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Thread: My 11 yr old son had an Oligodendroglioma II

  1. #1
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    My 11 yr old son had an Oligodendroglioma II

    Hello Everyone,

    This is my first post here. I'm hoping to find some support from other parents and patients

    My 11 yr old son has had migraines for about 5 years. We took him to his pediatrician (we lived in a small town) who decided that our son was being bullied at school. Um. No. Not even close.
    After we moved back to a big city we took him to see another pediatrician for a migraine consult. A small miracle... after taking his vitals our son promptly started having a migraine right on the exam table. The doctor walked in, took one look at him, and ordered us to get to the hospital for a scan.
    After a CT scan and MRI we were finally able to speak to an awesome neurosurgeon who diagnosed my son with a brain tumor in the left temporal lobe. After a PET scan we were told it was benign and we could "wait and watch".
    Just a few weeks later my son experienced a simple partial seizure. He remained alert but was unable to understand anyone speaking to him and was unable to speak clearly.
    Skipping ahead a bit, in May 2012 he had surgery to remove the tumor. The surgery was successful and the surgeon believes that he got all of it.
    Pathology report returned a diagnosis of oligodendroglioma grade II. Now that was scary! His chromosome report recently came back that the 1p, 19q are NOT deleted. I have yet to find any information on a child with this tumor w/o the deletion.
    We just met with the oncologist who basically told us that she believes everything is fine and it won't grow back. Which doesn't quite line up with my research. She didn't understand why the chromosome test was ordered nor what it meant. That had me very concerned.
    Any oligo's out there want to explain the chromosome test to me? Any parents with kids with an oligo?

  2. #2

    My daughter also has Oligodendroglioma grade 2

    Hello Guzzo,
    My daughter was recently diagnosed with the same brain tumor as your son. She is 14 and had surgery 3 weeks ago to remove it. The doctor is also convinced he got it all. We just met with our pediatric oncologist, who discussed treatment options, including radiation with us, and explained that they are still awaiting the further pathology testing to check for the genetic stuff.
    I am wondering how your son is doing now, and curious about the road you all have been on. It is so overwhelming, as a parent and would love the support of hearing from another parent who has gone through this.
    Hugs and Best wishes.

  3. #3
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    My first reaction is, oh dear, so young...

    However it appears that the prognosis is much better for children, oligos seem to act differently than in adults - and this despite the fact that the 1p/19q gene deletions which are found in 70% of adult cases (and a good prognostic indicator) are apparently not found in childhood cases.

    http://www.ncbi.nlm.nih.gov/pubmed/2...?dopt=Abstract

    Quote: "Patients who underwent gross total resection (GTR) experienced an improved 5-year PFS of 100% compared to 28.8% (P = 0.03) in patients treated with subtotal resection (STR) or biopsy alone. (PFS=progression free survival). You can't get any better than that, as no oncologists will commit themselves beyond five years.

    As your daughter is neither a child nor an adult, it is not clear whether she will have childhood symptoms or more adult ones. As to treatment, in adults with co-deletions the norm is a chemo called Temozolomide (called Temodar in the USA, Temodal elsewhere) which by chemo standards is relatively benign , few side effects; I would be very wary of radiotherapy on one so young, unless her life really is in danger. Modern targetted RT does less damage to healthy cells, but there can still be long term effects. The advice at the moment may be to do nothing: "watch and wait" with regular MRIs to check that the beast has not come back.

    You mention a paediatric oncologist, but Is she also being seen by a specialist neuro oncologist? This is important, even if you have to travel, because brain cancers are not like other cancers, they are rare and this type in a young person, extremely rare. If you tell us where you are ( I assume from your spelling, in the US) , we may be able to advise as to the best centre nearest to you.

    For more info, there is a thread "Introduction to brain cancers" at the top of the Brain Tumors board, but it is adult focussed.

    Good luck and keep us posted, and we are here for both questions and support.
    Last edited by Lboy; 08-20-2014 at 09:30 AM.
    Wife died from a GBM, November 2012. The full story in this thread

  4. #4
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    Hi Jessalyn's Mom. I'm sorry to hear about your daughter's brain cancer. I agree with Lboy that it would be best to see a neuro-oncologist, for the best possible outcome. If you're in the US, there are several pediatric brain tumor centers. St. Jude's in Tennessee is one of the best, and at St. Jude's any costs not covered by insurance are absorbed by the hospital. (They will also house you.)

    Feel free to post in the brain tumor forum also.

  5. #5
    How is your son doing these days?

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by allysheedy View Post
    How is your son doing these days?
    I note that OP's last activity was over three years ago.
    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.

 

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