancy,

    So sorry we we have to welcome you to our group, but we’re glad you found us. There are very few who have even heard of CC when they or a loved one is diagnosed. If you haven’t yet, there is information on the homepage with information for those newly diagnosed.

    http://cholangiocarcinoma.org/newly-dx/

    Best wishes,
    Catherine

    #92987
    chinesechick
    Participant

    Hi Lainy,

    Thank you for that information. My family lived in Taiwan but moved to the U.S. about 40 years ago and traveled frequently back to Taiwan. I will do more search about this liver fluke.

    This whole thing came on so suddenly that I appreciate any insight on this disease and any other helpful information.

    Thank you again, Nancy

    #92986
    lainy
    Participant

    Dar Nancy, welcome to our remarkable, smart and loving family but sorry you had to find us. We STILL are the best place to be for CC.
    I cannot be of help with trial but wanted to say YES, CC is very high in Asia. Some of that we know is from a parasite called liver flukes found in a fish (can’t remember the name) but if you Google liver flukes it will give the name of the fish. My husband got CC at 73 and I just know it was that parasite from when he served in Korea. It adheres to the bile ducts for 30 – 45 years and when it leaves it leaves behind CC. It cannot be detected during those years until after it leaves and it is truly a monster far beyond the size of the parasite! The big problem is that the fish is considered a delicacy and is not properly cooked.
    I am wishing and hoping for some good luck with Mom and please keep us posted on her progress as we are a great nosey bunch. Nosey is welcome here!

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