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Thread: Composite Lymphoma: Morbus Hodgkin / T-Cell Lymphoma (PTCL NOS?)

  1. #161
    Experienced User
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    Dear Po,

    Glad to hear, I think you've already beat the game! Wishing you healthy years for the rest of your life!

    Kimv&Deb: Thank you both for your kindness. Yes my brother is doing well for now -gladly- he has finally started to go to the gym to build up some"basic" muscles which suffered from last years chemo and transplant. He just needs to gain some physical strength back again. day by day, we slowly are getting used back to the "normal" life so that it scares me that we are just living in a dream and will wake up one day. anyway, it is important to see life as a gift and to not taking it for granted.
    Kim, please let us know about the Scan results in March. Me too, I am absolutely looking forward to another NED result!! Cant talk about the time when the next CT scan is due for my bro, I think it will be symptom-based from now on. Still hoping for at least another one for this year! Otherwise, It feels weird..
    Deb: Same for you, please keep us informed about the results. Unbelievable that your brother has also "anniversary" soon Happy that his GvHd is not a big deal. Hopefully, it will get even better.

    I think next time Ill check in, it will be your (hopefully good) news first

    hug and best,

    Aleda
    Story of my brother:
    09/2015: Diagnosed at the age of 45 for Composite Lymphoma: Morbus Hodgkin / T-Cell Lymphoma, Stage III (Spleen involvement)
    Treatment plan: 4x BEACOPPesk. followed by ASCT in first line therapy
    10/2015, Treatment Start: 4x BEACOPPesk. (with 2x dose reduction due to leukopenia)
    12/2015: CT scan shows clear shrinking of tumors
    01/2016: 1x DHAP (PBSC harvest)
    02-03/2016: Another biopsy showed still too many tumor activity, change of regimen: 3x IGEV
    04-05/2016: Highdose Chemo BEAM + autolog. transplant.
    07/2016: PET CT Scan = NED
    Doctors believed the allo transplant should follow asap to avoid any relapse as it is very likely to occur. 2nd opinions disagreed. My brother finally declined further treatment.
    11/2016: CT-Scan = NED (1st post-treatment CT)
    01/2017: CT-Scan = NED (2nd CT done earlier as my brother suffered from pneumonia)

  2. #162
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    Hey Guys,

    after reading great news from Deb, I can also inform you that my brother had his first year auto transplant anniversary yesterday! Blood tests are fine so far, he will have a sonography (throat/neck) on Friday after that I can tell you about good or bad news for sure. he was sick last weeks and felt something in his throat, the oncologist said its just the swollen salivary gland but we want to be sure!
    He is trying to avoid a CT scan this time and we hope he wont need it too soon.

    Take care folks!

    Best,
    Aleda
    Story of my brother:
    09/2015: Diagnosed at the age of 45 for Composite Lymphoma: Morbus Hodgkin / T-Cell Lymphoma, Stage III (Spleen involvement)
    Treatment plan: 4x BEACOPPesk. followed by ASCT in first line therapy
    10/2015, Treatment Start: 4x BEACOPPesk. (with 2x dose reduction due to leukopenia)
    12/2015: CT scan shows clear shrinking of tumors
    01/2016: 1x DHAP (PBSC harvest)
    02-03/2016: Another biopsy showed still too many tumor activity, change of regimen: 3x IGEV
    04-05/2016: Highdose Chemo BEAM + autolog. transplant.
    07/2016: PET CT Scan = NED
    Doctors believed the allo transplant should follow asap to avoid any relapse as it is very likely to occur. 2nd opinions disagreed. My brother finally declined further treatment.
    11/2016: CT-Scan = NED (1st post-treatment CT)
    01/2017: CT-Scan = NED (2nd CT done earlier as my brother suffered from pneumonia)

  3. #163
    Super Moderator Top User po18guy's Avatar
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    Pacific NW, USA
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    A great report! Thank you checking back in!Very good at he is doing so well, as it did not always look that way.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. 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) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  4. #164
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    Virginia
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    Aleda, I am so glad to get an update from you. Please let us know when you get all of the results. I am praying for your brother and his family.

  5. #165
    Senior User Kimv's Avatar
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    Chico, ca
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    Hi Aleda,
    Let's just hope the swollen glands are a "nothing". It's good to hear that everyone else is doing so well! Thank god for all of the great researchers and medical teams who are making our live's better. ❤️
    I celebrate my one year auto transplant birthday next week. I feel great and babe gone snorkeling almost every day here on the Big Island. I swam with Spinner Dolphins yesterday! They were right in front of me....it was so amazing!! Anyway, life is good and I wish the same for all of you and your families. Lots of love and positive energy.❤️Kim
    Last edited by Kimv; 05-11-2017 at 06:31 PM. Reason: spelling
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

  6. #166
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    Berlin, Germany
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    Dear folks,

    thanks for your posts, always good to see that there are people caring and your support always helped me a lot!

    The sono was fine, nothing to worry about, no swallen lymph nodes!

    @KIM great news with Dolphins lol you made my day!

    I also pray for all of you, lets not take our life and you good people for granted! So thankful you are there.
    Have a great week, lets stay in touch!

    Best,
    Aleda
    Story of my brother:
    09/2015: Diagnosed at the age of 45 for Composite Lymphoma: Morbus Hodgkin / T-Cell Lymphoma, Stage III (Spleen involvement)
    Treatment plan: 4x BEACOPPesk. followed by ASCT in first line therapy
    10/2015, Treatment Start: 4x BEACOPPesk. (with 2x dose reduction due to leukopenia)
    12/2015: CT scan shows clear shrinking of tumors
    01/2016: 1x DHAP (PBSC harvest)
    02-03/2016: Another biopsy showed still too many tumor activity, change of regimen: 3x IGEV
    04-05/2016: Highdose Chemo BEAM + autolog. transplant.
    07/2016: PET CT Scan = NED
    Doctors believed the allo transplant should follow asap to avoid any relapse as it is very likely to occur. 2nd opinions disagreed. My brother finally declined further treatment.
    11/2016: CT-Scan = NED (1st post-treatment CT)
    01/2017: CT-Scan = NED (2nd CT done earlier as my brother suffered from pneumonia)

  7. #167
    Top User David52's Avatar
    Join Date
    Jan 2013
    Location
    Central Wyoming
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    823
    Kim,

    Congratulations on your anniversary! One year old, re-birthday wise! Am glad you are feeling good, swimming with the dolphins, hanging on the big Island! Good for you! Life really is good, when we take the time to live it, isn't it?! Much love,

    David
    65 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
    Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED. Scanziety still sucks.
    5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
    Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    1 yr. post transplant blood work fine; clean scan. No GvHD so far.

  8. #168
    Senior User
    Join Date
    Sep 2016
    Posts
    201
    Aleda, Happy to hear the good news about your brother!!

    Kim, Congratulations on your one-year anniversary! And what a great way to spend it - swimming with dolphins!
    Researcher, advocate, and caregiver to my son, age 24
    July 2016, Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin
    Sept 2016, Third round of E-CHOP complete;; PET scan NED
    Nov 2016, Sixth and final round of E-CHOP completed
    Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
    Continued to live alone and work two jobs through chemo!
    Dec 2016, PET scan NED
    March 2017, Experiencing symptoms: cough and stomach issues. Found two small lumps in neck
    March 2017, CT scan shows relapse. Confirmed by PET
    April 2017, CD-30 confirmed with biopsy; Begin Brentuximab for at least three cycles
    May 2017, Biopsy came back with new diagnosis: Classical Hodgkin's! Likely misdiagnosed initially (by three different pathologists).

  9. #169
    Senior User Kimv's Avatar
    Join Date
    Dec 2015
    Location
    Chico, ca
    Posts
    389
    Hi everyone,
    Thank you for your good thoughts. Aleda, I'm so happy to hear that the sonogram didn't show up anything. What a relief!
    Yes David.....living life, that's what its all about. Po, I hope your ribs are healing up nicely.
    Love and much aloha to you all. kim
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

 

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