a patients perspective on being newly diagnosed with gbm

© 2010 A Pa)ent’s Perspec)ve 1

The Top 10 Things You Should Do A pa)ent’s perspec)ve on being newly diagnosed with glioblastma


About this perspec)ve

In November 2008, my liBle brother Johnny B had a seizure at work and was rushed to the hospital, unconscious.

The culprit was a tumor in his brain. Second and third opinions with trusted neurosurgeons resulted in the same recommenda)on: surgery, immediately.

The results of the tumor biopsy declared a death sentence: glioblastoma, grade IV. There is no grade V. Average life expectancy, 14 months. Well, it’s been over 15 months, and Johnny B is going strong. He’s bea)ng the odds, bea)ng the unbeatable glioblastma. The journey con)nues, but we wanted to pause and take a moment to share with you some )ps we’ve learned along this wild ride.

The informa)on expressed in this ebook is based the experience of Johnny B – a pa)ent, warrior, survivor – and his team of care givers.

The informa)on should not be used for diagnosis or treatment, or as a subs)tute for professional medical care. We urge you to consult with your health care provider prior to aBemp)ng any treatment on yourself or another individual.

Johnny B is the cu.e pie in the lower right. That’s me in the upper le9, the big sister. This photo was taken in the 1960s, but it captures Johnny’s personality to a tee. He hasn’t changed much in 40 plus years; s.ll quick with a smile. The only difference is now the smile is typically accompanied with a smart remark.


Contents

Tip 1: Mobilize

Tip 2: Get Your Tumor Tissue Tested

Tip 3: Don’t Visit the Doctor Alone

Tip 4: Get Organized

Tip 5: Get Educated

Tip 6: Boost Your Immune System

Tip 7: Stay Hydrated, Keep Moving

Tip 8: Understand Insurance Coverage

Tip 9: Use an Online Journal

Tip 10: Visual Spontaneous Remission


Tip 1: Mobilize


Tip 1: Mobilize

If you, or someone you love, have been diagnosed with GBM, then you know the prognosis is grim.

It sucks. It’s scary. And you’re freaking out. But you need to push through the ini)al shock and mobilize. Time is of the essence.

Don’t be shy. Ask for help. Assign tasks to friends and family; everything from helping around the house to researching insurance coverage and new GBM treatment op)ons.

Johnny B and his wife Ka)e assigned tasks to the en)re family. Ka)e’s sister Molly and I were appointed chief researchers. We were on the frontlines gathering informa)on, dis)lling it, and presen)ng it.

The community rallied around the family, helping with meals, housework, the kids, you name it.

If you don’t have a close-‐knit group to rely on, then connect with folks online or in a local support group.

You don’t need to face this alone.



It’s important to have your tumor tested for gene)c markers that may impact treatment.

If you’ve been diagnosed with a brain tumor, and have not yet undergone surgery, start shopping immediately for a doctor.

Find a doctor who is open to crea)ve approaches to treatment. Remember that you and your cancer are unique and your treatment plan should be highly personalized.

Prior to surgery, discuss with your doctor that you’d like to save the removed )ssue for further analysis.

If your doctor has an onsite lab for tumor mapping, make sure your treatment plan includes this panel of gene)c tes)ng.

If not, find a brain cancer center that will take your )ssue and test it for you. For example, the Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment at Swedish Medical Center’s Neuroscience Ins)tute, the lab technicians will work directly with your doctor to transport and test your )ssue sample.

Once the tumor has been tested and effec)vely “mapped,” work with your doctor to determine the best treatment plan for your form of brain cancer.



Make sure to have your tumor tested for the following gene)c markers: MGMT, EGFRvIII, and PDGFR.

I know what you’re thinking. More acronyms. Just what you need. Vanna, I’d like to buy a vowel.

Here’s a quick shorthand descrip)on of why it’s important to test for these gene)c markers.

MGMT

An enzyme produced by the “MGMT” allows the damaged tumor cells to repair themselves. The level of expression of the gene that controls the MGMT enzyme predicts whether the standard treatment protocol involving temodar will be successful.

EGFRvIII

Epidermal growth factor variant III muta)on. The vaccine under development that targets that specific muta)on seems promising. However, only 40 percent of GBM tumors test posi)ve for this variant.

PDGFR

Overexpressed platelet-‐derived growth factor (PDGFR), is the target of gleevec. If there is high MGMT ac)vity, which predicts that temodar will be ineffec)ve, gleevec is a reasonable alterna)ve, in combina)on with one or another chemotherapy agent. But this protocol is much more effec)ve if the PDGF overexpression is present.

Con)nued



Your first doctor’s visit, post surgery, is difficult. This is when the results of the tumor biopsy are presented.

And you’ve been handed an invariable death sentence: glioblastoma mul)forme (GBM).

Breathe.

Hopefully, you were not alone for this first appointment. Moving forward, it’s best to bring one or two folks to help you process informa)on.

Bring levelheaded people that can take copious notes and, if needed, ask tough ques)ons on your behalf.

Make a prac)ce of wri)ng down ques)ons before your visit. Then refer to these ques)ons during your visit and write down your doctor’s responses.

Don’t be in)mated to ask for clarifica)on. If you don’t understand the medical jargon, ask your doctor to use language that a mere mortal can comprehend.



Create and keep a medical binder with every scrap of informa)on you’ve gathered about GBM.

When you are diagnosed with GBM, the amount of informa)on you need to process can be overwhelming.

It’s important to get organized. And a binder is a good approach. Create a tab where you keep a complete list of your medicines as you’ll be asked for this informa)on over and over and over.

Create another tab where you keep a complete record of your doctor visits, with outcome summaries.

Consider crea)ng a tab where you keep an ongoing list of ques)ons to ask during doctor visits. And perhaps another tab to store interes)ng ar)cles.

Johnny B’s wife Ka)e is hyper organized. Right out of the gate she had the presence of mind to create a medical binder with doctor phone numbers, a list of Johnny’s medicines, and interes)ng ar)cles about GRM treatment op)ons.

If you are not as organized as Ka)e, and need a star)ng point, contact the Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment. These wonderful folks have created a handy notebook that can help you organize informa)on.


Tip 5: Get Educated


Tip 5: Get Educated

You’ve got to be thick skinned to get educated about GBM. The survival sta)s)cs are devasta)ng, and these stats are unavoidable.

However, gemng educated will allow you to speak the same language as your doctor and enable you to take an ac)ve role in your treatment. Here are some recommenda)ons.

Understand the standard treatment

The “gold standard” of treatment includes surgery, followed by the combina)on of radia)on with a new chemotherapy agent, temozolomide (trade name temodar in the USA and temodal elsewhere in the world).

While this new standard appears to produce a notable improvement in outcome from previous treatments, it s)ll falls far short of being effec)ve for the great majority of pa)ents.

Evaluate promising vaccines

The best treatment protocols aner ini)al diagnosis are now three vaccines:

1.  DC-‐VAX vaccine developed at UCLA and Cedars Sinai.

2.  The vaccine for the EGFR variant III developed at M. D. Anderson and Duke.

3.  The vaccine for the cytomegalovirus virus, also developed at Duke.


Tip 5: Get Educated

Inves)gate clinical trials

You can find a list of current clinical trials at ClinicalTrials.gov.

There are pros and cons to par)cipa)ng in clinical trials. However, it’s beBer to be armed with trial informa)on than to be caught flarooted.

Your immediate goal is simply to gather informa)on. You don’t need to make enrollment decisions, especially if you are newly diagnosed. You’ll find that most of the trials are for pa)ents with recurrent or progressive glioblastoma.

While you do not need a recommenda)on from a physician or oncologist to par)cipate in a clinical trial, you may need their help to decipher eligibility requirements and comprehend side effects. Gather your informa)on, and then ask your doctor for guidance.

Con)nued

http://www.clinicaltrials.gov/



Do whatever you can to boost your immune system—immediately.

We built a supplement cocktail for Johnny, comprised of mul)ple agents that have been clinically tested for efficacy in trea)ng glioblastoma.

Our approach was based on the research of 14-‐year GBM survivor, Dr. Ben Williams. His book is chock full of useful informa)on and the cocktail approach has been helpful for Johnny.

Here is an excerpt from Dr. Williams’s book that you may find interes)ng.

Why a cocktail approach?

1.  The approach has evolved based on the efficacy of the treatment of AIDS.

Both viruses and cancer cells have unstable gene)c structures very suscep)ble to muta)ons.

This implies that unless a treatment is immediately effec)ve the dynamics of evolu)on will create new forms that are resistant to whatever the treatment may be. However, if several different treatments are used simultaneously (instead of sequen)ally, which is typically the case), any given muta)on has a much smaller chance of being successful.

2.  Cancer treatments of all sorts are probabilis.c in their effects; none of them work for everyone.

Any given cancer diagnosis is an amalgam of different gene)c defects that respond in different ways to any given treatment agent.

This is especially true for glioblastomas, which have a mul)plicity of gene)c aberra)ons that vary widely. Any given "effec)ve" treatment agent will benefit only a minority of pa)ents. The result is that the chances of finding an effec)ve treatment increase the more different treatment agents that are u)lized.

http://www.amazon.com/Surviving-Terminal-Cancer-Treatments-Oncologist/dp/1577491165/ref=sr_1_1?ie=UTF8&s=books&qid=1267209989&sr=8-1



3.  Any successful treatment will need to be systemic in nature.

Cancer cells are typically evident in loca)ons in the brain distant from the main tumor, indica)ng that metastases within the brain can occur. Localized treatments such as radiosurgery may be beneficial in terms of buying )me, but they are unlikely to provide a cure.

Even if the localized treatment eradicates 99.9% of the tumor, the small amount of residual tumor will expand geometrically and soon will cause significant clinical problems.

My advice: create a cocktail, but don’t be surprised if your oncologist is not suppor)ve.

Why? If an agent isn't FDA approved specifically for trea)ng glioblastoma, US-‐based oncologists won't recommend it. Pushing an agent through FDA approval requires a lot of money. If the pharmaceu)cal company doesn't believe it will recover its investment, the approval won't be pursued.

No approval, no oncologist recommenda)on.

Con)nued

It’s an unfortunate Catch-‐22. Rather than fight the reality, it’s best to recognize that the oncologist’s hands are )ed, and find a friendly doctor that can help.

We turned to Johnny’s family physician for help in vemng the agent combina)ons and dosage levels of his cocktail.

If you are interested in learning more about the cocktail approach, I’d highly recommend reading Dr. Williams’s book, “Surviving Terminal Cancer: Clinical Trials, Drug Cocktails and Other Things Your Oncologist Won’t Tell You About.”



I asked Johnny what )ps he would have for someone undergoing chemo and radia)on.

His response, "Don't get cancer. It throws a wrinkle into everything.”

Stay hydrated

But seriously, his No. 1 )p is to stay hydrated. If you start to feel achy, get your fluid levels checked. If your levels are low, get an IV.

Prominent side effects of radia)on and chemo include nausea and cons)pa)on. It takes a while to figure our how your body will respond chemo and radia)on. But be aware that it’s not uncommon to become dehydrated. Because you’re nauseous, you’re less inclined to eat, let alone drink fluids.

Johnny became extremely dehydrated during his first few months of chemo. If you’ve ever been dehydrated, you know how painful it is. So, again, if you start to feel achy, get your fluid levels checked. And consider adding an electrolyte replacement to your water, like Nuun from REI.

Keep moving

To keep cons)pa)on at bay, keep moving, everyday. Walk around the neighborhood, around the house, whatever you can do.

The day before you start a round of chemotherapy get plenty of sleep, drink plenty of water, add MiraLAX to smoothies to help with cons)pa)on.



Before you begin treatments, it’s a good idea to learn what your insurance will cover.

Contact your insurance broker and ask for a descrip)on of your drug benefits.

Many plans have a cap on outpa)ent drugs and chemotherapy is expensive. If you your drug benefits are limited, don’t panic.

Most manufacturers have a compassionate care program that can help you get their medica)ons at a much-‐reduced rate.

Call the drug manufacturer directly, tell them about your diagnosis and be explicit about what you need.

If you are uncomfortable approaching the manufacturer, ask someone else to pick up the phone on your behalf.



Your well-‐inten)oned friends will eventually drive you crazy, asking you, and family members, about your progress.

Responding can be painful, not to men)on )me consuming.

We found Caring Bridge to be an effec)ve way to keep people up to date. It’s simple to create a personalized online journal, and it’s free.

The level of detail and frequency of communica)on is up to you. Some)mes it’s easier to have a family member or close friend to post updates about your progress.

Ka)e is the chief Caring Bridge scribe. Her updates are always posi)ve and contain just he right level of informa)on for broad consump)on.

In addi)on to the Caring Bridge update, our immediate family receives more detailed emails aner every MRI review.

http://www.caringbridge.org/visit/johnbarrows


Tip 10: Visualize Spontaneous Remission


Tip 10: Visualize Spontaneous Remission

You are not a sta)s)c. You are an individual. And if you had to get GBM, well, this is probably the best )me in history to get diagnosed.

New treatment op)ons are advancing rapidly, and there is hope for a cure. Your job is to stay healthy, and stay alive, un)l that cure is found. Yes, cancer sucks. But recognize that the words you use to describe your situa)on have tremendous power. Don’t give cancer any addi)onal nega)ve energy.

Visualize spontaneous remission.

Here’s some pragma)c advice from Johnny B:

I found reading “The Power of Now” by Ekhart Tolle was helpful, if you can get through it.

Not looking too far ahead or too far behind is a powerful tool when you’ve been handed a death sentence. It keeps you focused on the Now, not looking back second guessing why me and not looking too far forward on the things you’ll miss out on with your loved ones.

Controlling the liBle voice inside your head and monitoring your internal conversa)on was cri)cal for me. This quote was especially relevant right aner my diagnosis. There are a lot of these feelings you have deal with. His book helped me, although like I said it’s not for everyone.

"Unease, anxiety, tension, stress, worry — all forms of fear — are caused by too much future, and not enough presence. Guilt, regret, resentment, grievances, sadness, biBerness, and all forms of nonforgiveness are caused by too much past, and not enough presence.”


Wishing you all the best

We hope you’ve found these )ps to be helpful. It’s the type of informa)on we wish we had 15 months ago.

Our hope is that by sharing our experience, it will encourage you to share yours, so we can learn from each other as a community.

The value of community comes from knowing that you’re not alone on this journey-‐-‐there are others who are in your shoes; who share your fears, setbacks, and victories, large and small.

We wish you all the best on your journey.

Johnny B and me, September 2009.


The Top 10 Things You Should Do A pa)ent’s perspec)ve on being newly diagnosed with glioblastma

a patients perspective on being newly diagnosed with gbm

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