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The goal of the Foundation is to provide

  • Information to families suffering with Glioblastoma of the spine - there is so much to learn in such little time,

  •  

  • Support for families

  • Raise funding for clinical trials

 

Best Survival Rate

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New York, NY 10017

(646) 652-8567     

info@dgoldringfoundationglioblasoma.org

Cordectomy for intramedullary spinal cord glioblastoma with a 12-year survival

Background:

Prognosis of patients with spinal cord glioblastoma is poor, with an average survival of 18 months. There are reports in the literature describing cordectomy as a treatment option for patients with spinal cord tumors.

Case Description:

This is a case report of a patient with spinal cord glioblastoma who, in addition to radiation and chemotherapy, was treated with cordectomy. Outcome of treatment resulted in 12-year survival.

Conclusion:

Cordectomy in spinal cord glioblastoma can result in prolonged and meaningful survival

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4123255/

Glioblastoma Symptoms

Glioblastoma multiforme is the most common malignant brain tumor in adults. Metastasis of intracranial glioblastoma via the cerebrospinal fluid to the spine is a rare occurrence. 

Glioblastoma multiforme (GBM) accounts for about 50% of glial neoplasms and is the most common primary malignancy of the central nervous system (CNS). Metastasis of intracranial GBM to the spinal cord has been described with increasing frequency in recent years. Autopsy series suggest that approximately 25% of patients with intracranial glioblastoma have evidence of spinal subarachnoid seeding, although the exact incidence is not known because postmortem examination of the spine is not routinely performed.[1,2] Symptomatic spinal metastasis from primary glioblastoma are rarely reported.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3075830/

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Clinical trials

With Glioblastoma of the Spine you will not be eligible for any clinical studies, but you can ask for compassionate use of study drugs.  Don't give up on the first, "no" this is a battle for your life.  Ask if your local doctor can participate in a study that based in another city, you don't always have to travel.  

https://clinicaltrials.gov/ct2/

Memorial Sloan Kettering Trials

https://www.mskcc.org/cancer-care/clinical-trials/search?keys=glioblastoma+&disease=All&phase=All&investigator=

Spinal Cord Injury Support

When you have Glioblastoma of the Spine you do have a traumatic spinal cord injury and  you must also have support and treatment for that aspect

Kessler and Christopher Reeves Foundation:

https://www.christopherreeve.org/blog/daily-dose/nrn-spotlight-kessler-institute-for-rehabilitation

Genomic testing

Ask for a slice of your tumor and send it here - they will test it to see the anomalies in your cancer cell.  The theory is there may be a medication or trial out there that can stop one of the anomalies in your cancer cell, which could then stop or slow it from reproducing. This is a free service, there is no downside to try it.  The hospital must give you any remaining amount of your tumor, they may try to be llazy, just show up in the lab and tell them you will wait and they must give it to you.  They must give you copies of all of your medical records, if you for a copy just before you are released from the hospital it should be free, always say it is for further treatment and always keep a copy. 

Foundation Medicine (https://www.foundationmedicine.com/)

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Primary spinal glioblastoma multiforme (GBM) is a rare clinical entity with an aggressive course and an invariably dismal prognosis. Its clinical characteristics, radiologic and pathologic findings, and treatment protocols have been discussed in a few cases.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5406076/

Cases of glioblastoma multiforme (GBM) metastasizing to the leptomeninx or the intramedullary spine are quite rare and prognoses are relatively poor. We present three cases of GBM with spinal metastasis, one of which also had leptomeningeal dissemination. Three patients with GBM were admitted to our clinic for postoperative radiotherapy after surgery. Leptomeningeal metastasis and dissemination were diagnosed with magnetic resonance imaging. Radiotherapy provided only temporary relief from pain with small improvement in neurological deficit but no survival advantage.

http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2006;volume=54;issue=4;spage=428;epage=430;aulast=Karaca

Cases of glioblastoma multiforme (GBM) metastasizing to the leptomeninx or the intramedullary spine are quite rare and prognoses are relatively poor. We present three cases of GBM with spinal metastasis, one of which also had leptomeningeal dissemination. Three patients with GBM were admitted to our clinic for postoperative radiotherapy after surgery. Leptomeningeal metastasis and dissemination were diagnosed with magnetic resonance imaging. Radiotherapy provided only temporary relief from pain with small improvement in neurological deficit but no survival advantage.

http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2006;volume=54;issue=4;spage=428;epage=430;aulast=Karaca

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