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Thread: Primary Splenic DLBCL Stage 1 Treatment Question

  1. #1
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    Primary Splenic DLBCL Stage 1 Treatment Question

    Hi all,

    This is my first post as I felt this may be the best way to get some informed advice about treatment.

    In August 2017 I had a abdominal ultrasound (Dr suspected gall stones) to our surprise the scan was clear of stones but showed a lesion on my Spleen about 20mm diameter. A subsequent CT scan confirmed the result.

    I was sent to a Oncologist who had me take a PET/CT scan. This showed the lesion to be active (SUV 10.1) but no other areas of activity in the body. So he decided that the best option was for me to have a splenectomy at which time the tumour could be accurately analysed.

    The spleen was 201 gms 123x87x43 mm. The external surface was normal. Sectioning showed a well circumscribed , cream, fleshy tumour measuring 20x18x15mm confined within the splenic parenchyma. It is 10mm form the splenic hilum and 5mm from the closest capsular surface. It appears to show central necrosis. The remainder of the spleen is normal.

    The conclusion of the analysis was that the tumour is a DLBCL, Germinal Center Type.

    Sent to haematologist who after evaluation and Marrow biopsy (which was negative) said I was Stage 1 and decided the best treatment was either 3x R-CHOP 21 + RT or 6X R-CHOP21.

    We settled on 3x R-CHOP plus RT.

    I completed the 3rd round of R-CHOP on the 21st January 2018. As expected a subsequent PET Scan is negative for any activity.

    Now to the question.

    I attended an appointment with Radiographer last Friday and he said that this disorder is very rare and he is uncertain at this stage how to proceed. We agreed that we would both do some research to locate journal papers etc that may give some guidance on:

    Quote from an email he sent me.

    "What would be really helpful is if the articles about splenic lymphoma, such as the Bairey article, would tell us where the recurrences occurred for patients who had very early disease to start with and then surgery with or without chemotherapy and radiotherapy. Have you seen anything like that?"

    Have you any experience with IFRT of this type of cancer or can you direct me to papers that may help or offer any advice at all that you think may be useful?

    I must say I am a little nervous at this stage and would be very grateful for any input from the Forum.

    Paul

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of this. The radiologist is correct in being hesitant, as the radiation must be directed at known areas of hyper-metabolic, i.e. malignant activity, or else it is only destroying healthy tissue and raising the specter of a secondary cancer from the radiation itself. Its use is normally confined to areas confirmed as malignant via tissue biopsy.

    Since there are no other known areas of activity, and you have had the "gold standard" of DLBCL treatment, I would imagine that a re-scan is due in a few months. Since lymphoma occurs at the level of a single cell, there is no scan which would reveal any rogue cells which are circulating. The threshold of detection via scanning is something on the order of one million cells.

    Certainly not a physician here, but I would wait for the scan and proceed based on the scan results.
    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
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    1,034
    Hi, I totally agree with Po, as the is no disease to target why cause more damage to the body, I had dlbc in my abdomen and small intestine and I chose not to have the standard radiotherapy after 8 rounds of rchop, so had 2 PET scan 3 months apart to confirm no active disease, it worked for, as that was 8 years ago.
    A compromise might have been 4 rounds of rchop and then a pet scan and that could have been it. Good you have a sensible radiologist, sometimes doctors follow protocols without thinking.

    John
    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.

  4. #4
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    Quote Originally Posted by johnr View Post
    Hi, I totally agree with Po, as the is no disease to target why cause more damage to the body, I had dlbc in my abdomen and small intestine and I chose not to have the standard radiotherapy after 8 rounds of rchop, so had 2 PET scan 3 months apart to confirm no active disease, it worked for, as that was 8 years ago.
    A compromise might have been 4 rounds of rchop and then a pet scan and that could have been it. Good you have a sensible radiologist, sometimes doctors follow protocols without thinking.

    John
    Thanks to both Po and Johnr for your responses. Having such a rare form of the disease makes research difficult to say the least. Certainly there are many articles that demonstrate the effectiveness of RT post chemo for DLBCL in improving OS rates but nothing that helps with my situation.
    Just now thinking about a modified short treatment to the area and splenic helium nodes just in case the cancer has spread a few cells that direction? Or will the R-CHOP have mopped that up?

  5. #5
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
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    9,127
    Liquid medicine is generally the best weapon against liquid cancers. If even one lymphoma cell has fled the area - and that is precisely what they do, then it escapes the rads and will crop up elsewhere. It cannot hide from R-CHOP. Rads need a target and if it is dispersed, will they irradiate your entire body? I think not. Just my take on this.
    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.

  6. #6
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    Join Date
    Mar 2010
    Posts
    1,034
    The original option is almost the same as offered to stage 1 or 2 Hodgkin Lymphoma patients, so given it seems like chemo for you is now concluded and radiotherapy is not really an option, then plan C could be watch and wait for 3 months and have a follow up scan to confirm no evidence of disease. I can only reinforce what Po has said the chemo has gone everywhere in your body so the is every chance it will have got any rogue cells, but as we all know you only find out that answer some time after treatment.
    As the is no target for the radiotherapy I would err caution on going ahead with it, but that is your choice.
    Sometimes you have to roll the dice and see what they throw up,

    John
    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.

  7. #7
    Newbie New User
    Join Date
    Feb 2018
    Posts
    6
    Thanks again guys for your thoughts and knowledge.

    From what you are saying am I correct in thinking that cells can spread even as the tumour starts to grow? Or does it need some mass before starting to propagate.
    In my case is it likely to spread to the surrounding area first (as in Stage 1 spleen only, Stage 2 spleen plus nodes and so on) It is very worrying if the thing just starts spewing damaged cells around from the get go.
    In which case I wish that I had had a 4th round of R-CHOP as suggested by Johnr.
    Do you guys know if it is possible to have a 4th round 5 or 7 weeks after completion off the initial 3 cycles? Or do the cells become resistant quickly (I have seen terms like refractory etc ) to the chemicals and so wouldn't be worth while.

  8. #8
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,127
    Lymphoma is a cancer of individual lymphocytes. Sometimes, they accumulate into masses/tumors, but that is not the start - it is more or less the end result. Those malignant B-cells, once the single originating cell begins dividing uncontrollably, are circulating throughout your body. Where they end up making their home has neither rhyme nor reason to it. My hematologist does not believe that there is ever stage 1 lymphoma, due to its naturally and constantly flowing nature in both blood and lymph.

    Resistance is not demonstrated until it becomes refractory to treatment or a relapse demonstrates it. I too would go with the extra cycles, as the lymphoma cannot be detected by scanning beneath about one million cells - each of which is cloning itself rapidly. You don't want to wound the lymphoma, you want to kill it. This applies to aggressive lymphomas. Indolent lymphomas require a different strategy, as they are extremely difficult to kill off.
    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.

  9. #9
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,034
    Yes you could still have more treatment, I had around a 5 week gap at the end as I got shingles 6 days before the final treatment, I also had 2 or 3 treatments delayed due to low neutrophil counts. Also try not to get to worried about it spreading, success rates for treating dlbc have really improved, so why should you be the unlucky one.
    If more rchop is your choice make the call and set it up.

    John
    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
    Regular User
    Join Date
    Nov 2017
    Posts
    23
    Hi guys sorry for hi-jacking the thread but was due to my wife case i also curious about RT after chemo.

    So also for state 1AE ( breast ) the current plan is 6 RCHOP + 3 MT + RT, that seems a different plan the the ones offered to Benz.
    Is it due to the location of the mass ? is different protocols per country ?

    Also if someone if fit enough ( assuming you are Benz ) why not give always the 6 x RCHOP? From what i have read in case it relapses RCHOP wont be used again so might as well give it all now.
    Or am I missing something ?

    Back to RT still not sure if its worst not doing and regretting a few months or doing and regretting 10 years down the line ( not sure what are the stats for cancer due to RT ) ?

    Still trying to filter the goods from all the information online but for my main concern at the moment with RT is that it will prolong the treatment even more.

    All the best Benz and good luck.
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done....waiting for the 3x MTx

 

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