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Thread: Low grade B-cell lymphoma

  1. #1
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    Low grade B-cell lymphoma

    Well I'm new here. retired in Feb 2018. Noticed a lump in my cheek and strange colored skin where my glasses fit my ear to left eye. Went to 3 Doctors who sent me to Siteman Cancer . They diagnosed me a few weeks ago. Will start BR on the 18th , they are putting in a Power port Friday. So my journey begins.

  2. #2
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    Hi and welcome to the lymphoma group am I right to assume its FNHL you were diagnosed with?

    The are a few who are veterans of B & R treatment so any questions about it just ask, having a port will make it easier and will protect your veins, make sure you drink plenty to help flush out the toxins and dead cells, after that see how it goes as not everyone suffers with side effects and those that do find it varies from person to person.

    Keep a daily diary and that way you can keep your consultant updated with how you have been during each cycle and that way if they need to tweek your meds they can. Exercise - walking helps to especially if fatigue kicks in or the dreaded constipation hits you.

    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.

  3. #3
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    John, I think its called Low grade B-cell Lymphoma Non-Hodgkins. Didn't find anything below my shoulders and bone biopsy was 5 -10 percent b-cell involvement.

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Sorry to have to welcome you here. As you might expect, there is good and bad news - potentially. The good is that low-grade B-Cell Lymphoma is considered to be a chronic, manageable illness. Like bad in-laws, you learn to tolerate each other. The bad is that there is a small chance that it could transform into an aggressive variety. But even then you have plenty of options.
    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.

  5. #5
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    Good luck! Hoping the treatments go well. A port does make things easier.

  6. #6
    Administrator Top User Kermica's Avatar
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    Hi there, flody1 and welcome though I am sorry you have reason to be here, of course. I have had a low grade, indolent lymphoma for the past ten years. I have had various treatments along the way, including B+R. I found that treatment quite tolerable though the fatigue factor was (and is) a pretty big change in my daily life. I listen to my body and rest when it says I need rest. Other than that, the treatment was fine and resulted in a remission that lasted several years.

    The port is a good idea, I got mine after my veins started failing due to the caustic nature of the bendamustine. No issues with the port, at all. This is a chronic disease and one which, for most, can be well managed with relatively small impacts. There are a few (like me) in which the disease becomes resistive and recurrant but that is pretty unusual compared to the majority. You should expect to go through your treatment without big impacts and, then, may you have a remission that lasts for years. That is the goal. Good luck to you in every aspect of yur journey.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  7. #7
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    Quote Originally Posted by Kermica View Post
    Hi there, flody1 and welcome though I am sorry you have reason to be here, of course. I have had a low grade, indolent lymphoma for the past ten years. I have had various treatments along the way, including B+R. I found that treatment quite tolerable though the fatigue factor was (and is) a pretty big change in my daily life. I listen to my body and rest when it says I need rest. Other than that, the treatment was fine and resulted in a remission that lasted several years.

    The port is a good idea, I got mine after my veins started failing due to the caustic nature of the bendamustine. No issues with the port, at all. This is a chronic disease and one which, for most, can be well managed with relatively small impacts. There are a few (like me) in which the disease becomes resistive and recurrant but that is pretty unusual compared to the majority. You should expect to go through your treatment without big impacts and, then, may you have a remission that lasts for years. That is the goal. Good luck to you in every aspect of yur journey.

    Good health,

    kermica
    Thanks, I just got my Power Port put in this morning. Got a little rash around it on neck but I shaved before I went in, the cleaning of my neck by them burned so quess its razor burn. How long does it take to get used to the port ?? Best of luck to you and thanks again for your info.

  8. #8
    Senior User
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    Mar 2017
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    Hello Flody,

    The port will likely soon become a part of you. You may be sore for a few days to a couple of weeks, but once the healing process is done, you should be able to forget all about that foreign body under your skin. It will preserve your finer veins from damage due to the chemotherapy. You may want to reserve it for access only for that purpose though, in order to limit the chances of starting an infection in there.

    Best of luck to you.

    PBL

  9. #9
    I found it was about 3 weeks until I almost forgot I had the port. I think it was one of the best decisions I made to have it because I ended up having chemo for 4 1/2 years.( Actually my brain was so muddled that really my husband and doc decided that it would be best) Anyway, hang in there it will get better.
    Female ,age 70, Diagnosed Jan 2010
    Primary CNS DLBCNHL
    Treatment every 6 weeks with High dose MTX and Rituxan for 9 months.
    Tumors shrunk and one was gone in 4 months and the larger one left some brain damage but has not become active as shown on MRI since Aug 2010.
    Since 2012 monthly Rituxan
    High Dose MTX and MRI every 4 months.
    June 6, 2014 NED
    No more chemo 6/2014

  10. #10
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    Thanks, well been in 2 days now and its ok. I had a blown vein and another rough one prepping for the port which is on my left side. I have swollen spot on the right side( surgeon said the catheder on the port was a little longer with left placement ), right where it would have gone.

 

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