Some newbie questions

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  • #58938
    Eli
    Spectator

    Matt,

    Regarding the transplant option mentioned by Cathy. Here’s an easy to read article with some great info.

    Curing cancer by replacing livers!
    http://www.ksat.com/news/Curing-cancer-by-replacing-livers/-/478452/9222812/-/gsrjbc/-/index.html

    The article says that transplant option is reserved for patients who can’t have a regular resection (due to shortage of transplant organs). If your sister has a resectable tumor, she might not be able to qualify for the transplant. I’m not sure if all transplant centers have the same policy. Something to keep in mind if you decide to pursue this option.

    #58937
    jathy1125
    Spectator

    Matt-You already know more than you think, different doctors have different opinions on chemo. My trial involved chemo and my doctor told me to expect little or no results. I suggest you start asking about transplant option, that is what made me cancer free. Transplants are still controversial, so you need to have it ruled out by a doctor who believes it is an option, many still don’t think it is. I was inoperable and 6-8 months to live at my diagnose and I will be now 3 years cancer free May 24, 2012!!! You also might want to listen to the MD Anderson podcast, that was posted on here last week, very interesting and informative. I also have 2 great CC transplant stories posted on my FB (Catherine Sims Dunnagan) they will give you HOPE.
    Lots of prayers-Cathy

    #58936
    peggyp
    Member

    Hi Matt,

    I am so glad you are being such an advocate for your sister. Knowledge is power. Research and ask questions over and over. My husband had a resection in August ’08. The surgeon was confident that he had gotten everything. In December ’08, two small spots showed up on the part of the liver that wasn’t taken. Not knowing what they were, the doctors decided to wait until his next scans in March ’09. By that time, he had multiple tumors which have been treated with three different chemo cocktails. He just had a chemoembolization done three weeks ago and we should find out this coming Thursday if that had any effect on his tumors. He’s scheduled for an MRI at UVA and then we see the doctor that was in charge of his procedure after that. We were told from the beginning that chemo and radiation were not options. Had we known then what we know now, we would have insisted on chemo after his resection. All we can do now is take one day at a time and hope that God will continue to give him many more days. Tell your sister to stay strong and keep a positive attitude because I believe attitude plays a big role in fighting this terrible disease. Lots of hugs, PeggyP

    #58935
    jim-wilde
    Member

    A really good, experienced surgeon will not be surprised very often.

    I generally agree with Eli and Lainy as well. If you qualify for surgery, then you have to hope for some luck as well.

    #58934
    lainy
    Spectator

    Dearest GHM, yes it happens and I remember the first thing Teddy’s surgeon told us was, “I will not really know what is going on in there until I see it!” I try not to be negative o9n this Board BUT this CC is such a monster and that is why it is so imperative to go to a Hospital/Surgeon that is familiar, really familiar with CC. Hope you are doing OK!

    #58933
    Eli
    Spectator

    Goodheartedmommy, I am sorry. Abandoned surgery is a devastating event. I didn’t mean to downplay the frequency with which it happens.

    #58932

    To respond to the previous poster, my dad went to have his small tumor resected, only to find out it was far too large to resect.

    #58931
    Eli
    Spectator
    Matt wrote:
    – cause? genetic or hereditary factors?

    In the mast majority of patients, the cause is unknown.

    CC has the following risk factors:

    General

    Age >65 years
    Obesity
    Diabetes

    Inflammatory Diseases

    Primary sclerosing cholangitis
    Hepatolithiasis (oriental cholangiohepatitis)
    Biliary tract stone disease
    Biliary-enteric anastomosis
    Liver cirrhosis

    Infectious Diseases

    Opisthorchis viverrini (liver flukes)
    Clonorchis sinensis (liver flukes)
    Hepatitis C
    Hepatitis B
    HIV

    Drugs, Toxins or Chemicals

    Alcohol
    Smoking
    Thorotrast
    Dioxin
    Vinyl chloride
    Nitrosamines
    Asbestos
    Oral contraceptive pills
    Isoniazid

    Congenital

    Choledochal cysts
    Caroli’s disease
    Congenital hepatic fibrosis

    Many patients have what doctors call “sporadic” disease: they develop cancer even though they don’t have any of the known risk factors.

    A few hereditary genetic disorders are known to increase CC risk. However, they are very rare.

    Matt wrote:
    – why some say chemo is not effective, while others say it is?

    Genetic mutations vary from patient to patient. Each tumor is somewhat unique. Some patients have an excellent response to chemo. Others do not.

    Matt wrote:
    – how often people go in for surgery after scans have shown only a small tumor, only to find out it has spread to other organs or other parts of the liver?

    I’ve been on this board for almost a year. I recall only one such case.

    Matt wrote:
    – recurrence after successful resection?

    Unfortunately, recurrence after surgery is common. One of the reasons why CC is so hard to cure.

    #6521
    justmatt
    Member

    Greetings. My sister has CC and is getting surgery scheduled. Does anyone know about the following:

    – cause? genetic or hereditary factors?
    – why some say chemo is not effective, while others say it is?
    – how often people go in for surgery after scans have shown only a small tumor, only to find out it has spread to other organs or other parts of the liver?
    – recurrence after successful resection?

    Thanks for any info, whether it is personal, anectdotal, or opinion. Y’all are wonderful!

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