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Thread: Misdiagnosed from Hodgkins to T-Cell Alk NEG

  1. #121
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    Just wanted to pop in, say a hi and a woohoo! That's great news

  2. #122
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    So happy for you!!!! You are doing so well. I only anticipate you to keep on keepin on!

  3. #123
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    Coffeeeeeeeeee

    Glad to know you're still lurking, I actually was thinking about you a few weeks back lol. How are you? Good I'm guessing hehe! Well if I don't hear from you before the holidays have a time with your loved ones. Cheers!!!
    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. #124
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    Quote Originally Posted by debpower View Post
    So happy for you!!!! You are doing so well. I only anticipate you to keep on keepin on!
    Thank you deb, that's the plan

    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. #125
    Super Moderator Top User po18guy's Avatar
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    Shawn, get to Seattle tomorrow morning!

    Yeah, I know and I understand.

    Still, one of these days...
    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. #126
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    Quote Originally Posted by po18guy View Post
    Shawn, get to Seattle tomorrow morning!

    Yeah, I know and I understand.

    Still, one of these days...
    I really wish I could. My hope is to meet in Hawaii in August if there is a meet there next year. I will have had my one year shots by then and allowed to travel again if all goes well. Although, I am looking after my 2 & 3 year old as a full time dad while DW is back to work, so I'm not sure if there's a difference lol. I'm being as careful as possible and getting my exercise, probably more than I should really?

    I know you know but also know you're always welcome up here. Breakfast is still on us! Looking forward to it. Enjoy the day!




    PS. My other b-day is coming up in a few days 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

 

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