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Question:

I have read a lot about the use of immunotherapy vaccine against tumor specific EGFRvIII. Does any GBM patient qualify, or is there a necessary criteria?

Answer:

To qualify for this particular trial, a patient must have a
GMB (glioblastoma) that has been newly diagnosed and totally resected (removed), and their tumor must express the EGFRvIII mutation.  This mutation occurs in about 30% of these tumors.

Henry

(EGFRvIII is a common mutation of the epidermal growth factor receptor found in many human brain tumors and in cancers that frequently spread to the brain, such as breast, ovary, and lung cancers – but not in any normal tissues.  The result of this mutation is a specifically altered protein that enhances the ability of cells to form tumors, which can lead to a worse prognosis that for cancers without the mutation/ - From DukeMedNews

(Immunotherapy is the treatment of a patient with the specific goal of stimulating the patient’s own immune system to work harder, which is especially important for those patients undergoing chemotherapy.  For a great understanding of immunotherapy, visit the Science Daily website for a video clip discussing the role of immunotherapy in conjunction with a patient’s treatment for bone cancer.)

Question:

What exactly is an astrocytoma? I’ve heard different doctors use that word to describe different tumors. So who’s right?

Answer:

The word astrocytoma is all-inclusive and can refer to tumors with varying characteristics. Here are some descriptions of how tumors can differ:

An astrocytoma is typically a long-grade tumor, usually referred to as “grade 2.”

An anaplastic astrocytoma is a malignant and more aggressive tumor, corresponding to a “grade 3.”

The glioblastoma multiforme is even more malignant and potentially invasive, referred to as a “grade 4.”

A fourth variant, called a pilocytic astrocytoma, is typically called a “grade 1.”

Henry

Question:

Last fall, my husband was diagnosed with a glioblastoma. Since then, our children have had a tough time dealing with his daily personality changes due to medications and his tumor. How can I support my kids during this time?

Answer:

This is one of our most asked questions - and one we personally dealt with during Tug’s diagnosis and treatments. The Preston Robert Tisch Brain Tumor Center at Duke has an excellent brochure that addresses your question: how can you support your children as their parent’s behavior and personality changes from a brain tumor? Click here for a list of ideas and suggestions.

Jennifer

Question:

Since my diagnosis of a brain tumor, my energy level has spiraled down - leaving me completely wiped out. How can I better understand my fatigue and manage it?

Answer:

Yes, fatigue is a challenge for both the patient and caregiver, and you’ve raised a common question that is often asked. The Brain Tumor Center at Duke has provided a wonderful article addressing both the issue of fatigue and its causes. Believe me, this article is well worth the read - and it won’t leave you tuckered out!

Read the article in "Brain Cancer in the News."

Jennifer

Question:

Jennifer and Henry, my two youngest children are having a tough time understanding their brother's diagnosis of cancer. Are there any organizations that provide support for siblings and parents to help them cope?

Answer:

Yes, Supersibs is an organization that honors, supports and recognizes brothers and sisters of children with cancer. Website: www.supersibs.org , Phone Toll Free, 1.866.444.SIBS or 1.847.705.SIBS

Jennifer

Question:

A relative of mine has brain cancer. She has severe mood swings and can be confused and forgetful at times. Is this the cancer or her drugs?

Answer:

Both cancer and the drugs used to treat it, especially the drug decadron, could cause this. Each brain tumor case is different. To really determine what is causing her symptoms, we would need more information as to the site (location) of the tumor and the treatments and medications the patient is taking at the time to really fully answer your question.

Henry

Question:

What is avastin and why is there so much buzz about it?

Answer:

Avastin is a monoclonal antibody to vasulcar endolthelial growth factor--which helps to recruit new blood vessels for normal tissue and tumor growth. Recent studies have shown the benefit of avastin plus the cheomotherpeutic agent cpt-11 in metastatic colon cancer and more recently in malignant gliomas.

A registration study comparing avastin vs avastin plus cpt-11 is now being conducted in patients with first or second relapse gbm and I am the private investigator for this study.

Henry

Question:

Are there any websites that describe procedures and treatments for a brain tumor?

Answer:

The interactive Brain Tumor Learning Center at Duke provides a helpful user-friendly online resource tool. The site offers colorful animation and audio clips to help patients and caregivers understand cell division, tumor cavity reservoirs, VP shunts and many of the other procedures and treatments relating to brain tumors.  To explore these unique and instructive materials for yourself, click here.

Jennifer

Question:

Have any new "incredible" advances been made to extend the lives of those diagnosed with a GBM?

Answer:

Although no one incredible advance has been made, exciting new studies are underway which explore the role of specific genes that beget proteins – such as the epidermal growth factor receptor (EGFR) and the vascular endothelial growth factor (VEGF) – and their impact on the aggressiveness of a malignant tumor and its resistance to therapy.  Inhibitors of these and other targets are now being evaluated in the lab and the clinic, and we are optimistic that studies of the use of these inhibitors, either as single agents or in combination with other inhibitors or chemotherapeutic agents, will produce the next advances in the fight against this type of tumor.

Henry

Question:

Given that the standard of care for patients with pediatric brain tumors, carboplatin and vincristine, has not changed for over twenty years, why aren't more dollars spent specifically toward researching brain tumors in children, particularly low-grade gliomas?

Answer:

The treatment of children with brain tumors is complicated by the fact that
it is an orphan disease, i.e. they occur in a relatively small number of patients each year. There are maybe only 2000 new pediatric brain tumors diagnosed each year, therefore the usual incentives to fund biomedical research are not present. Although there is some support from the federal government specifically for brain tumor research, the amount is quite small relative to the funding directed to all cancers each year. Furthermore, the federal dollars are not increasing in any significant way – no doubt related, in large part, to the large cost of other USA efforts. The cancer research dollars of the pharmaceutical industry are generally devoted to developing drugs for diseases with which there will be big financial payoffs. Simply put, vastly more common cancers like breast cancer, lung cancer, prostate cancer, and colon cancer generate more money.

The bottom line: there is very limited funding for pediatric brain tumor research.

There are a few exceptions. The Pediatric Brain Tumor Foundation has given a six-year, six million dollar grant to Duke for work on pediatric brain tumors. Other organizations devoted to brain tumor research give much smaller awards via a grant mechanism that have the option, but not the requirement, to focus on pediatric brain tumor research.

It is ultimately a matter of supply and demand. Other worthy causes receive far larger amounts of research support. Only those actually touched by a brain tumor in a child have the true motivation to fund research in this area.

Progress in treatment is being made, particularly through the major brain tumor centers here in the United States. It is incorrect to say that vincristine and carboplatin are the unchanged standard of care for children with brain tumors, since this therapy is largely limited to the treatment of low-grade tumors. Furthermore, new therapy options are being explored, such as temozolomide and small-molecule inhibitors, for children with low-grade tumors. Unfortunately, since progress is frequently, though not always, directly proportional to the resources devoted to the research, it is indeed moving at a slower pace than those of us in the field would like to see.

Ultimately, the family of a patient with a brain tumor should find a program that they feel will make meaningful progress and support their efforts in every way possible.

Henry