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Thread: What treatment options do we have for someone diagnosed with stage 4 HCC Liver Cancer

  1. #1
    Newbie New User
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    Apr 2017

    What treatment options do we have for someone diagnosed with stage 4 HCC Liver Cancer

    My dad is 68 years old. He was just diagnosed with Stage 4 HCC with cirrhosis and Hepatitis C. The cancer is on both left and right lobes of the liver and is spread to the abdomen and lungs as well. We heard chemo is the only possibility at this point (and if successful, there are liver surgery/transplant options down the road). What would be the most effective chemo treatment to start with?

    Physically he is feeling well these days (we havenít started any treatment), although complains about pain in abdomen and can eat selectively to avoid vomiting. He walks around and has clear mind (he is a brilliant mathematician).

    Have there been any successful cases in the past for this condition? Which doctors and hospitals do you suggest? Also, what are we looking at in terms of timelines?

    Thank so much for the help!

  2. #2
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    Feb 2017
    I would say Sorafenib targeted oral chemo.

  3. #3
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    Apr 2017
    Thank you for the reply, Nancy! He has actually been taking Sorafenib for the past 3 weeks or so; the side effects have been really bad though. But starting yesterday, his condition has worsened dramatically. He cannot even form sentences anymore, cannot walk on his own, can't comprehend certain things (keeps asking what is this, etc). He's extremely fatigued, in a lot of pain, anxious and restless.

    Can anyone please tell me what patients feel or what symptoms they have when they are approaching the end? And his condition got worse all of a sudden. Is that expected in liver cancer?

  4. #4
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    Feb 2017
    There is often confusion due to toxins not being cleared and increased Ammonia levels. I'm sorry this is happening. Have you gotten stronger pain meds for him? Comfort is so important now. I enlisted Hospice for my husband towards the end. He had no pain but was very confused and lost 60lbs. HTC is brutal.

  5. #5
    Experienced User
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    Jan 2013
    My husband does not have HCC however he does have a disease called Primary Sclerosing Cholangitis. I think you should call your doctor because something called Hepatic Encephalopathy. There are things that the doctor can do to bring the ammonia and toxins down. This is usually what causes the confusion and disorientation.
    Husband diagnosed with Malignant Melanoma, 2/5
    Stage 1aNOMO
    Wide Local Excision
    Pathology showed clear margins.

  6. #6
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    Dec 2017
    My father is also stage 4 with Mets to the lungs and bones. He started Nexavar 3 weeks ago. So far so good. He is weak and sleeps a lot though. Today he became rather cranky with family out of nowhere. Did your Dadís side effects get better?

  7. #7
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Quote Originally Posted by Shirleeg1969 View Post
    My husband does lots of liver cleansing. Coffee enemas help and colonics. Also he can bathe in food grade hydrogen peroxide which you can purchase at your local health food store. Mix 1/2 cup FGHdrog peroxide 1/2 cup of sea salt and 1/2 cup of organic baking Soda which you need to buy online. It helps clean out toxins from the liver. Message me if you want to talk on the phone.
    Is there any scientific evidence to support your claims? If so, we would love to see it.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone 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. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (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) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell 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 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.


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