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Thread: NSHL Stage IIa PET Positive After 4 ABVD Cycles

  1. #1
    Newbie New User
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    NSHL Stage IIa PET Positive After 4 ABVD Cycles

    Hello,

    I have lurked in these forums late at night since I was diagnosed with NSHL Stage IIa at the age of 34 in 8/2016. I am midway through my treatment, having received 4 cycles of ABVD so far along with two interim PET Scans. I was hoping to get some advice from anyone who has been in a similar situation described below.

    Diagnosis: Stage IIa Nodular Sclerosis Hodgkin’s Lymphoma; Found in 3 Lymph Node regions.

    First PET Scan (Baseline): SUV Uptake in 3 Nodal Regions, 1 area showed donut-shaped activity with SUV uptake of 16 around a central necrotic region (no uptake) in the mediastinum.

    Second PET Scan (After 2 ABVD Cycles): 2 Nodal Regions resolved, Previous donut-shaped activity around necrotic tissue in the mediastinum decreased in size, but remained with an SUV uptake of 11 in the hottest spot. Deauville score of 4.

    Third PET Scan (After 4 ABVD Cycles): Slightly lower SUV of 9.2, but essentially no change from Second PET Scan. Deauville score of 4. PET report author says this tissue appears to be necrotic.

    My primary oncologist believes the donut-shaped PET active area that remains is all necrotic, with no Cancer cells present. He also believed that this PET active area would’ve been resolved after 4 ABVD cycles, which it was not. He is currently recommending just to move forward with my previously planned Radiation Treatment.

    My second opinion is urging to get a biopsy, which I have decided to pursue, even if it delays treatment by a week or two. He is recommending for the surgeon to remove as much of the PET active tissue that is possible.

    Now I’m in the process of trying to prepare myself for the possible outcomes of this biopsy, and have the following questions:

    1) Is necrotic tissue different than scar tissue? This sounds like a basic question, but I’m having difficulty googling an answer to this.

    2) Does anyone have experience seeing PET activity around the perimeter of necrotic tissue? What did it end up being? What made it ‘go away’?

    3) If the biopsy determines this tissue is positive for NSHL, is it too early to shift gears to an ICE/Stem-Cell Transplant treatment as opposed to moving forward with the ‘standard’ Radiation Treatment approach? I ask because I believe my second opinion may recommend this route, but this seems like the route you would go when the ‘standard’ approach has proven unsuccessful.

    Thanks for taking the time to read through this post,
    Steve

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
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    Sorry to hear of your situation. I am a non-Hodgkin's guy, but if it is not behaving as expected, I would seriously question the original pathology. Lymphoma can be very difficult to identify and we have cases where both large B-cell and Hodgkin's, on re-biopsy, have turned out to be Anaplastic Large Cell Lymphoma, a T-Cell lymphoma that is worlds apart from Hodgkin's.

    Since it is refractory to treatment, a different approach must be considered. Continuing with ABVD will only yield the same partial response. I think that radiation may be iffy, due to your age and future toxicity. But, I will allow those with Hodgkin's experience to reply. Going ahead with the biopsy is an excellent idea at this point, as it may be a different enemy that you are fighting.

    As I understand it, necrotic tissue is tumor cells (and possibly connective tissue or the network of veins which feed the tumor) which are dying or have died due to treatment, whereas scar tissue by itself is not malignant, but rather your body's response to the incursion of the tumors. It is a fine distinction between the two, with some crossover between the two types.
    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.

  3. #3
    Newbie New User
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    Dec 2016
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    8
    I wanted to make an update to my original post:

    I had a biopsy on 1/11/17. While I have not seen the final pathology, I was informed last night that the PET active tissue around the perimeter of the necrotic tissue was Non-Hodgkin's Lymphoma -- Diffuse Large B Cell, CD30+.

    I was told I have a couple treatment options for each 'phase' of treatment:

    Phase 1 - to get into remission
    1) ICE Chemotherapy
    2) Brentuximab

    Phase 2 - to cure
    1) Radiation
    2) Stem Cell Transplant

    I will be getting a bone marrow biopsy ASAP and starting treatment soon after.

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,340
    Sorry to hear this. Has this biopsy been compared to the original? Am wondering if it was not DLBCL all along. As to ICE, it is fairly nasty and there is now a less toxic regimen that should be available. I received it as a long shot and it worked extremely well simultaneously against two different T-Cell Lymphomas. It is called TREC and consists of the following:

    1. Treanda (Bendamustine)
    2. Rituxan
    3. Etoposide
    4. Carboplatin

    It is designed to reduce the toxicity of ICE, and is administered on an out-patient basis, rather than in-patient. In my case, the Rituxan was omitted, as it has no effect against T-Cell Lymphomas. It is certainly worth asking about. I would also consider a second opinion at a cancer research facility or teaching hospital.
    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.

  5. #5
    Steve,

    I am baffled about the ICE application, if your lymphoma is CD30 positive. Brentuximab, on the other hand, does make sense, as it is specifically designed for CD30 positive lymphomas. I have a CD30 NHL, and Brentuximab has put me into remission twice, once before my auto SCT, and 2 1/2 yrs later, for my allo SCT a year ago.. Maybe PO can chime in, but I am also a bit puzzled about the pathology. I am maybe mistaken here, but I have just not heard of DLBC lymphoma being positive for CD30, as opposed to CD20. Are you being seen at a major NCI designated academic cancer center? If not, I really think it is a good option to just get confirmation from such a place.

    anyway, best of luck. Will be thinking about you and cheering for a good outcome.

    David
    67 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. 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.
    5/15/15: No NED this time. Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    3 yr. post SCT check up: all fine, no issues.

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,340
    CD20 identifies a cell as a B cell. CD30+ makes me think that it may be Anaplastic Large Cell Lymphoma, which is not a B-cell type, but a completely different T-Cell Lymphoma, which requires a completely different treatment. As well the difficulty identifying lymphoma can be seen from the Wiki on Diffuse Large B Cell Lymphoma (DLBCL):
    The third morphologic variant, anaplastic, consists of tumor cells which appear very differently from their normal B cell counterparts. The cells are generally very large with a round, oval, or polygonal shape and pleomorphic nuclei, and may resemble Reed-Sternberg cells.
    Thus, if it is Anaplastic Large B-Cell Lymphoma, it may have been mistaken for Hodgkins. Most varieties of Hodgkin's Lymphoma have the easily identified Reed-Sternberg cells. Still, if it was any type of B-Cell Lymphoma, it would be CD20+ as far as I know.

    CD30 indicates that it might be Anaplastic Large T-Cell Lymphoma (that's what it should be called to prevent confusion), so more pathology work on that latest biopsy sample is certainly warranted. Second opinions save lives - one saved mine.
    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.

  7. #7
    Newbie New User
    Join Date
    Oct 2016
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    2
    Quote Originally Posted by po18guy View Post
    CD20 identifies a cell as a B cell. CD30+ makes me think that it may be Anaplastic Large Cell Lymphoma, which is not a B-cell type, but a completely different T-Cell Lymphoma, which requires a completely different treatment. As well the difficulty identifying lymphoma can be seen from the Wiki on Diffuse Large B Cell Lymphoma (DLBCL): Thus, if it is Anaplastic Large B-Cell Lymphoma, it may have been mistaken for Hodgkins. Most varieties of Hodgkin's Lymphoma have the easily identified Reed-Sternberg cells. Still, if it was any type of B-Cell Lymphoma, it would be CD20+ as far as I know.

    CD30 indicates that it might be Anaplastic Large T-Cell Lymphoma (that's what it should be called to prevent confusion), so more pathology work on that latest biopsy sample is certainly warranted. Second opinions save lives - one saved mine.
    I am SJM82's mother, the pathology shows that the tissue was both cd20 and cd30 positive. Perhaps that clarifies the situation.

  8. #8
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
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    Quote Originally Posted by MsPharoah View Post
    I am SJM82's mother, the pathology shows that the tissue was both cd20 and cd30 positive. Perhaps that clarifies the situation.
    Lymphoma can be diabolically difficult to identify. There are some types which contain both B and T cells in the mix, which can confuse and delay a proper diagnosis.
    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.

  9. #9
    Newbie New User
    Join Date
    Dec 2016
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    Po & David - thanks for the feedback so far, I really appreciate it.

    To clarify the information from my two surgical biopsies --

    My initial biopsy (8/2016) of a lymph node in my right supraclavicular region demonstrated the following pathology:
    1) Identified Reed-Sternberg cells
    2) The large cells are positive for CD15 and CD30
    3) The large cells are negative for CD3, CD20, and EBER
    (This pathology was reviewed and confirmed by two hospitals, one a large teaching hospital)

    My recent biopsy (1/2017) of a piece of the PET-Active tumor in my mediastinum demonstrated the following pathology:
    1) Rim of viable lymphoma surrounding necrotic tissue
    2) Necrotic tumor and viable rim of lymphoma are both positive for CD20
    3) PAX-5, CD45, and CD30 all stain the viable tumor, also shows partial MUM-1 positivity
    4) CD15 is negative in the viable tumor
    5) CD10 appears negative, despite increased background staining with abundant necrosis
    -- therefore most likely non-germinal center B-cell type.
    (..There's additional parameter information..)
    (Pathology determined by a large teaching hospital, Slides are currently also being reviewed by an NCI-designated Cancer Center)

    I've gotten two opinions on treatment -- both involve an aggressive approach to treatment by reaching remission then having a Stem Cell Transplant.

    Three paths to remission have been suggested:
    1) RICE Chemotherapy
    2) Brentuximab Vedotin (since both biopsies show CD30+); the downside being that it is not FDA approved for the treatment of NHL, and the long-term efficacy after Stem Cell Transplant is not documented.
    3) Dose Adjusted EPOCH

    So now I'm having a very difficult time deciding what to choose, as there really isn't good comparable data on the efficacy of these three choices in my situation (HL & NHL). If anyone has a similar experience with these chemo's or experience reaching remission with one of these approaches, I'd love to hear your experience.

    Thanks,
    Steve

  10. #10
    Newbie New User
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    Quote Originally Posted by MsPharoah View Post
    I am SJM82's mother, the pathology shows that the tissue was both cd20 and cd30 positive. Perhaps that clarifies the situation.
    ... Thanks, Mom!

 

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