A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Results 1 to 3 of 3

Thread: Proton Beam Therapy for Pediatric Medulloblastoma

  1. #1

    Proton Beam Therapy for Pediatric Medulloblastoma

    Hello

    I am hoping to find other parents who have been or or currently are in the extremely difficult position of their child having Medulloblastoma brain tumour to help get more information about using Proton Beam Therapy for the radiation treatment.

    There has been a paper released by Dr T Yock in the USA this year (2016) showing that Proton is a better choice than the traditional Photon treatment as it significantly reduces the late effects of treatment - which can include second malignancy, gastric issues, heart issues and cognitive and learning issues, and that this is important for younger children. I think they said under 8 was most benefit.

    I am based in Australia and there is no Proton here. I am hoping there are other parents who have either been through this and had to decide whether to go for Proton or if any are currently working this out now.

    Also if any Australians are on the forum and whether they have looked into this. There is an overseas funding program by the government here which I would hope would fund this type of treatment.

    Can you help?

    Regards
    CP

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,392
    Very sorry to welcome you under these sad circumstances. I do know that all effort directed toward reducing excess or extraneous radiation to younger patients is worth pursuing. best. There may be others who have faced the same situation and hopefully they will post a response.
    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
    Newbie New User
    Join Date
    May 2016
    Posts
    2
    Hi.

    My son will most likely go for the proton beam - He has Rhabdomyosarcoma behind its right ear.
    Proton is supposed to be more 'exact' - However, since its more exact its also more easy to miss out any fragments of the tumour.
    They have been testing it around here for approx 1,5 years with positive results.

    In sweden however, and not sure if they take in people from abroad.
    Here is the link to the hospital:

    http://www.karolinska.se/en

    regards
    Andreas

 

Similar Threads

  1. Pencil Proton Beam Therapy vs. Rapid Arc Therapy or VMAT
    By rjhein007 in forum Prostate Cancer Forum
    Replies: 10
    Last Post: 02-11-2015, 03:33 AM
  2. Proton Beam Focal Radiation Therapy
    By davidgb in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 0
    Last Post: 07-24-2011, 07:03 PM
  3. Proton Beam Therapy
    By Fairwind in forum Prostate Cancer Forum
    Replies: 12
    Last Post: 07-07-2010, 08:30 PM
  4. Proton Beam Therapy Vs. Da Vinci Radical Prostatectomy
    By jokirk6 in forum Prostate Cancer Forum
    Replies: 4
    Last Post: 03-16-2010, 04:09 PM
  5. Proton Beam Therapy News
    By Beth56 in forum Prostate Cancer Forum
    Replies: 1
    Last Post: 09-04-2008, 06:04 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •