Tag Archive for sarcoma

Hope In A Mouse Kept Us Afloat

 

Science Magazine

 

 

 

 

 

 

 

 

 

 

 

I am truly honored to have been interviewed by Jennifer Couzin-Frankel of Science Magazine for the article she wrote on using animal models to guide patient care as this is where my family’s battle with cancer led us.  You can read Jennifer’s  article “Hope In A Mouse” by clicking here.  Thank you Jennifer for including my perspective in this amazing, well-balanced and informative article.  

 

A little more info on our experience….

When I look back on my family’s war with cancer, I believe that “hope” kept us afloat.  

We tried everything possible to gain control over the cancer that was ravaging my husband’s body, but nothing was working.  We were under the care of top doctors in sarcoma (that is after we fired our first oncologist); we followed the advice of a nutritionist who specialized in working with oncology patients (as a result, my husband Alan had never looked better and his body became strong enough to withstand the massive amounts of toxic therapies he received); we even worked with a spiritual healer (what can I say, we were desperate).

 

Come November 2009, we were left with no options… and no hope.  It was pure luck (and one amazing Uncle) that led us to Champions Oncology.  Champions offered us the ability to implant Alan’s cancer into immunodeficient mice (mice with no immune system); test any drug or treatment regimen in these mice; and if we were lucky enough to find something that killed off Alan’s cancer in the mice, there was a really good chance it would do the same in Alan’s body.

 

Although we knew the odds of success were not in our favor, the ability to test different therapies against Alan’s tumors in mice using the Champions TumorGraft gave us hope. Hope gave us the strength to get out of bed each day and enjoy whatever time our family had left together.

 

Although we did not find a cure for Alan’s cancer or anything to substantially slow down its growth, we know that we tried everything possible to beat this diagnosis.  I sleep at night knowing that we left no stone unturned.

 

My family’s battle with cancer led me to create CancerHawk.  My mission is to connect cancer patients and caregivers to groups and resources they never knew existed or even thought to seek out- groups like Champions Oncology for instance.  Knowledge is hope.  And hope is everything.

 

Read the article Hope In A Mouse” in this week’s Science Magazine and let us know what you think…  Would you want access to an experimental approach to guide your treatment even if it’s not yet 100% proven?  Or would you prefer that researchers keep it locked up until it is?

 

 

 

 

 

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.

Personalizing YOUR Cancer Treatment: Questions to Ask Your Oncologist (part 3):

Molecular profiling to identify cancer biomarkers has the potential to identify new treatment options for your cancer. As with any treatment selection, you and your Oncologist need to work together to determine what will work best for your particular situation.  Below are questions you can ask your Oncologist to begin the conversation on personalizing your cancer treatment:  

MyCancer.com – Questions to Ask Your Doctor

What Does It Mean to Personalize Your Cancer Treatment? (part 2)

 

FACT:  Over the past 40+ years, oncologists have taken a “one size fits all” approach to treating cancer.  The only efforts at personalization have been to tailor specific chemotherapies to the original location of the cancer. 

 

FACT:  We know that two people with the same cancer diagnosis often times respond differently to the exact same treatments.  Researchers have found that the genetic differences in people and their tumors explain many of these different responses to treatment.

 

FACT:  Because each person’s cancer is unique, finding the right treatment can be difficult.

 

FACT:  You may have heard the terms “targeted therapy”, “personalized therapy” or “precision therapy”.  These are simply different terms for individualizing cancer treatments.  Regardless of what you call it, personalizing your cancer treatment will require some form of advanced genetic and molecular tumor analysis (called molecular profiling). 

 

FACT:  Molecular profiling searches for unique genes, proteins and molecules (called cancer biomarkers) that provide information about how your particular cancer functions.  This information can help identify potential treatments to guide doctors on which medications are likely to work best for a specific person’s cancer. 

 

To learn more about molecular profiling, cancer biomarkers and personalized treatment, check out these 2 fantastic sites:

MyCancer.Com

Is My Cancer Different?  

 

To speak with a Patient Navigator about molecular profiling, please e-mail PatientNavigator@carisls.com.  This is a FREE service provided by Caris Life Sciences.  

 

 

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.

 

 

 

Two Drugs Shrink Tumors in Ewing’s Sarcoma Patients

Photo Credit: Zazzle

 

By combining these targeted therapies- cixutumumab and temsirolimus- researchers at MD Anderson have been able to shrink tumors in some patients with Ewing’s sarcoma.

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

17 Ewing’s sarcoma patients, who prior to this trial had been unsuccessfully treated with other agents (on average 6 different treatment regimens), were tested.  In 5 of these patients, tumors were shrunk by more than 20%.  The treatment responses have lasted 8 to 27 months.  The most common treatment-related side effects were reduced platelet levels, mucositis, elevated cholesterol, high triglyceride and elevated blood sugar.

For more information, see the MD Anderson.