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Thread: Advice needed re upcoming Auto stem cell transplant

  1. #1
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    Advice needed re upcoming Auto stem cell transplant

    Vmarie here. My son (age 24) will be receiving auto stem cell transplant after two more rounds of CHOEP. They are giving us a choice of inpatient or outpatient. I will be the primary caregiver for my son for the duration. (We do not have any relatives in the state to help us or friends to call on for daytime help.) We will also need to find temporary housing near the hospital because we live about 1 hour away.

    For those of you who were inpatient, did you wish you were outpatient? Was it really disruptive for sleep at the hospital (blood draws at midnight! Vitals checked every four hours!)? Would you have been more likely to get up and about at home vs. the hospital? Did it bring you down mentally being in hospital for three weeks vs. going home every night? What did you appreciate most about being an inpatient? What did you dislike the most? I know food isn't the greatest, but I would be bringing in (approved) food most days.

    Your experience and feedback are much appreciated!
    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
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    Aug 2014
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    I can only give input from our current inpatient treatment but maybe it will be helpful to you. First....our son engrafted today which is great news and surprising because it is Day#8 which is early! He has had a good inpatient experience (except for a couple of very sick days) & has several complications: major stomach infection, tachycardia, fever, chills, nausea etc. Meds were given but not too effective until engraftment...today he had 11 bags hanging from his IV pole. They assure him he will see rapid improvement from now on and discharge will probably be next week.

    I don't know about all hospitals but the hospital associated with MD Anderson in Phoenix has a 2:1 nurse/patient ratio so there has been lots of good care. Sure.....there are some bad moments but I sleep better knowing professionals are in charge. We also live over an hour away so have stayed home most of the time and talked via phone or email instead. This is the 15th day in the hospital but the first 7 were chemo days and he felt fine. The crash came after the transplant and the worst days were Days 2-7 with great improvement today. The food choices in this hospital are very good with no complaints....however, our son had no food or drink for the past 4 days because of his stomach issues. No appetite then anyway so no big deal...today he is on a clear liquid diet and hoping for more options tomorrow. In his case, there was no need to bring in food nor has there been a need to be there. When feeling good, he occupied himself with walking and visiting with friends via the phone and when sick, he needed to concentrate on himself and not be distracted. We are renting a condo near the hospital for part of the recovery, neither of us live within the required distance from the hospital.

    I don't know how different your son's treatment/process will be but it is indeed daunting. I applaud all who do this, it takes a strong will to live and strength of character. We have always been proud of our son and of his many accomplishments but none compare to this.

    I wish you & your son strength and good luck with this journey. We are always Moms.....
    Ann

  3. #3
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    Thank you, Ann! Happy to hear your son did great on day eight, but sorry to hear he went through so much illness. How old is your son? And did he have BEAM chemo before transplant?
    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. #4
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Posts
    10,342
    Mine was scheduled as outpatient, but I developed a neutropenic fever high enough that they admitted me. This is almost to be expected. However, since you will be temporarily living closer, outpatient may be the way to go. It is easier to go in to the hospital than to try to come out if you were scheduled as inpatient.
    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. #5
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    Quote Originally Posted by VMarie View Post
    Thank you, Ann! Happy to hear your son did great on day eight, but sorry to hear he went through so much illness. How old is your son? And did he have BEAM chemo before transplant?
    Our son just turned 52....no longer a kid but without a spouse or children so we gladly took on the role of caregiver for this journey. He was in remission for 2 years (DLBCL...stage 4) before relapse. He had two sessions of RICE but not successful so then had 3 sessions of R-DHAP and reached the NED goal late August. He had R-BEAM in the hospital pre-transplant so he had a lot of chemo within the past few months and that might explain his post-transplant crash. However, it sounds like most experience some sort major crash after transplant but, hopefully, bounce back rapidly. Our daughter is a pediatric oncologist and even she is amazed how quickly the body can heal. I am hoping our son will recover quickly, he is very active and in good shape overall and certainly motivated.

    He was never given the option of being an out-patient. Perhaps his doses and treatment were a bit different just as each cancer is different. On the days he felt OK he managed to keep himself busy. Friends called and visited and he did a lot of walking in the halls. On the days he was really sick I was relieved to know highly trained experts were in charge. I'm a bit nervous about taking care of him after discharge & hoping there won't be a crisis but we will continue to take baby steps a day at a time.

    This site has a wealth of information from people who have shared this experience. It has been extremely helpful to me....the more information we can gather, the better it is. Also, it helps 'knowing' you aren't alone on this journey.
    Ann

  6. #6
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    Thank you for responding, po18guy. Are you in Hawaii now? Would love to hear any news from the patient education seminar.

    I have read that it's common to spike a neutropenic fever as an outpatient and to have to go in for treatment and it's less likely to happen as an inpatient because you are monitored so closely. Of course, as mom and caregiver, this is scary to me. What if we/I don't catch it in time, etc?? How hard is it to get up, dressed and out the door every single day for your appt when you feel like...you know...not good. Have you had any issues with hospital-acquired infections? On the other side (inpatient), I'm told that's a concern. Outpatient is clearly more stress on the caregiver (me) but I want what is overall best for my son.
    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
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    Thank you, Ann! I wish the very best for your son. Please keep us posted on his progress. (My son will receive BEAM conditioning pre-transplant after a short break from six rounds of CHOEP, to which he is responding well - NED at his last PET scan!)
    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

  8. #8
    Regular User
    Join Date
    Aug 2014
    Posts
    33
    Quote Originally Posted by VMarie View Post
    Thank you, Ann! I wish the very best for your son. Please keep us posted on his progress. (My son will receive BEAM conditioning pre-transplant after a short break from six rounds of CHOEP, to which he is responding well - NED at his last PET scan!)
    Thanks....hopefully, all will go well for you and your son also. This is a path no one wants to be on but you have lots of experienced, knowledgeable people on this forum to assist.

    Recovery is an amazing thing to see. In one day, my son has gone from feeling miserable to no fever or pain, stopped one antibiotic, added soft food to his diet and is up walking the hallways. His neutrophil count increased from 100 to 300 so he is on the right road! We are grateful for the prayers and help along the way and this forum has been reassuring and helpful.
    Ann

  9. #9
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    Aug 2015
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    25
    We were never given an option-it was inpatient only. Plus my son had TBI. He was very sick and there is no way he could have done this auto transplant
    as an outpatient. There was enough to be careful of and monitor once he was released from the hospital. The care he received as an inpatient is 2nd to none
    in my opinion. It takes a special nurse to be able to do what they do and are so very caring.

    Just as azann said same happened with our son-one day looked and felt horrible next day great!
    son with t-cell ALCL-. CHOP; autologous; MUD allo.

  10. #10
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    Hi Ann!

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

    VMarie


    Quote Originally Posted by azann View Post
    Thanks....hopefully, all will go well for you and your son also. This is a path no one wants to be on but you have lots of experienced, knowledgeable people on this forum to assist.

    Recovery is an amazing thing to see. In one day, my son has gone from feeling miserable to no fever or pain, stopped one antibiotic, added soft food to his diet and is up walking the hallways. His neutrophil count increased from 100 to 300 so he is on the right road! We are grateful for the prayers and help along the way and this forum has been reassuring and helpful.
    Ann
    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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