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Thread: Just Wanted to Introduce Myself

  1. #1

    Just Wanted to Introduce Myself

    Hello All,

    Po18guy referred me to this forum. Thank you, Po!

    I had Diffuse Large B-Cell Lymphoma in the fall of 2015, was in remission until last summer when I was found to have a recurrence. This is a short summary, as I will ask a question towards the end, then can tell the whole story of my cancer journey later. I had an autologous transplant Jan. 3rd and 4th of this year. I am still in remission! YEAH!

    Hoping to hear from others who had similar experiences so we could share and give each other support.

    My question: The way people have put their cancer dxes, treatments, etc. at the end of their posts. Is this called the avatar? If so, please tell me how to write one. If not, advise me otherwise, thanks!

    I hope everyone has a wonderful weekend!

    ---Teacher Deb (retired!)

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Welcome! Thanks for joining. Your journey is called a "signature" and you can format/edit it via the user control panel. It is limited (mods and admins get to post longer ones), but with some abbreviation, you can get the gist of it in there.

  3. #3
    Thank You again, Po!

    So what is an avatar (if I even spelled it correctly)?

    I will check into doing a "signature" later today.

    Thanks again, and that was a quick response! Oh, I see you started this forum! Cool! Good job!

    ---Teacher Deb

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    You are very welcome! I saw a need for a transplant forum, as many of the existing lymphoma, leukemia and myeloma patients were undergoing them and the issues they raise are often peculiar to transplant. An avatar is the picture or image that will appear beneath your username on posts that you make. Allow the others time to read and reply, as some of them are still doomed to work for a living.
    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
    Quote Originally Posted by po18guy View Post
    Allow the others time to read and reply, as some of them are still doomed to work for a living.
    PO, I resemble that remark! Welcome to the forums, Deb. Glad you are still hanging in there for your Auto. Cheering hard for you!

    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. #6
    Hi David,
    Thanks for the welcome. So you must still work? It keeps you out of trouble, right? Just teasing here.
    Just read your signature at the bottom. You've had two transplants?! One was rough enough! Glad to hear you are still in remission...past two years. Keep up the good work!

    Teacher Deb
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!


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