Archive for for young adults with 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)

Financial Assistance for Young Adult Cancer Survivors (Applications Due July 19)

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Common challenges facing many 20 & 30 year olds include paying off school loans, finding a job, securing health insurance and learning to live on their own.  These challenges are often compounded if there’s a history of cancer. When many young adults are finished with treatment, medical bills may have piled up, they are now too old to be on their parent’s insurance, and the debt starts spiraling out of control… but there’s help….

 

The SAM Fund provides financial assistance to young adults as they move forward with their lives after cancer.  Grants & scholarships can cover a wide range of post-treatment financial needs, including (but not limited to): current and residual medical bills, car and health insurance premiums, rent, utilities, tuition and loans, family-building expenses, gym memberships and transportation costs.  In 2011, SAM Fund awarded a total of $135,000 in grants and scholarships to 92 young adult survivors all over the country.  BTW, SAM Fund stands for Surviving And Moving Forward.  LOVE IT!

 

2013 Application Process is NOW OPEN.  Here’s how it works:

1.  Applicants must be between the ages of 17 and 39; a resident of the United States; and either finished with active treatment and free of cancer OR be one year following the completion of planned therapy OR be in remission on maintenance therapy.  If you have questions about eligibility, please email grants@thesamfund.org.

 

2.  Anyone interested in applying must first submit Part One of the application which is due by Friday, July 19th at 5:00 pm EST.  After a review period, selected applicants will then be invited to submit Part Two. Those applicants will be notified in November as to whether they have received a grant.

 

3.  Interested in learning more?

 

Camps for Kids & Families Touched by Cancer

 

Attending one of the many camps created specifically for anyone touched by cancer can be a wonderful way to connect with others who share similar experiences.  While some camps are just for children (or young adults) who have been diagnosed with cancer or have survived a diagnosis of cancer; others are for their siblings; and still others are designed for the entire family to attend.  There are even camps for children who have lost a parent or sibling to cancer.  Creating new friendships, sharing adventures, mastering new skills or simply taking a break from cancer are a few of many benefits these camps can offer.

To find a camp that fits your specific needs, check out these incredible resources that list many different cancer camps.  Most camps have oncology doctors and nurses on staff to  provide medical care to campers when necessary.  Additionally, many of these camps are offered FREE of charge to participants.

Ped-Onc Resource Center which lists camps by state coupled with a short description of each camp.

Cancer.Net also provides a listing of different camp and retreat options for kids and families touched by cancer.

Allen’s Guide offers a listing a camps that specialize in oncology.

Also talk to your oncology nurse or social worker.  They may be able to suggest additional camps and/or retreats that may be beneficial for you.

If you’ve been to a camp that you loved, please comment below.  Knowledge is power… let’s share the power...

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.

Financial Assistance for Families Affected by Pediatric Cancer

A Super Kid with Super Powers!
Image credit: robhainer / 123RF Stock Photo

 

Did you know that 30,000 – 40,000 children are currently undergoing treatment for cancer in the US?  Did you know that even with good insurance coverage, a family can still face out-pocket expenses (not including travel expenses) of $40,000+ per year?  Some parents even have to quit their jobs to care for their child in treatment.  OMG, this is heart breaking on so many levels. 

 

Check out the Isaiah Alonso Foundation (IAF)- a small, volunteer-run organization whose mission is not only to raise awareness for childhood cancer, but to provide much needed financial assistance to families of children with cancer.

 

Here’s the dealio (as my daughter always says)…  

Isaiah Alonso Foundation (IAF) accepts applications from any family who is battling childhood cancer and finding it difficult to meet their financial obligations. Grants up to $750 can be awarded.  Families may apply once per year.

To apply for funding, families must meet the following criteria:

  • Families must be residents of the US.
  • Children must have been diagnosed with cancer before age 19; however IAF can provide grants up until the child turns 21.
  • Although there are no set income requirements to qualify per se, IAF takes everything into consideration on a case by case basis.
  • Verification of a cancer diagnosis from the child’s social worker is required.

To download an application, please click HERE.  If you have questions, please contact the Isaiah Alonso Foundation (IAF) directly via email or via phone (270) 300-5329.

Thank you IAF for all you are doing to help families affected by pediatric cancer! xoxoxo

 

 

 

FREE Wigs for Cancer Patients Living in Des Moines, Iowa

 

If you live in Des Moines, Iowa and have lost your hair as a result of cancer treatments, check out Strands of Strength.  Strands of Strength provides FREE quality wigs to cancer patients- men, women or children- regardless of age or type of cancer – who live in Des Moines, Iowa and who could not otherwise afford a wig.

 

Here’s the dealio (as my daughter always says)…  

Strands of Strength works closely with medical professionals at Iowa HealthBlank Children’s Hospital and Mercy Hospital.   These hospitals will provide patients in need a voucher slip for a free wig.  

Patients can then choose any wig they like from any Strands of Strength-approved wig shop.  The voucher represents payment to the shop.  It’s as simple as that.

For more information, visit StrandsofStrength.com or contact Deb at deb@strandsofstrength.com or via phone at (515) 240-5843.