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Thread: Hepatitis C, liver cirrhosis, liver tumors

  1. #1
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    Hepatitis C, liver cirrhosis, liver tumors

    Hello,

    My brother is in his late 60s. Developed liver cirrhosis due to Hepatitis C that was diagnosed around 12 years ago. He has 2 tumors in his liver that are around 2.75in each, so he cannot be accepted for liver transplant.

    Around 6 months ago, he had chemoembolization for the 2 small tumors. After that I started to accompany him to his follow-up consultations with his gastroenterologist, because he doesn't was getting weaker physically and needed help walking. He cannot go outside by himself now. Also because he doesn't understand English that well (complicated words like cirrhosis, etc). His gastroenterologist told me that he had 2 small tumors and I was shocked, because my brother didn't seem to know (and still doesn't know about his cancer) and didn't tell anyone about it. I asked his gastroenterologist if he could get a liver transplant.

    Consultation with the hepatologist
    So 1 month ago, his gastroenterologist had us go consult with a hepatologist and the hepatologist told us that he's not admissible for a liver transplant, because his tumors are larger than the recommended size.
    He told us that we could have my brother get treatment for his hepatitis C if his health improve, but I asked how could his health improve if he his getting weaker. Will he die from liver cirrhosis, hepatitis C or his tumors?

    Back to his gastroenterologist
    We went back to his gastroenterologist and I told him the reason why my brother is not eligible for liver transplant. Then his gastroenterologist basically told us "I thought so, that the tumors were bigger than the recommended size for transplant, but wanted to make sure and wanted you to hear it from the transplant hospital".

    I asked his gastroenterologist the following questions:

    Q1. Why wasn't he treated for his hepatitis C 12 years ago when it was diagnosed?
    A1. "Because the treatment(s) available at the time would have been too harsh on his health".

    Q2. Why were his tumors found only when it was 2.75in each? Why weren't they found much earlier, when it was at a much smaller size? Did his tumors grew that fast in size in between MRIs or echography? He has a liver biopsy in around 2007 in another hospital, what happened to those results? (Or did you or why didn't you order a liver biopsy? I didn't ask that question)
    (The answer I got for this question wasn't clear at all from his gastroenterologist)
    A2. "I'm not sure, of course the tumors could've been found during echography. But we only found the tumors about 18 months ago"

    After this answer, I didn't dare to ask further questions, because I was afraid he would felt attacked by my questions, so he said he will ask the radiologist if another chemoembolization would be possible and then the consultation ended and we left.


    I still have these questions in my mind that I can't stop thinking of :

    1. Why weren't the the tumors found at a much earlier stage? Could his liver tumors had developed from 0 inch to 2.75 inches inbetween MRI?

    2. What were the frequency of MRI that was ordered by his gastroenterogolist?

    3. If a hepatitis C patient had liver cirrhosis for many many years already, wouldn't his gastroenterologist ask for MRI every 6 months or something to check for tumors?


    We have a meeting with his hepatologist soon and I wanted to ask these questions, but I'm not sure what else I could ask. I feel we're letting my brother die (slowly or fast I don't know) from his liver tumors and there's nothing we can do about it. I just wanted to make sure if there was nothing else that could have been done better from his gastroenterologist. I feel something is not right.

    Can anyone comment on this? Thanks for your help.
    Last edited by tfcarrey; 03-30-2015 at 03:40 PM.

  2. #2
    Super Moderator Top User Hope2012's Avatar
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    Hello there. I'm sorry that you've had to find us on the web and that your and your family is going through these hard times.

    I looked at your questions for the doctors and it seems they are all rooted in the past. As much as you may want to ask them, they don't do a lot for your brother going forward. At this point it doesn't really matter why it wasn't caught earlier...what matters are the questions about moving forward.

    I'd ask questions like the following

    1) What are the treatment options moving forward?
    2) What stage is the cancer in? Is it still contained only in the liver? Or has it moved to nearby lymph nodes or other organs?
    3) if a transplant isn't possible, can surgery be done to remove the two tumours? (The liver and tumours can be cut out and the liver will regrow)
    4) how damaged is the liver from hep C? Can anything be done to stop cirrhosis?
    5) when and how often will future scans take place to monitor the efficacy of treatment?


    I hope you can get answers to the questions that matter moving forward. I wish you the best...
    This dark night shall end and the sun will rise again...
    Believe

    - Dad diagnosed in 1992 with primary bladder cancer
    - bladder removed and new one made from resected intestine
    - chemotherapy regimen started
    - mets to large intestines discovered in 1993...more chemo...tumors disappearing
    - complained of neck pain Dec 1994. Mets to brainstem confirmed
    - passed away Feb 24, 1995

  3. #3
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    Quote Originally Posted by Hope2012 View Post
    Hello there. I'm sorry that you've had to find us on the web and that your and your family is going through these hard times.

    I looked at your questions for the doctors and it seems they are all rooted in the past. As much as you may want to ask them, they don't do a lot for your brother going forward. At this point it doesn't really matter why it wasn't caught earlier...what matters are the questions about moving forward.

    I'd ask questions like the following

    1) What are the treatment options moving forward?
    2) What stage is the cancer in? Is it still contained only in the liver? Or has it moved to nearby lymph nodes or other organs?
    3) if a transplant isn't possible, can surgery be done to remove the two tumours? (The liver and tumours can be cut out and the liver will regrow)
    4) how damaged is the liver from hep C? Can anything be done to stop cirrhosis?
    5) when and how often will future scans take place to monitor the efficacy of treatment?


    I hope you can get answers to the questions that matter moving forward. I wish you the best...
    Hi Hope2012,

    Thank you very much for your reply. I had to look online for forums and post something, because I have no one else to talk to about it.

    I will write down your questions and ask them to the hepatologist tomorrow.

    I am so sad and afraid of the moment he will pass away. I cannot think how I could live my life without him in the future. I visit him every day and it makes me so sad and depressed when I look at him, seeing his poor health.

  4. #4
    Super Moderator Top User Hope2012's Avatar
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    Good luck today with your brother. Please come and update if you need to chat...
    This dark night shall end and the sun will rise again...
    Believe

    - Dad diagnosed in 1992 with primary bladder cancer
    - bladder removed and new one made from resected intestine
    - chemotherapy regimen started
    - mets to large intestines discovered in 1993...more chemo...tumors disappearing
    - complained of neck pain Dec 1994. Mets to brainstem confirmed
    - passed away Feb 24, 1995

  5. #5
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    We met with his liver transplant surgeon this morning and this is what he said:
    - The tumors are stable in size.
    - The tumors are not killing your brother at this stage.
    - The Hepatitis C is killing your brother and is still damaging his liver. Right now we cannot do treatment for the tumors unless his liver gets better, because the tumors treatment could kill him.

    So the liver surgeon would like to treat his hepatitis C and hope that his liver gets better from cirrhosis then treat the tumors. The liver surgeon seemed to be in shocked when I told him that my brother's gastroenterologist didn't want to do anything about his hepatitis C since there are new treatments available that are not as damaging with side effects as before (what is the name of this new treatment for hepatitis C?). Then the liver surgeon called my brother's gastroenterologist at the other hospital and we will meet with his gastroenterologist in 3 weeks from today.

    2 weeks before today, we had met with a hepatologist and he said that he could prescribe my brother the hepatitis C treatment if my brother's gastroenterologist didn't want. When we met with my brother's gastroenterologist last week, I asked him what about new treatment for his hepatitis C? His answer wasn't clear, all he asked is if we had private or government medicare because this new hepatitis C treatment could be expensive. Then I had to ask when will we meet again? He replied "in around 3 months". Then I wondered, why, why are you making me ask for a follow-up and not you telling us, are we just gonna meet you every 3 months from now and every meeting will lead to nothing being done?

    All this gastroenterologist has been doing is prescribing him 2-3 diuretics to treat his ascites. I'm wondering if he has been watching his tumors grow for the past 6 years, because he had made him do MRI in 2009, 2011 and 2014.

    I feel something is wrong. This gastroenterologist has been following my brother for 12 years and I feel he's letting him die from his hepatitis C and cirrhosis and now tumors.

    I don't know if I can trust this gastroenterologist anymore, I'm considering to ask the hepatologist to take care of my brother's hepatitis C and cirrhosis. What should I do? Should I ask and go with the hepatologist or keep continue seeing this gastroenterologist? I really need advice. Thank you very much.

  6. #6
    Super Moderator Top User Hope2012's Avatar
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    I'm sorry your day just seemed to get more confusing!! One thing you should do is if you aren't happy with the answers then get a second opinion. I think you've done that by seeing the hepatologist. Since a hepatologist specializes (actually is a subset of gastroenterology) in liver disease I'd be more inclined to go with him. He would be more up to date on the latest treatments. I'd be very nervous saying to leave it and just treat the symptoms (ascites) as nothing is being done to try and treat the cause.

    That's just my opinion. Only you and your brother can decide what to do here.
    This dark night shall end and the sun will rise again...
    Believe

    - Dad diagnosed in 1992 with primary bladder cancer
    - bladder removed and new one made from resected intestine
    - chemotherapy regimen started
    - mets to large intestines discovered in 1993...more chemo...tumors disappearing
    - complained of neck pain Dec 1994. Mets to brainstem confirmed
    - passed away Feb 24, 1995

  7. #7
    Super Moderator Top User po18guy's Avatar
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    I would say that the gastroenterologist "seems" to be thinking in terms of palliation. His worry seems to be about getting paid. Not a good sign. My thinking is that it is time for a second opinion.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

 

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