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Thread: More on Brentuximab

  1. #11
    Senior User
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    Colorado
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    It's important for my son to work as much as possible, to feel as "normal" as possible and he could never go back to work after his first sessions of CHOEP - he was wiped out for the day/night. After experiencing CHOEP he was naturally wondering what to expect.
    He's barely 25 and he's staring at this disease again wondering if he's going to make it after a relapse in just two months. He never, ever compains, though. Honestly, he's amazing.

    I know everyone is different, but it always helps to know how you both handled it, David and Alison. Thank you so much. Yes, that "Red Devil" chemo. That is some really nasty s---.
    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
    Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
    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).

  2. #12
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    25
    Quote Originally Posted by VMarie View Post
    It's important for my son to work as much as possible, to feel as "normal" as possible and he could never go back to work after his first sessions of CHOEP - he was wiped out for the day/night. After experiencing CHOEP he was naturally wondering what to expect.
    He's barely 25 and he's staring at this disease again wondering if he's going to make it after a relapse in just two months. He never, ever compains, though. Honestly, he's amazing.

    I know everyone is different, but it always helps to know how you both handled it, David and Alison. Thank you so much. Yes, that "Red Devil" chemo. That is some really nasty s---.
    Your son was like mine, he was wiped out and he did CHOP (no E) at the time. The Brentuximab was totally different-he had energy, ate well etc. He had 3 treatments to bridge to allo. After the allo he did suffer from PN in his feet making it very difficult to walk for several months.
    son with t-cell ALCL-. CHOP; autologous; MUD allo.

  3. #13
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    Quote Originally Posted by David52 View Post
    Yep.....maybe just a little Benadryl as pre-med....and away you go.....
    I did need the Benadryl as a pre-med. I had an infusion reaction after first dose of Brentuximab, so after that they gave me Benadryl. It did not make me too sleepy though. Infusion reaction started as teeth chattering, and then legs twitching and then legs kicking on the bed. It must have looked pretty weird judging from the looks of people's faces. But it was quickly stopped with a shot of something, Benadryl? After that I was always pre-medicated with Benadryl.
    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
    9/7/2016 - Clear scan - NED

  4. #14
    Top User David52's Avatar
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    Quote Originally Posted by Alison60 View Post
    I did need the Benadryl as a pre-med. I had an infusion reaction after first dose of Brentuximab, so after that they gave me Benadryl. It did not make me too sleepy though. Infusion reaction started as teeth chattering, and then legs twitching and then legs kicking on the bed. It must have looked pretty weird judging from the looks of people's faces. But it was quickly stopped with a shot of something, Benadryl? After that I was always pre-medicated with Benadryl.
    Alison,

    that was pretty dramatic! My peeps just tuned me up with Benadryl right out of the gate, so I never had to try it (Brentuximab) a Capella, as it were. Only time I had a reaction sort of like yours was actually when I received my infusion of my donor's cells......got the sweats, then chills, and shaking.......and then over with.....weird for a bit tho.

    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.

  5. #15
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    Quote Originally Posted by David52 View Post
    Yep.....maybe just a little Benadryl as pre-med....and away you go.....
    HI David,

    Benadryl helped you?
    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
    Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
    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).

  6. #16
    Top User David52's Avatar
    Join Date
    Jan 2013
    Location
    Central Wyoming
    Posts
    833
    Quote Originally Posted by VMarie View Post
    HI David,

    Benadryl helped you?
    That is actually a good question...What I know is that I had Benadryl as a pre-med every time I received Brentuximab, and I never had an allergic reaction. Would it have gone differently without the Benadryl? No way to know. But at both my cancer centers where I got Brentuximab, standard operating procedure was Benadryl first. So probably a good precaution.
    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.

  7. #17
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Location
    Pacific NW, USA
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    7,522
    Quote Originally Posted by Alison60 View Post
    I did need the Benadryl as a pre-med. I had an infusion reaction after first dose of Brentuximab, so after that they gave me Benadryl. It did not make me too sleepy though. Infusion reaction started as teeth chattering, and then legs twitching and then legs kicking on the bed. It must have looked pretty weird judging from the looks of people's faces. But it was quickly stopped with a shot of something, Benadryl? After that I was always pre-medicated with Benadryl.
    When I was admitted after breaking a neutropenic fever post-transplant, I received I.V. Demerol if I remember correctly. 5mg slowed the chills/tremors down and another 5 stopped them cold. I also quickly learned why so many crave opioids. A nice place to visit, but I wouldn't want to live there!

    Interesting that anecdotal evidence shows that most patients with Adcetris/SGN35/Brentuximab Vedotin infusion reactions are those who are post allogeneic transplant. Research into that phenomenon continues. As to benedryl, 50mg is OK orally, but 23mg I.V. knocks me out. In me, it also produces restless leg syndrome.
    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.

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

 

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