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Thread: SIRT procedure

  1. #11
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by mike49 View Post
    Despite the Chemo I really don't feel all that bad.I guess the question I am too chicken to ask the Doctor is how much longer do I have to live ?
    We form our own survival curves. I have a different cancer, but if I followed the survival curve, I would have been gone in 2010 - half of us passing within the 2 years prior to that. I maintain that "It ain't over until it's over."
    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.

  2. #12
    Yep, totally agree, another weapon in the tool chest! My hubby has had RFAs to the liver but no SIRT in addition to liver resections. Reads like the side effects are minimal. So glad to read you are tolerating the chemo well. That is always a good thing!
    Take care and I hope your procedure goes well.

    Also regarding the death thing, Do NOT look at statistics. The stats include folks from all walks of life, the very sick before being diagnosed with cancer, folks that have no access to major medical center care, elderly with low immune systems. If my husband went by stats, he would be long gone. He has lived with stage IV cancer for 10 years this past January. He has had lots of hurdles and so far has managed to jump each one. It has definitely not been easy but he is still going, working and enjoying all that life has to offer.

    Best of luck to you!
    Hubby diagnosed in 2005 with Stage IV, January...Journey on this road has had some major obstacles ..... God continues to help us endure each one.... enjoying life and doing as much as possible!

    My Carolina Cowboy gained his angel wings in August, 2017, 11 1/2 years with Stage IV. It was an amazing journey on this bumpy road. His attitude in fighting this beast was like no other. He did not want anyone's sympathy or pity so much that a lot of our friends did not even know he was in this battle. Many, many thanks to our super oncologist, surgeons, radiologists, staff, and etc. Most thankful to our God above for letting my soulmate be with me all this time! Amazingly, most of the time in this fight was great! We enjoyed trail riding every chance we had to go and so many other things that life offered to us. Even took a few rides with a 5FU pack. My cowboy was a tough one, John Wayne had nothing on him!

    Don't give up! Keep the fighting attitude!! Blessings to all!! May a cure be found!!

  3. #13
    Experienced User
    Join Date
    Feb 2015
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    54
    Thanks for the response. That's good to hear that he's lived 10 years and still going .
    Last edited by mike49; 02-09-2015 at 09:34 PM.

  4. #14
    *Shrugs* I was given six months to live 33 months ago.
    Age 49 Male
    5/18/12 - Family Dr ordered emergancy CT and colonsopy
    5/23/12 - Diagnosed with Stage 4 Rectal Cancer w/mets in Liver
    6/28/12 - Combined lower bowel resection and liver resection.
    9/7/12 - Last day of Chemo. Folfox Blood Clot in Leg.
    1/25/13 - Last day of Second Round of Chemo Folfox
    4/25/13 - Ostamy Reversal
    9/9/13 - Clear Scan-High CEA
    9/16/13 - Pet Scan shows 4 new spots in Liver
    10/3/13 - Second Liver Resection removes tumor #6,7,8,9.
    11/1/13 - Started FolFiri
    5/13/14 - Pet scan shows 3 large tumors in the Liver. Time to see Surgeon again.
    6/12/14 - Third Liver Resection removes Tumor #10,11,12.
    7/16/14 - Started Xeloda and Avastin
    9/22/14 - Fistula goes septic. 2 Major Surgeries later Permanent Ostomy.
    12/19/14 - Started Xeloda and Avastin again
    5/22/15 - 3 new tumors in my liver. No surgery this time.
    12/15/15 - micro-spheres(Y90) failed completely All tumors growing
    2/5/16 - Started Lonsurf and antibiotics

  5. #15
    Experienced User
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    Feb 2015
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    I had my SIRT Procedure on Tuesday. So far this has been the worst part. I felt like I was on my death bed Tuesday and Wednesday. Nausea and pain in my liver but by Thursday the appetite was back and began to function normally. Improving every day. Round 15 of Chemo on Tuesday. Erbitux and Irrinotecan.

  6. #16
    Moderator Top User Fourlegsgood's Avatar
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    Aug 2011
    Posts
    988
    mike49

    Glad you are feeling better after having had it done. It sounds like a smart way to tackle the cancer. Hope it does the job.

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  7. #17
    Just checking in to see how you are doing? Hope you are feeling so good that you are out and about and too busy to be on the computer!
    Hubby diagnosed in 2005 with Stage IV, January...Journey on this road has had some major obstacles ..... God continues to help us endure each one.... enjoying life and doing as much as possible!

    My Carolina Cowboy gained his angel wings in August, 2017, 11 1/2 years with Stage IV. It was an amazing journey on this bumpy road. His attitude in fighting this beast was like no other. He did not want anyone's sympathy or pity so much that a lot of our friends did not even know he was in this battle. Many, many thanks to our super oncologist, surgeons, radiologists, staff, and etc. Most thankful to our God above for letting my soulmate be with me all this time! Amazingly, most of the time in this fight was great! We enjoyed trail riding every chance we had to go and so many other things that life offered to us. Even took a few rides with a 5FU pack. My cowboy was a tough one, John Wayne had nothing on him!

    Don't give up! Keep the fighting attitude!! Blessings to all!! May a cure be found!!

  8. #18
    Experienced User
    Join Date
    Feb 2015
    Posts
    54
    Quote Originally Posted by wytyspy View Post
    Just checking in to see how you are doing? Hope you are feeling so good that you are out and about and too busy to be on the computer!
    Same old same old. Chemo every two weeks. Erbatux and Irrontecan ( yes, I am sure I spelled this wrong) . By day 3 after SIRT I was feeling fine. Just chemo every two weeks in perpetuity. CEA 1.2. Round 16 was today. I guess the lesions are inoperable so they did the sirt in hopes of getting them gone from one lobe of the liver and surgically remove the on in the right lobe. I'm really not getting much information. To look at me, no one would really know I have cancer. My worst side effect is neuropathy in my feet. And they tell me this regimen doesn't cause that.

  9. #19
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
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    Quote Originally Posted by mike49 View Post
    Same old same old. Chemo every two weeks. Erbatux and Irrontecan ( yes, I am sure I spelled this wrong) . By day 3 after SIRT I was feeling fine. Just chemo every two weeks in perpetuity. CEA 1.2. Round 16 was today. I guess the lesions are inoperable so they did the sirt in hopes of getting them gone from one lobe of the liver and surgically remove the on in the right lobe. I'm really not getting much information. To look at me, no one would really know I have cancer. My worst side effect is neuropathy in my feet. And they tell me this regimen doesn't cause that.
    Good to hear from you. As to that neuropathy, have you been checked for blood sugar levels?
    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.

  10. #20
    Experienced User
    Join Date
    Feb 2015
    Posts
    54
    Yes on the blood sugar levels. That is the only thing I am high on. If I haven't asked about it yesterday it would have gone un-noticed. It's 330. would that cause the neurapthy ? If so what would work to deal with it ? The nurse practitioner wanted me to get checked for Diabetes but I don't feel like searching for another affliction.

 

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