Mom’s update

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  • #52492
    kavita1
    Member

    Thanks for all your great advice. We’re hanging in here, and praying she gains enough strength to travel. Much appreciated.

    #52491
    marions
    Moderator

    Katvia….Unless your mom is able to supplement her food intake via mouth weight gain is unlikely to occur.
    Regarding radiation treatments I would try to contact Dr. Dawson.
    Being that you are physician contacting her should be easier. However, let me know if I can be of help to you.
    Laura Dawson, MD FRCPC
    Associate professor,
    Dept. of Radiation Oncology,
    Princess Margaret Hospital
    University of Toronto
    Toronto, Ontario
    phone 416-946-2125
    fax 416-946-6566
    Hang in there, Kavia.
    All my best wishes,
    Marion

    #52490
    pcl1029
    Member

    Hi,
    The following message is from deedlebug 120 under introduction forum on 8/16/2011 12:05.
    “My husband went in for weekly blood work and once the blood work was within a working range, they booked the surgery for the following Thurs February 9. On the eve of the surgery my husband complained of pain and fever so i rushed him to Sunnybrook ER where they diagnosed a very bad infection in his liver from his drainage tubes. The next morning he was brought to the OR for what turned out to be an 11 hour surgery.

    Dr. Hanna said that he normally would not operate on a patient with a bad infection but he would not have lived until the day without it so he went ahead. He said they both had angels with them that day! The removed his billiary system, his left lobe and most of his right lobe, leaving him with approx 30% of his liver and rebuilt the billiary system with intestine. They had clear margins but were within 1mm of the cancer. My husband remained in surgical recovery for 3 days after the surgery before he was transferred to ICU. The moved to Surgical Oncology ward after another 2 days in ICU. Around day 7 his liver started to fail but they just said to wait and see

    #52489
    lainy
    Spectator

    Kavita, I feel just terrible for your family! I am in Phoenix and I just want to tell you that our Mayo Clinic here has been really rising to the top with treatment of CC. There was a big article in our paper about 3 months ago on how they are doing many liver transplants for CC. The reason I bring this up is Phoenix may be closer for your parents than the East Coast. We are also getting Banner MD Anderson opening up the end of this month. It is just unbelievable how your Mother has been treated. I hope your Mom gets strong enough soon so that she can get some proper care. Very special hugs and prayers going out to your family.

    #52488
    kavita1
    Member

    Yes Lainy, I agree. I am a physician myself and it comes as a major shock the whole way that our family has been treated. We never expected special treatment, just the honest truth would have been nice. The surgeon also told my mom he got the whole tumour last year and that she didn’t need any chemo or radiation, this is unfortunately part of the reason why she was so reluctant to get radiation at Memorial Sloan Kettering last year. Of course it was my mom’s decision in the end, but the surgeon’s voice was heard over ours. There has been much passive aggressive behaviour and intimidation from her team to our family and it has been tough. My poor Dad is sooo broken he doesn’t have the energy to stand up to. Trust me, I am working as hard as I can to get her to another care centre in the States. She is so unstable right now and is not ready for travel, but I am hoping in another couple of weeks we can take her elsewhere. Our journey has been more than awful.

    Thanks for you support…

    #52487
    lainy
    Spectator

    Kavita, I’m just shocked at all your Mom has been through. Not sure I have heard of such an awful journey before. I would move oceans to get her to another hospital for treatment. I am sorry but a doctor who says he did a brush biopsy then says he didn’t would make me nervous. Kavita, please be strong
    and please let us know what happens for your mother. We all care.

    #5608
    kavita1
    Member

    Hi everyone,

    Just thought I would update you on mom’s progress. So she had a liver resection complete left and partial right for a 6 cm chonlagio last July 2010. Since then she has suffered many complications, bile duct leaks, septicemia and required a second surgery but then she recovered. She came home and started gaining weight and doing better, although she went home with the bile bag which caused some problems. She refused the radiation therapy offered to her last year and only did 6 weeks alternating of Gemzar and Xeloda chemotherapy and had to stop due to recurring hepatitis and cholnagitis infections. She was readmitted this Feb to March for a month for treatment of the infections and that point nothing else was done. The surgeon told us he did brush biopsy, but then two weeks later he told he didn’t do the brush biopsy! So they were unsure of what to do, they sent her home with a pip-tazo antibiotic pump for almost 12 weeks and she did end up developing resistance and had to be switched over.
    Then she ended up back in hospital in May for 3 weeks due to an upper GI bleed and needed 11 pints of blood transfused. She then came out and felt better once they sourced the bleed, which they say they biopsied and it was negative, but we’re not sure what that means anymore. This whole process has been frustrating nonetheless, especially since we are a medical family and understand when mistakes are being made!

    Now she has had a 2 by 2 cm recurrence at the cholejejunal junction this past July 5th and has been in hospital ever since. She has had multiple infections, turned jaundiced, and they took lymph nodes biopsies of her paraortic nodes (in her abdominal cavity near the tumour) and they were negative! But the recurrence is very near to the hepatic artery and so the surgeon said he couldn’t take it out. They first offered brachytherapy but then said they couldn’t get to the tumour to place the brachytherapy bead. And now she is on TPN and jejunostomy feeding and they say she needs to gain weight before they are going to irradiate her entire liver 10 by 10 cm field! And that’s the only option they have offered. They have not offered focussed radiation options. We feel this is possibly too aggressive given that she only has a local recurrence, however they keep saying she isn’t “strong enough” to get the radiation therapy. To top it all off, my poor sweet mom is having blood infections and is on pip-tazo antibiotics and has hepatic ischemia (which means the tumour is now compressing part of the hepatic artery) which is causing her jaundice and discomfort..She has been in hospital for 2 months now, where all she has had is infection after infection and I am here to ask if anyone out there has ever had radiation therapy such as IMRT or stereotactic radiation or even gamma knife radiation applied to themselves or their loved ones while they were on antibiotics for infections while in the hospital? The reason I ask is we have already asked for a second opinion in Seattle as well as Slaon Kettering Memorial and they are willing to try anything whereas the people here in Canada are using a very conservative approach (which is do nothing at this point because she is too sick)….but I wonder what some of you have experienced in terms of criteria to receive focussed radiation therapy?

    We are looking for help for my mom for prolongation of life as long as possible as we are aware there is no cure yet….

    Thanks for your time..
    Kavita

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