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Thread: T-Cell rich Diffuse Large B-Cell Lymphoma- 25 year old

  1. #1
    Newbie Regular User
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    Apr 2019

    T-Cell rich Diffuse Large B-Cell Lymphoma- 25 year old

    My boyfriend recently found out that he has lymphoma in the spine. We first found out because he had a lot of pain in his legs and it got to the point where he was unable to walk or sleep. This went on for about a month so you can only imagine how frustrated and sleep deprived we were since we live together. He ended up having a tumor the size of a golf ball on his L2 vertebrae. It was so bad that when we first met the oncologist he immediately sent us to the ER because he was very close to becoming paralyzed.
    THANK GOD that is not the case anymore. After a rough few days, they concluded that his legs would be okay because his strength was progressing with the steroids and pain medication. (First blessing we received regardless of the actual condition). They ended up doing radiation immediately to reduce the tumor size (which worked) and now he is able to walk and is pain free!

    HOWEVER....he still has been diagnosed with lymphoma.
    The biopsy and pathology results of the tumor came back saying that the results were "inconclusive" because the "specimen" was exhausted? They had our local pathologist AND Stanford look at the specimen and they also said the same.

    They just now did another biopsy procedure so they can do another pathology report with more of the mass that is taken out.
    We are honestly confused and afraid. We don't understand why it was inconclusive.. We also are just so baffled about all of this because the PET scan showed NO other site with cancer cells, the doctor first said that lymphoma usually always comes from another primary location but to his surprise, this was my boyfriends primary and only site with cancer in it. Also, all of his CT scans and bloodwork is completely normal. The cancer is not spreading from what the Dr said. This all just seems so bizzare to us especially because they can't conclude the type of lymphoma.

    I personally am afraid that they will be unable to find exactly the kind of cancer it is...They found out that it is not in the bone marrow, but it will be treated as "stage 4" cancer because it got into the outer layer of the vertebrae and it created a little hole. The Dr reassured us that once the tumor and cancer is gone the bone will repair itself. The Dr as of now plans to give him chemo once every 2/3 weeks for about 6-8 months.

    I am about to be 25 years old as well. My boyfriend and I are both graduating from college in a month and we just found out about his cancer 2 weeks ago. We plan to get married and have children, and we are barely preparing to start our careers. My boyfriend is healthy, at a good weight, and likes to work out. We are changing our diet to a much richer and healthier one. I do believe in God and we have surrendered everything to him.

    Does anyone have any intake on this that my help ease my mind? God bless.
    Last edited by po18guy; 04-24-2019 at 01:37 AM. Reason: Diagnosis update

  2. #2
    Senior User
    Join Date
    Mar 2017
    Hello and welcome,
    No doubt you'd rather not have found this place, but it's a good place for information and support nonetheless.

    From what you write, I'd assume that the reason why the biopsy sample is "inconclusive" is because, due to the tumor location and to the symptoms it was causing, they "zapped" it to preserve your boyfriend's leg function before they had a chance to get a sample. Is that how it happened?

    I would also assume that the plan is now to treat it as DLBCL with a chemo regimen such as R-CHOP or R-EPOCH plus intrathecal methotrexate. This is not something to look forward to, of course, but many here have been through it, and your boyfriend being young, healthy and fit should help him get through this.

    You may want to make sure your oncologist is a hematologist, and if you can, consider going to a National Cancer Institute treatment center to put every chance on your side.

    Wishing you both all the courage and strength you need,


  3. #3
    Moderator Top User
    Join Date
    Feb 2011
    Sorry that you and your BF had reason to seek out a forum like ours!

    Lymphoma comes in many forms, but the most common is one called Diffuse Large B Cell Lymphoma or DLBCL. That is typically treated with the R-CHOP regimen, a combo of five drugs that are given as infusions in the schedule you described. DLBCL has a very high cure rate, particularly in young people - your boyfriend has a very high probability of being cured.

    The side effects of R-CHOP include mostly a feeling of fatigue and loss of energy. Try to stay active to the extent possible - go for walks, etc. Nausea is a possible side effect, which can be controlled, and constipation is another controllable effect (but not one to be ignored!).

    I would agree that the lack of a more precise diagnosis is due to the fact that the tumor was hit with radiation before a sample was taken. That would kill many cells and make it hard to identify the tumor pathology. And, although it is a bit unusual for lymphoma to show up in bone as the first and only site, in fact, lymphoma can and does show up anywhere.

    You might want to talk with your doctor about your boyfriend banking sperm for future use - if it is recommended or not. I don't think there are long term effects from chemo in that regard, but certainly in the short term there could be some. It's worth the discussion.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    1/2018: Remission continues (>7 years) Down to one checkup/year!

  4. #4
    Newbie Regular User
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    Apr 2019
    Thank you!! I added more to my original message with some updates!

  5. #5
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    Apr 2019
    They have now identified it as Hodgkins Lymphoma, but I think theyíre still waiting on the final report to know exactly the specifics to it. Iím excited to hear this because Iíve heard hodgkins is very treatable! We are planning to speak to a sperm bank specialist just Incase!
    As of now theyíre planning for my bf to do chemo once every 2 weeks for 8 months but theyíre going to do a pet scan every 2 months to see the progress. Iím very nervous for him to start the chemo but also excited because I just want to start the treatment to recovery already! We have so much faith in god and our mentality is going to help us stay positive through this I can feel it. We have also changed our diet a lot so I know that will help him during treatment. Thank you so much for the responses already

  6. #6
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    Apr 2019
    Thank you for your response! I have updated some info

  7. #7
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear this. However, and this can be huge: have the biopsy sample re-evaluated by a major cancer research center or university pathology lab. Some Anaplastic Large Cell Lymphoma (ALCL - an aggressive T-Cell lymphoma) can be - and has been - mistaken for Hodgkin's and vice versa. You want to be treated for the correct variety. While there is some overlap in treatment, there have been some tragic results from misdiagnosis.

    Granted, you most likely have Hodgkin's, but best to be absolutely certain.
    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.

  8. #8
    Moderator Top User
    Join Date
    Mar 2010
    hi, if it is HL then that is very treatable and the chemo used is ABVD and most people make remission, I believe the current rate is near to 90% and its usual to check that the treatment is working and if its not responding as well they escalate to a stronger chemo called BEACOPP

    Once its confirmed 100% its HL you may want to amend the title so that other HL patients reply and share their experiences with ABVD

    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.

  9. #9
    Newbie Regular User
    Join Date
    Apr 2019


    Quote Originally Posted by johnr View Post
    hi, if it is HL then that is very treatable and the chemo used is ABVD and most people make remission, I believe the current rate is near to 90% and its usual to check that the treatment is working and if its not responding as well they escalate to a stronger chemo called BEACOPP

    Once its confirmed 100% its HL you may want to amend the title so that other HL patients reply and share their experiences with ABVD

    Thank you!! Great advice

  10. #10
    Newbie Regular User
    Join Date
    Apr 2019
    Thank you! Our oncologist sent the biopsy to Stanford Hospital and Research Center which is a top cancer center here in California, so we are just waiting for them to confirm that itís HL.


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