Tag Archive for sarcoma

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.

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 info@ericddavisfoundation.org or by calling 1-866-543-4351.

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.

 

 

 

Financial Assistance for Pediatric Sarcoma Patients

Dani’s Foundation not only funds research in hopes of finding the cause of and a cure for pediatric sarcoma, but they can also lend financial assistance to those patients & families who are financially struggling due to a sarcoma diagnosis & treatment.

 

Here’s the dealio (as my daughter always says)… Grant applicants must meet the following criteria:

  • Patients must have a pediatric sarcoma cancer diagnosis and be receiving active cancer treatment and/or receiving one year post-treatment care.
  • Applicants must be 26 years or younger.
  • Patients/Parent(s)/Legal Guardian of Grant applicants must enclose copy of identification.
  • Grant applicants may submit one request per twelve month period, maximum of two lifetime awards.  Grants typically range from $250 -$500.

To learn more about Dani’s Foundation grant process and apply, click HERE.

got Sarcoma? get Answers here…

 

You can purchase these bracelets from www.sarcomahelp.org

 

The Liddy Shriver Sarcoma Initiative is an amazing organization whose mission is to support people with sarcoma, a very rare cancer type.  (Candidly, until Alan was diagnosed with pleomorphic rhabdomyosarcoma in 2009, we had never even heard of the word “sarcoma” before.)

They have just published (electronically) A Guide for the Newly Diagnosed Sarcoma Patient.  And WOW… tons and tons of great information & resources.  This guide will help any sarcoma patient more easily navigate their cancer journey.

A couple of super important facts about sarcoma:

**  Sarcomas are a very dangerous cancer that affects the connective tissues, such as nerves, muscles, cartilage, bones, joints or blood vessels.  Sarcomas can arise anywhere in the body, frequently hidden deep in the limbs.

** Sarcomas make up only about 1% of total adult cancer diagnoses and 15% of pediatric diagnoses in the United States.

**  Often times, sarcomas are misdiagnosed (sometimes they are thought to be sports injuries).  Once they are diagnosed, they can be large and difficult to remove surgically.  It is imperative that you get a second opinion (fyi… The Sarcoma Alliance provides up to a $500 grant for financial assistance related to obtaining a 2nd opinion.) as well as work with a surgeon who specializes in sarcoma.

** Many sarcomas tend to be resistant current treatment options.

Also check out Liddy Shriver’s Resource Center.  You can search for sarcoma support based on your geographic location.  As always, knowledge is power… share the power… please pass this on to anyone you know affected by sarcoma.  

 

The Faces of Sarcoma

Alan just a few months before he was diagnosed with Pleomorphic Rhadbdomyosarcoma

 

My friend Jim always shares the BEST information with me… in fact, he regularly sends me info that I write about in CancerHAWK.  (Thank you Jim, you are amazing!) Jim also lost a dear friend to sarcoma which is what led him to co-found Champions Oncology (along with my very favorite doctor in the world, Dr. David Sidransky).

 

Today, Jim shared with me The Faces of Sarcoma, an amazing project led by the Liddy Shriver Sarcoma Initiative, an incredible resource for anyone touched by sarcoma. Sarcomas are so rare that most people have never even heard of them.  I know we hadn’t until that fateful day in 2009.

 

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

Sarcoma is a very rare type of cancer (comprising only 1% of all adult cancers & 15% of all childhood cancers) that arises from connective tissue and can develop in muscle, bone, fat or cartilage.  Sarcomas can arise anywhere in the body and are frequently hidden deep in limbs.  The Faces of Sarcoma is literally trying to put a human face to the disease… they are collecting photos of sarcoma patients, survivors & those who have lost their lives to sarcoma so the sarcoma story can be told in a more personal way. There are currently over 500 photos in the collection.  I just submitted a picture of Alan as well as info on our journey.  In time, they will make a video from these photos to complement an earlier video “A Forgotten Cancer” which was translated into 10 languages in 2009.

 

By increasing public awareness of sarcoma, raising funds to award research grants and providing support and timely info to sarcoma patients, their families & medical professionals, the Liddy Shriver Sarcoma Initiative and The Faces of Sarcoma hope to make a difference in the lives of anyone touched by sarcoma.

So if you know anyone who has been touched by sarcoma, send them this information…. Knowledge is power… Share the power!

Top 5 Reasons Why I LOVE Champions Oncology

 

During our cancer journey, we had a lot of ups & downs… and we were lucky to find medical professionals and organizations that supported us, cared about us, gave us hope and made the most horrific year of our life somewhat bearable… I’ve written about all these people and organizations throughout the CancerHawk blog.  But today, for post #101, I’d like to write about my all-time favorite group of people at Champions Oncology…. read below and you’ll see why I will forever be indebted to the doctors and people at Champions….(BTW, they work with YOUR oncologist to do all this.)

 

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. Champions Oncology works with your oncologist to create a personalized oncology solution to your specific cancer.  I really wish I had found Champions at the beginning of our journey!

 

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.  And oh by the way, the plan they came up is the only one that actually slowed the growth of Alan’s cancer.

 

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 on the mice.  And oh by the way, if a treatment works in the mice, it will absolutely work in your body. It’s like your own personal clinical trial. The challenge is they need fresh tumor. So ideally we would have given Alan’s tumor from his arm to them.  While the tumor was growing in the mice, Alan would have undergone the “standard protocol” but we would have had better information after that first regimen failed… which is why I wish I had known about Champions from the beginning.

 

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.

But check out this incredible success story and interview with Dr. David Sidransky of Champions OncologyCLICK HERE to listen.  Dr. Sidransky is AMAZING!!!! And I trusted him with my husband’s life… and I would trust him again in a heartbeat…  Thanks Dr. S! You’re THE BEST!

 

 

Makin’ Lemonade (my 100th post)

Kissed by a sealion in St. Thomas... sweet!

 

Today is July 12, 2011… and it’s the one year anniversary of the day I lost the love of my life, Alan Craig Stoller, 47 years young to cancer… to pleomorphic rhabdomyosarcoma to be exact.  And oddly enough, today is also the 100th post of CancerHawk.  Weird, right?!  I did not plan it this way.  In fact, it wasn’t until my daughter asked “Mom, how many posts have you written?” that I even started counting.  And it was also my daughter who said “Mom, you MUST do something special to celebrate 100.”  Talk about pressure!

So over the past few weeks, I’ve been thinking about what I should write on this very meaningful day… Do I reminisce about my incredible life with Alan? Do I write about all the GOOD things that happened since Alan was diagnosed for the second time with cancer? After all, Alan was the most optimistic, upbeat, glass in 1/2 full kinda person and he’d like that.  Or do I thank all the people who have helped me get through this insane and heartbreaking year because I have a lot of very special people to thank?  Or do I write a recap of all the AMAZING organizations and people that I’ve learned about so far who help people touched by cancer?  Heck, they are the reason why CancerHawk exists… I’m just a conduit to their information.

 

And then the answer came to me (courtesy of my friend Kim, twitter name @PutItAway)… Alan always said, When life gives you lemons, you make lemonade.”  And CancerHawk is my way of making lemonade with the lemons that have been thrown my way.

 

So without further ado…

Here’s an Alan-friendly, Robyn-approved recipe for delicious lemonade sweetened with stevia (since I personally believe that sugar feeds cancer cells). Every time I make it, I send a kiss up to heaven thanking Alan for making my life so sweet.  (My boys however send farts and kisses up to Alan… seriously, every time they pass gas, they send it up to Daddy to enjoy.)

The Best Lemonade Ever

Make sure you do not use the spoonable type of stevia, but the concentrated, liquid type. You can also use limes for a “limade” which is also very good.

1 cup of freshly juiced lemon juice (usually 4-6 lemons)

1/2 to 1 teaspoon of stevia (or more, to taste)

6 cups of water

Combine, adjust sweetness with stevia (start low and build up) chill and serve over ice, if desired. It’s as simple and easy as that!

(source: The Nourishing Gourmet)

And for an extra special kick, add tequila (my personal fav) or vodka…. delish!