Six-year brain tumor survivor Bob Gibbs exemplifies the importance of saving and storing tumor tissue for life-saving customized cancer immune therapies under development, personalized tumor profiling and treatment planning
Bob Gibbs – a 40-year old husband and father of 4 boys – knows the importance of tumor tissue banking…he likely would not be alive without it. With few of those afflicted with a grade 3 or 4 brain tumor living beyond 4 years, 6-year brain tumor survivor Bob Gibbs is defying the odds because he banked his cancer tissue. This enabled the actual brain tumor cells that were hell bent on killing Bob to, instead, be used to help save his life through a ground-breaking customized cancer vaccine – DCVax(r) – under development by Northwest Biotherapeutics (NWBO.OB, www.nwbio.com).
“What most patients don’t, but definitely should, know is that tumor tissue is a precious information source that can play a very important role in helping to fight your cancer IF – and only if – it is saved at the time of surgery, and properly stored for such use,” said Linda Powers, chairman of HealthBank, an industry leading U.S. bio bank and providing tumor banking services for patients.. “Tumor cells display dozens of biomarkers – a ‘fingerprint’ – that is unique to every patient. This is one reason why many cancer drugs only work in 20-30% of patients with the ’same’ cancer. Saving and banking this precious tissue post-surgery can enable its use for the creation of personalized immune therapies tailored for each patient’s specific cancer profile – an exciting new realm of biotherapy that is now under development and could become the gold standard cancer treatment in the not so distant future.”
With Bob’s astounding recovery and 6 years of survival from a disease that’s effectively an immediate death sentence, he exemplifies the importance of tumor banking for the hundreds of thousands of terminally-ill cancer patients who now have hope for a longer and brighter future. Such tumor banking services for patients have been available in Japan and Germany for years, but is a new opportunity for patients in the U.S.
To help expand patient knowledge and access to such options, and help educate patients on the importance of working alongside their doctors in shaping their treatment plans, Bob has established Miles for Hope (www.MilesforHope.com), a non-profit organization dedicated to raising awareness about brain and other tumor tissue banking and funds to support the cause.
To help underscore the value of tumor tissue banking and generally shed light on the subject, HealthBank offers these FAQs:
WHY SHOULD MY TUMOR TISSUE BE SAVED AND STORED?
Because information from your tumor tissue can help unlock the secrets of your particular cancer, and help you fight your cancer in multiple ways….
- Genetic profiling of your tumor can help evaluate your cancer and its prognosis (how it may behave), and help tailor treatments for you. Profiling services are now available for any patient who wishes to obtain them (see, e.g., Navgenics).
- Chemo-sensitivity testing of your tumor tissue can help identify which drugs your particular tumor is sensitive to and which ones it’s not. Such testing services are now available for any patient who wishes to obtain them (see, e.g., Vivo BioSciences).
- Personalized immune therapies may be produced using biomarkers from your own tumor tissue, together with your own immune cells (see, e.g., DCVax from Northwest Biotherapeutics, which is in clinical trials in the U.S. and is available under compassionate use programs in certain locations outside the U.S.).
WHAT IF MY DOCTOR OR HOSPITAL PLANS TO STORE MY TUMOR TISSUE?
- Most major hospitals collect and archive a sample of each patient’s tumor tissue. This is something quite different than banking your own tumor tissue…. and there is room for both…
- Tumor samples stored by a hospital belong to the hospital, not the patient. You, the patient, have no right to access or use the stored sample of your own tumor. The hospital typically uses your tumor sample for its own research and/or research with drug companies (who often make large payments to the hospital for access to and use of your tumor sample and other patients’ tumor samples).
- Only a small sample is stored by hospitals: enough for research, but not enough to make any personalized therapeutics.
- The method by which the sample is stored makes it unusable for any therapeutics, or for some kinds of testing. Hospitals store patients’ tumor tissues in their Pathology Departments, in paraffin blocks – i.e., embedded in a block of wax. This destroys the condition of the tumor tissue needed to make any personalized therapeutics, or to do some kinds of testing. When tumor tissues are banked, they are flash frozen in their existing condition, which preserves their utility for virtually any kind of use.
- If your doctor or hospital says they need to keep all of your tumor tissue, or they refuse for other reasons to let you collect your own tumor tissue in order to bank it, professionals at the tissue bank can help you obtain cooperation from your doctor or hospital.
- Collecting your tumor tissue for banking is not mutually exclusive with the hospital keeping a sample, too: Even a tiny amount of tumor tissue can be very useful: e.g., just 1/2 gram can be enough for genetic profiling; just 1-1/2 to 2 grams can be enough to make some personalized therapeutics.
HOW DO I SAVE MY TUMOR TISSUE?
- Step 1: BEFORE SURGERY
Contact the tissue bank to have a Kit sent to your doctor. Obtain your doctor’s agreement to save your tissue using the Kit. Let us know if you need any help obtaining your doctor’s agreement. Have your doctor contact us to review the instructions for use of the Kit.
- Step 2: DURING SURGERY
A nurse or technician in the operating room will simply put your tumor tissue into the Kit, seal the Kit, and hand it over to the shipping company representative, who will come to the medical center and wait to receive it.
- Step 3: AFTER SURGERY
The tissue bank will receive the Kit, process the tumor tissue, and freeze it in a special way so that it can be used for the types of purposes described above. If there is enough tissue, it will be frozen in multiple small portions (called aliquots), so that you can unfreeze different portions at different times and use them for different purposes.
HOW DO I USE MY TUMOR TISSUE AFTER IT IS STORED?
- You simply notify the tissue bank whenever you’re ready to make use of some or all of your frozen tumor tissue, and provide written instructions about where you would like to have the tissue sent. The bank will promptly send out the tissue in accordance with your instructions. You will be responsible for the shipping costs, as explained below.
WHAT WILL IT COST TO SAVE AND STORE MY TUMOR TISSUE?
- The costs are comparable to storing umbilical cord blood stem cells. The initial processing and freezing of your tumor tissue, and first year of frozen storage, typically costs $1,995 plus shipping. Subsequent years of storage typically cost $195 per year.
