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Thread: Anyone going to the Survivorship Symposium in Denver?

  1. #1

    Anyone going to the Survivorship Symposium in Denver?

    I stumbled across this a few months back: https://www.bmtinfonet.org/9th-national-celebrating-second-chance-life-survivorship-symposium-2018. They hold a transplant survivor symposium every year. It's in Denver, CO in April. My mom and I have registered, as she was my caregiver during transplant. We are making the two-day symposium part of a two-week trip to Colorado, Wyoming, South Dakota, and Minnesota. Can't wait! I'm hoping to meet other young adult survivors, since those can be few and far between.

    Just thought I'd mention the symposium here if anyone else is interested.
    5/12 Dx at age 24 with DLBC NHL Stage 2B presenting as <10 cm tumor in left lung
    5/12-9/12 R-CHOP x 6. Followup 3 month scans
    4/14 Relapse
    6/14-7/14 R-ICE x 2 inpatient
    8/21/14 BEAM and auto transplant
    10/14-11/14 Radiation and viral pneumonia
    2/15 Relapse
    3/15-9/15 GVD-R x 7
    10/15 Dx restrictive lung disease.
    1/16 Relapse
    2/16-9/16 Nivolumab x 8
    9/16 Relapse
    10/16-1/17 ESHAP x 3 inpatient
    1/17 Diagnosis changed from DLBC to PMBCL
    2/21/17 Bu-mide. Myeloablative allo transplant. Sibling donor 8/8
    3/9/17 Discharge on Day +16 to Hope Lodge
    3/27/17 Readmitted for croup, BK virus, acute ocular GVHD.
    4/17/17 Discharged to my home
    5/1/17 Readmitted. Dx pneumonia
    5/10/17 Discharged on 2 liters supplemental oxygen.
    8/17 Readmitted briefly for a flareup of pneumonia.
    9/27/17 Relapse. PET confirmed.
    11/1/17 First treatment of Brentuximab Vedotin. Total of 16 planned.
    1/25/18 50% tumor reduction!

  2. #2
    Super Moderator Top User po18guy's Avatar
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    I wish! As an oldster, you might find that there are even fewer of us! As with all such events, publicity is key. How about posting a link? Surely, there are quite a few in the Denver metro area that could make it.
    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
    Well, I can't speak for "young survivors".....lol.....But I am registered and will be there. Since I am in Wyoming, just a short little drive down. So we shall look for you !

    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.

  4. #4
    Great! Don't have to be young. I'll be the 30-ish woman with brown hair heavily streaked with gray and sporting an oxygen tank or concentrator as my fashion accessory.
    5/12 Dx at age 24 with DLBC NHL Stage 2B presenting as <10 cm tumor in left lung
    5/12-9/12 R-CHOP x 6. Followup 3 month scans
    4/14 Relapse
    6/14-7/14 R-ICE x 2 inpatient
    8/21/14 BEAM and auto transplant
    10/14-11/14 Radiation and viral pneumonia
    2/15 Relapse
    3/15-9/15 GVD-R x 7
    10/15 Dx restrictive lung disease.
    1/16 Relapse
    2/16-9/16 Nivolumab x 8
    9/16 Relapse
    10/16-1/17 ESHAP x 3 inpatient
    1/17 Diagnosis changed from DLBC to PMBCL
    2/21/17 Bu-mide. Myeloablative allo transplant. Sibling donor 8/8
    3/9/17 Discharge on Day +16 to Hope Lodge
    3/27/17 Readmitted for croup, BK virus, acute ocular GVHD.
    4/17/17 Discharged to my home
    5/1/17 Readmitted. Dx pneumonia
    5/10/17 Discharged on 2 liters supplemental oxygen.
    8/17 Readmitted briefly for a flareup of pneumonia.
    9/27/17 Relapse. PET confirmed.
    11/1/17 First treatment of Brentuximab Vedotin. Total of 16 planned.
    1/25/18 50% tumor reduction!

 

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