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Thread: What types of support helped get you through transplant?

  1. #1
    Senior User
    Join Date
    Sep 2016
    Posts
    310

    What types of support helped get you through transplant?

    I'm freaking out about my son's upcoming auto transplant. The evidence is slim that it is worth putting him through this, but here we go, because if we didn't do it and there is a relapse, we couldn't forgive ourselves. Anyway, I thought I would try to channel all this angst into something positive.

    Would all of you that have been through asct (and caregivers) post about what helped you the most, things that cheered you up, got you through the days and nights? Did you like having friends stop by? Did it help to have special food or treats brought in? Is it true you shouldn't eat any of your favorite foods because you will end up hating them? Is there anything you wish you had known then that you know now?

    Thanks so much - V
    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

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,395
    I'm am counter-cultural, so I rely on my faith. If you are freaking out and do not have an established coping mechanism, then a few anxiety meds can seriously help. They are on board even after friends leave and other distractions fade. Why are you doubting the need for the transplant? T-Cell Lymphomas become exponentially more difficult to fight with each relapse. The question is, which type of transplant? A haploidentical is known for less GvHD - except in my unique case, of course. If your son does this in first remission, he can likely avoid the litany of chemotherapy drugs, radiation and other un-pleasantries that go with T-Cell Lymphomas. But, it is a bridge from which there is no return.
    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.

  3. #3
    Regular User
    Join Date
    May 2016
    Posts
    46
    I am caregiver to my husband who had an auto stem cell transplant in August. Not going to lie. He suffered quite a lot. We both wondered at various times if he had made the right choice. He had many complications including gvhd which is very rare in auto sct, non stop diarrhea, pneumonia, sepsis. I was able to sleep in the other bed in his room which was great. He really needed me. He did not like a lot of visitors because he did not feel well at all. I coped by giving him everything he needed including helping him clean up and being there for rounds. Then I would go for a run. Eat out. My friends stopped by to support me. At least once a day I got out. I relied on the nurses. I prayed non stop and went to the chapel when I needed reinforcements. I cried when I was alone. I got support on this forum. He is now almost 90 days post transplant. He has really turned a corner. Getting stronger. Feeling better. His 3 month brain scan was clear. In the middle of it we had doubts - but I don't anymore. I hope you trust his team. We did. I hope it's going well for both of you. As bad as he feels it almost always gets better.

  4. #4
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    Thank you, Islanders.

    Po, I know anti-anxiety meds work. Too well - they are also very addictive. Not going there. I"m doing well overall. But still have moments when I feel someone punched me in the solar plexis at the thought that I could lose my son. I know that's selfish and I talk myself out of that bad place fairly quickly. My son isn't able to avoid chemo by any means- he's had six rounds of heavy-duty CHOEP and will be receiving BEAM before transplant. They won't be doing any radiation at any point for him, however. The transplant is auto - they won't do allo in first remission. And anxiety because clinical evidence that this is a benefit for his case is mixed. And he is very ALK-positive in many ways (young age is a big one, plus normal LDH, B2M, etc.) and stem cell is not suggested for ALK-positive. This is PTCL ALK-negative. It's too rare. I"m also told by a national T-Cell expert (Dr. Julie Vose) that none of the few studies out there on OS etc for ALK-negative are valid anymore due to DUSP22. You know they don't know what the heck to do with it, really. Options open up in relapse but we pray we never have to go there!
    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

  5. #5
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,395
    Quote Originally Posted by VMarie View Post
    This is PTCL ALK-negative. It's too rare. I"m also told by a national T-Cell expert (Dr. Julie Vose) that none of the few studies out there on OS etc for ALK-negative are valid anymore due to DUSP22. You know they don't know what the heck to do with it, really. Options open up in relapse but we pray we never have to go there!
    Well then, keep praying that you never have to go there! If anti-anxiety meds are out, then non-medical form of relaxation or stress relief could be the trick. Do you have a world view or belief system that could help? I so, even if unused or neglected for years, now is the time to dive back in.

    As to relapse, may it never happen! However, I have now survived two relapses as well as a mutation into two sub-types (PTCL-NOS, Angioimmunoblastic T-Cell Lymphoma). And, I have sustained this last one, as well as an allo transplant in my mid-60s. So, if it is ever needed, a young man should sail through this.
    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.

  6. #6
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    You are amazing - what you have been through, and serve as an inspiration! I so appreciate the folks that stay connected on this forum - and continue to update even (and especially) when it's good news. I want everyone to live long and prosper!! (Yes, I am a Trekkie! )
    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. #7
    Newbie New User
    Join Date
    Jul 2012
    Posts
    8
    I underwent ASCT over the past summer and am just past 100 days. I was inpatient and there were a few things that got me through - first, my wife was there every day, but after 25 years together, she also knew when not to be there - she can read me well, so once in a while she would just say she needed to go for a run or had errands etc, and give me some time. Since it was summer, she stayed at our trailer in a nearby campground, as we live about 70 miles away. When I felt like it we played board games and she had bought me some lego kits, although those are a challenge with chemo shakes. I had decent wifi, so was able to stay in touch with work, watch Netflix etc, I also had a laptop with a ton of motocross races to catch up on. Basically just allow him to pursue as many of his usual interests as possible when stuck in a wee room. Overnight sleep was impossible - hallway noise, bloodwork and getting up to the washroom every hour on the hour (Stupid Saline IV!!)made sure of that. I usually slept best in the morning up until noon. Permitted food from outside was a treasure - my hospital's food was horrendous - inconceivably so. I had thought it might be the conditioning and HD chemo, but then I would get something "real" from outside and while it didn't taste great, or "right" it was still discernible as food, whereas the hospital tray was untouchable. I'll try to add more later, but now I have to leave to spend 3 hrs in the car for a 20 minute radiation treatment!!

  8. #8
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    Thanks so much for posting, Tidman! We planned on getting him set up with Netflix and X-Box. Wee room is right. Also wee area. It takes 23 laps around the ward he will be in to make a mile! Did you have the option of out patient?

    I hope all is going well for you. Thanks again - V
    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

  9. #9
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Posts
    11,461
    What got me through with my allo was family. Most times I didn't even feel like reading and didn't ever turn the TV on.
    It is all very subjective as to what helps individuals through.

    I was also given a heat pack sheep teddy toy type thing. I had him sitting watching me, also talked to and confided in him. My sister was at the hospital for about 5 hrs perday. Hubby and a son took over for a couple of weeks.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  10. #10
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    Thanks for replying, Didee! I know everyone is different, but I still wanted to hear from folks as to what helped them/was a source of comfort. I found it touching that a stuffed toy helped you and I actually planned on finding my son's "lovey" to take to him (from when he was a little guy) which was a stuffed animal called "Puffalump Pony!" Of course, I will wash it first as it is now about 22 years old...
    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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