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Thread: Misdiagnosed from Hodgkins to T-Cell Alk NEG

  1. #51
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    So what does this new diagnosis mean? A different treatment? I'm sure you are all so confused right now. I hope you get answers soon. How is he feeling?

  2. #52
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    Hi Deb, My son is doing well overall. He had his first dose of Brentuximab two weeks ago and felt "chemo bad" for several days, but is now back to feeling like himself. His main symptom is a consistent dry cough since the lymphoma is pressing on his lungs. But even that has improved. We want to keep with Brentuximab, get to NED and then it's on to auto stem cell. Both Hodgkin's and ALCL are CD-30 positive and that is what Brentuximab targets. Thanks very much for asking!

    Quote Originally Posted by debpower View Post
    So what does this new diagnosis mean? A different treatment? I'm sure you are all so confused right now. I hope you get answers soon. How is he feeling?
    Researcher, advocate, and caregiver to my son, age 24
    July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
    Sept 2016, Third round of E-CHOP complete; PET scan NED
    Nov 2016, Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016, PET scan NED
    March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
    March 2017, CT scan shows relapse. Confirmed by PET
    April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
    May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists)
    June 2017, Only partial remission with Brentuximab
    July, 2017, ICE x 2 (worst yet). Awaiting PET-CT scan.

  3. #53
    Senior User Chef's Avatar
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    Mar 2016
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    Wow, VMarie! Sorry to hear of this, seriously what an ironic twist of fate although I still am left scratching my head and a tad bit confused?? Well, the tux should do it's thing all right. I can only send more love and juju to you all for the best possible outcome (for me too lol). Please keep us posted!


    Dx ~ NSHL StageIIIA
    CT ~ {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen ~ 02/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests ~ Good.
    Pet scan ~ Worrisome bone marrow ~ 03/17/16
    ABVD ~ 6 cycles started ~ 03/31/16
    Interm Pet ~ (+) ~ 05/19/16
    Stop ABVD ~ 09/01/16
    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 ~ 03/07/17
    Lumbar, Tri-fusion line,G-CSF, Collection ~ 03/17/17 ~ 03/18/17
    Sent home from transplant ward with infections ~ 03/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 ~ 04/26/17
    Restart Adcentris ~ 05/18/17
    Transplant TBD

    "Knowledge speaks, Wisdom listens." ~ Hendrix

  4. #54
    Senior User Chef's Avatar
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    Ps. I started the tux again yesterday and now they are looking for a donor. Auto hasn't been completely eliminated but it sure doesn't feel like they want to do it... we will find out next month or so?

    PPs. Po, I mentioned TREC to my onc again and he is actively looking into it with Dr. Savage! If it can get me to remission why not right? Again, we'll see?

    Dx ~ NSHL StageIIIA
    CT ~ {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen ~ 02/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests ~ Good.
    Pet scan ~ Worrisome bone marrow ~ 03/17/16
    ABVD ~ 6 cycles started ~ 03/31/16
    Interm Pet ~ (+) ~ 05/19/16
    Stop ABVD ~ 09/01/16
    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 ~ 03/07/17
    Lumbar, Tri-fusion line,G-CSF, Collection ~ 03/17/17 ~ 03/18/17
    Sent home from transplant ward with infections ~ 03/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 ~ 04/26/17
    Restart Adcentris ~ 05/18/17
    Transplant TBD

    "Knowledge speaks, Wisdom listens." ~ Hendrix

  5. #55
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Location
    Pacific NW, USA
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    I would think that, with a misdiagnosis and refractory disease, an auto transplant would be the first to be discarded. There are indeed some successes in T-Cell Lymphomas,but almost as many relapses, and early ones, with auto transplants. If no donors, do you have children? Even those unknown? Hey, it's worth a shot, as my two children were apparently the only two on earth who were acceptable as donors.

    The beauty of TREC in my case was that it consists of three older, well proven drugs in a new combination. That, and it worked when we were rapidly running out of lymphoma drugs.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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) 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 GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    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.
    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 aspiration/biopsy reveals 2% cells with 20q Deletion, a form of Myelodysplastic Syndrome, yet a different form than in 2015. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and two of myeloid malignancy lend a certain symmetry to the journey.

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

  6. #56
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    156
    Quote Originally Posted by po18guy View Post
    If no donors, do you have children? Even those unknown?
    Lol, nobody has come calling yet but you never know! Wouldn't that be something? My eldest is 17 soon and I really hadn't thought of that quite yet. I'll bring it up in the next meeting. I don't know how I feel about that or if it's even possible? It's such a "we don't know" or "not enough info" for my liking!

    Why not take a chance on auto you know? Likely, yes, a relapse will occur but if it doesn't I could also be "cured". The misdiagnosis is what bugs me. I was never given a protocol designed to help so now I'm just categorized as refractory!

    All this waiting, months of treatment for nothing and now yes brentuximab is working but there's also a chance that this time it won't and then what. Pull the allo and hope for a trial. Nobody has any answers, (hurry up and wait), it's quite confusing. I'm still totally hopeful something's gonna work just at what cost.
    Dx ~ NSHL StageIIIA
    CT ~ {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen ~ 02/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests ~ Good.
    Pet scan ~ Worrisome bone marrow ~ 03/17/16
    ABVD ~ 6 cycles started ~ 03/31/16
    Interm Pet ~ (+) ~ 05/19/16
    Stop ABVD ~ 09/01/16
    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 ~ 03/07/17
    Lumbar, Tri-fusion line,G-CSF, Collection ~ 03/17/17 ~ 03/18/17
    Sent home from transplant ward with infections ~ 03/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 ~ 04/26/17
    Restart Adcentris ~ 05/18/17
    Transplant TBD

    "Knowledge speaks, Wisdom listens." ~ Hendrix

  7. #57
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,660
    Given recent "events" it is prudent to check your closest relatives for HLA matching. In all the world, my two children were the only known acceptable matches for any type of transplant. That turned out to be a haploidentical (half-match) transplant. Normally, "haplos" provide less graft-versus-host-disease and more of the desired "Graft-versus-lymphoma-effect." Even though they match only on 5 of the ten HLA types, those 5 are an identical match. Dr. savage will know if an auto is a viable option, but it's a real coin toss as to whether or not it will provide a durable remission. And, since your disease is refractory, that chance drops lower.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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) 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 GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    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.
    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 aspiration/biopsy reveals 2% cells with 20q Deletion, a form of Myelodysplastic Syndrome, yet a different form than in 2015. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and two of myeloid malignancy lend a certain symmetry to the journey.

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

  8. #58
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    156
    Quote Originally Posted by po18guy View Post
    Given recent "events" it is prudent to check your closest relatives for HLA matching. In all the world, my two children were the only known acceptable matches for any type of transplant. That turned out to be a haploidentical (half-match) transplant. Normally, "haplos" provide less graft-versus-host-disease and more of the desired "Graft-versus-lymphoma-effect." Even though they match only on 5 of the ten HLA types, those 5 are an identical match. Dr. savage will know if an auto is a viable option, but it's a real coin toss as to whether or not it will provide a durable remission. And, since your disease is refractory, that chance drops lower.
    Well, looks like it's official!!! Docs have found several matches so now it comes down to timing. The plan is August 9th - ish for allo transplant. The risk of relapse in under a year with auto is too great which eliminates the option for allo if it occurs. They offer palliative care if this happens (scary), as the toxicity is greater than the benefit from their findings/experience.

    I will have to incur the huge expense of carrying a second home as re-locating to Vancouver is the option for care post transplant. I have no idea who will take care of me lol. My family in Vancouver is out to lunch and caretakers are not commonly provided for patients. My wife and kids will have to be here as she must keep our business running, not to mention take care of her mother who is undergoing chemo at the moment for breast cancer.

    Guess I'll take it as it comes like always, but, if anyone has any opinions or suggestions I'm all ears!!!

    Thanks and god bless!!!
    Dx ~ NSHL StageIIIA
    CT ~ {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen ~ 02/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests ~ Good.
    Pet scan ~ Worrisome bone marrow ~ 03/17/16
    ABVD ~ 6 cycles started ~ 03/31/16
    Interm Pet ~ (+) ~ 05/19/16
    Stop ABVD ~ 09/01/16
    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 ~ 03/07/17
    Lumbar, Tri-fusion line,G-CSF, Collection ~ 03/17/17 ~ 03/18/17
    Sent home from transplant ward with infections ~ 03/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 ~ 04/26/17
    Restart Adcentris ~ 05/18/17
    Transplant TBD

    "Knowledge speaks, Wisdom listens." ~ Hendrix

  9. #59
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,660
    I was fortunate enough to have coverage as a dependent on my wife's insurance. They paid for the 100 days of relocation - although it was via reimbursement. Still, it was a huge advantage. I would contact the cancer center and advise them that you are from the island. They certainly have to deal with housing issues during transplant and will have some resources for you. HealthCanada may also have some resources available. You might also contact Lymphoma Canada, as they are very active in furthering research and advocacy for lymphoma patients. They may have a patient assistance fund.

  10. #60
    Senior User
    Join Date
    Sep 2016
    Location
    Colorado
    Posts
    272
    Hi Chef,

    Wow - that's a lot to deal with, and in addition, your mother-in-law with breast cancer. I wish there was some way I could help out! I complain about our insurance, but they will pay for us to stay in lodging near the transplant center for the 4 weeks and they did put my son on a plan that covered his deductible for the year. Will you let us know if any of the sources Po mentioned pan out? I would be happy to help with some reserach on that front, if needed. It would make me happy if I could help you in any way. Remind me please, you will be having the transplant in Canada, but you are/are not Canadian? -VMarie
    Researcher, advocate, and caregiver to my son, age 24
    July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
    Sept 2016, Third round of E-CHOP complete; PET scan NED
    Nov 2016, Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016, PET scan NED
    March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
    March 2017, CT scan shows relapse. Confirmed by PET
    April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
    May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists)
    June 2017, Only partial remission with Brentuximab
    July, 2017, ICE x 2 (worst yet). Awaiting PET-CT scan.

 

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