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Thread: liver cancer

  1. #1
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    liver cancer

    Hi,

    I have hepatocellular carcinoma. It is rare especially because I am only 44 with no chronic liver disease. I am wondering if there are other people out there who have this also with no prior liver disease, hepatitis B or cirrhosis which is usually the nature of getting this type. I am told that all of the systemic all over body chemo does not work so I am only left with surgery and/or local treatments. It has spread to my lungs. I would like to see other options people may have tried.

    Thanks,

  2. #2
    Super Moderator Top User po18guy's Avatar
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    If you have not been to MSK, I would go there immediately for a second opinion on both diagnosis and treatment. Proper identification of certain cancers can be extremely difficult and you want it done right. Then, treatment varies widely by hospital or cancer center. You need several eyes on your case. Even if you have been to MSK, a second opinion is still an excellent idea.
    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 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) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer.
    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 measureable - 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.
    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.
    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. Active surveillance is the course of choice.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Two lymphoid malignancies plus a myeloid malignancy lend a certain symmetry to the journey.

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

  3. #3
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    Thank you. I am sorry but I am not familiar with MSK.

  4. #4
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    Hi there. I am in a very similar position. Similar age (47), no Hep C, no cirrhosis. I was told in July that the liver remains cancer free post resection surgery, but that I have lung mets (that can't be operated on). The only option being given to me is Nexavar. Likely to start in next few weeks after Sept 9th scan.

  5. #5
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    Quote Originally Posted by Stage4BGH View Post
    Hi there. I am in a very similar position. Similar age (47), no Hep C, no cirrhosis. I was told in July that the liver remains cancer free post resection surgery, but that I have lung mets (that can't be operated on). The only option being given to me is Nexavar. Likely to start in next few weeks after Sept 9th scan.
    I have started Nivolomab (opdivo) to treat the liver and lung tumors. You should ask your doctor about that. Still in phase 3 trial but better odds than Nexavar. Also heard the side effects are better.

  6. #6
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    Hepatocellular Carcinoma and Cholangio Carcinoma Stage IV

    I am seeing persons here with hepatocellular carcinoma. My husband was diagnosed with hepatocellular as well as cholangiocarcinoma Nov 2016.
    He has multiple large tumors in his liver over 6 cm with tumors in the hepatic vein as well as the inferior vena cava. Spread to the para-aortic and retroperitoneal lymph nodes. History of cirrhosis from NASH. No alcoholism, Hep C or B. (Cirrhosis was diagnosed after doing a biopsy on his liver because it looked abnormal during a cholecystectomy Mar 2015.)
    The cancer is non operable and has been given the the only treatment available with his Stage 4 = Nexavar. Was told he has 1 year and if he took the Nexavar and tolerated it, it may give an extension of 3 months.
    He has chosen at this time not to start the chemo pill. He feels he is going to put it in Gods hands and he does not want to deal with possible side effects.
    His current status right now he is still active and working. Only symptoms he is seeing is back pain, some nausea, bloating feeling and some abdominal discomfort. Not constant and not too bad for him to tolerate. We found out later.. With cirrhosis an AFP should be checked every 6 months. He missed a 6 month check .... if we had had it drawn then we may have caught it early. It was drawn Dec 2015 and it was 7=normal.. fast forward to Nov 2016 + 4225. The liver physician failed to order it with his regular labs that were drawn in July 2016. God Bless you all

  7. #7
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    So sorry to hear about the mets to your lungs.
    How are you doing on the Nexavar, my husband decided not to take it because of the side effects.
    The provider told use .... if you don't have side effects then its not working... well my hubby read up on it an decided to take his chances....
    Please keep me updated on your progress and prayers for courage and hope for your journey

  8. #8
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    So sorry to hear about the mets to your lungs.
    How are you doing on the Nexavar, my husband decided not to take it because of the side effects.
    The provider told use .... if you don't have side effects then its not working... well my hubby read up on it an decided to take his chances....
    Please keep me updated on your progress and prayers for courage and hope for your journey

  9. #9
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    Quote Originally Posted by Stage4BGH View Post
    Hi there. I am in a very similar position. Similar age (47), no Hep C, no cirrhosis. I was told in July that the liver remains cancer free post resection surgery, but that I have lung mets (that can't be operated on). The only option being given to me is Nexavar. Likely to start in next few weeks after Sept 9th scan.
    I am starting Nexavar next week - are you doing well on the drug? any side effects?

  10. #10
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    I would really like to hear how you do with the Nexavar. I am hearing different things about this drug and its effects. The side effects are variable and different with individuals. At this time my husband has decided so far not to take it. (personal decision that I support) He was diagnosed in Nov. 2016. (As you can read in a previous post here)

 

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