Archive for brain cancer

FREE Running Program for Cancer Survivors in MD, DC, VA, NY & Chicago

Andy & Alan 2004 Bay Bridge 10K

Andy & Alan @ Rockville Rotary Twilighter 8K Runfest 1992

 

Pictured above is my husband Alan (on the right) with his childhood friend Andy.  Since this picture was taken, Andy has run more than 30 marathons, completed 13 triathlons and has become a certified running coach.  Despite all these accomplishments, Andy always made time to go for a run or walk with Alan, even after he was diagnosed with cancer.

 

It was no surprise to me that Andy connected with The Ulman Cancer Fund’s CANCER to 5K Training Program - a FREE 12-week training program designed to introduce or reintroduce cancer survivors to training for and completing a 5K road race.  Amazing, right?!

ABOUT The CANCER to 5K Training Program:

Research has now shown that exercise is especially important for cancer survivors both in and out of active treatment.  Regular exercise not only improves mood, boosts self-confidence and reduces fatigue, but there is loads of evidence suggesting that higher levels of physical activity can help keep the cancer from recurring.

 

The Cancer to 5K Training Program is a progressive run/walk program designed to get cancer survivors to the 5K finish-line happy, healthy and injury-free.  

*  Who can join?  Cancer to 5K is open to any cancer survivor regardless of age, location, treatment status or fitness level.  Survivors who have completed treatment as well as survivors who are currently undergoing treatment can participate.

*  Where is training held?  If you live in the following areas, certified running coaches and experienced volunteer runners (aka “Sherpas”) will help train you in a small group setting.  Each 12-week session is limited to 10 participants.  Click HERE for exact locations in:

      • Washington DC/Northern Virginia
      • Montgomery County Maryland
      • Howard County, Maryland
      • Baltimore, Maryland
      • New York, NY
      • Chicago, IL.

* What if you live elsewhere?  If you live outside the current group training areas, you can still participate with The CANCER to 5K “At Home” Training Program.  As a Cancer to 5K “At Home” participant, you will receive one-on-one coaching with a Cancer to 5K coach. Workouts will be sent to you via email, and you will have access to your coach via email and phone.

Registration for the fall training season is now OPEN!  
Group workouts will begin in August 2014.
“At-Home” participants can begin training anytime.

 

For more information, contact Program Manager Laura Scruggs via email at laura@ulmanfund.org  or via 410.964.0202 x108.  

Please note:  A medical waiver must be signed by the participant’s current primary care physician to ensure that training for a 5K won’t negatively impact treatment or recovery.

 

Financial Assistance from Walk In My Shoes Cancer Foundation

 

 

If you’ve been diagnosed with cancer and are having a hard time making ends meet, check out the Walk In My Shoes Foundation.

Walk In My Shoes Foundation assists cancer patients with paying rent, mortgages, utility bills, medication, purchasing gas cards, buying groceries, etc.  To qualify for assistance, which is based on availability, the following guidelines have been set:

  • Only patients undergoing cancer treatment are eligible for assistance.
  • Only bills in patient’s name are eligible for payment.
  • Maximum assistance is $500.00 per patient per calendar year.
  • First come first serve basis.
  • No income guidelines.
  • Men, women, children are welcome to apply regardless of type of cancer.
  • Cash will not be disbursed.

To apply, please complete the form on the Walk In My Shoes Foundation CONTACT US page or email them directly at info@walkinmyshoesfoundation.com.  Someone should contact you within 48 hours.

Personalizing YOUR Cancer Treatment (part 4): Do you know your cancer biomarkers?

Personalized-Medicine

In the near future, instead of saying, “I have breast cancer,” a patient will say something like , “I have a HER2-positive carcinoma with a KRAS mutation.”  Cancer will be defined by it’s own unique molecular profile and biomarkers rather than the body part where it originated.

To learn more about the dozens of biomarkers already being used to guide cancer treatment, check out the table below. Please note: there are thousands of known biomarkers without currently known effectiveness or relevance to cancer care. This table only represents the biomarkers that are currently known to be significant in informing cancer care today.*

Biomarker About Cancers that may benefit from testing Treatments associated with response or lack of response/resistance*
ALK anaplastic lymphoma kinase, an enzyme that can form a oncogenic fusion gene with EML4 lung (non-small cell), lymphoma (anaplastic large-cell), nervous system (familial neuroblastoma) crizotinib (Xalkori®), pemetrexed (Alimta®)
AR androgen receptor, part of the nuclear hormone receptor superfamily, active in cell signaling and therefore cell multiplication and growth prostate, breast, ovarian, bladder, lung (non-small cell) bicalutamide (Casodex®), flutamide (Eulexin®), goserelin (Zoladex®), leuprolide (Lupron®), abarelix (Plenaxis®), gonadorelin (Factrel®)
BRAF also know as v-raf murine sarcoma viral oncogene homolog B1, a proto-oncogene in the RAF/MIL family of molecules active in MAP/ERK cell signaling, promotes cell multiplication and growth colon, skin (melanoma), lung (adenocarcinoma), thyroid (papillary thyroid carcinoma), nervous system (pleomorphic xanthoastrocytomas with and without anaplasia) cetuximab (Erbitux®), panitumumab (Vectibix®), vemurafenib (Zelboraf®)
BRCA1 a so-called “breast cancer gene”, its expression in many cancers can indicate potential response to certain types of therapies lung, ovarian cisplatin (Platinol®)
c-Kit cytokine receptor also know as CD117, a proto-oncogene that interacts with cell growth factors, plays a roll in cell survival, multiplication and differentiation GIST (gastrointestinal stromal tumor), skin (melanoma), blood (acute myelogenous leukemia) imatinib (Gleevec®), sorafenib (Nexavar®), sunitinib (Sutent®)
c-MET also known as MET (mesenchymal epithelial transition factor) or HGFR (hepatocyte growth factor receptor), a proto-oncogene active in cell signaling, promotes cancer cell growth and multiplication lung (non-small cell), ovarian erlotinib (Tarceva®), gefitinib (Iressa®)
COX-2 cyclooxygenase-2, also known as protaglandin-endoperoxide synthase-2 (PTGS2), an enzyme important to creation of prostaglandins, which are messenger molecules that play a role in many cancers lung (non-small cell) celecoxib (Celebrex®)
EGFR epidermal growth factor receptor, also known as ErbB-1 or HER1, a receptor tyrosine kinase active in cell signaling, promotes cell growth and multiplication lung (non-small cell) cetuximab (Erbitux®), erlotinib (Tarceva®), gefitinib (Iressa®), panitumumab (Vectibix®)
EGFR secondary mutation (T790 M) a mutation of the EGFR gene associated with acquired resistance to certain treatments lung (non-small cell), colorectal, head and neck resistance to erlotinib (Tarceva®), gefitinib (Iressa®)
ER estrogen receptor, part of the nuclear hormone family of intracellular receptors, active in cell multiplication breast, ovarian, female genital tract cancer anastrazole (Arimidex®), exemestane (Aromasin®), letrozole (Femara®), tamoxifen (Nolvadex®), megestrol acetate (Megace®, Megace® ES), fulvestrant (Faslodex®), toremifene (Fareston®), medroxyprogesterone, (Provera®, Amen®, Curretab®, Cycrin®), goserelin (Zoladex®), leuprolide (Eligard®, Lupron®, Viadur®)
ERCC1 excision repair cross-complementation group 1, an enzyme active in DNA repair and therefore a sign of resistance to treatments that work by disrupting tumor DNA lung (non-small cell and small cell), gastric, ovarian, colorectal, bladder resistance to cisplatin (Platinol®), carboplatin (Paraplatin®), oxaliplatin (Eloxatin®)
HER2 human epidermal growth factor receptor 2, also known as HER2/neu or ErbB-2, a receptor tyrosine kinase active in cell signaling, promotes cell growth and multiplication breast, gastroesophageal, gastric, ovarian, colorectal lapatinib (Tykerb®), trastuzumab (Herceptin®), doxorubicin (Adriamycin®, Rubex®), liposomal doxorubicin (Caelyx®, Myocet®), epirubicin (Ellence®)
KRAS proto-oncogene of the Kirsten murine sarcoma virus, active in cell signaling in the EGFR pathway, promotes cell growth and multiplication lung (non-small cell), colon, pancreatic cetuximab (Erbitux®), erlotinib (Tarceva®), gefitinib (Iressa®), panitumumab (Vectibix®)
MGMT O-6-methylguanine-DNA methyltransferase is a gene that encodes a DNA repair enzyme, loss of MGMT may play a role in cancer formation, MGMT can also interfere with treatments that work by disrupting tumor DNA breast, lung (non-small cell), esophageal, brain (glioblastoma multiforme, oligodendrogliomas), skin (melanoma), pituitary gland (carcinoma) lack of response to temozolomide (Temodar®)
MRP1 multidrug resistance-associated protein 1, an ATP-dependent transmembrane drug efflux pump associated with resistance to many drugs breast, lymphoma, head and neck lack of response to anthracyclines such as doxorubicin (Adrimycin®), vinca alkaloids, and methotrexate (Trexall®)
PGP p-glycoprotein, also known as P-gp, an ATP-dependent transmembrane drug efflux pump associated with acquired resistance to many drugs breast, ovarian, lymphoma, head and neck lack of response to anthracylines such as doxorubicin (Adriamycin®), epirubicin (Ellence®) and liposomal-doxorubicin (Doxil®), and other drugs such as paclitaxel (Taxol®), docetaxel (Taxotere®), vinblastine (Velban®), vincristine (Oncovin®), vinorelbine (Navelbine®)
PIK3CA a specific mutation within the PI3 (phosphoinositide 3) kinase pathway or a gene copy number variation, aberrations along the PI3K pathway are associated with many cancers colorectal, brain (glioblastoma), gastric, breast, lung, ovarian lapatinib (Tykerb®); resistance to cetuximab (Erbitux®), panitumumab (Vectibix); decreased response to trastuzumab (Herceptin®)
PR progesterone receptor, also called PGR, part of the nuclear hormone family of intracellular receptors, active in cell multiplication breast, ovarian, female genital tract cancer letrozole (Femara®), tamoxifen (Nolvadex®), fulvestrant (Faslodex®), toremifene (Fareston®), exemestane (Aromasin®), anastrozole (Arimidex®), goserelin (Zoladex®), gonadorelin (Factrel®), leuprolide (Eligard®, Lupron®, Viadur®), medroxyprogesterone (Provera®, Amen®, Curretab®, Cycrin®), megestrol acetate (Megace®, Megace® ES)
PTEN phosphatase and tensin homolog, a tumor suppressor active in EGFR, HER2 and AKT cell signaling pathways breast, colon, lung (non-small cell), brain (glioblastoma), head and neck low expression associated with lack of response to cetuximab (Erbitux®), gefitinib (Iressa®), trastuzumab (Herceptin®), panitumumab (Vectibix®), erlotinib (Tarceva®)
RRM1 ribonucleotide reductase subunit M1, an enzyme required for DNA synthesis from RNA and therefore can interfere with treatments that work by disrupting RNA activity lung (non-small cell), pancreatic high expression associated with lack of response to gemcitabine (Gemzar®), hydroxyurea (Hydrea®, Droxia®)
SPARC secreted protein acidic rich in cysteine, a protein active in tumor growth and spreading skin (melanoma), breast, gastric, pancreatic, head and neck albumin-bound paclitaxel/nab-paclitaxel (Abraxane®)
TLE3 a member of the transducin-like enhancer of split family of proteins, implicated in creation of tumors breast, ovarian taxane therapy such as paclitaxel (Taxol®), docetaxel (Taxotere ®)
TOPO2A topoisomerase IIA, an enzyme active in DNA synthesis and repair breast, colon, ovarian, lung (small cell) doxorubicin (Adriamycin®), epirubicin (Ellence®, Pharmorubucin®), liposomal doxorubicin (Caelyx®, Myocet®)
TS thymidylate synthetase, an enzyme active in DNA synthesis and repair, can be inhibited by certain compounds breast, colon, gastric, head and neck, liver, pancreatic, lung (non-small cell) lack of response to 5-fluorouracil (Adrucil®), cytarabine (Cytosar-U®), pemetrexed (Alimta®)
TUBB3 Class III -tubulin, protein found in microtubules which are important cell structures ovarian, lung (non-small cell) taxanes such as paclitaxel (Taxol®), docetaxel (Taxotere ®), vinca alkaloids such as vinorelbine (Navelbine®)

* Biomarker status (overexpressed, underexpressed, positive or negative for specific mutations, etc.) determines whether that biomarker is associated with response, lack of response or resistance to each treatment. Treatment associations are from published, peer-reviewed medical literature. Citations available upon request. Only your doctor can decide which treatments are appropriate for you.

**Got questions about YOUR biomarkers, e-mail PatientNavigator@carisls.com.  A Patient Navigator who is well versed in molecular profiling and biomarkers will answer your questions.  (this is a FREE service provided by Caris Life Sciences.) 

*** Source:  MyCancer.com (an educational resource sponsored by Caris Life Sciences®) is a fantastic website for cancer patients and their caregivers that provides information about personalizing your cancer treatment using molecular profiling and cancer biomarkers.

Adult Survivors of Pediatric Cancer: Get the 411 on Late Effects of Cancer Treatments

 

Thanks to advances in early detection and better treatment regimens, survivors of childhood cancers often go on to live full and productive lives.  However, the same treatments that cure cancer can also put survivors at risk for future medical problems.  Such health problems, known as “late effects“, can occur months or years or even decades after successful treatment has ended.   

FACT:  In a large study of adult survivors of childhood cancer, researchers have found that more than 95% suffered from a chronic health condition by the age of 45, including pulmonary, hearing, cardiac and other problems related either to their cancer or the cancer treatment.

FACT:  The chances of having late effects increases over time so the older you get, the more likely you are to experience health problems.  Risk factors vary depending type of cancer originally treated, location & size of tumor(s), treatment regimens utilized as well as other patient-related factors.

FACT:  Survivors need proactive, clinical health screenings and ongoing, specialized follow up care. Regular follow-up by health professionals who are experts in finding and treating late effects is key.  The exams should be done by a health professional who is both familiar with the survivor’s risk for late effects and can recognize the early signs of late effects.

 

If you are an adult survivor of pediatric cancer, take a look at these RESOURCES that focus on late effects of cancer treatments:  

* Survivors Taking Action & Responsibility (STAR) program at the Lurie Comprehensive Cancer Center of Northwestern University is a comprehensive long-term follow-up program specifically created for adult survivors of pediatric cancer.   STAR is one of several programs in the country to offer this specialized service.  Here, annual check ups are tailored to each patient and may include a heart ultrasound, a battery of blood tests, a mammogram, a chest MRI, a session with a counselor as well as many other diagnostic tools.

I also LOVE their GET EMPOWERED: A video education series for childhood cancer patients and survivors.  Topics include the impact of childhood cancer on adult survivors, making the transition to adult health care, cardiac risk factors, fertility, finding a “new normal” and navigating the emotional side of survivorship.

*  Another great source of information is The Children’s Oncology Group’s Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers.  Talk to your doctor(s) about these guidelines.

 

*  Beyond The Cure has a very informative website that provides detailed information about the late effects of a cancer diagnosis and treatment involving all aspects of survivors’ lives. To help analyze late effects specific to your diagnosis and treatment, check out their Late Effects Assessment Tool.

*  My Heart Your Hands was created by 2 adult survivors of pediatric cancer.  Their mission is to not only raise awareness of the potential late effects of cancer treatments, but to also equip survivors with information and tools they need to manage their follow up care.  Check out their listing of Late Effects Clinics located throughout the US or listen to founder Stephanie Zimmerman’s story.

 

Remember, the more you know about the possible long-term effects, the better prepared you will be to meet any challenges the future may bring.

If you know of other survivorship resources that focus on late effects of cancer treatment, please post them below.  Knowledge is power.  Let’s share the power!  

 

(sources:  Natl Cancer Institute; The STAR Program; WSJ.com)

Applying for Social Security Disability Benefits with Cancer

 

Meet GUEST BLOGGER Ram Meyyappan. Ram is the senior editor and manager of the Social Security Disability Help website.  Social Security Disability Help contains information on how to apply for disability with over 400 conditions, helpful tips, FAQs along with an extensive disability glossary.

 

If you are a parent suffering from any type of cancer, the condition or the effects of the treatments you are undergoing may make it difficult to take care of your kids, let alone returning to work. In such cases, financial assistance may be available through one of the two Social Security Disability programs. There are two disability programs available to those who qualify under the SSA’s disability criteria. These include the SSI (Supplemental Security Income) program and the SSDI (Social Security Disability Insurance) program.

SSI

SSI is a needs-based program. In order to be eligible, you must be deemed disabled by the Social Security Administration and you must meet certain financial criteria. As of 2013, to qualify for SSI, you must not earn more than $710 as an individual or $1,060 as a couple. You must also not have assets that exceed $2,000 as an individual or $3,000 as a couple.

SSDI

Unlike SSI, SSDI is not a needs-based program. There are no financial criteria to meet. You must, however, have earned enough work credits through your previous work history. In order to have enough work credits to qualify for SSDI, you must have worked five of the past ten years. If you are not old enough to have worked five of the past ten years, you need to have worked half of the time you were able to do so.

Cancer and Meeting the Medical Requirements

The SSA uses a manual called “the blue book” to evaluate whether or not a condition qualifies for disability benefits. Cancer is covered in Section 13 of the SSA’s blue book under Malignant Neoplastic Diseases. Just being diagnosed with cancer alone does not mean that you will qualify for benefits unless it is a type of cancer that is listed in the compassionate allowances program. In most cases, the cancer has to be inoperable, have distant metastases (has spread), or be recurrent after surgical procedures or irradiation.

You will need to prove through your medical records and work history that your cancer prevents you from working at the job at which you were previously working or any other job for which you are qualified.

Qualifying Under the Compassionate Allowances Program

Certain types of cancer can qualify for Social Security Disability benefits in less than two weeks under the SSA’s Compassionate Allowances program. Under this program, individuals who are suffering from very severe conditions can bypass the standard disability claim process and be approved for benefits a lot faster. You will need a physician’s opinion stating that the cancer is not operable or an operative note stating that the cancer was not completely resected in order to qualify under this program. If an operative note is not available, a pathology report indicating positive margins can be used. When applying for benefits, make sure you include this medical documentation and make it clear how you qualify for benefits under the Compassionate Allowances guidelines.

There are numerous cancers that are listed in the compassionate allowance program. For a complete list of all compassionate allowances conditions, please visit: http://www.disability-benefits-help.org/compassionate-allowances.

How to Apply for Social Security Disability Benefits

You can apply for Social Security Disability benefits online or in person at your local Social Security office. Make sure that you have all of the medical evidence that you will need at the time of your application. While the SSA will have you fill out forms that allow them to request copies of your medical records, it is always best to submit medical records on your own as a part of your application to ensure that the SSA receives complete documentation that supports your disability claim.

FREE Kit to Help Manage Side Effects from Chemotherapy

A sample of an Adult Comfort Kit

A sample of an Adult Comfort Kit

We all need a little love once in a while… and if you’ve been diagnosed with cancer and are receiving chemotherapy, you deserve a little extra lovin’. That’s what Peppermint & Ginger Comfort Kits are all about…

 

Peppermint & Ginger Comfort Kits are FREE kits created to help provide comfort and help alleviate some of the more common side effects caused by chemotherapy.  An “Adult Kit” contains peppermint and ginger teas (which can help ease nausea), a soft bristle toothbrush, alcohol free mouth wash and toothpaste and lip balm (to help ease oral side effects experienced as a result of treatment), warm socks and a relaxation CD.  When possible, P&G adds in other goodies as well.  Their “Pediatric Kit” contains hot chocolate instead of teas and it’s contents will vary depending on the age of the patient.

 

If you know of a cancer patient receiving chemotherapy or if you yourself are a patient and would like one of these comforting kits, please click HERE to request one.

Financial Assistance for Families of Children with Brain Tumors

 

The Butterfly Fund (created by The Brain Tumor Foundation for Children) provides financial assistance to needy families of children and young adults with brain and spinal cord tumors.

 

Who qualifies for assistance from The Butterfly Fund?

Families of children and young adults with brain or spinal cord tumors who have an unmet financial need that is a direct result of the child’s brain tumor diagnosis and who are receiving treatment/care at one of the following facilities:

  • All Children’s Hospital – St. Petersburg, FL
  • Arnold Palmer Hospital for Children – Orlando, FL
  • Bi-Lo Children’s Cancer Center – Greenville, SC
  • Blair E. Batson Hospital for Children – Jackson, MS
  • Child Life Institute – West Palm Beach, FL
  • Children’s Health Memorial – Savannah, GA
  • Children’s Healthcare of Atlanta (CHOA) – Atlanta, GA
  • Children’s Hospital – New Orleans, LA
  • Children’s Hospital of Alabama (Birmingham Children’s) – Birmingham, AL
  • Columbus Regional Women & Children’s Center – Columbus, GA
  • Dana-Farber/Children’s Cancer Center – Boston, MA
  • East Tennessee Children’s Hospital – Knoxville, TN
  • Georgia Health Sciences University – Augusta, GA
  • Kentucky Children’s Hospital – Lexington, KY
  • Kids Cancer Foundation – Loxahatchee, FL
  • Medical University of South Carolina Children’s Hospital – Charleston, SC
  • Miami Children’s Hospital – Miami, FL
  • Palmetto Health Children’s Hospital – Columbia, SC
  • Pediatric Oncology Support Team (POST) – West Palm Beach, FL
  • Shands Children’s Hospital @ University of Florida – Gainesville, FL
  • St. Joseph’s Children’s Hospital of Tampa – Tampa, FL
  • T.C. Thompson Children’s Hospital – Chattanooga, TN
  • Vanderbilt Children’s Hospital – Nashville, TN

 

Eligible expenses include, but are not limited to:

  • Assistance with rent or mortgage payments, utility bills, car loan payments, car repairs, miscellaneous household expenses, etc., which a family may be unable to afford due to loss of work at the time of a child’s diagnosis and treatment
  • Items not normally covered by some health insurance plans, such as special medications, long-term or special rehab services, hearing devices, wigs and prosthetic devices, home health services, tutoring, etc.
  • Travel and lodging expenses associated with seeking and/or obtaining treatment at locations outside of the patient’s city or state
  • Funeral expenses

All requests for financial assistance through this program must be made through social worker at any of the medical facilities listed above.  Once a family’s application is completed and signed by appropriate medical personnel, it is submitted to the The Brain Tumor Foundation for Children.  Most applications are approved within 2 -5 business days.  Funds get disbursed directly to the creditor.

Brain Tumor Clinical Trial Registries from All Over the World

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The International Brain Tumor Alliance (IBTA) has created a list of brain tumor clinical trial registries available online.  Although some of these resources are specific to brain tumors, others are not.  I am reposting this information as this listing is one of the most comprehensive that I have seen.  Thank you IBTA!  BTW, if you know of a clinical trial registry that is not listed below, please email Chris at christse@internet.co.nz.   I just emailed them about an Immunotherapy Clinical Trial Finder I know of.  Knowledge is power…. we gotta share the power….

International Clinical Trials:

ClinicalTrials.gov   

ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details.

 

WHO International Clinical Trials Registry Platform (ICTRP)

The World Health Organization Clinical Trials Search Portal provides access to a central database containing the trial registration data sets provided by multiple registries from around the world. It also provides links to the full original records.

 

Current Controlled Trials Ltd

Current Controlled Trials Ltd is part of Springer Science+Business Media. In response to the growing body of opinion in favour of prospective registration of controlled trials, the Current Controlled Trials website was launched in 1998, aiming to increase the availability, and promote the exchange of, information about ongoing randomised, controlled trials worldwide.

 

IFPMA Clinical Trials Portal

The International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) Clinical Trials Portal aims to ensure:

A free and easy-to-use interface for patients and health professionals alike to ongoing clinical trialsclinical trial results and complementary information on related issues; Non-promotional and reliable information; Industry’s commitment to the transparency of clinical trials.

 

Africa:

Pan African Clinical Trials Registry

The Pan African Clinical Trials Registry (PACTR) is a regional register of clinical trials conducted in Africa. The registry is an African initiative serving the needs of Africans. It provides a searchable, electronic database of planned trials and trials currently in progress.

 

South African National Clinical Trial Register

The South African National Clinical Trial Register provides the public with updated information on clinical trials being conducted in South Africa.

 

Asia:

Chinese Clinical Trial Registry (in Chinese and English)

The Chinese Clinical Trial Registry (ChiCTR) was established by the Chinese Ministry of Health as a national clinical trials register to join the WHO International Clinical Trial Registry Platform (ICTRP).

 

National Clinical Research Coordination Center (in Korean and English)

Information on clinical trials being conducted in Korea.

 

The Clinical Trials Registry – India

The Clinical Trials Registry – India (CTRI) is an online register of clinical trials being conducted in India. The CTRI was set up by the ICMR’s National Institute of Medical Studies (NIMS) and funded by the Department of Science and Technology (DST) through the Indian Council of Medical Research (ICMR).

 

Japanese Clinical Trial Registry (in Japanese)

This portal is intended to provide information on clinical trials registered in three major Japanese centers: University Medical Hospital Information Network (UMIN); Japan Pharmaceutical Information Center (JAPIC); and the Japan Medical Association Center for Clinical Trials .

 

Sri Lanka Clinical Trials Registry

The Sri Lanka Medical Association (SLMA) has taken the initiative to establish the Sri Lanka Clinical Trials Registry (SLCTR), which will provide a facility for registration of trials conducted in Sri Lanka or overseas, and for collaborative research between Sri Lankan and foreign researchers.

Australia and New Zealand:

Australian Cancer Trials

This is a free information service that displays the latest clinical trials in cancer care, including trials that are currently recruiting new patients. The website is updated each day with new information from the Australian New Zealand Clinical Trials Registry andClinicalTrials.gov from the United States.

 

Australian New Zealand Clinical Trials Registry

The Australian New Zealand Clinical Trials Registry (ANZCTR) is an online registry of clinical trials being registered in Australia, New Zealand and elsewhere.

 

Cancer Trials Australia

Cancer Trials Australia (CTA) is a clinical trial network spread across multiple sites. CTA provides a fully comprehensive oncology clinical trials service that includes the conduct of single or multisite clinical trials, ethics submissions, research governance, clinical development advisory and laboratory assay services.

 

Victorian Cancer Trials Link

The Victorian Cancer Trials Link (VCTL) is a searchable database of all cancer clinical trials being conducted in Victoria.

 

Cancer Trials New Zealand

The overarching objective of Cancer Trials New Zealand (CTNZ) is to contribute to the New Zealand Cancer Control Strategy commitment to improve cancer control through research and clinical trials.

Europe:

EU Clinical Trials Register

The EU Clinical Trials Register website allows you to search for information on clinical trials in European Union (EU) member states and the European Economic Area (EEA) and clinical trials which are conducted outside the EU/EEA if they form part of a paediatric investigation plan (PIP). The website is hosted by the European Medicines Agency (EMA).

 

EORTC Brain Tumour Group

The EORTC Brain Tumour Group is a multidisciplinary and international group of neurosurgeons, neurologists, medical oncologists, radiation oncologists and basic scientists, and aims to conduct, develop, coordinate and stimulate research on the treatment of primary and secondary brain tumours.

 

Internet Portal of the German Clinical Trials Register (DRKS)

The DRKS is an open access online register for clinical trials conducted in Germany, which allows all users to search, register and share information on clinical trials.

Nederlands Trial Register (in Dutch)

Het NTR is een openbaar toegankelijk en vrij te doorzoeken prospectief trialregister, waarin studies staan geregistreerd die lopen in Nederland of worden uitgevoerd door Nederlandse onderzoekers.

 

Karolinska Clinical Trials Registry

The Karolinska Clinical Trials Registry is a Swedish online register of clinical trials being undertaken at the Karolinska University Hospital and other hospitals in Stockholm county.

 

United Kingdom:

Cancer Research UK

Cancer Research UK maintains a database of cancer trials written for patients, their families and friends. They aim to list all trials recruiting cancer patients in the UK.

 

UK Clinical Research Network Portfolio Database

The National Cancer Research Network (NCRN) maintains a searchable database of eligible clinical studies, known as the NIHR CRN CC Clinical Research Portfolio, which comprises the National Institute for Health Research (NIHR) Portfolio in England, and the corresponding portfolios of Northern Ireland, Scotland and Wales.

 

United States:

CCR Clinical Trials at NIH

The Center for Cancer Research (CCR), NCI’s largest division doing research on campus, conducts brain tumor clinical trials at the NIH Clinical Center in Bethesda, MD.

 

Coalition of Cancer Cooperative Groups

The Coalition of Cancer Cooperative Groups is a nonprofit organization whose mission is to improve the quality of life and survival of cancer patients by increasing participation in cancer clinical trials.

 

EmergingMed

Since December 2000, EmergingMed has guided more than 170,000 patients through a search for cancer clinical trials.

 

Pediatric Brain Tumor Consortium (PBTC)

PBTC’s mission is to contribute rapidly and effectively to the understanding and cure of these tumors through the conduct of multi-center, multidisciplinary, innovative studies with design and analyses based on uniformly high quality statistical science.

 

Radiation Therapy Oncology Group

For 40 years the Radiation Oncology Group (RTOG) has been a recognised leader in working to increase survival and improve the quality of life for cancer patients. Based in Philadelphia, RTOG is a key clinical research component of the American College of Radiology (ACR) and serves as a multi-institutional, international clinical cooperative group funded primarily by the National Cancer Institute.

 

TrialCheck

Used by the American Cancer Society, TrialCheck is a clinical trial database of all federal (U.S.) registered cancer studies and will identify a trial that fits your needs – completely unbiased. Please note, the search facility requires a U.S. zip code.

 

VirtualTrials.com

The Virtual Trials website is one of the most comprehensive sources of information and support for brain tumour patients available online. The website contains a search facility for clinical trials and noteworthy treatments for brain tumours.

 

The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center

The Preston Robert Tisch Brain Tumor Center website has a list of all the brain tumor clinical trials available at their Center.

 

Cedars-Sinai Medical Center

Cedars-Sinai has one of the largest state-of-the-art clinical research facilities of any private hospital in the US.

 

The CERN Foundation

The CERN Foundation (Collaborative Ependymoma Research Network)  is comprised of a dedicated group of scientists and adult and pediatric neuro-oncologists working to find new treatments for ependymomas. Clinical trials are an integral part of the CERN Foundation’s many projects and collaboration.

 

City of Hope Clinical Trials On-Line

City of Hope is recognized worldwide for its compassionate patient care, innovative science and translational research, which rapidly turns laboratory breakthroughs into promising, new therapies. It is one of only 40 National Cancer Institute-designated Comprehensive Cancer Centers nationwide and a founding member of the National Comprehensive Cancer Network.

 

University of Pittsburgh Cancer Institute (UPCI)

Summaries of clinical trials ongoing at the Univeristy of Pittsburgh Cancer Institute are available on the Clinical Trials section of their website.

Corporate:

 

Amgen Trials

AmgenTrials.com is dedicated to bringing information about Amgen’s clinical trials to patients and healthcare communities.

 

Antisense Pharma GmbH

Information on clinical trials run by Antisense Pharma, including the phase III SAPPHIRE study on Trabedersen (AP 12009).

 

AstraZeneca Clinical Trials

This website provides clinical trial data, results and other information from or regarding AstraZeneca-sponsored clinical trials.

 

Boehringer Ingelheim International GmbH

Comprehensive information on new and ongoing confirmatory clinical trials sponsored by Boehringer Ingelheim are provided atClinicalTrials.gov. Results of Boehringer Ingelheim-sponsored trials can be found on their Trial Results website.

 

Bristol-Myers Squibb Clinical Trials Registry

This website lists clinical trials for which Bristol-Myers Squibb has full disclosure responsibility.

 

Celldex Therapeutics

Celldex has four programs currently under clinical evaluation for the therapy of cancer, including CDX-110 for glioblastoma multiforme (GBM).

 

Eli Lilly and Company Clinical Trial Registry

This site contains information and links about clinical studies sponsored by Eli Lilly and Company.

 

Glaxo Smith Klein Clinical Study Register

This register provides summary protocol information for GSK sponsored clinical studies.

 

Merck & Co. Inc.

Merck (operating as MSD outside the U.S. and Canada) register all of their trials on ClinicalTrials.gov. Information about ongoing clinical trials is also available through the IFPMA Clinical Trials Portal.

 

The Merck Group

Merck KGaA and its division for innovative small molecules and biopharmaceuticals, Merck Serono (operating in the US and Canada as EMD Serono ) carry out a series of clinical trials, all of which are registered on clinicaltrials.gov.

 

Novartis

The Novartis clinical trials website (for U.S. residents only) is designed to inform the public about important medical research studies as well as to educate patients and caregivers about the clinical trial process. For clinical trials outside the U.S. all Novartis clinical trials are registered on ClinicalTrials.gov.

 

NovocureTrial.com

This site contains information on clinical trials involving the NovoTTF device from Novocure Ltd.

 

Peregrine Pharmaceuticals Inc.

Peregrine Pharmaceuticals is a clinical-stage biopharmaceutical company developing first-in-class monoclonal antibodies for the treatment of cancer and viral infections.

 

Roche Clinical Trial Protocol Registry and Results Database

The Roche clinical trials database contains information about clinical trials sponsored by the Roche Pharmaceuticals Division and the Roche Diagnostics Division. The website is hosted by a third party, CenterWatch, to ensure impartiality.

 

Tocagen Inc.

News and updates on clinical trials run by Tocagen Inc., which is developing an innovative therapeutic approach to the treatment of glioblastoma multiforme (GBM).

 

Disclaimer: Please refer to IBTS’s disclaimer regarding the information provided on their website.

Immunotherapy Clinical Trial Finder

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Immunotherapy is a type of cancer treatment that boosts the immune system’s fighting defenses to help the body destroy cancer cells.  Many clinical trials testing new and potentially promising “immunotherapies” are currently enrolling cancer patients in the United States and abroad.  To learn more about immunotherapy clinical trials or to find a trial that might be right for you, check out The Cancer Research Institute’s Clinical Trial Finder.  Here’s how it works:

 

  1. Select a cancer type.*
  2. Fill out CRI’s simple request form.
  3. Within 3 business days, you will be emailed a list of trials that you may be eligible for.
  4. Take the results to your doctor to discuss; contact the clinical trial sites/research teams directly; and/or contact the Clinical Trial Institute at clinicaltrials@cancerresearch.org for more information or for help interpreting your results.

* Current cancer types include:  Brain CancerBreast CancerCervical and HPV-Related CancersColorectal CancerLeukemiaLiver CancerLung CancerLymphomaMelanomaMyelomaOvarian CancerPancreatic CancerProstate CancerSarcoma and Bone CancersStomach Cancer.

If your cancer type is not listed, send an email to clinicaltrials@cancerresearch.org with information about your cancer type, stage and treatment history, as well as your location.  They see if there are any matches.

WTF is “Ovarian Tissue Cryopreservation”?

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For younger women diagnosed with cancer, the same treatments that are designed to save their lives can damage their ovaries and render them infertile.  However, there are options available to help preserve fertility.

 

For some female patients, egg & embryo freezing is one option if done before treatment begins.  For other women with aggressive cancers or hormone-sensitive cancers, this is not an option.  Women with aggressive cancers may need to start treatment immediately and don’t have the 3-6 weeks needed to harvest eggs.  Women with a hormone-sensitive cancer can not have their ovaries stimulated as this process can exacerbate the cancer.

 

For these women (those who can not harvest & freeze their eggs), there is an experimental option called “Ovarian Cryopreservation.”  Dr. Kutluk Oktay, director of the Institute for Fertility Preservation/Reproductive Specialists of New York explains it like this… “Ovarian cryopreservation is a procedure where, when a woman is faced with a medical condition that would affect [her] future fertility, the ovary is removed through a keyhole procedure and it’s taken through a specialized process which involves treating the tissue with antifreeze substances and utilizing an automated process to preserve the ovary for future use.”

 

How does this new ovary-freezing procedure work?

According to Dr. Oktay, doctors first remove the ovary and then, once a woman has completed cancer treatment, transplant the tissue back into the abdomen – or even under the skin. Once transplanted, the ovarian tissue will be able to turn its supply of immature eggs into viable ones.  The procedure takes about 40 minutes and can be done under local anesthesia.

 

Ovarian Tissue Cryopreservation is not recommended for young women with ovarian cancer, leukemias or lymphoma.  This process also potentially lends itself putting cancer-tainted tissue back into a patient who’s been cured.

 

Got more questions?  Connect with Fertile Hope - they help cancer patients get the information they need to make educated fertility decisions before and after cancer treatments- from understanding fertility risks to fertility preservation techniques to understanding what parenthood options exist after cancer.  (Fertile Hope is a national LIVESTRONG initiative)