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Thread: Newly diagnosed with Angioimmunoblastic T cell lymphoma (AITL) and need help!

  1. #1
    Newbie New User
    Join Date
    Apr 2019

    Newly diagnosed with Angioimmunoblastic T cell lymphoma (AITL) and need help!

    My dear friend was just diagnosed with Angioimmunoblastic T cell lymphoma and we have been told its fast progressing and she needs immediate treatment. She will get a second opinion/consult with a t-cell specialist and has been told to start chemo on Monday since the disease is so fast moving. She is determined to beat this and I want to help her. My head is spinning from all this reasearch. Can anyone help with any advice as to what we should do when newly diagnosed with AITL? We are in the Bay Area if that's helpful. I know UCSF is supposed to have a really great T-cell specialist but please let me know if you have any other ideas or thoughts. Really appreciate the help; we need all the help we can get. Thank you!

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear this. Now, of the four identified forms of AITL, most are aggressive. Still, it is not an emergency until and unless her health has seriously declined. It remains treatable at all stages, and staging in cases of lymphoma is completely different from all other cancers. Stage III and IV are very common, due to the nature of the disease. A second opinion on the pathology is also highly recommended, as mistakes are made in identifying the rarer lymphomas.

    Once treatment begins, watch like a hawk for immediate and continuing response. If it responds poorly or stops responding, doctor must have plans B, C and D at the ready. Such thinking saved my life.

    Here is a partial listing of specialists and centers from the T Cell Leukemia Lymphoma Foundation. The foundation was established by Dr. Andrei Shustov at SCCA in Seattle. He is both nationally and internationally known for his expertise.


    Personally, I have known him for ten years and credit him, his expertise and his judgment with saving my life three - possibly four times. If you can swing it, a consult with him would prove invaluable, as his attitude and aggressiveness against an aggressive disease is exactly what is needed.

    Give this all some time to digest. It will settle in and life will make more sense shortly. It is the immediate post-diagnosis period that is the most unsettling.

    F.Y.I. Dr. Shustov has a preliminary schedule of Saturday, June 8th for his day-long T-Cell patient education seminar in San Francisco. These are an excellent opportunity to go one-on-one with a world class research hematologist, to network and to have hope restored. Details will be posted soon on the TCLLF website.
    Last edited by po18guy; 04-12-2019 at 07:25 AM.
    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.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    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
    Experienced User
    Join Date
    Apr 2019
    Hit with the same diagnosis out of the blue 15 Feb 19. Acute AITL has been unsettling but there are some positives. Stage 3 and "B" symptoms may cause detection before there are a lot of secondary Stage 4 tumors to deal with, and some aggressive cancers respond better to treatment because the more frequently they divide the more vulnerable they are to chemo. Hopefully things have slowed down to more of a routine as treatment as started, as they have in my case. Right now I am progressing through the CHOP cycles and evaluating SCT location alternatives. Stay strong, stay hopeful, and may your journey be gentle.
    63 years old.
    21 Jan 19 - Victorious Bikram 90 Min Hot Yoga!
    22 Jan 19 - Referred to ER for potential appendicitis, CT w/ contrast was negative for appendicitis but was informed I should see an oncologist ASAP, amused & annoyed
    25 Jan 19 - First visit with oncologist - first words, " I fear we are dealing with a serious form of Lymphoma, some which is not curable", PET Scan and Biopsy ordered, in denial
    14 Feb 19 - "B" symptoms debilitating, on Morphine top off with Extra Strength Tylenol, no longer in denial
    15 Feb 19 - Diagnosed Acute AITL - Stage 3B, 6 cycles CHOP and Auto SCT immediately following recommended, in shock
    01 Mar 19 - First CHOP cycle on way to SCT, resolved to see this thing through!
    19 Jun 19 - Last CHOP cycle
    03 Jul 19 - Scheduled for Transplant
    05 Aug 19 - Transplant deferred, lung surgery to remove growing nodule
    29 Aug 19 - Re-scheduled for Transplant
    23 Sep 19 - Admitted for Auto Transplant
    12 Oct 19 - Discharged from Transplant to home recovery


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