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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.
    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
    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 {ALCL ALK-} 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-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    ďIn the middle of difficulty lies opportunity."

  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.

  5. #5
    Newbie New User
    Join Date
    Jan 2018
    Update Oct 2018 :

    Thanks to everyone on this forum for being my silent support system. I can never thank enough all of you active participants on this forum who provide tons of guidance, advice, support and help to the members of this forum. Note to self (I need to start doing that too).

    Just wanted to update on my situation after my post in Apr 2018. So as I had described earlier I went into my autologous stem cell transplant in on May 31. It was done at Memorial Sloan Kettering (Dr. Shah). Came out of the hospital by Jun 18th and was fairly smooth with not many complications. I had to go back in there for few more days as I started having a high temperature and was throwing up a lot at home. Stayed in for another few days and was back out before the end of June. Since then have been recovering well thus far and regained back most of my strength. Post transplant I was on a clinical trial with Dr.Horwitz at Sloan Kettering, where I started taking Romidepsin every 2 weeks starting in August which was planned to be given for 2years after transplant to prevent a relapse (T-Cell lymphoma is known to be notorious for a relapse).

    Went into my PET Scan check at the +100 day mark (mid September) and they noticed some activity in the abdomen and now have been diagnosed with a relapse of the AITL (approximately 3mo after the transplant). The tricky part was that the doctors did also see elevated levels of EBV virus in my blood, which could have caused my lymph nodes around the abdomen to be swollen and show increased activity in those PET scans. Subsequently they did a needle biopsy of the nodes in the abdomen and pathological report confirmed abnormal T-cells found (20.6%)

    Next steps - Going into a clinical trial with Cerdulatinib next week (Biological drug, Oral SYK/JAK Inhibitor). Goal is to get the lymphoma back into remission and prepare me for an Allo transplant. Trying to find a donor in the mean time.


    Might need some advice and support from this group when I get closer to the Allo transplant if all proceeds as per plan.
    Hoping for the best as I progress into the next leg of this journey.

    Best Regards

  6. #6
    Experienced User
    Join Date
    Jan 2015
    So sorry to hear about your relapse. We do have a very good example of long term survivor here POGUY18!!
    I just got back from clear scan in LA so 4 years now. Keep your spirits up!
    Recently enjoyed TCell Lymphoma conference in Hawaii put on by Dr Shustov and even attended by the mythical POGUY - awesome experience because of all the new drugs, immunotherapies, Amazon super computers, etc. stuff they are doing nowadays. It was very positive and exciting to hear all the new things in the pipeline.
    I also really enjoy this conference as there is a huge buffet (breakfast, snack and lunch) all free! Stay positive - we are all rooting for you.
    1/31/14 - Dx T cell lymphoma (ALCL ALK-neg CD30) 50+ nodes Stage IIIB
    4/15/2014 - 4 rounds of CHOP. PET scan clean but two new areas. 5th round of CHOP.
    5/15/2014 - New nodes in neck, fever returns, leave for City of Hope
    5/28/2014 - One round of ICE at City of Hope, admitted to hospital, high fever, nodes in lungs.
    6/15/2014 - 3 rounds of Brentuximab, prep for ALLO SCT.
    7/15/2014 - PET scan shows only one active area under port.
    8/7/2014 - ALLO SCT at City of Hope, brother 100% match
    10/7/2014 - Day 60 PET shows same node 1.5cm under port, everything else clean. Reduce immunosuppressants to get GVL effect.
    11/15/2014 - Day 100 PET shows same node is bigger, and there's a new one.
    11/18/2014 - Brentuximab again 5 rounds, return to Hawaii
    11/25/2014 - GVHD skin rash, back on steroids 30mg/day
    1/13/2014 - GVHD eyelids, back on steroids 30mg/day
    2/9/2015 - First clear PET NED
    2/9/2015 - Chronic GVHD, lips, skin, eyes - steroids 5mg/day
    9/31/2018 - Clear scan - NED

  7. #7
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Hello again and very sorry to hear of the relapse. Sadly, that is not at all unusual. My journey is similar, but I relapsed even before we could collect cells for an auto transplant. It was an immediate relapse. You may know my journey, as it is in my signature. I made the conscious decision to go the research route, via clinical trials, rather than jump straight into the allo - there was no known donor in any case. As to the drugs I received, it was my 5th salvage regimen that placed me in full response for an allo transplant.

    The top T-Cell specialists know that they have to remain several steps ahead of the cancer, so planning for an allo early on is prudent. I am glad that I (so far) do not have to try the latest clinical trials, although I'm getting enough of trials in combating the GvHD from the transplant. just three years later, you have several more options than I did.

    Please keep us updated, as there are enough horror stories and success stories are great to hear.

    Quote Originally Posted by Alison60 View Post
    So sorry to hear about your relapse. I just got back from clear scan in LA so 4 years now. Keep your spirits up!
    Recently enjoyed TCell Lymphoma conference in Hawaii put on by Dr Shustov and even attended by the mythical... - awesome experience because of all the new drugs, immunotherapies, Amazon super computers, etc. stuff they are doing nowadays. It was very positive and exciting to hear all the new things in the pipeline.
    I also really enjoy this conference as there is a huge buffet (breakfast, snack and lunch) all free! Stay positive - we are all rooting for you.
    "Mythical"??? Some days I wish I was only a myth!

    Honestly, it was great to see you again. Looking forward to 2019.

  8. #8
    Newbie New User
    Join Date
    Jan 2018
    Thanks everyone for the kinds words and support. Still a long journey to get to the Allo state, but one question I had around Allogenic transplant recovery.

    How has your experience been when having to deal with Acute GvHD or even Chronic GvHD post transplant. Is it super debilitating in terms of maintaining a lifestyle ? Trying to get an understanding of what I need to prepare for in terms of post transplant complications. Any pointers or material in this regards would be great. Thanks

  9. #9
    Moderator Top User
    Join Date
    Mar 2010
    I have not had a sct transplant, but have known a number who have had allo's and the GvHD question is the million dollar question, some experience it some don't some have a mild experience that can be controlled and other have a severe experience and the is no way of telling which category you will fall in to. Po may be able to shed some light on risk factors and thats perhaps what you need to explore.

    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  10. #10
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Quote Originally Posted by ptclguy View Post
    How has your experience been when having to deal with Acute GvHD or even Chronic GvHD post transplant. Is it super debilitating in terms of maintaining a lifestyle ? Trying to get an understanding of what I need to prepare for in terms of post transplant complications. Any pointers or material in this regards would be great. Thanks
    This is the absolute unknown in allo transplants. Each transplant is a 100% unique, never done before, never to be repeated scientific experiment. There are probably millions/billions of factors that are unknown regarding the compatibility of two disparate DNAs in one person.

    My recovery - 63 at the time, really pushing the upper age limit - has not been without its ups and downs and will probably continue for the remainder of my life. David52s, on the other hand (same age as I) has been a comparative breeze. He's more athletic and the better shape going in, the better shape coming out.

    You will most likely fall somewhere in between these extremes, depending on age and overall health. The minuses are that one may not survive the up-to-30% mortality within three years - sadly, we lost Didee just recently. I have passed the three-year mark and am still searching for the solution, but my (haploideitical) transplant was only a 5-10 match.

    The other plus is that research is ongoing and advancements are being made on a regular basis - it is far from a static situation. Still, it remains a bridge of sighs, as one burns the bridge when crossing it.

    I can only tell you what my choices were, and they were to further medical science via research. Only when my chance of third relapse was extremely likely and my chance of surviving extremely low did we decide on transplant.

    Bear in mind also that I was fighting three cancers simultaneously in 2015. Maybe not a record, but certainly a personal best. One or more of the three was essentially guaranteed to relapse.

    The bottom line is that you have the blessing of at least some amount of time before you have to cross that bridge. CAR-T and now even CAR-N/K research (MD Anderson) is unfolding before our eyes. Pathway inhibitors are on the market, both in research as single agents and in combination with established drugs.

    Dr. Horwitz is on the cutting edge and if he must scratch his head even once, he has the remarkable resource of the T-Cell Consortium as a knowledge bank.

    All of the foregoing does not change the unchangeable fact that: 1) there is no way of knowing if a certain treatment will be efficacious. 2) Once received, that treatment may eliminate other choices. 3) In the final analysis, we cannot now if the choices we made were the best.

    Cancer, like life itself, is unpredictable.

    David52s transplant thread: https://www.cancerforums.net/threads...ransplant-time

    And mine: https://www.cancerforums.net/threads...ence-(ongoing)
    Last edited by po18guy; 10-07-2018 at 04:02 AM. Reason: Added links


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