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Thread: Please Share Your Diffuse Large B-Cell Lymphoma Story

  1. #1

    Please Share Your Diffuse Large B-Cell Lymphoma Story

    Hello,

    I was just wondering if anyone would like to share their journey with me and others about having diffuse large b-cell lymphoma. How their treatment went and if they had a relapse or not. If they had a transplant, how long has it been since that happened and how they are doing?

    If you read my signature down below, you will know my summary. I'd like to hear from others. It helps to share and support one another.

    Thank You and Have a Great Weekend!

    Teacher Deb
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Welcome, although I hate to have to welcome you under these circumstances. We have a few T-Cell patients, such as myself, but DLBCL is generally much easier to eradicate than most all T-Cell lymphomas. Although the experiences with lymphoma symptoms are generally different, transplant tends to follow certain patterns, the differences being in the type of transplant. I do not see your signature - perhaps you could give brief summary?
    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
    Hi Po,

    My signature is under my post, like your post? Hmmm?

    Anyway, hi again!

    I am the same person, DJS, from the other forum. Thanks for setting up this forum and responding to my posts!

    ---Teacher Deb/DJS
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    D'oh! A Homer moment. I had signatures turned off. Fixed now.

  5. #5
    No problem!

    And you set up the other forum, not this one. Ugg! Glad you did...

    You mentioned there were more b cell lymphomas than t cell. Hmmm...may be "chemo brain" happening here, but had a thought about the new CAR T-Cell therapy. I think I was told that it was no longer in trials, but being used for leukemia pretty successfully. Why not t-cell lymphoma, too?

    I was going to ask how you turned your signature off, but I see the little box at the bottom left.

    Good Night!
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,334
    I requested this forum since transplant is not technically a cancer issue, and raises so many concerns that are unique to transplant. We have members here who have a wide variety of experiences with transplant.

    As to lymphomas, 90-95% of lymphomas are B-Cell. More than half of B-Cell Lymphomas are indolent - slow growing. Nearly all T-Cell Lymphomas are aggressive. Treatment for B-Cell Lymphomas is far better understood and defined. 10 years ago, there was no standard therapy for T-Cell Lymphomas. 10 years later, there is still is no defined therapy except for clinical trial - if one happens to be available. We T-Cellers are almost an orphaned group.

  7. #7
    Hi Po,

    I didn't reply yet as I started reading your story. Looks like that may take me some time.

    I'm sorry that T Cell Lymphomas don't fare as well as B Cell Lymphoma. The more I read about lymphoma, the more I see that they need to find better treatment for all of them. Treatment for DLBCL hasn't changed for many, many years.

    I thought CAR T-Cell therapy would work for t-cell lymphomas?

    I'm glad you know about different cancers and their treatments and are able to be on here supporting others. Keep up the good work! Also glad to see someone still going strong after 10 years of fighting cancer! Thank God! May He give you many more years on this earth!

    Have a great week and thanks again,

    Teacher Deb
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!

  8. #8
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,334
    Deb, re-reading your last post, the problem with T-Cell therapy in T-Cell lymphomas is the T cells themselves. With some of them being malignant, it is currently impossible to segregate the malignant cells from the normal cells for the genetic engineering that CAR-T amounts to. Thus, some malignant T-cells with mutations could conceivably be inadvertently engineered into a super cancer.

    However, MD Anderson is performing research into CAR-N/K (Natural Killer) cells, a sub-type of T-Cells. Although very early, they have not observed the "cytokine storm" that CAR-T can produce - a good thing indeed. As to that cytokine storm, Angioimmunoblastic T-Cell Lymphoma produces a sort of mini-cytokine storm, in that the cytokines its tumor cells release can cause arthritis, skin rashes, pleural effusions, shortness of breath, incessant cough, and numerous other autoimmune conditions.

    As an aside, since you have had an auto transplant, be sure to watch your skin for easy bruising, symptoms of anemia, and low blood counts. Why? There is study being done into the increased risk of Acute Myeloid Leukemia as well as Myelodysplastic Syndrome (MDS, a precursor to AML) in autologous transplant patients. Nothing to be paranoid about - just cautious.

  9. #9

    Hi PoGuy

    Quote Originally Posted by po18guy View Post
    Deb, re-reading your last post, the problem with T-Cell therapy in T-Cell lymphomas is the T cells themselves. With some of them being malignant, it is currently impossible to segregate the malignant cells from the normal cells for the genetic engineering that CAR-T amounts to. Thus, some malignant T-cells with mutations could conceivably be inadvertently engineered into a super cancer.

    However, MD Anderson is performing research into CAR-N/K (Natural Killer) cells, a sub-type of T-Cells. Although very early, they have not observed the "cytokine storm" that CAR-T can produce - a good thing indeed. As to that cytokine storm, Angioimmunoblastic T-Cell Lymphoma produces a sort of mini-cytokine storm, in that the cytokines its tumor cells release can cause arthritis, skin rashes, pleural effusions, shortness of breath, incessant cough, and numerous other autoimmune conditions.

    As an aside, since you have had an auto transplant, be sure to watch your skin for easy bruising, symptoms of anemia, and low blood counts. Why? There is study being done into the increased risk of Acute Myeloid Leukemia as well as Myelodysplastic Syndrome (MDS, a precursor to AML) in autologous transplant patients. Nothing to be paranoid about - just cautious.
    Hi PoGuy,
    I sure hope they come up with a treatment that will work on T-Cell Lymphomas soon! I heard about natural killer cells. I don't quite understand all of this like you seem to, but...

    I hope you are doing ok? I will have to go read your up-dates. I've been off of here for a while & I've asked why I don't get emails telling me someone has responded to one of my posts? I also asked how to up-date my signature thing on the bottom? But no one has answered. Maybe I need to make it one post?

    I had my consult appointment at SCCA on Nov. 30th. I was hoping I may be able to meet you there on floor 6?

    I hope you had a good Christmas and will have a nice, healthier new year, too!

    ---Debbie
    Stage 1 Diffuse Large B-Cell Lymphoma Sept. 2015
    Treated with: R-Chop Oct. 27, 2015, Nov. 17, 2015 & Dec. 8, 2015 &
    15 Radiation Treatments Jan. 2016
    Pet Scan Jan. 2016 demonstrated Complete Response/Remission!
    2 months shy of two years later, a routine physical found my Lymphoma had come back; my Left Inguinal Lymph Nodes were swollen in July 2017. There were three affected this time; surgeon removed the two largest ones.
    Excisional Biopsy revealed Recurrent Large B-Cell Lymphoma on July 27, 2017
    Treated again with: R-Chop Aug. 15, 2017, Sept. 5, 2017, & Oct. 2, 2017 (had to wait a week for counts to rise)
    Pet Scan Oct. 20, 2017 demonstrated I was again in Complete Remission!
    High Dose Chemotherapy with BEAM Dec. 27, 2017-Jan. 1, 2018
    Autologous Stem Cell Transplant Jan. 2 & 3, 2018
    Pet Scan March 8, 2018
    demonstrated I was still in Complete Remission!

 

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