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Thread: Advice needed re upcoming Auto stem cell transplant

  1. #11
    Regular User
    Join Date
    Aug 2014
    Posts
    33
    Quote Originally Posted by VMarie View Post
    Hi Ann!

    Just wondered how your son is doing? I hope his recovery is going well.

    VMarie
    Thanks for asking....I am once again 'lurking' on this site...

    This is day #55 and life is 'almost' back to normal for our son. The usual precautions (bacteria-free diet, avoiding crowds, wearing mask when outside etc.) are still in place but energy level is good and most of the transplant side-effects have faded away.

    However, 2 days ago he discovered a 'knot' in front of his ear, close to the jaw. He has an appt. with the transplant Dr. on Dec. 1st but might be difficult to get an appt. much before then with the holidays etc. He is waiting to hear back and, in the meantime, stress and worry are high. I have done research on transplant relapses but most refer to grafting problems....his counts are good so that shouldn't be the problem. I know we won't really know what's going on without a PET scan but it may be awhile.

    We are sick with worry too. Our son has been a true fighter and has much to live for so, hopefully, this is a false alarm. It seems early after the massive RBEAM to have Lymphoma return but maybe that's just wishful thinking on my part.

    Hopefully, I will have positive news soon!

  2. #12
    Regular User
    Join Date
    Aug 2014
    Posts
    33
    Today's update:
    Our son saw the transplant Dr. yesterday and had labs....all are excellent except for neutrophil count. His are extremely low so he will be back on booster injections (+ a new antibiotic) and we'll see what happens. Hoping the nodule by his ear will decrease as the neutrophils increase. The nodule could be a bacterial infection, salivary gland blockage etc. so it's a bit of a 'wait & see'. I'm sure there will be additional moments of panic but, hopefully, the good days win!

    I'm sure your son will do well throughout this process....his age is a great benefit. Our son enjoyed having friends visit when he felt OK but once the post-transplant crash hit, it took all of his energy to concentrate on himself and he didn't want visitors. He was in good hands with the well-trained nursing staff and quickly started down the road to recovery. It is equally important for you, his mom, to have good support....caring & concerned friends were truly helpful on the days I needed to 'vent'.

    Enjoy the holidays....you and your son will get through this and be able to enjoy holidays for years to come.
    A.





    QUOTE=azann;322815]Thanks for asking....I am once again 'lurking' on this site...

    This is day #55 and life is 'almost' back to normal for our son. The usual precautions (bacteria-free diet, avoiding crowds, wearing mask when outside etc.) are still in place but energy level is good and most of the transplant side-effects have faded away.

    However, 2 days ago he discovered a 'knot' in front of his ear, close to the jaw. He has an appt. with the transplant Dr. on Dec. 1st but might be difficult to get an appt. much before then with the holidays etc. He is waiting to hear back and, in the meantime, stress and worry are high. I have done research on transplant relapses but most refer to grafting problems....his counts are good so that shouldn't be the problem. I know we won't really know what's going on without a PET scan but it may be awhile.

    We are sick with worry too. Our son has been a true fighter and has much to live for so, hopefully, this is a false alarm. It seems early after the massive RBEAM to have Lymphoma return but maybe that's just wishful thinking on my part.

    Hopefully, I will have positive news soon![/QUOTE]

  3. #13
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    Hi Ann,

    Great to hear that it was not lymphoma returning for your son! We were able to take a short road trip to visit family over Thanksgiving, before this all hits. My son did well the entire time.
    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

  4. #14
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,331
    VMarie, your son is generally in the same category as almost all systemic T-Cell Lymphoma patients. ALCL (It should be called ALTCL, actually) is a unique sub-type, but the ALK- factor only places it in with the rest of us. ALK+ is a great benefit for those whose lymphoma cells express it. Having said that, your son has a huge advantage over all other forms of T-Cell Lymphoma, and another over the rest of us: 1) CD30+. That is a specific target for which a new drug was developed: Adcetris or SGN35. The brilliant concept of a "drug-antibody conjugate" (think: Trojan horse) will certainly lead to similar drugs in the future. 2) his age. 30+ years younger than the average demographic for T-Cell Lymphomas. The young can undergo treatment which would place us older folks at unreasonable risk.

    So, if you can find a little room here to relax, then please do - life is too short already!
    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
    Quote Originally Posted by po18guy View Post
    VMarie, your son is generally in the same category as almost all systemic T-Cell Lymphoma patients. ALCL (It should be called ALTCL, actually) is a unique sub-type, but the ALK- factor only places it in with the rest of us. ALK+ is a great benefit for those whose lymphoma cells express it. Having said that, your son has a huge advantage over all other forms of T-Cell Lymphoma, and another over the rest of us: 1) CD30+. That is a specific target for which a new drug was developed: Adcetris or SGN35. The brilliant concept of a "drug-antibody conjugate" (think: Trojan horse) will certainly lead to similar drugs in the future. 2) his age. 30+ years younger than the average demographic for T-Cell Lymphomas. The young can undergo treatment which would place us older folks at unreasonable risk.

    So, if you can find a little room here to relax, then please do - life is too short already!

    Yep,

    Adcedris/Brentuximab Vedotin/SGN-35 is specific to ALCL and some kinds of Hodgkins which express CD30 protein. As PO notes, it works by circulating all through one's system looking for cells that have the CD30 protein, and it kills them. Since ONLY ALCL cells (and, as noted, some Hodgkins cells) express that protein, this drug kills the devil out of lympho0ma cells, but nothing else. I have had it twice, and both times it put me in remission straight away. They are trying now to figure out how to make that kind of remission permanent.....which often it isn't now. That said, it saved my bacon twice.

    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. #16
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    Hey Po and David,

    I do know about SGN-35. Remember, I'm the Queen of Research! And my son would have qualified for the clinical trial for it - but we could not wait to get that together - had to move on chemo in Colorado asap. Now it's only available in relapse. Which just serves to make me slightly crazy because if there is such a high relapse rate after ASCT, and a very effective drug that can help now, then why do ASCT?? Just go for watchful waiting and then hit it with SGN-35, etc. if necessary. It's a heavy burden being the only one in the family with this body of research/knowledge, including those awful stats on ALK-negative,. BUT i DO take heart that he has many positives in his favor, and young age is, of course, one of the biggest pluses. A number of studies consider age the equalizing factor - which would make him ALK-positive - ish! I"m going with that.
    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

  7. #17
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,331
    By the numbers, I should have died in 2008, and if not, then in each year following. But, I haven't. Each drug that I have received is also a potential remission-producer for your son. And new drugs are appearing regularly. He can do an allo if need be, but we pray that need never arises. We all know that life is not fair. Good! If life was fair, we would all have cancer. I can live with unfair.
    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.

  8. #18
    Senior User
    Join Date
    Sep 2016
    Posts
    310

    Po18guy

    Hi PO

    Just wanted to let you know I spoke with Alicia at the T-Cell foundation. She's very nice. She told me to send my questions to her and she would see if she can get Dr. Shustov to answer them at the roundtable on Saturday! She said she will be recording audio that she can send me. So we shall see how it goes.

    Thank you for alerting me about the foundation!

    VMarie
    Last edited by po18guy; 12-08-2016 at 01:11 AM.
    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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