Tag Archive for Champions Oncology

Personalizing Your Cancer Treatment (part 1)

Personalized-Medicine

 

I’ll never forget the heartbreaking moment when we heard Alan’s cancer was not cureable. In fact, my heart just skipped a few beats as I recall that day. One of my very favorite doctors (Dr. David Sidransky of Champions Oncology) told us not to give up hope. He explained that the oncology community was making great strides in turning cancer into a manageable disease rather than a death sentence. He said, New medical advancements that personalize cancer treatments are exploding.  The key is to be alive when the next breakthrough is discovered. So let’s figure out how to extend Alan’s life so that he has a shot of being here when that breakthrough happens.”

 

Fast forward to today-4 ½ years later- much progress has been made in personalizing cancer treatments.  Although still not considered mainstream, personalized medicine is absolutely changing how cancer drugs are developed and prescribed and how many cancer patients are treated.  Over the next few weeks, I will be writing a series of posts about breakthroughs and medical advancements that help doctors personalize cancer treatments such as molecular profiling, biomarker testing, immunotherapy, tumorgrafts and more.  If you read a post that resonates with you, share it with your doctor as you can help guide decision making when it comes to your own healthcare.  You are your own best advocate!

 

 

 

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.

Store My What??? STORE MY TUMOR, please….


  • FACT:  Two people with the exact same cancer diagnosis can and do respond differently to the exact same treatment regimens.  Each person is unique and so is their cancer.
  • FACT:  When you match the RIGHT targeted therapy or chemotherapy to the RIGHT tumor, tumors can shrink & hopefully the cancer goes into remission or at least remains stable.
  • FACT:  To potentially benefit from personalized or individualized treatment options, you need tissue from your specific tumor.  This tumor tissue can only be collected at the time of biopsy or surgery.

 

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

At the time of initial diagnosis, no one really knows whether their cancer will respond to what will be initially prescribed or if they may be forced to explore other treatment regimens later on.  Most cancer patients (and oncologists too for that matter) are not thinking about potential treatment options beyond the first line of therapy and candidly, many are unaware that they can make use of tumor tissue for personalizing treatment therapies.

 

Taking a personalized approach to treating cancer (using biomarker testing, genetic sequencing, molecular profiling, chemo & drug sensitivity testing, T-cell therapy, tumorgrafts, etc.) does not guarantee a successful outcome.  And these approaches may or may not change the first-line of therapy that a doctor prescribes.  Regardless, utilizing this approach can increase your number of treatment options as well as assist doctors in choosing the most effective treatment regimen for your particular cancer.

 

There’s a CAVEAT though…  To take advantage of these testing options and targeted cancer vaccines, (A) tumor tissue must be available or preserved and (B) if preserved, it must be done in the correct format type.

 

To preserve tumor and maximize the number of potential treatment & diagnostic options available, check out StoreMyTumor- they help collect & preserve or bank tumor tissue.  Here’s how it works:  The patient seeks this service before biopsy or surgery.  StoreMyTumor sends a special collections kit with detailed instructions for the surgeon.  Once the tumor is packed and the kit is received back, StoreMyTumor processes the tumor and preserves it.  Patients then instruct StoreMyTumor to send parts of the tumor to any destination of choice.

 

For more information on preserving tumor tissue, please contact StoreMyTumor directly.  I have not worked with them personally but I think the concept is amazing.  It’s kinda like an insurance policy… if you need it, you’re thankful you have it.  And remember, no one wants to have extra surgeries or biopsies- so please understand all of your options BEFORE having the initial biopsy or surgery.

 

For more information on what can be done with tumor tissue to individualize your cancer treatment, visit IsMyCancerDifferent.com, MyCancer.com & CancerItsPersonal.com.  For information on taking personalized cancer treatment to the next level with tumorgrafts, visit ChampionsOncology.com.

Personalized cancer treatments are changing the way we treat cancer… one patient at a time. Eventually, the individualized approach will become mainstream medicine and treating cancer based on body part (ie. breast cancer begins in the breast; lung cancer begins in the lungs, etc.) will be a thing of the past.  In the meantime, know ALL your options and advocate for yourself.

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.

 

 

 

8 Things To Do When Diagnosed With Cancer

 

 

Wrapping your head around the fact that you or a loved one has cancer is no easy task. Researching treatment options, interviewing doctors, scheduling appointments & additional surgeries, starting chemo & radiation… it all becomes an overwhelming blurr very quickly.  Dale Shepard, MD, PhD, of Cleveland Clinic’s Taussig Cancer Institute wrote an article “6 Things To Do When Diagnosed with Cancer” which offers tips on actions to take when you or a loved one is diagnosed with cancer.  I thought his advice was very helpful and pertinent whether you’re a newly diagnosed patient or in the midst of treatment.  I’m re-posting his article below.  I also took the liberty of adding on two more “tips” (#7 & #8 specifically) based on my own personal experience…

1. Get a second opinion

It’s important for you and your family to be comfortable with the physician, the choice of therapy, and the treatment facility. A second opinion can ensure that you are well informed as you start treatment and may prevent apprehension later about whether you received the proper care.

2. Ask questions

Your oncologist has treated hundreds of patients with cancer, but this is likely your first time with this diagnosis. Too often, patients don’t ask questions because they assume there are things they should already know or that their question will be answered later. Asking questions helps you get the information that is important to you and ensures the oncologist that you are informed about your disease and treatment. Everyone benefits from your questions.

3. Remember what you’ve heard

A diagnosis of cancer is overwhelming to most patients and details from the initial visits with the oncologist may be lost due to the volume of new or difficult to understand information. Bring a family member or friend to your appointments to help remember what was discussed. It’s a good idea to take notes or to ask your oncologist to record your appointment to review later.

4. Use the Internet responsibly

There may be a period of time between a biopsy showing cancer and an initial appointment with an oncologist to review the diagnosis and develop a treatment plan. Many patients are eager to learn more about their cancer and turn to the Internet. While this can be a good source of information if the proper sites are reviewed, blogs and message boards sometimes provide inaccurate information and lead to unnecessary anxiety.

5. Understand the goal of your cancer treatment

Treatment for cancer can be given to cure disease, to prevent disease recurrence or to minimize symptoms of disease and prolong survival. Too often, patients in clinic for a second opinion don’t understand what treatment was initially recommended or the goals of that therapy. They may have metastatic disease and incorrectly assume that chemotherapy is likely to cure them. Knowing the goals of therapy will allow you to understand more about your disease and treatment and can minimize future frustration.

6. Tell others about your cancer

Patients benefit from good social support as they go through treatment. You should tell your family and friends so they can help you in what can be a difficult time. Some patients don’t want to burden those around them, but this is a disease that affects them too. Don’t be afraid to reach out to others for help and support.

7. Talk to your doctor about molecular profiling.

Two people with the same cancer can and do respond differently to the exact same treatment regimens.  Why?  Because each person’s cancer is unique.  The oncology community has made great strides in identifying unique genes, proteins and other molecules (called cancer biomarkers) that can provide information about how your particular cancer functions and can be used to help identify potential treatment options. So talk to your doctor about getting your tumor tested.  Molecular profiling is an important new option for patients in several situations:

  • Standard or first-line treatment options aren’t working.
  • Your doctor is choosing between multiple recommended treatments.
  • Your cancer is particularly aggressive or rare or has limited treatment options for other reasons.

Visit MyCancer.com & IsMyCancerDifferent.com for more information on personalizing your cancer treatments.  Also check out ChampionsOncology.com,  they take molecular profiling two steps further by offering genetic sequencing and tumorgrafts.

8. If you don’t know where to turn for help, talk to an Oncology Navigator.

Oncology Navigators are skilled in helping cancer patients overcome obstacles to treatment (financial challenges, insurance & employment issues, managing daily life, evaluating treatment options, etc).  They work to help patients get the best care possible.  Where can you find an Oncology Navigator?  Well, some hospitals and private oncology practices have an Oncology Navigator on staff.  Another option is the LIVESTRONG Cancer Navigation Center, which provides one-on-one support to anyone touched by cancer, regardless of age or type of cancer.  The National Coalition of Oncology Nurse Navigators can also help connect you to a Navigator in your area.  Typically, oncology navigation services are FREE to the patient and can be very, very helpful in uncovering resources that you may not know about otherwise.  (like CancerHawk ;-) )

 

 

WTF is CancerHAWK?

Exactly one year and 210 posts ago today, I launched CancerHAWK.  (BTW today is also the 17 year anniversary of my first date with Alan, a day we always celebrated & treasured.)

 

WTF is CancerHAWK?  Well, according to one of my twitter followers and I quote… CancerHAWK is “Just the most kick-ass #cancer resource site to learn to advocate…be empowered…& survive!!!”  Thank you @Nodiaz21 for this wonderful tweet.  ;-)

 

Here’s the dealio (as my daughter always says)…  While battling my husband’s cancer, we met some of the most amazing people (and organizations) who helped us.  You see, Alan’s cancer was really rare and the chemotherapy wasn’t doing what it was “supposed” to do.  We had to fight our way through some unbearably rough times (understatement of the century) and think outside of the box- way, way outside the box.  We were fortunate to find out about an innovative approach and potential treatment option to Alan’s cancer (Top 5 Reason Why I LOVE Champions Oncology) and services like free private air transportation to return home after Alan had brain surgery (FREE Flights for Cancer Patients).  We were lucky to find the “right” assistance at the right time.

 

It’s a huge challenge to find these “right” resources.  I mean, how can you search for things that you don’t even know exist?  To help answer this question, I created CancerHAWK. Some resources I knew about during our journey; others I wish I had known about. My hope is to make anyone else’s cancer journey a tad bit easier by sharing this information.

 

Kudos and many thanks to ALL the amazing people who are helping cancer patients navigate their way through this journey.  If you know of a resource or a novel approach to treatment, please email at robyn@cancerhawk.com and I’ll write about it.

 

 

 

 


 

 

Helping to Identify the “Right” Cancer Treatment

If you’ve been reading CancerHAWK for a while, you know that I absolutely LOVE Champions Oncology.  I am forever indebted to them… they gave us more time with Alan.  When it comes to cancer, sometimes realism and optimism are oxymorons…. but for us, this was the definition of “hope”.  Watch this YouTube video that explains Champions’ innovative approach to predicting which cancer treatment may work best on a specific person’s cancer… after all, no two tumors are alike… just like no 2 people are alike…

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!

 

 

Cancer Genetics Redefine How Cancer is Treated

 

Not so long ago, if you had cancer, it was said that you had either blood cancer OR solid cancer.  Today, cancer is diagnosed according to where it is found on the body… breast cancer is initially found in the breast; lung cancer in the lungs; brain cancer in the brain; ovarian cancer in a woman’s ovaries; etc.

 

And in the near future (I hope), cancer will be diagnosed according to the genes found in the tumor itself.  And treatment will not be determined by cancer location, but rather by it’s genetic make up or by the gene mutations that exist within a tumor.

 

So for instance, “patients with skin cancer, colon cancer & thyroid cancer might be reclassified as “B-Raf mutation” patients and be treated with the same mutation-specific drugs.  Instead of receiving breast cancer-specific chemotherapy, a breast cancer patient might join those with ovarian, uterine & cervical cancer to receive drugs targeted at inhibiting the IK3CA mutation found in their tumors.”  This is personalized medicine… targeting treatments to a specific individual.

 

Sounds amazing, right?!  Yes, IT ISif your tumor has a known mutation. Unfortunately, not every tumor has an identifiable mutation.  And many tumors are made up of more than one mutation.  But isn’t it worth seeing if you are one of the “lucky” cancer patients (oxymoron I know) whose cancerous tumor has a mutation(s).  When you match the RIGHT targeted therapy or chemotherapy to the RIGHT tumor, magic occurs & the tumors shrink, die off & hopefully the cancer goes into remission.

 

It wasn’t until Alan & I started working with the MOST amazing group of doctors at Champions Oncology that we learned any of this.

 

So here’s my advice…PUSH your oncologist to get both genetic & biomarker profiles of your tumor BEFORE you start any treatment regimen.  Genetic Profiling generally identifies the specific genetic mutation(s) & Biomarker Testing includes molecular profiling.  It might give answers that would change the treatment regimen and improve your odds for success.  Assuming that getting the biopsy or tumor sample is feasible, isn’t more information is better than less?  (BTW, I could write an entire post on the “heated debate” I recently had with a doctor over doing these tests… maybe I should write “What is a Dr. Schmuck-part deux”?

 

THE BOTTOM LINE:  Get your tumor tested & work with an Oncologist that will use these results to find the BEST possible treatment for you.  (fyi… not all doctors will use the results from these tests so my advice is… Be you own advocate.  Do your own research.  Talk to your doctors.  Weigh the pros & cons. Make up your own mind.  And never, ever give up! 

 

 

BTW, 2 of the leading cancer centers, Massachusetts General Hospital & MD Anderson Cancer Center, are beginning to offer routine genetic profiling of tumors for every cancer patient.  What does that tell you?… What was once a novel approach to cancer treatment is becoming… albeit slowly… more mainstream.

 

 

(sources:  Lung Cancer In Never Smokers; ABC NEWS; Wall Street Journal/Major Shift in Cancer)