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Thread: Sharing T-Cell Lymphoma Journey

  1. #1
    Newbie New User
    Join Date
    Jan 2018

    Sharing T-Cell Lymphoma Journey

    I was not sure if there was already a specific thread to share some of the journeys for T-Cell lymphoma patients so creating one here.

    I am 44 YO and have been diagnosed with T-Cell lymphoma in Jan 2018.

    Background Info - I am of South Asian race, fairly healthy and active individual, exercise reasonably and eat healthy. Had finished my 600-mile bike ride from San Francisco to Los Angeles in the summer of '17 and a mountain hiking trip to 19,000 ft in Himalayas during the fall of '17. Somewhere in Nov '17 I started developing weird symptoms with my body. Symptoms were mainly itching of palms & feet, general fatigue and loss of sleep (due to the itching). Finally I met my Internal medicine doctor in Jan 2018. He noticed a slightly swollen lymph node on the neck and ordered a CT Scan that revealed a disease all along my neck and lower abdomen. Was referred to an oncologist after that.

    Diagnosis/Tests - Scedhuled an appointment with the Oncologist who quickly prescribed a Fine Needle Aspiration that revealed lymphoma. Was followed by a full PET/CT Scan, a core Biopsy and Bone Marrow Biopsy. Results were rapidly analysed and collated and it was diagnosed as a Peripheral T-Cell Lymphoma - NOS Stage-3 (Bone Marrow was negative).

    Treatment - Started taking opinions with other oncologists based on the pathological reports and finally decided to begin treatment at Memorial Sloan Kettering, NY with Dr. Steven Horwitz (he is one among the best when it comes to T-Cell Lymphoma). Sloan did another round of pathological tests and updated the earlier analysis to Angioimmunoblastic T-Cell Lymphoma (AITL) from the original PTCL-NOS. Albeit no change in treatment plan and still continued with my CHOEP-14 regimen thus far. Have been through 5 out of the 6 total cycles. Have been in CR after the 4th cycle. Besides the usual side effects of the chemo (Neuropathy, Tiredness, Loss of apetite) the treatment has been well tolerated. Was able to continue my normal working schedule (mainly sedentary) through the whole treatment thus far except for the days of the chemo.

    Next steps - Will be doing the Auto SCT in summer '18. Getting prepared for it now. Appointment scheduled with SCT specialists later this month (Apr '1

    This forum has been a huge help to me to see the different stories and advice from some really smart and helpful people. Cannot thank enough to everyone who has helped me mentally cope with this journey thus far and helped me stay positive.

    Will keep everyone posted as the journey unravels.

    Best Regards

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Welcome! Sorry to hear of your diagnosis, but you are being seen by one of the best. That is the greatest boost to your prognosis that could happen.

    p.s. Thank you for your very kind words. It is very satisfying to have learned, even if the hard way, the purpose of one's life.
    Last edited by po18guy; 04-15-2018 at 12:33 AM.
    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 TREC (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.
    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 measureable - 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.
    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.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
    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 of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

  3. #3
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Welcome and of course sorry to hear this as well. Sounds like you have a good grasp, team and plan in place. They will put the hickman in, put you on GCSF for 5 days or so, before, and collect your cells over two days, one if your lucky. It's easy but boring laying there lol. Your high dose chemo will make you feel rough after several days once it starts dropping your counts and vomiting is the norm. If you feel super rough hit them up for the morphine pump, don't be shy

    My roomie when I went through my Allo had the same thing and we went through it together. You should be in and out in 2-3 weeks provided all goes according to plan. I was in for 5. Bring your laptop and phone and headphones although once you start feeling rough you really won't want to do much. Pack light man, they have the pj's and whatnot but bring slippers! Also, shave your head when you get started, it'll come out anyways (most everyone's does). They should have a shaver available there and a nurse will buzz it off for ya! Bring a toque to keep your noggin warm as the wards are usually a bit chilly anyways.

    If you do crosswords or whatever bring em'. Try to shower daily and drink as much water as you possibly can, then drink some more! Walk the ward as much as you're able to, exercise is good! You'll do fine on the food for the first week or so but then it tastes like dirt (metal actually) and can be painful if you develop mouth sores. Use the mouthwash vigilantly, brush your teeth and suck on those ice chips or popsicles to minimize mouth sores. Get someone to bring them for you, however, they may have some that others have left behind. Smoothies are great if you can have them, just be careful and make sure it's washed extremely well, you don't need any bugs while your counts are down.

    Wish you nothing but success for your upcoming transplant, good luck
    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet (+) 5/19/16
    Stop ABVD 9/01/16
    Pet (+) 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 4/26/17
    Restart Adcentris 5/18/17
    MUD Allo 8/23/17
    Pet scan NED 12/01/17

    “Each morning when I awake, I experience again a supreme pleasure - that of being alive"

  4. #4
    Senior User
    Join Date
    Jan 2015
    My 55 year old brother was diagnosed with AITL about 4 years ago. He did the CHOEP, which worked initially, and after relapse, did an auto. That too unfortunately failed within about 2 months, and through this forum, heard of Dr. Horwitz and made an appt. to see him for his opinion. As you said, one of the best and most caring. My brother eventually moved to NY after the Romedepsin got him into remission, then developed a B cell lymphoma, then did a trial with Dr. Horwitz, got into remission again for both B and AITL, and finally had an allo two years ago. Dr. Sauter at MSK was his transplant doctor. I'm glad you are there because it made all the difference in the world - basicallly between life and death. His onc in VA brushed his hands and said "I told you this was an insidious disease" and said there was nothing more he could do. Seeing and being treated by a specialist gives you hope of surviving. You are young and in good hands! Best of luck to you and keep us informed as to how you are doing.


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