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  • July 19, 2011 at 8:23 pm #51712
    jladams
    Member

    Hi CG,
    I go to Hopkins for follow up on the chemoembolization treatment I had in March. I am very happy with Hopkins. I cannot have surgery. As PCL informed you-that is the first choice.
    I did see a surgeon at Hopkins named Dr. Pawlik, he does many liver resections.
    The doctor who did my chemoembolization was Dr. Geschwind-he has written many articles on the subject. JH has a diffusion MRI machine that can tell if your tumor is dying. I have some tumor death.
    Wishing you all the best. Sincerely, Johanna

    July 19, 2011 at 7:37 pm #51711
    pcl1029
    Member

    Hi,CG,
    Here are additional info. you may want to know;
    Again this is for information purposes only.

    1. If you can have resection that will be the first choice if I were you.
    2. Orthotopic Liver Transplantation (OLT) based on Mayo clinic data has a five-year survival rate of 82% for selected CC patients who had unresectable CC and a history of primary sclerosing cholangitis.(PSC).And if your tumor can be resected as what is appeared to be the course of treatment at JH now;I will continue the treatment at JH till the next CT scan or MRI result;the reason is that if your liver can be resected you may not be qualified for OLT. and there are lots of test and waiting before the actual transplantation take place.By that time you may miss the opportunity of resection at JH.
    ” Liver transplantation has a poor outcome for patients with intrahepatic cholangiocarcinoma and is generally not recommended unless in the context of an approved trial protocol.”–Apr.2011 vol.8 Gastroenterology & Hepatology by T. patel.
    OLT has a better outcome when it was done on early stage of unresectable hilar CC after neoadjuvant chemo therapy. and recurrence is common in both groups.
    God bless.

    July 19, 2011 at 6:46 pm #51706
    c_green
    Spectator

    Thanks to everyone who responded. I don’t know all the answers to PCL’s questions, but I will find out. Both treatment plans include resection. U of MD first mentioned a transplant, but the transplant surgeon seems to feel resection would be sufficient. I am checking out all the information provided.

    Thanks again. I look forward to more posts.

    CG

    July 19, 2011 at 5:43 pm #51710
    jathy1125
    Spectator

    CG, Welcome and sorry you had to find us. I am a CC survirvor. I am alive and 2 years cancer free because of a liver transplant. I was treated by Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Barnes is considered a CC treatment center, which are very rare. Dr. Chapman is in the top 100 doctors.
    Transplantation is considered the only cancer free cure for CC. Please make sure that is an option, and if ruled out, make sure it is done by a doctor/hospital that believes in this trial.
    Please read my story at thetelegraph.com under christmas miracle, it is full of hope. I also have it posted on my FB page (Catherine Sims-Dunnagan) along with another CC survivor treated by Dr. Chapman. Please consider calling him or Mayo to discuss transplant.
    I am alive because of God, two strangers and Dr. Chapman. Please feel free to contact me if I can help or if you have questions.
    Lots of prayers-Cathy

    July 19, 2011 at 5:34 pm #51709
    pcl1029
    Member

    HI,
    If I may ask a few more questions so I can understand your CC better.

    I am not a doctor, I am just a patient so consult your specialists or doctors is a must before changing treatment plans.

    1.Why surgery is not offer at JH? What stage 2, or 3?just one big one and do you know what segment of the liver the tumor is on?

    2. I guest 6.2cm is not a really big tumor(you give just one dimension,normally is like 6.5cmx5cm), and if not metastasized ,resection and/or ablation is the current recommendation of the medical community in the States if the tumor is resectable .So find out why this is not offer to you first?

    3.From what I can read,it looks like JH wants to shrinks the tumor down to the acceptable size in order to provide a better clean and safe margin for a better outcome of the resection and that is nothing wrong with that.A MRI with contrast 3 month after your diagnosis is a good idea to check the progress of the JH treatment.go to the experience forum of this web site and look under “the ultra sound,CT scan and MRI and PET/CT” entry to UNDERSTAND each unique function,it will help you a lot to know what and why the doctors are ordered such test in the future.Trust me,it is very helpful to me.

    4.What systemic chemo they used in JH? can you name them for me?
    and what and how they “direct inject chemo agents to the tumor?” what is the procedure name? is it called chemoembolization(TACE)? it will help if you know the exact procedure names so I can provide you more info about your situation.

    5 .Is it because the tumor is so close to major organ,portal vein and major arteries that cannot offer resection first at JH? If you do not satisfy with the treatments provided and want more options now, I will suggest you to seek 2nd surgical opinions by.Dr.Chapman in St.Louise or Dr.Kato in NY.They both are well known for their surgical skills from what I heard from this board.
    God bless.

    July 19, 2011 at 4:30 pm #51708
    32coupe
    Spectator

    CG,
    Welcome to our ‘family’ forum. You are wise to seek multiple opinions. Particularly if treatment can lead to a resection. Resection seems to be the only long term solution. Praying for long term success for you.

    God Bless!
    bob

    July 19, 2011 at 3:35 pm #51707
    lainy
    Spectator

    Welcome CG, to our wonderful family but sorry you had to join us. I would say you are doing very well and the big part is that you feel you are getting what you need at JH. This is why 2nd and 3rd opinions are so important. Your treatment goes hand in hand with a good attitude and we always try to be realistically optimistic. I just wanted to welcome you and I know others will be chiming in as well. Keep up your good work and please keep us informed on your progress.

    July 19, 2011 at 2:50 pm #5448
    c_green
    Spectator

    Hi. I was diagnosed about a month ago with intrahepatic cc. My tumor is 6,2 cm. with no metatisis or lymph node involvement per PET/CT. This site is awesome for information and real life experience. I am so glad I found it. I am hoping that someone can help me with deciding on my treatment plan. I was intially diagnosed at U of MD and they prescribe Xeloda combined with external radiation, then possible resection. I received a 2nd opinion at Johns Hopkins who use chemo directly into the tumor in combination with a systemic chemo; possible. resection. JH seems to be more organizred and responsive than U of MD. U or MD care was also disappointing as a patient.

    I know that only I can make the treatment decision, but any experiences with different treatment plans or information would really help me with this difficult decision.

    Thanks in advance. Everyone on this board seems so nice and helpful.

    CG

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