A Tough Diagnosis
- 58-year-old Jeremy Atkin was out with his two daughters and nephew, gearing up to go see a Coldplay concert, when his world suddenly turned upside down.
- The builder was drinking tea at a Holiday Inn ahead of the band’s London show when he fell off a stool. According to Jeremy’s family, emergency services were called to the scene after he went unconscious from hitting his head. Doctors then discovered a large brain tumor. It turned out to be stage 4 glioblastoma, a rare form of brain cancer.
- It is crucial to have the support of a family member, close friend, or counselor to help advocate for you throughout this difficult and overwhelming process so that you are able to get the best care possible.
The builder was drinking tea at a Holiday Inn ahead of the band’s London show when he fell off a stool. According to Jeremy’s family, emergency services were called to the scene after he went unconscious from hitting his head.Read More
Fortunately, emergency surgeons were able to remove the tumor, but the severity of his condition is quite fragile. In order to keep Jeremy living life as fully as possible, the family is choosing to shield him from the difficult prognosis.
“My dad has been made aware of his illness but due to his condition he does not understand the severity of this and as a family we have agreed to keep it this way as we want to keep him in a positive mindset,” Jade wrote on her father’s GoFundMe page. “If people do visit please may we ask that you respect this wish.”
Unfortunately, Jeremy has suffered from blood clots in his lungs, which is affecting his body’s ability to tolerate treatment. Currently, his treatment is delayed, and the family is seeking more specialized care at the London Oncology Clinic.
“Anyone that knows my dad knows what a loving and caring man he is, and how much he loves his life and family,” Jade continued. “We aren't willing to let this nasty disease beat him and want to explore every option available to give him some more time.”
Understanding Brain Tumors
According to the American Society of Clinical Oncology (ASCO), brain tumors account for 85 to 90 percent of all primary central nervous system (CNS) tumors. The central nervous system consists of the brain and spinal cord and acts as the main "processing center" for the nervous system. Normal function of the brain and spinal cord can become difficult if there's a tumor present that puts pressure on or spreads into nearby normal tissue.
There are many different types of brain and spinal cord tumors. Some are more likely to spread into nearby parts of the brain or spinal cord than others. Slow-growing tumors may be considered benign, but even these tumors can cause serious problems.
Symptoms of brain tumors, as a whole, are often caused by increased pressure in the skull. This pressure can be caused by tumor growth, swelling in the brain or blockage of cerebrospinal fluid (CSF), according to the American Cancer Society.
General symptoms may include the following:
- Blurred vision
- Balance problems
- Personality or behavior changes
- Drowsiness or even coma
But it is important to note that these symptoms are not exclusive to brain tumors. Still, you should always consult with your doctor if any health problems arise.
New Hope for Those With Glioblastoma
Despite the aggressive nature of GBM, the top brain researcher in the U.S. and neuro-oncologist at Duke University Medical Center, Dr. Henry Friedman tells SurvivorNet that, "You are not dead just because you're diagnosed with a glioblastoma. So many people are told by their doctors or their institutions that they're at, 'I'm sorry, put your affairs in order and just move on.'"
This message of hope comes from the promise of future clinical trials like the one Dr. Friedman and his colleagues are conducting at The Preston Robert Tisch Brain Tumor Center using the modified poliovirus. You can hear from Dr. Friedman directly in the interview he did with SurvivorNet, above.
Clinical Trials Offer Hope for the Future
While outcomes for patients with GBM are poor, clinical trials and future treatments offer some hope. Dr. Friedman and his colleagues at Duke University are investigating a new therapy that combines the modified poliovirus and immunotherapy. "The modified poliovirus is used to treat this tumor, by injecting it directly into the tumor, through a catheter. It is designed to lyse the tumor and cause the tumor cells to basically break up," he tells SurvivorNet.
The goal is that the modified poliovirus will then trigger the body's own immune system to attack and fight the cancer cells. Because the poliovirus is injected only into the tumor, the researchers hope the body's natural immune cells will only attack and kill the cancer cells and not affect the normal, healthy brain tissue.
When discussing the success of the poliovirus study, Dr. Friedman tells SurvivorNet, "It has helped a large number of patients, but not enough. We have a prolonged survival curve of about 18% going out many, many years in our initial trial. We don't want to have 18%, 15%, 20% of people who are long-term survivors. We want them to be at a much higher number."
"I think that the modified poliovirus is going to be a game changer in glioblastoma, but I should also say that its reach is now extending into melanoma soon to bladder cancer."
Dr. Friedman and his colleagues are now taking this a step further by combining this treatment with a type of immunotherapy, called a checkpoint inhibitor. Specifically, the Duke team is using a drug called pembrolizumab (Keytruda) and is coupling it with the modified poliovirus.
By combining these therapies the study team hopes the GBM patient's own immune system will be better equipped to attack and kill the cancer cells. While this is exciting, and certainly a point of hope for patients with GBM, this combination therapy needs to be tested in a clinical trial setting before it can be used to treat all patients with GBM. Currently, the researchers are working toward a clinical trial using the modified poliovirus with pembrolizumab for patients with recurrent GBM.
What is also exciting is that Dr. Friedman and his team think this combination of therapy may be successful in treating more than just GBM. "I think that the modified polio virus is going to be a game changer in glioblastoma, but I should also say that its reach is now extending into melanoma soon to bladder cancer," Dr. Friedman tells SurvivorNet.
While clinical trials such as the one above offer new hope, for patients who are not able to go on clinical trials, it's also important to understand the standard of care.
Understanding the Standard of Care for GBM
The standard of care treatment for a GBM patient usually consists of a surgical resection followed by radiation therapy and chemotherapy.
A neurosurgeon will try to take out as much of the tumor as possible without causing any damage to critical brain structures. Depending on where the patient's tumor is located, sometimes the surgeon can remove the entire tumor, while in other situations the surgeon is only able to remove a portion of the tumor. The goal, in both cases, is to get as much as possible in the safest way. After surgery, patients are given time to heal and regain their strength; usually during four to six weeks of recovery.
The next step is to start radiation therapy and chemotherapy. Most patients who need radiation therapy will have external beam radiation therapy, which is usually given every day (Monday Friday) for six weeks, for a total of 30 treatments. Chemotherapy consists of a drug called temozolomide (also called Temodar) that is given daily with radiation. Unlike other chemotherapies, Temodar is a pill that is taken daily and does not require an IV or port placement. After radiation, patients will get additional chemotherapy using Temodar for 6 months or more depending on how they tolerate the medication.
Some physicians may also use a device called Optune, which goes on a patient's head. Several electrodes are attached to the patient's scalp to deliver an alternating electrical current. While patients do not feel this current, the Optune device has been shown to improve survival and slow tumor growth. However, it's not for everyone. Patients who use Optune will need to shave their heads and wear the device for most of the day, so it's important to discuss with your doctor about whether or not it's a good fit for you.
Although these treatments can help improve symptoms and slow tumor growth, a GBM tumor is so aggressive that it typically grows back after several months. Another standard of care option is to enroll in a clinical trial.
It is crucial to have the support of a family member, close friend, or counselor to help advocate for you throughout this difficult and overwhelming process so that you are able to get the best care possible.
Contributing by SurvivorNet staff.