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Thread: Misdiagnosed from Hodgkins to T-Cell Alk NEG

  1. #111
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Pacific NW, USA
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    Lovely! A real blessing if you crash your motorcycle.
    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.

  2. #112
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    8,256
    Shawn, here's another song from Mark "Porkchop" Holder: https://www.youtube.com/watch?v=FGOxsbnLRDs
    He does classic acoustic, slide, heavy electric, and a lot of "punk blues" - a new one on me.
    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. #113
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    197
    Ya I watched that one... very good stuff from Mark. I was really enjoying his dobro/resonator work too, a very percussive style reminiscent of a train chugging along... perfect for blues. I'm playing again but wow I have lots of work to do haha
    Dx ~ NSHL StageIIIA
    CT ~ {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen ~ 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests ~ Good.
    Pet scan ~ Worrisome bone marrow ~ 3/17/16
    ABVD ~ 6 cycles started ~ 3/31/16
    Interm Pet ~ (+) ~ 5/19/16
    Stop ABVD ~ 9/01/16
    Pet (+) ~ 10/04/16
    Salvage GDP ~ 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B ~ 12/01/16
    Adcentris ~ 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection ~ 3/17/17 ~ 3/18/17
    Sent home from transplant ward with infections ~ 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 ~ 4/26/17
    Restart Adcentris ~ 5/18/17
    MUD Allo ~ 8/23/17
    Pet scan NED ~ 12/01/17

    I think about legacy a lot, hopefully at the end of the day they say I was a good bluesman. That's all I want.
    -- Johnny Winter

  4. #114
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    197

    Woohoo

    So we received the results from all of the 100 day testing and here's the scoop



    Nothing lit up on the pet scan but the ct showed some nodes, grrr!!!
    Not sure if they're scarring and now we just wait.
    No GVHD "yet" that we know of?
    I do have osteoporosis but getting meds for that.
    No disease in the marrow.
    Removing the tri-fusion line that I've had since march a week Monday!
    My doc didn't use the words remission but that's kinda how I see it




    Back home in the comfort zone!!!

    Dx ~ NSHL StageIIIA
    CT ~ {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen ~ 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests ~ Good.
    Pet scan ~ Worrisome bone marrow ~ 3/17/16
    ABVD ~ 6 cycles started ~ 3/31/16
    Interm Pet ~ (+) ~ 5/19/16
    Stop ABVD ~ 9/01/16
    Pet (+) ~ 10/04/16
    Salvage GDP ~ 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B ~ 12/01/16
    Adcentris ~ 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection ~ 3/17/17 ~ 3/18/17
    Sent home from transplant ward with infections ~ 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 ~ 4/26/17
    Restart Adcentris ~ 5/18/17
    MUD Allo ~ 8/23/17
    Pet scan NED ~ 12/01/17

    I think about legacy a lot, hopefully at the end of the day they say I was a good bluesman. That's all I want.
    -- Johnny Winter

  5. #115
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    8,256
    T-riffic! The PET tells the story. Those enlarged nodes are likely scar tissue, since no SUV is seen on the PET. It has been a long haul for you, but the light is now at the end of the tunnel rather than on the PET scan.
    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.

  6. #116
    Top User
    Join Date
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    Location
    durham UK
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    867
    being home and having a good scan is a good result and no gvhd I will assume is a positive too, may you continue to make progress and recover and loosing that line will feel like an early Christmas present.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  7. #117
    Top User David52's Avatar
    Join Date
    Jan 2013
    Location
    Central Wyoming
    Posts
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    [QUOTE=Chef;351322]
    Nothing lit up on the pet scan but the ct showed some nodes, grrr!!!
    Not sure if they're scarring and now we just wait.
    No GVHD "yet" that we know of?
    I do have osteoporosis but getting meds for that.
    No disease in the marrow.
    Removing the tri-fusion line that I've had since march a week Monday!
    My doc didn't use the words remission but that's kinda how I see it
    QUOTE]

    Looks like an excellent 100 day check-up! Keep it up, Chef. Always like seeing my fellow ALCL peeps prospering!

    Well done!

    David
    65 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
    Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED. Scanziety still sucks.
    5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
    Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    1 yr. post transplant blood work fine; clean scan. No GvHD so far.

  8. #118
    Senior User Chef's Avatar
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    Quote Originally Posted by johnr View Post
    being home and having a good scan is a good result and no gvhd I will assume is a positive too, may you continue to make progress and recover and loosing that line will feel like an early Christmas present.
    John, nice to hear from you. Thanks, you hit the nail square there re: line. It'll be nice to shower new-normally again lol.

    Dx ~ NSHL StageIIIA
    CT ~ {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen ~ 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests ~ Good.
    Pet scan ~ Worrisome bone marrow ~ 3/17/16
    ABVD ~ 6 cycles started ~ 3/31/16
    Interm Pet ~ (+) ~ 5/19/16
    Stop ABVD ~ 9/01/16
    Pet (+) ~ 10/04/16
    Salvage GDP ~ 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B ~ 12/01/16
    Adcentris ~ 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection ~ 3/17/17 ~ 3/18/17
    Sent home from transplant ward with infections ~ 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 ~ 4/26/17
    Restart Adcentris ~ 5/18/17
    MUD Allo ~ 8/23/17
    Pet scan NED ~ 12/01/17

    I think about legacy a lot, hopefully at the end of the day they say I was a good bluesman. That's all I want.
    -- Johnny Winter

  9. #119
    Senior User Chef's Avatar
    Join Date
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    Posts
    197
    [QUOTE=David52;351492]
    Quote Originally Posted by Chef View Post
    Nothing lit up on the pet scan but the ct showed some nodes, grrr!!!
    Not sure if they're scarring and now we just wait.
    No GVHD "yet" that we know of?
    I do have osteoporosis but getting meds for that.
    No disease in the marrow.
    Removing the tri-fusion line that I've had since march a week Monday!
    My doc didn't use the words remission but that's kinda how I see it
    QUOTE]

    Looks like an excellent 100 day check-up! Keep it up, Chef. Always like seeing my fellow ALCL peeps prospering!

    Well done!

    David
    Thank you David, It's very encouraging to hear you are doing so well and hope it continues!
    Reading your posts before the STC helped me during my "time inside."



    Cheers,

    Shawn
    Dx ~ NSHL StageIIIA
    CT ~ {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen ~ 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests ~ Good.
    Pet scan ~ Worrisome bone marrow ~ 3/17/16
    ABVD ~ 6 cycles started ~ 3/31/16
    Interm Pet ~ (+) ~ 5/19/16
    Stop ABVD ~ 9/01/16
    Pet (+) ~ 10/04/16
    Salvage GDP ~ 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B ~ 12/01/16
    Adcentris ~ 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection ~ 3/17/17 ~ 3/18/17
    Sent home from transplant ward with infections ~ 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 ~ 4/26/17
    Restart Adcentris ~ 5/18/17
    MUD Allo ~ 8/23/17
    Pet scan NED ~ 12/01/17

    I think about legacy a lot, hopefully at the end of the day they say I was a good bluesman. That's all I want.
    -- Johnny Winter

  10. #120
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    197
    Quote Originally Posted by po18guy View Post
    T-riffic! The PET tells the story. Those enlarged nodes are likely scar tissue, since no SUV is seen on the PET. It has been a long haul for you, but the light is now at the end of the tunnel rather than on the PET scan.
    T-riffic, that's awesome po haha! Thanks very much for your continued support my friend. Many of us benefit greatly from your research and knowledge, so, a tip-o-the-hat to you!!!

    Cheers,

    Shawn
    Dx ~ NSHL StageIIIA
    CT ~ {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen ~ 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests ~ Good.
    Pet scan ~ Worrisome bone marrow ~ 3/17/16
    ABVD ~ 6 cycles started ~ 3/31/16
    Interm Pet ~ (+) ~ 5/19/16
    Stop ABVD ~ 9/01/16
    Pet (+) ~ 10/04/16
    Salvage GDP ~ 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B ~ 12/01/16
    Adcentris ~ 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection ~ 3/17/17 ~ 3/18/17
    Sent home from transplant ward with infections ~ 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 ~ 4/26/17
    Restart Adcentris ~ 5/18/17
    MUD Allo ~ 8/23/17
    Pet scan NED ~ 12/01/17

    I think about legacy a lot, hopefully at the end of the day they say I was a good bluesman. That's all I want.
    -- Johnny Winter

 

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