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Thread: Well it is back and here we go again

  1. #191
    Senior User
    Join Date
    Sep 2011
    Location
    Massachusetts
    Posts
    281
    Thank you, sorry it took so long to respond. The vin has been reduced already and I my neuro is reducing. I will ask though as I have had 5 treatments and the 6th coming up on aug 2nd. I am hoping I will get through the last treatment and see how the petscan looks. If all is good, it will be on to 3 month rituxan therapy for however long it works. I appreciate the info and will look into it

    Best
    Robert
    64 US Massachusetts Male
    dx 23 days ago B Cell phenotype, with features consistent with follicular lymphoma grade 1 stage iV
    Enlarged notes in groin, abdomen, neck
    Treatment Bendamustine 2 day treatment every month for 6 months treatment started 9/22/2011
    Was supposed to include Rit but i got a deadly allergic reaction to it.
    Remission since March 2012
    Relapse June 2015
    Port Installed July 13, 2015
    Appointment with Dana Farber on July 17 to set up chemo schedule
    Going to try Rituxan again with a different infusion protocol
    Bendamustine as well for 6 months

  2. #192
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,841
    Robert, very good to hear that things are manageable. Vincristine still lives with me, but we have come to terms of peace. As to life in general, compare your thoughts and outlook today with that when you first posted. I see much more confidence. As to the future, it will certainly be brighter than the present, as the new therapies emerge and we live our lives with an increased appreciation for the gift that it is.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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 GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 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.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow aspiration/biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and a myeloid malignancy lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

  3. #193
    Senior User
    Join Date
    Sep 2011
    Location
    Massachusetts
    Posts
    281
    Thanks po, Yes life is a gift and I cant wait to appreciate every moment.

    Best to all
    Robert
    64 US Massachusetts Male
    dx 23 days ago B Cell phenotype, with features consistent with follicular lymphoma grade 1 stage iV
    Enlarged notes in groin, abdomen, neck
    Treatment Bendamustine 2 day treatment every month for 6 months treatment started 9/22/2011
    Was supposed to include Rit but i got a deadly allergic reaction to it.
    Remission since March 2012
    Relapse June 2015
    Port Installed July 13, 2015
    Appointment with Dana Farber on July 17 to set up chemo schedule
    Going to try Rituxan again with a different infusion protocol
    Bendamustine as well for 6 months

  4. #194
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Location
    New York
    Posts
    6,039
    I am hoping I will get through the last treatment and see how the petscan looks. If all is good, it will be on to 3 month rituxan therapy for however long it works.
    Well, of course you will get through #6, Robert. It is my hope that it will be the easiest infusion you have had.

    I am happy to hear that you are tolerating things reasonably well, may that continue right on through the maintenance phase, my friend. Then, may your remission last all the days of your life. Be well.

    Good health,

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

    Age 66
    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.

  5. #195
    Senior User
    Join Date
    Sep 2011
    Location
    Massachusetts
    Posts
    281
    Thank you so much Kermica!

    Be well
    Robert
    64 US Massachusetts Male
    dx 23 days ago B Cell phenotype, with features consistent with follicular lymphoma grade 1 stage iV
    Enlarged notes in groin, abdomen, neck
    Treatment Bendamustine 2 day treatment every month for 6 months treatment started 9/22/2011
    Was supposed to include Rit but i got a deadly allergic reaction to it.
    Remission since March 2012
    Relapse June 2015
    Port Installed July 13, 2015
    Appointment with Dana Farber on July 17 to set up chemo schedule
    Going to try Rituxan again with a different infusion protocol
    Bendamustine as well for 6 months

  6. #196
    Senior User
    Join Date
    Sep 2011
    Location
    Massachusetts
    Posts
    281
    Hi Folks
    I finished my last round of Rchop a few days ago and I am insisting on a pet vs ct. Am I making the correct decision. I really am hoping that switching to Rchop cleaned up this mess and I am assuming a Pet will give more information.

    Best
    Robert
    64 US Massachusetts Male
    dx 23 days ago B Cell phenotype, with features consistent with follicular lymphoma grade 1 stage iV
    Enlarged notes in groin, abdomen, neck
    Treatment Bendamustine 2 day treatment every month for 6 months treatment started 9/22/2011
    Was supposed to include Rit but i got a deadly allergic reaction to it.
    Remission since March 2012
    Relapse June 2015
    Port Installed July 13, 2015
    Appointment with Dana Farber on July 17 to set up chemo schedule
    Going to try Rituxan again with a different infusion protocol
    Bendamustine as well for 6 months

  7. #197
    Top User
    Join Date
    Mar 2010
    Location
    durham UK
    Posts
    820
    Hi Robert, well you have got there in the end so heres hoping you get the result you want and it has done its job, cannot really advise on pet vs ct, other than I got a false positive ct at the end of treatment and I went on to have 2 pet scans to confirm remission, so for me it would be the pet scan like you, but others may have a different view for valid reasons.

    well done
    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.

 

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