Archive for sarcoma

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;

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 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.


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:

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.

Champions Oncology & Sarcoma


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. Champions is doing great work to help fight cancer… one person at a time. Watch this YouTube video above about a man who was diagnosed with sarcoma to learn more.  And click HERE to see what I wrote about Champions based on my personal experience.

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.

A Little Shirt Can Go A Long Way

These orange "Strength" shirts brought tremendous comfort to rhabdomyosarcoma warrior Brett Johnston. Brett's best friend & cousin and brother started CancerTees.

These orange “Strength” shirts brought tremendous comfort to rhabdomyosarcoma warrior Brett Johnston which is why Brett’s best friend & cousin (Cory Allen) and brother (Scott Johnston) created CancerTees.


In May of 2009, Alan had brain surgery.  I remember sitting in the waiting room of MD Anderson with Alan’s parents and his sisters for 8 hours anxiously awaiting news about Alan’s surgery.  There were tons of other people there also waiting for news about their loved one’s surgery.  Although I have tried very hard to put the memory of that day out of my mind, the one thing I will never forget is Darla.


I don’t know Darla personally- I’ve never actually met her.  You see, Darla was one of the people also being operated on that day at MD Anderson.  Her 25+ closest friends and family sat near us in the waiting room.  They were eating homemade pickles & fried chicken (which smelled delicious!) and they were all wearing these bright pink shirts that said “Darla is Kicking Cancer’s Ass.”  They were fun and full of energy and they were making the best of a tough situation.  The positivity, the energy, the hope that they brought to the waiting room that day was wonderful… and it gave me a feeling that somehow everything would be ok for both Darla and Alan.


Just last week I connected with CancerTees, an organization founded by 2 guys who have been directly touched by sarcoma.  They sell customized t-shirts (like the ones they wore for Darla), hoodies, sweat pants, blankets & bracelets as well as pre-printed ones with sayings like “Cancer Fears Me,” “Survivor” and “Real Men Wear Pink”.


Not only we do have the “sarcoma connection” in common, but I LOVE that a percentage of each sale gets donated to a cancer warrior profiled on the CancerTees site.  Each warrior receives $500 to do with what they choose… pay bills, buy a wig, whatever they need.  If you are looking for a shirt to show your support of a loved one battling cancer, check out CancerTeesyou’ll be doing a double mitzvah (good deed).

Dedicate A Day to A Sarcoma Warrior

Miles2Give is literally running from the Golden Gate Bridge to the White House in the name of sarcoma.

Miles2Give is literally running from the Golden Gate Bridge to the White House in the name of sarcoma.

sarcoma (n):  A malignant tumor that arises from the musculoskeletal system tissues such as bone, muscle or connective tissue.  Sarcomas comprise 1% of adult cancer cases and 15% of pediatric cases.  Although sarcomas can arise anywhere on the body, the most common location is in the limbs.  There are over 30 subtypes of sarcoma; many are resistant to chemotherapy and radiation; diagnosis often occurs after the cancer has metastasized.  


Before Alan was diagnosed with rhabdomyosarcoma in 2009, I had never even heard of the word “sarcoma” much less known anyone who was touched by it.  In the last few months, I can not believe how many incredible people I’ve met who have been affected by sarcoma and are now working hard to do some good.


Meet Landon Cooper, an ultra-runner from Alabama who founded an organization called Miles2Give.  Landon and his team at Miles2Give are currently running 3,000 miles across the US to raise awareness of sarcoma as well as funds for much-needed sarcoma research.  While doing so, they are dedicating each day of running to a person who is battling sarcoma or who has lost their life to sarcoma.  I-N-C-R-E-D-I-B-L-E!


There is no cost to “Dedicate A Day… so if you know anyone touched by sarcoma, pass it on… click HERE for more information.


Last week, Landon ran for my sister in law’s dear friend Paula Tackas, an 8 year sarcoma survivor and incredible woman to boot. ;-)   I’m going to dedicate a day in July for Alan since that is when Landon will be running in Maryland/DC.    I know Alan would love that.



Financial Assistance for Adult Sarcoma Patients



In 2009 my 46 year old husband was diagnosed with pleomorphic rhabdomyosarcoma.  A year later he passed away.  Before this time,  I had never heard of the word “sarcoma”.  You see, sarcomas are rare- really rare.  Although there are more than 30 different types of sarcomas, less than 1% of adults with cancer have a sarcoma diagnosis.  Today, it blows my mind at how many people I now know who have been touched by sarcoma.  Needless to say, I get pretty jazzed when I find out about sarcoma resources….


Check out the Eric D. Davis Foundation- they provide financial assistance for adult sarcoma patients in active treatment.  They can also assist patients with other “rare cancers”—rare being defined as affecting 200,000 or less Americans.


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

With sarcoma and other rare cancers, it’s super important to meet with doctors that specialize in that specific disease.  In order to do this, patients may need  travel out of state for appointments and treatments.  To help ease the financial burden of this expense, Eric D. Davis Foundation (Provide for the Assist Fund) offers grants to cover costs associated with:

▪   transportation (airfare, tolls, car rental, gas, taxi service)

▪   lodging during treatments

▪   meals during treatments

▪   childcare during treatment


Grants are awarded each quarter based on the schedule below.  Patients can receive one grant within a 24 month period.  To apply for a grant during the open period, download this EDDF Provide the Assist Application.

Quarter 1 Open Period: February 1st – 28th

Quarter 2 Open Period:  May 1st – 31st

Quarter 3 Open Period: August 1st – 31st

Quarter 4 Open Period: November 1st – 30th


To qualify, patients must be 18 years of age or older; residing in the US with valid ID; and currently undergoing active treatment for sarcoma (of any type) or other rare cancer at a treatment facility in  the US.   To be considered, applications must be signed by a medical professional or social worker.  Funds are limited and based on eligibility and availability.  There are no income requirements.

For more information on how the EDD Foundation can help adult sarcoma patients, please contact them directly via email at or by calling 1-866-543-4351.

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 or contact Deb at or via phone at (515) 240-5843.


Immunotherapy Clinical Trial Finder



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 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 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)

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