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Super Moderator
Top User
As a general rule, autos are tougher going into, but far easier coming out of (guarantee of engraftment, no GvHD), while allos are easier going into and potentially tougher coming out of. The roles are switched somewhat. Technically, an auto is not a transplant but rather, a re-introduction, refreshing or re-booting of the immune system. Allos are a unique experiment in which two DNAs are combined for the first and last time in human history. The younger a patient is going in, the better as youth has distinct advantages.
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Brentuximab failed, ICE is next
Hello everyone,
We just got the word and it's not good news. I feel a little numb at this point.
My son's Pet/CT showed only a partial remission - Deauville 4 - so his oncologist wants to transition to ICE in hopes of reaching full response before auto stem cell. We had heard/read such good things about Brentuximab and it's helped so many people on this forum, we just had very high hopes.
For anyone who has been through ICE, I would appreciate knowing what your experience was like. They only give it as inpatient here, so three days in the hospital. I realize it's a tough one, so my son is wondering if he needs to plan to take the enitre week off from work, etc. and if we should plan on him staying with us afterwards (he lives alone). We do realize everyone is somewhat different, but it still helps to hear how other people fared and to have some idea of what to expect. The oncologist is not helpful in this regard.
Researcher, advocate, and caregiver to my son, age 24 at diagnosis
July 2016 Diagnosis ALCL ALK-neg
Sept 2016 E-CHOP x3; PET scan CR
Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
Dec 2016 PET scan CR
March 2017 Experiencing symptoms; CT-PET scan shows relapse.
April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
October 2017 Clear scan after auto. Begin Brent for maintenance X3
January 2018 PET-CT shows relapse. Begin Keytruda in Feb
May 2018 CR after just one dose of Keytruda.
Scan in August, 2018. ALL CLEAR
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I made a separate post on this, but no one responded. I will try here.
My son's PET scan showed only partial response to Brentuximab, so it is on to ICE in the hospital, in hopes of getting to NED this time so he can have a transplant. We had such high hopes that Brentuximab would work - it's done so well for a number of you on the forum. Major disappointment. Searching hard for that sliver lining.
Researcher, advocate, and caregiver to my son, age 24 at diagnosis
July 2016 Diagnosis ALCL ALK-neg
Sept 2016 E-CHOP x3; PET scan CR
Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
Dec 2016 PET scan CR
March 2017 Experiencing symptoms; CT-PET scan shows relapse.
April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
October 2017 Clear scan after auto. Begin Brent for maintenance X3
January 2018 PET-CT shows relapse. Begin Keytruda in Feb
May 2018 CR after just one dose of Keytruda.
Scan in August, 2018. ALL CLEAR
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Senior User
Sorry to hear this V! I have no experience with ICE however, I'm confused why ABVD wasn't the next protocol and if that yielded no response on to GDP for salvage then STC? Or, GDP then Adcentris _ STC?
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
“In the middle of difficulty lies opportunity."
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 Originally Posted by VMarie
I made a separate post on this, but no one responded. I will try here.
My son's PET scan showed only partial response to Brentuximab, so it is on to ICE in the hospital, in hopes of getting to NED this time so he can have a transplant. We had such high hopes that Brentuximab would work - it's done so well for a number of you on the forum. Major disappointment. Searching hard for that sliver lining.
I'm sorry to hear this Vmarie. I've been pretty much dumbfounded since your revelation that he was misdiagnosed and is really Hodgkins.
ICE is not nice. I think your son will be very weak, and need help. We didn't realize how different this would be compared to CHOP, and so were unprepared. I was alone so my sister flew in from Canada to help out as my husband had to go back to Hawaii. I needed help driving, feeding myself, getting prescriptions filled. I was very weak. I needed a blood transfusion after about 2 weeks as my hg so low. I spent most of my time lying around. I needed 2 pints of blood after about 2 weeks.
My experience may have been worse than others as it didn't work at all and Lymphoma returned full force by the 3rd week. So I don't know if it was the Lymphoma or the ICE that was making me weak.
Probably ICE will work wonders for Hodgkins! Let's hope so.
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
9/31/2018 - Clear scan - NED
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Super Moderator
Top User
Sorry to hear this. ICE is tough and in-patient, but thousands have done it. And, most of them are much older than your son and have co-morbidities. So, keep the chin up and full speed ahead.
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.
11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.
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.
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HI Chef,
The experts concluded (including Dr. Shustov - finally got our oncolgoist to call him and consult!) that the CHOPE he received is similar enough to ABVD that if he relapsed with CHOPE he would likely relapse with ABVD and it wasn't worth the try. He was already on Brentuximab (adcetris) from back when they thought it was ALCL, so he just stayed on that even after the Hodgkin's comfirmation, to try and get to NED.
They are treating this as relapsed Hodgkin's and ICE is the treatment of choice (although there are a few others that could be used none have been deemed more effective) at this stage to achieve NED before transplant.
Originally Posted by Chef
Sorry to hear this V! I have no experience with ICE however, I'm confused why ABVD wasn't the next protocol and if that yielded no response on to GDP for salvage then STC? Or, GDP then Adcentris _ STC?
Researcher, advocate, and caregiver to my son, age 24 at diagnosis
July 2016 Diagnosis ALCL ALK-neg
Sept 2016 E-CHOP x3; PET scan CR
Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
Dec 2016 PET scan CR
March 2017 Experiencing symptoms; CT-PET scan shows relapse.
April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
October 2017 Clear scan after auto. Begin Brent for maintenance X3
January 2018 PET-CT shows relapse. Begin Keytruda in Feb
May 2018 CR after just one dose of Keytruda.
Scan in August, 2018. ALL CLEAR
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Researcher, advocate, and caregiver to my son, age 24 at diagnosis
July 2016 Diagnosis ALCL ALK-neg
Sept 2016 E-CHOP x3; PET scan CR
Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
Dec 2016 PET scan CR
March 2017 Experiencing symptoms; CT-PET scan shows relapse.
April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
October 2017 Clear scan after auto. Begin Brent for maintenance X3
January 2018 PET-CT shows relapse. Begin Keytruda in Feb
May 2018 CR after just one dose of Keytruda.
Scan in August, 2018. ALL CLEAR
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Senior User
Originally Posted by VMarie
They are treating this as relapsed Hodgkin's and ICE is the treatment of choice
Hmmm ok, well here they do GDP for that, which is what I got. Didn't work, but different circumstances as you know. I hope ICE goes as well as it can for Christopher and he gets through it with minimal side effects! Thoughts are with you.
Shawn
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
“In the middle of difficulty lies opportunity."
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I will be praying for him that he handles it well with minimal side effects.
I am sending lots of love your way & lifting both of you up in prayer!!
Last edited by smileymitzi; 07-06-2017 at 10:22 PM.
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