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Thread: NHL DLBCL tumors shrink but remain after finishing chemo.

  1. #1
    Newbie New User
    Join Date
    Apr 2017

    NHL DLBCL tumors shrink but remain after finishing chemo.

    I just had PET scan after finishing final 6th round of RCHOP chemo for stage 3 NHL DLBCL tumors. Previous scan was done after I finished 3 rounds of RCHOP. Since then, smaller tumors have disappeared; however, two largest tumors have reduced in size (e. g., from 5.3 cm to 4.2 cm) but still remain.

    Has anyone had tumors shrink but remain after finishing chemo? what were your next steps?

    Sarasota oncologist and Moffett 2nd opinion have mentioned radiation, but that was before this last scan. Am fearful of fecal incontinence/chronic diarrhea from radiation, since I experience this already once or twice a week, & it's intolerable.

    I have app't with oncol.next Tuesday to discuss results and follow-up. Came here to learn about possible options beforehand. Many thx

  2. #2
    Moderator Top User
    Join Date
    Mar 2010
    Hi I was in a similar position 9 years ago, my DLBC was in my small intestine and main mass was in my abdomen, after 8 rounds of treatment I had a mass remaining which was a similar size to yours and I had always been told this would be the case as I had bulky disease and the mass that remains is scar tissue. I was told that I would need radiotherapy just to be sure the is no disease left, as they could not guarantee it was completely gone. Fortunately prior to the end of treatment we had talked about false positive scans and in my head that's what I thought and needed to be convinced that treatment was needed. So we decided to do watch and wait, I had a pet scan as they were not the norm then in the UK and 3 months later had a second pet scan and all was as expected.
    Like you I had concerns about becoming incontinent due to where the mass was and was always unsure if radiotherapy was safe or even possible, again 10 years ago machines were not as good at targeting areas the way the new ones are now.

    So from my experience the is a discussion to be had to check its not a false positive, ask what the Deauville score was and consider would 2 more rounds of rchop be an option or might watch and wait be an option or are they 100% sure that disease is there in the scar tissue.

    At the end of the day you will need to make an informed decision so the more information you have and the more you understand things the easier it will be to get to a decision you are comfortable with.

    Let us know how you get on and any other questions just ask


    PS another option as part of watch and wait could be to have rituximab on its own as a safety net, the have been a couple trials or papers where it has been given post rchop for 2 years similar to what FNHL patients get.
    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.

  3. #3
    Newbie New User
    Join Date
    Apr 2017
    Hi John, thanks for the reply. Good to hear from others with similar conditions and concerns. My onc mentioned possibility of scar tissue after last pet scan, but also spoke of radiation as way of treating my cancer aggressively. Since then, I wondered why subject me to agressive treatment if this was scar tissue?
    I'm 76. Chemo was hard journey for me, but luckily I never ended in hospital . I know that there are many people who have gone through much more treatment than I, but at this point, I dont want treatment that will hurt my body
    more. I gave it a good try with 6 rounds of chemo. Im already taking a pill for rest of my life for breast cancer, and endure joint pain and leg weakness. Will look up side effects of rituximab to see if that's doable.

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Here is a link to a hot off the press fact sheet regarding Minimum Residual Disease (MRD) that some patients experience post-treatment. Due to your co-morbidities, I would certainly consider seeking a second opinion on your next move. Perhaps a needle biosy to confirm that it is actual disease.
    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.


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