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Thread: Hodgkins Lymphoma Reccurence

  1. #1
    Newbie New User
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    Jul 2017
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    Hodgkins Lymphoma Reccurence

    Hi all,

    A little over a year ago my wife, who was 27 at the time, was diagnosed with Hodgkins Lymphoma. She was staged at IIA bulky. She began ABVD right away, and was treated with 6 cycles. After 4 cycles she had a PET that showed that she was very responsive to the treatment, and the final two cycles resulted in a clean PET. She was then treated with Radiation therapy for another month to make sure everything was gone. One final scan confirmed remission, this was in late Jan.

    Back in June, she went in for her checkup and had another PET done. This time the scan showed one enlarged node. On Friday, her doctor met with us and confirmed it was Hodgkins Lymphoma. The doctor is still developing a specific course of treatment, but what we know is that she'll have to have some chemo done to clear up anything that is currently there, and then she will be treated with high-dose chemo followed by an Auto stem-cell transplant.

    I was wondering if anyone knew where I could find some numbers regarding the success rate of this treatment? Specifically what percentage of patients with recurrent HL are successfully cured. I haven't been able to find any solid numbers online, and I really want to know what we're facing.

    Please let me know if something wasn't clear or if more detail is needed.

    Thank You.

  2. #2
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,316
    Hi, whilst I understand the need to know the stats, my advice is ignore them, stats are just that, a bunch of numbers that are crunched in a particular way, your wife and her disease are unique. Also any stats you find are out of date and I am an example of that. I had stage dlbc in 2009 stage 4 and at that time 49% made 2 years and 28% made 5 years, roll on 5 years and those figures had changed to 50% making 5 yrs.
    So I am now better than the stats and I guess when I become a 10yr survivor the stats will be even better.

    What I would suggest is important is they biopsy the node, check it is HL and do some genetic/molecular profiling so they get the right drugs to beat it again as the are a few different regimes they can use and some are better at targeting certain markers like brentuximab and cd30 positive, but if its not cd30 rich then its less effective as a second line treatment.

    Focus on the treatment and beating this again.

    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
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    10,304
    Since it relapsed so quickly, I raise a single point: Oddly enough, Hodgkin's Lymphoma (a B-Cell Lymphoma) can be confused with Anaplastic Large Cell Lymphoma (a T-Cell Lymphoma). Treatment is quite different for both and I am familiar with cases of mistaken identity going both ways. In the case of a Hodgkin's relapse, I would especially seek a second (or even third) opinion on the pathology of the biopsy sample, preferably at a major cancer institute or university hospital.

    Regarding transplants, there are three main risks in allogeneic transplantation: First, that the transplanted cells will not engraft in the marrow. Secondly, the development of acute Graft-Versus-Host-Disease and third, common infection. An autologous transplant is far less risky than an allogeneic transplant inasmuch as cell engraftment is virtually guaranteed and there is no graft-versus-host-disease. Those are huge advantages in cases where autologous transplantation is considered.

    As johnr said, none of this matters until and unless the disease can be placed back in remission.
    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.

  4. #4
    Senior User
    Join Date
    Sep 2016
    Posts
    310
    Hi Greven,

    Very sorry to hear about your wife's relapse! My son also has relapsed Hodgkin's, but as you can see from my signature, he was originally misdiagnosed, resulting in the wrong initial treatment. You say her doctor "confirmed" it was Hodgkin's after the relapse, but you don't say if they took another biopsy? It's standard to do so, and I would be asking. Also, as mentioned here, second opinions at an National Cancer Institute (NCI) facility are a really good idea, particularly in relapse. https://www.cancer.gov/research/nci-role/cancer-centers.

    What exactly are they recommending for her now? Brentuximab Vedotin is helping a lot of people with relapsed Hodgkin's. There's other novel drug therapies out now also. And here is a combination that's seen some really good results: http://www.ascopost.com/issues/janua...gkin-lymphoma/

    If she could get to remission with Brentuximab prior to stem cell, for example, that generally has much less toxicity than ICE or other chemos. The five-year study also showed a small group who have received durable remissions (5+ years) on this drug. It only gave my son a partial remission, but it's done well for others.

    After relapse auto stem cell is still the gold standard in hopes of a durable remission/cure until these other drugs have more time and more trials to see what they can do, with the goal of some day eliminating the need for stem cell transplants. But we aren't there yet.

    Please keep us posted! And let me know if I can help with information or research. Wishing the very best for your wife!

    -VMarie
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

 

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