Our visit to Stanford Radiology Oncology and next steps

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  • #63233
    marions
    Moderator

    Anne….make sure to watch the heat setting. It can’t be too hot. And, please keep us posted.
    Hugs,
    Marion

    #63232

    Thanks Marion, I will get a heating pad for mom.

    Thanks Percy, I will try the herbal soup!

    Anne

    #63231
    pcl1029
    Member

    Hi,
    Yes, that Yunzhi capsule is all I take as supplement in additional to vitamin D3 200 units Twice daily. I take 4 caps twice a day when I am on the off week of Xeloda and 2 capsule twice a day when I am on Xeloda. I take them 2 hours apart from each other.
    The herbal soup I mentioned is the soup and not the herbal medicine prescribed
    by the herbalist. the herbal soup (ie: like the bi-chun(eight precious) tong
    (soup) with chicken or the (perfect 10 soup) all these you can buy in a Chinese grocery store that come as a package with all the ingredients and instruction on the label, all you have to do is add a couple pieces of chicken or lean pork, a dash of salt to taste and following the instruction and then when it is done, it smell so good and all the members in the family can have a bowl of soup too. that is the kind of herbal soup I am talking about; take twice a week to restore the Qi and decrease the fatigue that your mom have.
    God bless.

    #63230
    marions
    Moderator

    Anne…..The right shoulder pain is not uncommen with this cancer due to the neves involved with the liver and bile ducts. We also call it “referred cancer pain.” A heating pad and/or minor pain medication may help. The upcoming CT scan will shed a light on the situation.
    Hugs,
    Marion

    #63229

    Thanks Percy,

    One of mom’s fiends brought her this super mushroom supplement called yun-zhi from Hong Kong, mom takes them when she remembers. If I’m not mistaken, you are also taking this supplement. We have not looked into the herbal soups at the moment, I know she will hate the taste but I will look into it.

    Anne

    #63228
    pcl1029
    Member

    Hi,
    Oncologist may NOT always know about the rapid development of the interventional radiology. If no mets outside the liver, radioembo may be worth to take alook;the same apply to chemoembo too. Standford it the place to go if you decide to take a 2nd look.:Just go to their web site and type “interventional radiologist”,and you will find some info. about the procedure.
    If they say no,ask for the reason why not so you can understand more about your mom’s disease state.
    xeloda/oxaliplatin ( CAPOX)is much easier to take then Gem/cis. ;make sure you ask the oncologist if he/she offer GEm/cis and compare it with CAPOX to get the pros and cons first.
    I am just like your mom ,an intrahepatic CCA patient for the past 37 months.
    It is only by God’s Grace that I can still be here today.
    I hope for the same thing for your mother too. I will say a prayer for your mom tonight .
    The most important thing of all is that, if you try your BEST in helping your mom to fight this cancer,try to find the best possible treatments for your mom,then you will have NO regret and you can sleep well each night. and this is also the motivation I have everyday to help myself in search of the possible “magic bullet”.It is also a good idea if your mom or relatives know about using Chinese herbal soup to boost the overall strength of your mom’s body.
    God bless.

    #63227

    Hi Percy,

    Thank you for your reply, I did not think of asking about chemoembo or radioembo at the consultation today. I will for sure ask about them. I did ask about chemoembo at UCSF, her oncologist said it wasn’t an option at the time, I don’t know if it’s because she did not respond well to gem/cis, xeloda/oxaliplatin combos? I will ask about them again at the next visit. As far as I know, mom’s cancer has not metastasis outside the liver. She has this right shoulder pain, they ordered X-Rays to see what is going on there, still waiting for the results.

    I’ve read a lot of your posts and they are so informative and helpful, I feel truly blessed that you are on this board!

    Anne

    #63226
    pcl1029
    Member

    Hi,
    1. Did you discuss about chemoembo or radioembolization with Dr.Koong
    and what did he/she said why it cannot be done on your mom? Is it the bilirubin too high or something else?
    2, Did you mom has other health issues that prevent to have the chemoembo or radioembolization?
    3. Did your mom has metastasis outside of the liver?
    Standford is well known for its interventional radiology and Dr.Koong is graduated from Northwestern Univ.and he should be familiar with radioembolization.
    Base on your message on this board,if all the above answers are all NO.
    then you should talk to the”interventional radiologist” at Standard or UCSF about the procedure.
    God bless.

    #7153

    Mom and I came back from our appointment with Dr Koong at Stanford, did not get the news I was hoping for. They reviewed mom’s records/scans and explained to us, there isn’t any radiation treatment that they can offer. Dr Koong said due to the multiple locations of the tumors, he does not have anything he can do safely and effectively to treat them. So sounds like radiation is not in mom’s future.

    We did get a referral to see Dr Cho-Phan who is a medical oncologist at Stanford to see if she can recommend any treatment options. We are waiting to get an appointment scheduled.

    Our next visit with our UCSF oncologist is 08/06 and I will be asking about clinical trials again. Before mom’s bilirubin level was out of whack, we had a visit with the clinical trial doctor at UCSF. Mom may be a candidate for the following study: http://clinicaltrials.gov/ct2/show/NCT01543763 I will ask about the trial again in our next visit.

    I’m hoping between Stanford and UCSF, someone will be able to come up with a game plan. I am an optimistic person by nature, but it’s getting really hard with this awful cancer.

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