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Thread: More on Brentuximab

  1. #1
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    More on Brentuximab

    Here's more info on Brentuximab regarding relapsed ALCL from "Uptodate.com" - which is what many oncologists use.

    "●Brentuximab Brentuximab vedotin is our favored second-line therapy in this setting given its high response rate, reasonable toxicity profile, and outpatient mode of administration. Although data are relatively scant, four-year follow-up data would suggest that patients who achieve a CR with brentuximab have a superior progression-free survival (PFS) when consolidated with transplant. We favor autologous HCT in this setting given the favorable toxicity profile compared with allogeneic HCT and lack of proven benefit to allogeneic HCT compared with autologous HCT. The optimal number of cycles of brentuximab prior to transplant is unclear. We generally treat for two to three cycles beyond CR in preparation for transplant. (See 'Brentuximab' below.)"
    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.
    August, 2017, very good response, but not CR, moving forward with ASCT. Outpatient at CBCI in Denver.

  2. #2
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    I wish there was data about the optimal number of rounds for Brentuximab. I had 3 rounds prior to transplant. It did not get me to NED. But I went from nodes in heart, lungs, etc. to only one node. I did not have any side effects for those first 3 rounds prior to transplant. The 5 rounds post transplant had severe side effects starting on round number 5 (the second round post SCT). Peripheral neuropathy in hands and feet. After round number 8 (the fifth round post SCT), it was motor and vestibular neuropathy and so we stopped it. Even though the original plan was to do at least 12 rounds total (the last 5 being at a reduced dose for maintenance therapy). I asked my transplant doctor if I could still get Brentuximab if it came back in a few years and she said yes, despite my history of bad side effects. I restarted Brentuximab exactly 100 days post SCT and I don't think my body had recovered from SCT yet. I'm not sure whether I would have been able to go longer without bad side effects if I hadn't also been recovering from recent SCT.
    Also, the original plan for my treatment was CHOP followed by AUTO SCT. When I got to City of Hope they said it had to be ALLO... I don't know if it was because it was now in my bones?? Or because it was refractory? I never did get to NED after CHOP. Maybe she did tell me and I forgot why but there was not option for an AUTO at all. I keep forgetting to ask her why when I go back for my visits.
    1/31/14 - Dx T cell lymphoma (ALCL ALK-neg CD30) 50+ nodes Stage IIIB
    4/15/2014 - 4 rounds of CHOP. PET scan clean but two new areas. 5th round of CHOP.
    5/15/2014 - New nodes in neck, fever returns, leave for City of Hope
    5/28/2014 - One round of ICE at City of Hope, admitted to hospital, high fever, nodes in lungs.
    6/15/2014 - 3 rounds of Brentuximab, prep for ALLO SCT.
    7/15/2014 - PET scan shows only one active area under port.
    8/7/2014 - ALLO SCT at City of Hope, brother 100% match
    10/7/2014 - Day 60 PET shows same node 1.5cm under port, everything else clean. Reduce immunosuppressants to get GVL effect.
    11/15/2014 - Day 100 PET shows same node is bigger, and there's a new one.
    11/18/2014 - Brentuximab again 5 rounds, return to Hawaii
    11/25/2014 - GVHD skin rash, back on steroids 30mg/day
    1/13/2014 - GVHD eyelids, back on steroids 30mg/day
    2/9/2015 - First clear PET NED
    2/9/2015 - Chronic GVHD, lips, skin, eyes - steroids 5mg/day
    9/31/2017 - Clear scan - NED

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Alison60 View Post
    Also, the original plan for my treatment was CHOP followed by AUTO SCT. When I got to City of Hope they said it had to be ALLO... I don't know if it was because it was now in my bones?? Or because it was refractory? I never did get to NED after CHOP. Maybe she did tell me and I forgot why but there was not option for an AUTO at all. I keep forgetting to ask her why when I go back for my visits.
    "Generally", autos do not provide durable remissions in T-Cell Lymphomas - particularly in the relapse setting. I believe that we have seen some remissions as short as 2-4 months, and that is not even sufficient time to recover from an auto, let alone an allo.
    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.

  4. #4
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    HI Alison,

    Wow! We haven't heard a word about any type of maintenance therapy following stem cell. Was that with City of Hope? I will be asking about that.

    And the allo vs. auto controversy is still... a controversy. CBCI in Denver won't hear of an allo due to high mortality and GVHD, even though this is a relapse situation. They consider it last resort only - if auto fails or if he never gets to NED. Perhaps they went allo with you because you never reached NED?

    Here's one glimmer of hope for us in the five-year results of the Brentuximab study. (Of course it is small numbers of people, but it will always be small numbers with ALCL!) Median PFS was not yet reached after five years for those CR patients that went on to transplant, but it was reached for those who did not go on to transplant (higher mortality for nontransplanted).

    "Of the 38 CR pts, 16 received a consolidative stem cell transplant (SCT, 8 allogeneic, 8 autologous). <<Median PFS was not reached in these pts who underwent transplant. >> Median PFS for the CR pts that did not undergo transplant was 39.4 mos (95% CI: 14.3, –).

    Dr. Shustov will be heading up another patient education seminar specific to T-Cell in June in SanFrancisco and I"m planning on going. My son will still be in chemotherapy so I'm hoping I can ask (Shustov) about transplant, maintenance therapy, etc. I know that they are seeing some durable remissions in relapsed ALCL patients with Brentuximab only (no stem cell). But again, just like the first time, incredibly difficult to know the right thing to do.

    Has your PN and GvHD resolved? I'm hoping so!

    Wishing you the best!! - VMarie


    Quote Originally Posted by Alison60 View Post
    I wish there was data about the optimal number of rounds for Brentuximab. I had 3 rounds prior to transplant. It did not get me to NED. But I went from nodes in heart, lungs, etc. to only one node. I did not have any side effects for those first 3 rounds prior to transplant. The 5 rounds post transplant had severe side effects starting on round number 5 (the second round post SCT). Peripheral neuropathy in hands and feet. After round number 8 (the fifth round post SCT), it was motor and vestibular neuropathy and so we stopped it. Even though the original plan was to do at least 12 rounds total (the last 5 being at a reduced dose for maintenance therapy). I asked my transplant doctor if I could still get Brentuximab if it came back in a few years and she said yes, despite my history of bad side effects. I restarted Brentuximab exactly 100 days post SCT and I don't think my body had recovered from SCT yet. I'm not sure whether I would have been able to go longer without bad side effects if I hadn't also been recovering from recent SCT.
    Also, the original plan for my treatment was CHOP followed by AUTO SCT. When I got to City of Hope they said it had to be ALLO... I don't know if it was because it was now in my bones?? Or because it was refractory? I never did get to NED after CHOP. Maybe she did tell me and I forgot why but there was not option for an AUTO at all. I keep forgetting to ask her why when I go back for my visits.
    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.
    August, 2017, very good response, but not CR, moving forward with ASCT. Outpatient at CBCI in Denver.

  5. #5
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    My husband says they switched me to ALLO as the PET showed it was in humerus. My bone marrow biopsies showed no Lymphoma, but the PET lit up in the upper arm bone. Plus it was refractory.

    COH was coordinating my Brentuximab treatment post transplant with my doctor in Hawaii. The initial plan was to give me 12 rounds total, including the 3 I had pre-transplant. I had Round 4 Day 100 at COH and then hopped on plane back to Hawaii. I had NED pet scan after Round 7 and then they did Round 8 at reduced dose (1.2) but I had to stop completely as it gave me mild motor and vestibular neuropathy about 1-2 weeks later. I guess if you are tolerating it well it probably wouldn't hurt to get 12 doses. Once I reached NED then they called it maintenance.

    Brentuximab before SCT was totally different than after SCT. I didn't have any side effects before SCT, but the 5 doses after SCT were much harder on me. About round 5 I got pretty bad PN in feet and hands (felt like they were on fire). It was really painful for a few weeks, but then it stopped and my feet went completely numb. Now they are only numb on the bottom, and hyper-sensitive on the top. My hands were hyper-sensitive, and it hurt to touch anything. They took about six months to get better. I still have weird tingly feeling in fingers.

    It's important to get Brentuximab *before* the SCT...! Without it I think there would be zero chance of long term remission for ALK-s.

    My GVHD is controlled by 5mg/day of Prednisone. It's not great but it's not that bad either. I can get small red areas on skin that are itchy and then skin peels off. My eyes feel very dry and scratchy. My lips can get very sore. I tried to wean myself off unsuccessfully a couple of times, but always had flares. So I think that I do better with a systemic dose. Because I'm on Pred. I have to take Acyclovir, Bactrim, Noxafil, etc. to help prevent infection. My various skin potions include: topical tacrolimus (use on lips too), and clobetasol. Also use Tobradex on eyes occasionally. I cannot swim in pools or go in ocean, and also, skin is very sensitive. I have to minimize sun exposure (pretty hard in Hawaii) so big hats, and cotton clothes to cover up. I'm still hopeful that I can reduce the dose one day.

    Oh well ... Still alive! Still happy! Still doing fun stuff with husband and kids! Everyday is a blessing.

    There's much more than a "glimmer" of hope! There are "big rays of sunshine" of hope for your son and all ALK-s. I know you were very discouraged when he relapsed, but now he gets the good stuff. Your son will get through this and he will be fine - he will do really well. You will be very happy when you see him respond. Nice you get to talk to Dr. Shustov again in June, and then you'll get some help sorting out the options.

    Aloha,
    Alison
    1/31/14 - Dx T cell lymphoma (ALCL ALK-neg CD30) 50+ nodes Stage IIIB
    4/15/2014 - 4 rounds of CHOP. PET scan clean but two new areas. 5th round of CHOP.
    5/15/2014 - New nodes in neck, fever returns, leave for City of Hope
    5/28/2014 - One round of ICE at City of Hope, admitted to hospital, high fever, nodes in lungs.
    6/15/2014 - 3 rounds of Brentuximab, prep for ALLO SCT.
    7/15/2014 - PET scan shows only one active area under port.
    8/7/2014 - ALLO SCT at City of Hope, brother 100% match
    10/7/2014 - Day 60 PET shows same node 1.5cm under port, everything else clean. Reduce immunosuppressants to get GVL effect.
    11/15/2014 - Day 100 PET shows same node is bigger, and there's a new one.
    11/18/2014 - Brentuximab again 5 rounds, return to Hawaii
    11/25/2014 - GVHD skin rash, back on steroids 30mg/day
    1/13/2014 - GVHD eyelids, back on steroids 30mg/day
    2/9/2015 - First clear PET NED
    2/9/2015 - Chronic GVHD, lips, skin, eyes - steroids 5mg/day
    9/31/2017 - Clear scan - NED

  6. #6
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    Thank you for the information, Alison! So, I was wondering if anyone here that received Brentuximab as a bridge to transplant experienced many side effects with it? You said you really didn't (until after stem cell)?
    What about the general chemo bone-tired feeling that nothing seems to help?

    -V
    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.
    August, 2017, very good response, but not CR, moving forward with ASCT. Outpatient at CBCI in Denver.

  7. #7
    Top User David52's Avatar
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    Quote Originally Posted by VMarie View Post
    Thank you for the information, Alison! So, I was wondering if anyone here that received Brentuximab as a bridge to transplant experienced many side effects with it? You said you really didn't (until after stem cell)?
    What about the general chemo bone-tired feeling that nothing seems to help?

    -V
    V:

    I never suffered much in the way of significant side effects with Brentuximab. Maybe some neuropathy, especially in my feet....but that's about it. Not much in the way of fatigue or appetite loss. But everyone is different. But I think the general sense is that, as compared to other forms of chemo, it is pretty gentle, generally. Hoping your son falls into that group!

    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. #8
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by David52 View Post
    V:

    I never suffered much in the way of significant side effects with Brentuximab. Maybe some neuropathy, especially in my feet....but that's about it. Not much in the way of fatigue or appetite loss. But everyone is different. But I think the general sense is that, as compared to other forms of chemo, it is pretty gentle, generally. Hoping your son falls into that group!

    David
    "Generally', the younger one is, the better they will fare with any and all side effects. As well, best not to worry too much until and unless they appear in the first place.
    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.

  9. #9
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    Location
    Honolulu, Hi
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    I was not tired on Brentuximab. It didn't even seem like Chemo. I remember the first time they gave me Adriamycin in CHOP and the nurse came in wearing a gloves, full gown and mask, and took a very big looking needle with some unnaturally bright red goo, and says that if she spilled one drop on the floor she has to call the Hazmat team to come and clean it up. And then she proceeds to inject it into you. That's chemo.

    But Brentuximab is not like that. It's a little clear bag that they hook up to your IV and port and it's done in 30 minutes. One infusion. All done. No tiredness, no nausea, and no hair falling out.
    1/31/14 - Dx T cell lymphoma (ALCL ALK-neg CD30) 50+ nodes Stage IIIB
    4/15/2014 - 4 rounds of CHOP. PET scan clean but two new areas. 5th round of CHOP.
    5/15/2014 - New nodes in neck, fever returns, leave for City of Hope
    5/28/2014 - One round of ICE at City of Hope, admitted to hospital, high fever, nodes in lungs.
    6/15/2014 - 3 rounds of Brentuximab, prep for ALLO SCT.
    7/15/2014 - PET scan shows only one active area under port.
    8/7/2014 - ALLO SCT at City of Hope, brother 100% match
    10/7/2014 - Day 60 PET shows same node 1.5cm under port, everything else clean. Reduce immunosuppressants to get GVL effect.
    11/15/2014 - Day 100 PET shows same node is bigger, and there's a new one.
    11/18/2014 - Brentuximab again 5 rounds, return to Hawaii
    11/25/2014 - GVHD skin rash, back on steroids 30mg/day
    1/13/2014 - GVHD eyelids, back on steroids 30mg/day
    2/9/2015 - First clear PET NED
    2/9/2015 - Chronic GVHD, lips, skin, eyes - steroids 5mg/day
    9/31/2017 - Clear scan - NED

  10. #10
    Top User David52's Avatar
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    Quote Originally Posted by Alison60 View Post
    I was not tired on Brentuximab. It didn't even seem like Chemo. I remember the first time they gave me Adriamycin in CHOP and the nurse came in wearing a gloves, full gown and mask, and took a very big looking needle with some unnaturally bright red goo, and says that if she spilled one drop on the floor she has to call the Hazmat team to come and clean it up. And then she proceeds to inject it into you. That's chemo.

    But Brentuximab is not like that. It's a little clear bag that they hook up to your IV and port and it's done in 30 minutes. One infusion. All done. No tiredness, no nausea, and no hair falling out.
    Yep.....maybe just a little Benadryl as pre-med....and away you go.....
    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.

 

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