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Thread: Refractory Hodgkins Lymphoma

  1. #11
    Senior User Chef's Avatar
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    Quote Originally Posted by po18guy View Post
    As to plans that are now seemingly impossible, remember that you must be alive to have complaints.
    So true, I choose life.
    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 {ALCL ALK-} 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
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = {ALK-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    的n the middle of difficulty lies opportunity."

  2. #12
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    Hi, here is the link to the macmillan site and the stem cell group, at present the are a few posting who have had or are going through allo and auto. The is also a couple who are having bendamustin because brentuximab did not work for them. Most are HL patients with a hand full of NHL so people who can share if you need it specific to your disease.

    https://community.macmillan.org.uk/c...blood_cancers/

    Though as you know the is a great range of experiences and knowledge here

    good luck will keep an eye on how things go

    john
    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.

  3. #13
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    Quote Originally Posted by johnr View Post
    Hi, here is the link to the macmillan site and the stem cell group, at present the are a few posting who have had or are going through allo and auto. The is also a couple who are having bendamustin because brentuximab did not work for them. Most are HL patients with a hand full of NHL so people who can share if you need it specific to your disease.

    https://community.macmillan.org.uk/c...blood_cancers/

    Though as you know the is a great range of experiences and knowledge here

    good luck will keep an eye on how things go

    john
    Thank you John, I've only sifted through at the moment but from what I've read it's been helpful. I'll dig in a bit more once I feel better, my symptoms have really kicked in this week, around the clock fever, night/day sweats, extreme fatigue etc... back on pred yesterday and starting to level out somewhat. What an exhausting journey thus far, strangely looking forward to chemo to provide much needed relief 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 {ALCL ALK-} 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
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = {ALK-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    的n the middle of difficulty lies opportunity."

  4. #14
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
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    After failing 12 drugs, the salvage regimen of TREC was what pulled me out of the fire this last time. But, I received only the Bendamustine, Etoposide and Carboplatin in it, as Rituxan (B cell) would have done nothing in my case. Two dozen tumors and painful small intestine invasion gone after two infusions. Worth an inquiry.
    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. #15
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    Join Date
    Mar 2010
    Posts
    1,324
    Sorry to read its making life hard at present, I am sure that once treatment starts you will get some relief and I hope its the right treatment to get you to where you need to be for a transplant. I am no HL expert so take this as a thought - it seems like bendamustine is making a come back and seems to be a drug that works when others have not. Po's experience is an example of that too so it may be worth discussing plan B now too the consultant so you know if a 3rd treatment is needed they know what to do and I don't say that to cast doubt, more to give reassurance that the beast can be beaten and will be beaten.
    If you need a steer re any of the stories on the mac site let me know and will help where I can, though in some ways our system is different to yours and certainly funding cuts are starting to impact on decisions so all the options are not on the table in the UK these days.

    Hope your music is helping you through this stage, do you ever try writing your own stuff?

    john
    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.

  6. #16
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,338
    Chef, the TREC was not planned as a transplant conditioning regimen, but it ended up working perfectly. I still got he conditioning regimen anyway... One advantage of TREC is that it is all existing drugs - only the combination is new. The thought of it shouldn't scare HealthCanada too badly...
    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. #17
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    269
    Quote Originally Posted by johnr View Post
    Sorry to read its making life hard at present, I am sure that once treatment starts you will get some relief and I hope its the right treatment to get you to where you need to be for a transplant. I am no HL expert so take this as a thought - it seems like bendamustine is making a come back and seems to be a drug that works when others have not. Po's experience is an example of that too so it may be worth discussing plan B now too the consultant so you know if a 3rd treatment is needed they know what to do and I don't say that to cast doubt, more to give reassurance that the beast can be beaten and will be beaten.
    If you need a steer re any of the stories on the mac site let me know and will help where I can, though in some ways our system is different to yours and certainly funding cuts are starting to impact on decisions so all the options are not on the table in the UK these days.

    Hope your music is helping you through this stage, do you ever try writing your own stuff?

    john
    John, thank you for all the info and kind words. I will post some tracks soon to soundcloud. I used to play covers back in the day but moved towards more original stuff over the past ten years or so. Since I produce as well in my home-made studio I don't write as much wearing both hats but it's fine, I enjoy both.
    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 {ALCL ALK-} 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
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = {ALK-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    的n the middle of difficulty lies opportunity."

  8. #18
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    269
    Quote Originally Posted by po18guy View Post
    Chef, the TREC was not planned as a transplant conditioning regimen, but it ended up working perfectly. I still got he conditioning regimen anyway... One advantage of TREC is that it is all existing drugs - only the combination is new. The thought of it shouldn't scare HealthCanada too badly...
    Hi Po, you betcha! I will most certainly be asking about that regimen. Whether here or in the US, it should be a viable option! Bendamustine is the other I''ll be asking about? I have the SCT appointment on Wednesday and start GDP this Thursday. Thanks as always for your support and knowledge.

    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 {ALCL ALK-} 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
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = {ALK-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    的n the middle of difficulty lies opportunity."

  9. #19
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,338
    The Bendamustine is part of TREC:

    Treanda (Bendamustine)
    Rituxan
    Etoposide
    Carboplatin
    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
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    269
    Quote Originally Posted by po18guy View Post
    The Bendamustine is part of TREC:

    Treanda (Bendamustine)
    Rituxan
    Etoposide
    Carboplatin
    Right, that meant to say Brentuximab although i hear it's the price of a small car?
    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 {ALCL ALK-} 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
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = {ALK-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    的n the middle of difficulty lies opportunity."

 

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