pcl1029

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  • in reply to: My Mom’s Story – ICC #78281
    pcl1029
    Member

    Hi,

    You can find the results under gene testing for C-met/VGFR2 .
    Base on your mother’s liver pathology, chemoembolization or segmental radioembolization will be the best choice for such case. Instead of asking for a oncology radiologist for consult, you should also ask for an interventional radiologist consult since that is what they specialized in radioembo and chemoembolization..

    However, according to NCCN guidelines, for advance unresectable
    cholangiocarcinoma, clinical trial is recommended whenever possible.

    So you mom still have 2 options to choose from.

    God bless.

    in reply to: Hopeful!!! #78306
    pcl1029
    Member

    Hi, Melissa,

    I remembered about one and half years ago, a young men in the early 20’s had liver transplant (again PSC was the risk factor) at Mayo Clinic. He communicated with me for quite a while via e mail. He told me the explant (the liver that surgeon taken away from his body.) later was discovered cancer cell in it even he went thru the neoadjuvant chemotherapy before the surgery.
    the link below was his story.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=62757#p62757

    God bless.

    in reply to: My Mom’s Story – ICC #78279
    pcl1029
    Member

    Hi,

    1.You did not mention the number and sizes of the tumors; In general, if the tumors are less than or equal to 4 and the sizes are <3cm each; and if the locations are allowed for microwave ablation or RFA ; then this route may be a lot easier to take instead of FOLFOX chemotherapy. Please consult an interventional radiologist for this option first if possible.
    2. I believe Mass Gen hospital will automatically do a biopsy of the ICCA tissue sample and have done a Foundation One report for the tumor already. Is that why they(MGH) suggested your mother may be qualified for cabozantinib clinical trial. if so, then I will go for the clinical trial first. ; it is taken by mouth, far much easier than FOLFOX.

    God bless.

    pcl1029
    Member

    Hi, Gavin,

    Good article ,thanks.

    God bless.

    in reply to: Questions about the next step forward #78282
    pcl1029
    Member

    Hi,

    If your mom had done the Foundation One or Target report and it shows over-expression of C-MET and/or VEGFR2 ,then it may be a good idea to delay the chemotherapy . Otherwise I don’t think it is as good idea.

    The reason is that you may not know whether your mom qualify for the clinical trial of XL-184 or not; and they will do labs on your mom to find out ;interview your mom will take a lot of time(ie: see the trial exclusion list, you mom may need to do more test etc. there are lots of questions to be answer.and it will take time.)

    God bless.

    in reply to: Waiting…… #78263
    pcl1029
    Member

    Hi, eeveryone.

    to answer the above please check link below

    http://www.ncbi.nlm.nih.gov/pubmed/23169523

    Also GI consult is recommended by my doctor friends in the hospital.

    God bless.

    in reply to: May be It Will Be for Us too.(News About Immunology) #77829
    pcl1029
    Member

    Hi, you are always welcome,
    And if you can bring your sister to see me at the symposium ,that will even better, sometimes if patient seeing other patient with the same problem, they may be more open to talk about it and knowing that they are not alone in fighting this disease, therefore may change their attitude . I cannot promise but I am sure sincerity with my understanding about this disease will be helpful to your sister .

    God bless.

    in reply to: Cat scratch #78237
    pcl1029
    Member

    Hi, Sandie
    Ask interventional radiologists whether they can use cryoablation or IMRT or IRE to treat the lymph nodes mets for you. It is not conventional, but I have one lymph node done with cryoablation and it is stable.

    God bless

    in reply to: Waiting…… #78262
    pcl1029
    Member

    Hi,
    I think things in General should be ok for your husband based on the 2 lab work you post. Do been to worry too much.
    However, some how the hydration and electrolytes balance pop up in my mind.
    Therefore ,the following discussion is more for that purpose whether than your husband in general.

    Besides the total bilirubin is high 2.8 but may be affected by the chemotherapy; the ablumin is a bit low but your total protein is normal. the others like AST,ALT and ALK phosphatase are relatively normal for a CCA patient.Does your husband have diarrhea problem? how many times if so? then hydration will need to be addressed; if not ,I will still ask the doctor what to do .
    I quoted from an article about fluids balance in our body.so it may help in understanding the fluids balance importance. This is out of my experience and research range; I may actually go too deep on this subject this time;However, I think is important to know how to manage the hydration status while have ascites etc.
    the quote is below from
    http://www.nursingcenter.com/lnc/static?pageid=720126

    “Albumin is produced by the liver. Among its many functions are its ability to maintain intravascular oncotic pressure. To facilitate movement of fluid throughout the body, facilitate transportation of substances, and act as a free-radical scavenger. Levels of albumin depend on wellness or disease state of the body.When it comes to hepatic disease, acute hepatitis, or cirrhosis, albumin levels do not correlate well with the severity, prognosis, or level of total hepatic function.3 The parenchymal damage or loss has to be severe to affect the liver’s ability to synthesize albumin. The mechanisms responsible for the decreased albumin levels seen in most cases of hepatocellular disease include increased immunoglobulin levels; third-space loss (extravasation into the extravascular space); and direct inhibition of synthesis by toxins.”
    God bless.

    in reply to: May be It Will Be for Us too.(News About Immunology) #77827
    pcl1029
    Member

    Hi, willow,

    In addition to the email info. here is about what is the TIL in NIH .

    “Adoptive Cell Therapy

    Beyond antibodies, it is also feasible to transfer effector cells as passive immunotherapeutics, though the acquisition, manufacturing, and re-administration of these therapies are significantly more difficult than that of monoclonal antibodies (Restifo et al., 2012). Initially, adoptive cell therapy (ACT) was developed to utilize tumor-infiltrating lymphocytes (TIL) from surgically resected tumors in patients with metastatic melanoma. Melanoma-specific T cells within the TIL preparation could be expanded ex vivo via co-culture with patient tumors in the presence of the cytokine interleukin-2 (Rosenberg et al., 2011). Re-administration of these T cell products back into the donor patients resulted in remarkable responses: 72% of patients experience objective responses and 40% of patients had complete regressions (Rosenberg, 2011). “

    with regard to immuno agents, I think I have mentioned them in the email; please remember, none of them are for CCA, but hopefully “off label” use can be of benefit to CCA as well.

    Enjoy the trip too.

    God bless,

    in reply to: Waiting…… #78254
    pcl1029
    Member

    Hi, Brenda,

    For the health condition as your husband, the CBC panel looks relatively normal;

    Due to the diarrhea may be a problem, I think your husband has a hydration problem and needs doctor’s attention at this point.the Hct is lower than normal based on the lab;but since he has acsites ,therefore you need to ask doctor what to do with regard to this problem. .since I believe the fluids is not in the right place even there may be a lot in ascites.. ( Please remember, I am only a patient ,like your husband,I am not a doctor; this is the time to ask the doctor whether your husband is hydrated enough and how to deal with the ascites at the same time.
    WBC,RBC among others are low but not too bad;remember your husband is sick ,so we cannot expect everything is within the normal range of a healthy person. The platelets (PLT) is too low for chemotherapy (ie:<75,000/100,000).
    However, the BMP you did not mention is more important(ie:AST,ALT,ALK Phosphous,albumin ,BUN/Creatinine ) for CCA.

    God bless.

    in reply to: Waiting…… #78250
    pcl1029
    Member

    Hi,
    Let’s wait till the next scan result to see what else the doctors can do. If all the tumors are dead, then you may not need to worry about the CCA but only the cirrhosis and ascites. Otherwise, systemic chemotherapy or targeted therapy or clinical trails may be appropriate as well as doing nothing is also a choice too.

    God bless.

    in reply to: My mom’s scan result #78227
    pcl1029
    Member

    Hi,
    I believe you should get a 2nd opinion on medical oncology at Mass General or John Hopkins .
    I believe if mets in liver, intestine and lymph node, you need systemic chemotherapy or targeted therapy. The goal to seek 2nd opinion at Mass General is that there are a couple clinical trials that the patient can have over there if she fulfills the clinical trial requirement.
    NCCN recommended clinical trials for unresectable patient of advanced CCA.

    Since all chemotherapies are “palliative” in nature; If I were in your situation, I will not trade for that extra 5-10% margin to be on FOLFIRIN . The toxicity is not acceptable for me to get a couple more months in return for the less quality of life. But everyone is different when they HAVE TO face these difficult chemotherapy choices. It is not easy for sure. That is why whenever possible, consider clinical trials is not a bad idea.

    God bless.

    in reply to: May be It Will Be for Us too.(News About Immunology) #77825
    pcl1029
    Member

    Hi,
    Please check e mail.

    God bless.

    in reply to: Cat scratch #78232
    pcl1029
    Member

    Hi,

    May the Grace of God shower upon you and easy your suffering.
    Sorry, I never came across the relationship of “cat scratch fever” as a risk factor for CCA in reading the medical articles.
    But the fact that the bacteria that cause “cat scratch fever” can affect the liver and spleen may lead me to believe that there might be a chance of a chronic infection (ie: like hepatitis B/C) had been developed overtime.This is my own guess only .and in no way there is any proof on the assumed concept

    God bless.

Viewing 15 posts - 76 through 90 (of 1,667 total)