Archive for bladder 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.

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.

Immunotherapy Clinical Trial Finder

cancer-and-immune-system1

 

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.

The name says it all… “Hope Connections for Cancer Support”


Let’s face it… cancer is a life-changing disease that has the potential to wreak havoc on anyone it touches- patient, caregiver, family & even close friends.

 

If you live in the greater Washington DC area, check out Hope Connections for Cancer Support - they help people with cancer (regardless of age or type of cancer) and their loved ones deal with the emotional and physical toll that comes with a cancer diagnosis.

 

Located in Bethesda, MD, Hope Connections offers the following FREE support services:

  • Professionally-facilitated support groups for individuals with any type of cancer; separate support groups for caregivers, family & friends
  • Professionally-facilitated monthly support groups for bladder cancer (one of 7 regularly held groups in the country); breast cancer; lung cancer, ovarian/gyn cancers; and one just for young adults with cancer
  • Educational workshops led by top oncology professionals
  • Stress reduction & mind-body programs such as yoga, pilates, guided meditation, knitting & more
  • Nutrition counseling

******* UPCOMING WORKSHOP “Helping Your Kids Cope with Your Cancer Diagnosis” – Monday, February 11, 6:00—7:30 p.m.  Prepare and strengthen your children by nurturing skills that will help them cope with your diagnosis. Psychiatrist Stephen Hersh, Director of the Medical Illness Counseling Center will offer guidance to help you navigate this challenging time. *******

 

 

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)

5 Reasons Why I LOVE Champions Oncology

I’ve had the pleasure of working with some of the organizations I write about in this blog; others I wish I had known about during our “cancer journey”; and still others, although not relevant to Alan’s cancer are fantastic resources that can help others in their fight against cancer.

 

Champions Oncology is one of the organizations that we were lucky to find.  Their co-founder Dr. David Sidransky is one of the smartest and most dedicated cancer warriors I know.  They are doing great work to help fight cancer… one person at a time.  Watch the YouTube video above and read what I’ve written below to see why I’m a huge fan of Champions… Below are my Top 5 Reasons…

 

5.  Personalized Oncology is the future of cancer care.  Two people with the exact same cancer can and do respond differently to the exact same treatment regimen.  I wish I had understood this at the beginning of our cancer journey. Read this article from the NY TIMES on how Champions is the ultimate in personalized medicine.

 

4.   Champions organized a “panel” of 13 sarcoma experts (doctors, surgeons & researchers too).   The Panel met, discussed & debated Alan for over two hours.  They built consensus and came up with a plan of action… a plan that we could never have otherwise obtained, even if have if we had visited each of the professionals individually.  BTW, the plan they came up is the only one that actually slowed the growth of Alan’s cancer.  See Reason #2.

 

3.  No Dr. Schmucks Allowed!  Doctors are people, just like you and me.  And at the end of the day, you have to trust your doctor.  But here’s the dealio (as my daughter always says)… Not all doctors are created equal.  And finding the GOOD ones is not always easy.  Alan and I met and worked with quite a few Dr. Schmucks during our cancer journey and some of them were the “Chief of This & That” at major hospitals.  But I can honestly say that every single medical professional that we worked with through Champions Oncology was brilliant and compassionate and they got “it”… as long as there is life, there is hope.  No giving up allowed.

 

2.  Tumorgrafts REALLY WORK… no ifs, ands or buts about it…  Champions implants your tumor into genetically-stripped mice and then they test different drugs and drug combinations to see what works.  If a treatment works in the mice, it can work in your body.  It’s like your own personal clinical trial.

 

1.  They gave us realistic hope.  By the time we found Champions, we were running out of time.  They were both honest and cautiously optimistic with us. If they could find a drug regimen that would slow down or better yet, kill this cancer (which they have been able to successfully accomplish in other patients), we’d have more time together and maybe, just maybe, live happily ever after.  Although our story did not have the happy ending we dreamed of, I know that we did everything humanly possible to save Alan.  And because of this knowledge, my family and I sleep at night knowing we left no stone unturned.

 

 

 

FREE Fertility Medications for Female Cancer Patients

 

If you are a woman of reproductive age & a US citizen who has received a new cancer diagnosis and wish to undergo fertility preservation PRIOR to the start of cancer treatment, you can now receive certain FREE fertility medications.

 

Walgreens and Ferring Pharmaceuticals Inc. are collaborating to provide free access to certain fertility medications (specifically Bravelle, Menopur, and Novarel)  and educational resources including informational guides detailing how cancer treatment affects fertility, access to highly specialized nurses, multimedia materials outlining potential fertility options patients may wish to discuss with their physician, and specialized modules to teach injection training.

Have your physician call Walgreens Specialty Pharmacy at 888-347-3415 with a verbal prescription and the medication will be shipped via UPS to either the physician’s office or the patient.  No completion of forms is required.

 

This program is made possible through Ferring’s h.e.a.r.t. BEAT program.  Click here for more information.