ASSG 2018 Sarcoma Research Grants

ASSG Research Grants 2018

ASSG have four grants on offer funded by generous donors, and are awarded for direct research costs. Selection criteria include track record and project feasibility, innovation and excellence. Please click on the links below for individual grant information.

The Johanna Sewell Sarcoma Research Grant
 $50,000 for one year

The Leon Stone Sarcoma Research Grant $20,000 for one year

The Xavier Krikori Sarcoma Research Grant $20,000 for one year

The Hannah’s Chance Sarcoma Research Grant $30,000 for one year

 

http://www.australiansarcomagroup.org/2018-sarcoma-research-grants.html

A sad goodbye to a beautiful, bright shining star…

March 12, 2018

 

 It is with profound sadness, we have learned of the passing of Gabriella Wehbe, a courageous, and inspiring young lady who staged a fearless and hard -fought battle with rhabdomyosarcoma. Gabby and Cooper were the same age, and were both treated by the outstanding sarcoma team at Chris O’Brien Lifehouse, and this is how they met.

As a family, we were in awe of Gabby’s strength, and humility and the grace in which she took life in her stride, making every moment count.  We will never forget the 15th November, 2016, at Sydney University Great Hall, when she and Cooper, despite their personal adversities, delivered speeches outlining their respective sarcoma journeys.  Together these bright shining lights, contributed to the outstanding amount raised that evening, of over $500,000, which benefitted the Comprehensive Sarcoma Centre at Chris O’Brien Lifehouse.

Gabby’s speech reminded the guests that night, that no matter how tough the day is, it is nothing in comparison to what young sarcoma patients face hourly, and most choose to simply get on with the job at hand.  Rarely a day passes when I do not recall Gabby’s or Cooper’s words from that evening, which are etched in my memory forever.

Suffice to say, Gabby would never quite know or understand the joy, the hope and the inspiration she brought to so many.  She will remain a beacon of light in our lives which are enriched as a result of the inspiration you provided so many

Our hearts tonight break for the Wehbe family, and we join with all of those whose lives Gabby touched in sending love, light and strength in abundance to her wonderful family.  We understand all too well, your unfathomable loss, and we vow to continue our work in fond memory of the bright shining stars, who have touched our lives forever.

 

Sarcoma does not have a face, until that face is someone you love…

March 3, 2018

“My dream is for urgent and much needed change to assist sarcoma patients globally. The inception of my Foundation was and is, for the purpose of instigating this change, and to use my significant sporting affiliations, and my passion for journalism to raise grass level awareness, thus stimulating critical funding.

Put simply, my role now is to be the face of the Cooper Rice-Brading Foundation, and the human face of sarcoma, and to ensure my story is told.  No matter how difficult my journey,  I need to convey to others the personal side of this diagnosis, and the need for the critical change required to significantly alter the trajectory for  sarcoma patients everywhere.”

(Cooper Rice-Brading – June 12, 2017.)

 

Friday the 26th February, 2016, marked a very dark day in our lives.  It was the day Cooper underwent a routine MRI to diagnose a suspected tear in his bicep, and after two hours wedged in an MRI machine, anxious, alone and bewildered at the time the process was taking, he was to eventually find his life had irreversibly changed.  A routine MRI had become what was to be a death sentence for our precious son and brother.

Osteosarcoma is an insidious cancer by any standards, and is now classed with other sarcomas, among those childhood/young adult cancers with the worst survival outcomes.  Despite this, it has by and large, been overlooked, and there is statistical evidence to suggest diagnoses are rising, with a  documented 40% increase from the previous decade. (Professor David Thomas, Director of The Kinghorn Cancer Centre and Head of the Cancer Division of the Garvan Institute in NSW.)

It is then perplexing to say the least, this cancer has not received the attention it so desperately needs, together with funding that has been missing from the Australian Government cancer budget.  Instead, philanthropy is responsible for the vast majority of  funding, and most often comes from the loved ones and their friends, of those children and young adults who have tragically lost their lives.

Sarcomas are part of the rare or less common cancer collective which are responsible for the deaths of 25,000 people per year in Australia.  These figures account for half of all cancer deaths, and many of these patients did not have access to treatment options simply because their cancers were rare.  Approximately one third of cancer diagnoses are rare or less common cancers, consequently a key recommendation of Rare Cancers Australia, is for a third of government research spending in cancer be directed to rare or less common cancers.  (Rare Cancers Australia, Rare Solutions A Time to Act 2017).

On average, seventeen life years per patient are lost due to sarcomas which is an impact three times greater than bowel, lung or breast cancer.  The cost to the community through the health system of bone and connective tissue tumours was $29,593 in 2003, (Professor David Thomas, Director of The Kinghorn Cancer Centre and Head of the Cancer Division of the Garvan Institute in NSW.), more than three times that of colorectal and breast cancer combined, and yet there has been no marked improvement in life expectancy, nor treatment options. Current figures are not available, and in all likelihood would show a marked upward trend since 2003.

The needless loss of life, the sheer emotional hell experienced by patients, and the lack of mainstream treatment options, which may accompany a sarcoma diagnosis, are no longer acceptable, and never were.

Cooper’s face, ‘the human face of sarcoma,’  in videos, photos, documentaries and interviews  is a constant reminder of  the work we continue to do in his absences, and why as his family, we continue to do it…

 

 

Making a lifetime of difference…

February 16, 2018

Imagine holding the same position for almost fifty years?  And then imagine that position is one of the toughest and most mentally taxing professional disciplines on offer?

Oncology Nurse Practitioner, Keith Cox OAM, or ‘Saint Keith’ as Coop used to refer to him as, is a truly unique and wonderful individual by anybody’s standards, and for 48 years, he has provided untold hope, professionalism and guidance, throughout a cancer journey, for those who are afraid, alone, uncertain, and everything in between.

 

Dr Richard Boyle (L)   Cooper Rice-Brading (Centre)   Keith Cox OAM (R)

Photograph courtesy – Chris O’Brien Lifehouse

 

Oncology is a mentally challenging, tough, and often thankless specialty, and it serves to make Keith’s 48 years of dedication to making the lives of cancer patients bearable, truly extraordinary.

For those of you wondering what an oncology nursing practitioner is, Keith’s position was a highly specialised midway point between a doctor and a nurse, and as such, for those cancer patients who have been blessed to be under his care, his role was a critical one.  It bridged the gap, and often for the patient, it was often the difference between a very good day and a very bad one.  The stories about Keith’s willingness to smooth the rough waters for those patients blessed to have been assigned to his care, are so numerous, they would require a sizeable book to record them.

Cooper, a child anxious about what lay ahead, masked in a grown man’s 6 foot 2 physique, met Keith on day one at Chris O’Brien Lifehouse, and developed an immediate connection with him, as all patients did.  This warm, calm, unassuming, gentle individual, remained with Coop throughout his treatment, and provided untold comfort during the particularly tough times, of which there were many.  He and Coop joked about many things, debated treatment options, together with ‘best practice’ (Coop was often caught turning his drip rate up to suit his sporting schedule), and everything in between.  Coop looked forward to the day when his treatment was over, and he could return as a volunteer for Keith, as he felt he had Keith’s role ‘covered’, and his contribution would be significant.  Life as we know it, rarely goes as we plan.

I can only now, imagine how with the passing of each patient Keith has opened his heart to, has resulted in the great personal sense of loss he must feel for each, yet we often overlook this impact when we are immersed in grief ourselves.  How difficult it must have been for him to face the families of the patients who do not make it out the other side?  His attachment to each was obvious – it was never a case of just another patient.  He has done this and so much more, for almost five decades, and has continuously found a way to make a difference in so many lives, and in so many different ways.

Asking Keith to join the CRBF Board, was a very easy decision.  He embodies every quality we envisage our Board members will have, together with an intimate knowledge of what is required to truly make a difference in the lives of sarcoma patients everywhere.  He was though, first and foremost, Coop’s great mate.

Keith, we wish you all the wonderful things life can bring now you are in retirement, and hopefully,  you can finally find time to reflect on your outstanding contribution to the world of cancer, and it may even see you contmeplating the notion of finally putting yourself first – every now and again…

Watch Keith’s story as told by Carrie Bickmore, on The Project.

https://tenplay.com.au/channel-ten/the-project/extra/season-9/healthcare-hero

Simply the best

January 31, 2018

In an age where “millennials” as they are now fondly known, receive their fair share of unfavourable press, due to their reported oblivion to the world outside their own, it is always a good day when you can share a story which turns the tide.

Baxter Holt, is a young man from The Kings School, Sydney, who has been on the fringe of our life for many years.  He and Cooper, had trialled side by side for representative cricket selection for many years, and had faced one another on the field on many occasions, throughout the Sydney GPS cricket competition.  Coop’s big brother Mitch had also played against Baxter in the GPS competition.

But it was not Baxter’s outstanding achievements on the cricket field that find me writing this blog today, it was his caring, thoughtfulness, and his unsolicited kindness.  Traits, which if you believe all that is written, are more often missing than not, in his generation.

Baxter took the time to write to Coop, when he was at his lowest ebb, after their school teams met on the field in the latter part of 2016. Cooper was struggling at this stage, as his cancer had metastasised to his right femur, and the pain of bowling was immense.  He was however, hell-bent, on ensuring no-one outside the family knew.  Baxter had no idea how serious Cooper’s condition was at the time, nor would he have known how much his words beautifully chosen words, meant to Coop, when he was so desperately in need of that random act of kindness.  I have attached the link to the article written by Peter FitzSimons in his column The Fitz Files, (SMH) in which he writes of the this particularly meaningful gesture.

http://www.smh.com.au/sport/the-fitz-files/fitz-20170303-gupzp5.html

When it came time to choose the very important roles of CRBF Ambassadors, it became clear Baxter would the perfect choice.  He embodies the unique spirit we envisage will be present in all we do in Cooper’s name, and the legacy he left behind.

Thank you Baxter for all you have done, and continue to do, for Cooper and his legacy.  Your kindness will never be forgotten.

When thank you really doesn’t seem enough…

January 30, 2018

When thank you really does not seem enough…

The CRBF Inaugural Birthday Big Bash was held on Monday 22nd January 2018 with resounding success.  It reminded me of a quote from Helen Keller, “Alone we can do so little, together we can do so much.”

On Monday, each person present played a critical role in heightening the awareness of sarcoma, the forgotten cancer.  Too many young lives each year are taken as a result.  The game was yet another step toward preserving Cooper’s legacy, and his long- held passion to fund the critical research required to make a difference.  This event was never designed to be a major fundraiser, but instead to allow many to have closure on what has been an unspeakably difficult five months, whilst participating in something they all hold a shared passion for.  On saying this we can announce today, we are over $5000 closer to finding a cure for sarcoma thanks to the generosity of our supporters on the day.

I will begin the formal thank you’s with a genuine apology to our guest, Australian Spin Bowler/Sixers star, Nathan Lyon.  In my very emotional state on the day, I very rudely overlooked publicly expressing our thanks to Nathan, who gave up his time to umpire the game, and to have photos taken with all who asked.  He was generous to a fault, and certainly did not deserve to be sidelined by my ageing memory, and my inability to remember very much these days.  He was not alone.  I also forgot to mention my husband Colin, the powerhouse behind the Foundation, and our son Mitch, who works tirelessly to instigate the change his brother so desperately wanted to see in his lifetime. Joining the illustrious list of the forgotten, was CRBF Communications manager, Luke Bennett, who works so very hard for the Foundation, at unusual hours, to ensure our social media and website is always taken care of.

We would like to thank the players who graciously gave up, what could have been a relaxing day at the beach, instead opting for a spirited cricket match in 32 degree heat. Without each of these special young men, there would not have been a game.  The result could have conceivably gone either way, however the CRBF 1st X1 took the inaugural “bat”, a trophy which is Cooper’s custom made Laver & Wood, pride and joy.  It now proudly bears a plaque with the Foundation name, and the name of the 2018 winning team, and we look forward to updating it on the 22nd of January each year, as this event becomes a permanent fixture.

The CRBF 1st X1

 Mitchell Rice-Brading (C)

Cameron McLean (VC)

Tom Sutcliffe

Isaac Crawford

Robin Evans

Will Yeaman

Stephen Salakas

Henry Munns

Lachie Swaney

Will Sutcliffe

Will Mallett

Sam Isherwood

Josh Craig

The CRBF All-Stars

Will Todd  (C)

Fionn Geraghty (VC)

Alex Powys

Tommy Arms

Tom Chichester

Darcy Cordell

Will Lawrance

Finn Lindstrom

Gus McGrath

James Mahony Brack

Max Patterson

Alex Powys

Tom Miller

Will Simpson

As an aside boys, the bar has been set very high for next year, as one of your team mates not only played, but arrived bearing a chocolate mud cake (Coops all- time favourite cake) which HE had baked earlier that day!  Joe Mackie you are a star! And you have begun a tradition which I for one, would like to see gain momentum.  The team managers, Luke Colbron, Alec Sheldon and Joshua Craig, also receive a special mention for their great work in warming up, hydrating the boys, and game strategies.  Thank you all.

The volunteers were the backbone of the day, with the Todd family, Robin, James, Tommy and Will, putting in a super human effort, which will take weeks to wear off.  Without the love, support and the drive of this family, the match would not have taken place.  Together with the Todd family, I would like to thank my ever supportive brother Grant who flew in from Melbourne for the day with Cooper’s very special cousin, Jemima, Coop’s grandfather, Robert Brading and Robin Salter who travelled from Canberra to assist, Sorabh Araya,(photographer), Julie Hanley, Lucy, Jack, Jane and Phil Baker, Sue Geraghty, Amanda Digby, Nancy Bennett, Alison Craig, Fiona Beith, Ross McLean, (scorer), Peter Salakas, Susan & Ross Bateman, Alan Campbell (ground prep), Luke Bennett, Hal Lindstrom (umpire) Annie Goodwin, Charlotte Smith, and Dan (bar) Jeremy Sutcliffe, (scorer) Graham and Lisa Nicols, (gate and barbecue) Louise Glen, and Martin Rossleigh,(gate).  These outstanding individuals worked so very hard to make the day a success, and words simply do not seem enough to express our gratitude.

The success of an event such as this, with such a small lead in of ten days, is reliant upon the attendees.  To this end, a huge thank you to each of you, for participating in whatever capacity.  Without your attendance, it would have still been a great cricket match, but without the atmosphere, and the love and support the 200 strong crowd, provided for the players, for one another, and for the Foundation bearing Cooper’s name.

Finally, the team at CRBF would like to take this opportunity to express gratitude to our event partners, Ties and Cuffs, The wonderful staff at Lake Cooper Wines, together with their superb wines, Easts Dolphins Cricket Club, Driver Avenue Group, Costume Box, Albion Sports Protection & Team-wear.

A truly outstanding Australian…

January 27, 2018

Every now and again, you will meet someone quite by chance, and they will have a huge impact on your day, and sometimes, your life.  This was the case with Gail O’Brien, AO.

I remember a chance meeting very early in Cooper’s treatment, not long after Cooper became intent on raising money for sarcoma awareness and research, and to contribute as much as possible toward the inception of the Comprehensive Sarcoma Centre, within the world class facility that is Chris O’Brien Lifehouse.  I had no idea at the time this would prove to be life changing.

I entered the room, and met this demure, quietly spoken, yet exceptionally warm lady, who I soon felt I had known for decades.  Her day I suspected, was full, as Gail is in high demand within the confines of Lifehouse, and yet she had quite unexpectedly put aside time to meet with me to discuss ideas for Cooper’s Foundation launch.  It is important to point out that fundraising is not officially one of the many hats Gail wears within the auspices of the hospital, and yet there she was, providing her complete and undivided attention, and offering untold co-operation and guidance.  I left that meeting with a sense of calm, which I had not felt in some time.  Not only did she offer assistance with the function, Gail causally offered her time for a chat if I felt overwhelmed over the time ahead.  Cooper’s diagnosis had left our family reeling, and I often felt I was living in a bubble, and very disconnected from the outside world, so to have someone who truly understood that feeling, provided an unexpected peace of mind.

Gail forged a lovely, and very significant friendship with Cooper, whom she would pop in to visit, when she knew he was an inpatient, and in turn, Coop developed a strong fondness and admiration for her.  She was one of the few people outside his medical staff, he allowed to see him as his cancer progressed.   When his inaugural dinner was imminent, he insisted I arrange to have her address his guests, as in his words, “Gail really gets it mum…”  That was sadly the case.  Gail had not only suffered the heartbreak of losing her beloved husband, but had also suffered the unimaginable loss of her eldest son Adam, two years after.

Despite her own enormous adversities, the grace in which Gail continues to make a difference in the lives of cancer patients, is something to behold.  She is humble, yet strong, and is, put very simply, a force of nature.  For the better part, she flies under the radar, and does not seek notoriety for the work she does – she just does what needs to be done.  She has more energy than anyone I know.  I have often received emails from her very late at night, when I know she has been working at the hospital all day, and beyond.  She has time for everyone, and has perfected the fine art of listening.  The formal list of achievements which led to her receiving this award, I suspect do not even touch the surface of the things she does for others in need, outside her capacity at Lifehouse.

Gail, we could not be happier to hear of your award – Officer of the Order of Australia.  I know this is not what you aspire to, but from the outside looking in, it is so heartening to see those presiding over these awards, absolutely got it right this year.  Cooper would have been as delighted as we are to see this acknowledgement of the decades of work you have dedicated to cancer patients, together with your beautiful smile, and your lovely manner.  The world needs more people just like you…

Immunotherapy Offers New Strategy for Treating Sarcoma

Enlarged microscopic image of blue-green immune cells surrounding one blue cancer cell.

Summary

Soft tissue sarcoma, a diverse group of cancers that arise in the body’s connective tissue, is difficult to treat after it has spread. MSK clinicians are investigating the use of immunotherapy to treat this disease. The main approaches involve checkpoint inhibitors and adoptive T cell therapy, which have shown effectiveness against several other cancers. A few clinical trials have already started at MSK and many more are planned to open soon.

Update: This story was originally published on July 28, 2016, and has been updated with new information.

Immunotherapy, which harnesses the power of the immune system to fight disease, has recently shown impressive results in the treatment of multiple cancers. The Food and Drug Administration’s approval of a class of drugs called checkpoint inhibitors has dramatically improved therapeutic options. People with melanomalung cancerkidney cancerbladder cancerleukemia, and other cancers may benefit from these drugs.

Researchers at Memorial Sloan Kettering are hoping that this immunotherapy success can be applied to the treatment of sarcomas as well. These rare cancers grow in the body’s connective tissues, including fat, blood vessels, nerves, bones, muscles, and cartilage.

We spoke with MSK medical oncologist Sandra P. D’Angelo about the current state of research, including which clinical trials at MSK are under way or planned to open soon.

Why use immunotherapy as a treatment for sarcoma?

Sarcoma is a devastating disease for which we need more-effective therapies. Sarcoma has more than 50 distinct subtypes, and the threat of metastasis can be high. Depending on the type of sarcoma and its initial size, the disease can spread in some patients who are diagnosed. Men and women whose cancer has spread to other parts of the body often respond to treatment but the duration of benefit can sometimes be short and the side effects can sometimes be tough.

With conventional treatments such as chemotherapy, or even newer targeted therapies, we try to treat the tumor. But it will likely prove difficult to develop a single therapy that would work across all of the sarcoma subtypes. Each of these diseases may behave differently and require distinct treatment approaches.

Immunotherapy is an appealing option because it’s designed to empower the immune system to fight many different types of cancer, not just one. My colleague Jedd Wolchok and I worked on immunotherapy treatment for melanoma. He takes the view that it’s often better to treat the person and let their own body treat the tumor.

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What types of immunotherapy are now being investigated for sarcoma?

The main approaches involve checkpoint inhibitors and adoptive T cell therapy. Checkpoint inhibitors are drugs that block specific proteins on the surface of immune T cells. This releases a natural brake on the immune system, allowing it to attack the cancer. Adoptive T cell therapy involves removing T cells from patients and modifying the cells in a way that enables them to recognize and attack specific molecules on the surface of cancer cells. MSK has led the way in using both of these approaches to treat cancer.

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How is checkpoint inhibitor–based immunotherapy being tested against sarcoma at MSK?

The checkpoint inhibitors we are investigating include the drugs ipilimumab (Yervoy®), nivolumab (Opdivo®), and pembrolizumab (Keytruda®), which we’ve already seen be effective in multiple cancers.

Ipilimumab targets a protein called CTLA-4. In earlier clinical studies, it seemed to have a very minimal effect when used alone against selected sarcomas. The latter drug, nivolumab, targets a different protein, called PD-1. We were struck by the deep and rapid responses in people with melanoma when ipilimumab was combined with nivolumab. We think combination immunotherapy will benefit more people with sarcoma. Much of our efforts are focused on identifying the best drugs to combine for patients.

I led a national phase II clinical trial testing the combination of these drugs in people with metastatic sarcoma. We found that nivolumab and ipilimumab are effective in certain sarcoma subtypes. These include undifferentiated pleomorphic sarcoma and myxofibrosarcoma (both types of liposarcoma) as well as leiomyosarcoma, and angiosarcoma. The tumor responses appeared to be similar to those seen with standard chemotherapy. In addition, the combination of these two drugs was found to be very safe and tolerable. The findings were published in January 2018 in the journal Lancet Oncology. They support future studies of this drug combination for people with specific metastatic subtypes. We are continuing to focus on identifying sarcoma biomarkers that allow us to predict who will respond well to this type of immunotherapy.

Sarcoma expert Ping Chi meets with research technician Makhzuna Khudoynazarova
Soft Tissue Sarcoma Clinical Trials and Research
Our doctors and researchers are constantly seeking new and improved treatments for head and neck cancer through our program of clinical trials.

Learn more

We’re also exploring therapies that combine checkpoint inhibitors with new drugs that boost the immune response in other ways. For example, there is an ongoing effort combining nivolumab with NKTR-214. This drug is a modified form of a protein called interleukin-2, which is made by the immune system. NKTR-214 is designed to trigger other cells in the immune system to attack cancer cells. The goal is to see if this combination will increase the likelihood of an immune response for metastatic or locally advanced sarcoma.

In addition, there’s an upcoming study combining pembrolizumab with a drug called epacadostat that will be conducted in collaboration with medical oncologist Ciara Kelly. Tumors often can produce an enzyme called IDO1 to avoid the immune system. Epacadostat blocks this enzyme to help the immune system hit the tumor with its full force.

Most recently, in collaboration with Dr. Kelly, we conducted a clinical trial utilizing TVEC, an attenuated herpes virus injected directly into the sarcoma tumor, in combination with pembrolizumab. This trial just completed patient accrual, and we are currently analyzing the results.

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What about the use of adoptive T cell therapy for sarcoma?

We have been collaborating with a company to engineer T cells to fight synovial sarcoma. This type of sarcoma has a specific protein called NY-ESO-1 that is not on other cells. Because of that we are able to target the cancer cells selectively. The treatment is being tested in a pilot study at MSK. The trial involves removing T cells from a person with synovial sarcoma, engineering the cells to recognize the NY-ESO-1 protein, and then giving them back to the person in large numbers.

As of November 2017, 37 patients have received these modified T cells in multiple groups with variations to the treatment approach. Overall, the response rate has been promising. There are ongoing efforts to optimize this treatment approach and determine the best strategy moving forward. We are now in the process of leading a similar effort for people with myxoid liposarcoma. Their tumors also express NY-ESO-1. This trial is actively enrolling patients.

Beyond this specific approach, we are working with MSK investigator Michel Sadelain on a type of adoptive T cell therapy called chimeric antigen receptor (CAR) T cell therapy. CAR T has demonstrated remarkable results in people with chemotherapy-resistant leukemia. We are trying to develop CAR T cells that will target a protein that’s on the surface of many sarcomas. That’s a big project that we’ve been working on for several years. We hope to launch a clinical trial testing this approach in the near future.

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What is the biggest challenge for using immunotherapy against sarcoma?

The major hurdle is identifying the right strategies for specific subtypes. It’s difficult to know what will work in a particular sarcoma. The cells all look different under a microscope and have different mutations. There are ongoing efforts to identify sarcoma biomarkers that can help us predict whether a therapy will be effective.

The important point is that there is great potential and hope for immunotherapy to have some effectiveness against sarcoma. Both checkpoint inhibitors and CAR T cell therapy have demonstrated success in other cancer types. We hope to continue to figure out ways to extend this benefit to people with sarcoma.

 

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Comments

 

Is there any clinical trial to test immunotheraphy in patients with leiomyosarcoma metastatic?

 

Eduardo, thank you for reaching out. Memorial Sloan Kettering does not currently have any clinical trials testing immunotherapy for leiomyosarcoma. However, you can read a recent story about the latest research on this form of sarcoma here:

https://www.mskcc.org/blog/what-s-new-leiomyosarcoma

These are the clinical trials for leiomyosarcoma that are ongoing at MSK:

https://www.mskcc.org/cancer-care/clinical-trials/search?keys=leiomyosa…

There is also one trial listed on the government’s website (clinicaltrials.gov):

https://clinicaltrials.gov/ct2/results?term=leiomyosarcoma+immunotherap…

If you or a loved one would like to make an appointment at MSK for a consultation, please call our Physician Referral Service at
800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment

 

I joined a nivolumab clinical trial in the fall of 2014 and was on it for 1 full year. The end result was that tracked tumors decreased by close to 50%. I was off treatment for 8 months then when the cancer began to grow again (slowly) I was put back on treatment and am responding once again. I owe my life to MSK and their immunotherapy clinical trials. So grateful.

 

Dear Luis, we are glad to know that you have felt well-cared for by your MSK team and that your cancer is responding to treatment with immunotherapy. Thank you for sharing your kind words on our blog. We wish you all our best!

 

I am so encouraged that this double checkpoint inhibitor trial for sarcoma patients is finally starting! 8 years ago, I was diagnosed synovial sarcoma. Even though I had 2 recurrences and metastatic disease, I went through great lengths to harness my immune system against cancer (NY-ESO-1 peptide vaccine, dendritic vaccine, NK cell vaccine, Coley’s Toxins, cryoablation). I am a biology researcher, and the science convinced me that the immune system is capable of curing cancer. I have been cancer-free for the past 3 years. I am so thankful that immunotherapy treatments, such as this trial, are readily available to sarcoma patients now. I hope sarcoma patients will take advantage of this incredible treatment opportunity and emerge cancer-free.

 

Metastatic chordoma of the spine… are there any somewhat promising treatments or trials coming down the pipeline outside of what’s already been established as first, second, line treatments for this disease? The CAR T cell therapy sounds exciting. Thanks for what MSKCC and it’s team are working toward.

 

 

Hello,

Firstly thank you for your research into such a terrible illness, it fills us with confidence that you are exploring alternative therapies which is not typical chemotherapy.

My partner who is just 25 was diagnosed with Renal Dedifferentied Liposarcoma 9 months ago and under went a full nephrectomy. She was not offered any other treatment after this.

Yesterday she was suddenly in severe abdominal pain and was taken into hospital. After a range of CT scans the doctors confirmed two more growths near where the kidney was removed, nearer the colon. They have also confirmed the presence of 7 lumps in the lungs.

We are planning on having the abdominal masses removed straight away but for obvious reasons we want to try all we can to fight the lung growths.

Immunotherapy is something which we have hope in and was wondering if there is any suitable trials or treatments you can offer there to give us a chance of beating this.

We currently live in Singapore but are more than happy to travel there if you have any suggestions or input.

Once again thank you, and really do hope you can help us in this time of need.

Kind Regards,

Danny

 

Danny, thank you for reaching out. We are sorry to hear about your partner’s situation.

If she would like to speak to someone about coming to Memorial Sloan Kettering for a consultation or possible clinical trial (or sending her records for review), I encourage her to contact our International Center by calling 1­ 212­-639­-4900 or going to https://www.mskcc.org/experience/become-patient/international-patients. The email address is international@mskcc.org.

 

Have you treated anyone with fibromyxoid sarcoma or know of any trials for that specific sarcoma?

 

 

It is hopeful and promising to see that there are a variety of treatment options offered at MSK. My father just learned that he has sarcoma, but it is has still not been determined which specific kind. How quickly can one typically get an appointment with a specialist at MSK?

Thanks,
Alanna

 

Dear Alanna, we are sorry to hear about your father’s diagnosis. If you are interested in making an appointment for him to see one of our specialists, please call our Physician Referral Service at 800-525-2225. Wait times vary and depend on a number of factors, including how long it takes to get his relevant medical records sent to us, but our staff there can answer your questions as to when the first available appointment would be. Thank you for reaching out to us.

 

Thank you to MSK for doing this fantastic research to find a cure for such a horrific and rare form of cancer. My mother is currently battling late stage, aggressive Synovial Sarcoma, and I was wondering if there are any trials she could become involved in, or whom I could contact to register her for future opportunities? Thank you.

 

 

I was diagnosed with leiomyosarcoma in October 2014. The tumor is totally enclosed in the inferior vena cava. I have been on 3 different types of cancer. Gemzar reduced the tumor in half during the first 1-3 ‘drips” but the tumor then stabilized and I took a break (per doctors’ orders). When next checked 2 months later tumor was growing again. Back on Gemzar but tumor continued to grow until original size. New chemo is keeping it at bay right now. My name is on list for clinical trial at MD Anderson.

Any advice, reactions, suggestions?

 

Dear Ann, we are sorry to hear about your diagnosis. You may be interested in reading a recent blog post we published on what’s new in this area of research: https://www.mskcc.org/blog/what-s-new-leiomyosarcoma. We also offer clinical trials for people with leiomyosarcoma, which are listed here: https://www.mskcc.org/cancer-care/types/uterine-sarcoma/clinical-trials.

If you have any questions about these studies or would like to make an appointment with one of our specialists for a consultation about possible next steps in your care, please call our Physician Referral Service at 800-525-2225. Thanks for reaching out to us.

 

My father was diagnosed with leiomyosarcoma (LMS) about 7 years ago and had surgery to remove slow growing tumors. However, about 2 years ago, the disease has metastasized and he is not responding to any conventional treatment or the new chemo that was recently approved. Are there any trials that have proven successful? We are out of state – do you have partnerships with hospitals in Chicago?

 

Dear Julie, we are sorry to hear about your father’s diagnosis.

Unfortunately, we don’t have any alliances with hospitals in Chicago, but if you are interested in finding a local comprehensive cancer center to see if they offer a trial that’s appropriate for your dad, you may search for one on the National Cancer Institute’s website: https://www.cancer.gov/research/nci-role/cancer-centers/find. Robert H. Lurie Comprehensive Cancer Center at Northwestern University and The University of Chicago Comprehensive Cancer Center are both listed as comprehensive cancer centers.

You might also look for clinical trials in your area on this national database maintained by the National Institutes of Health: www.clinicaltrials.gov.

In case you are interested, MSK does have a couple of open trials evaluating new treatments for people with leiomyosarcoma, which can be found here: https://www.mskcc.org/cancer-care/clinical-trials/search?keys=leiomyosa…. If you have any questions about these studies or would like to make an appointment with one of our specialists to discuss possible next steps in your father’s care, please call our Physician Referral Service at 800-525-2225.

Thank you for reaching out to us.

 

Condrosarcoma at Cervical spine c2, C3——-Underwent anterior and posterior surgeries and Radiation in 2013. Now there is a recurrence. Neurosurgeons and oncologists said that it is not possible to remove entire tumor since it is very close to Spinal cord. If it is removed partially, it will grow soon. Finally, I request that is there any solution to my problem.

 

Dear Uma, we are sorry to hear about your recurrence. If you would like to make an appointment with one of our specialists to discuss possible next steps in your care, please call our Physician Referral Service at 800-525-2225. Thank you for reaching out to us.

 

I recently finished my second occurrence of Pulmonary Artery Angiosarcoma. Chemo saved my life twice but I am nervous for another recurrence and was wondering if there are any trials for a maintenance program? If not, do you think immunotherapy might be an option if I get the disease again? I’d love to know there was something out there for me to try God forbid chemo doesn’t work. When it came back the second time it was in my lungs. I am healthy now but worry for my future.
Thank you!
Debra

 

Dear Debra, we are sorry to hear about your health issues and are glad to know you are doing well. Fear of recurrence and uncertainty about the future is a common issue for many cancer survivors. You may find it helpful to read one of our previous blog posts that offers some helpful advice in coping with that fear: https://www.mskcc.org/blog/six-tips-managing-fear-recurrence.

If you do experience a recurrence in the future and would like to make an appointment with one of our specialists to discuss possible treatment options, including clinical trials, please call our Physician Referral Service at 800-525-2225. Thank you for reaching out to us.

 

My son has synovial sarcoma that has NY-ESO-1 in 100 percent of his tumor. Do you know of any new immunotherapies that will target NY-ESO-1?

 

Dear Deborah, we are sorry to hear about your son’s diagnosis. We are actively investigating the use of adoptive T cell therapy for sarcoma. In fact, we are collaborating with a company to engineer T cells to specifically fight synovial sarcoma. Because synovial sarcoma has a specific protein called NY-ESO-1 that is not on other cells, we are able to target the cancer cells selectively. To learn more about our work in this area, please read one of our recent blog posts on this topic: https://www.mskcc.org/blog/immunotherapy-offers-new-strategy-treating-s….

If you are interested in making an appointment at MSK to discuss possible treatment options, including relevant clinical trials, for your son, please call our Physician Referral Service at 800-525-2225. Thank you for reaching out to us.

 

This is Uma Maheshwara Rao from India. I am suffering from conventional condrosarcoma grade 2 at C spine C2 & C3. I under went 2 surgeries followed by Radiation treatment in 2013. Now there is a recurrence. For which again I underwent surgery, the tumor is not removed completely. Stil I have severe pain from neck to shoulders. Now doctors there is no option for surgery and radiation. Is there immunotherapy for me. Please help me.
Thanks & Regards

 

Hi Uma, immunotherapy for sarcoma is still experimental and it’s too early to know which patients it will benefit. You may want to ask your doctor in India about clinical trials, or go to www.clinicaltrials.gov to find out if there are any research studies that you may be able to participate in. Thank you for your comment, and best wishes to you.

 

Hello! My spouse has been fighting non-differentiated high grade sarcoma for the last two years. It appears to have started in her IVC and has metastasized in her lungs. Traditional therapies have had mixed results. Are there any clinical trials that she might be eligible for at SK?

 

Hi Bryan, we’re sorry to hear your spouse is going through this. If you’d like to talk to an expert at MSK about the clinical trials that may be right for her, you can call 800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment for more information on making an appointment. Thank you for your comment, and best wishes to you.

 

In August of 2016, my 56 year old mother was diagnosed with an undifferentiated soft tissue sarcoma. October 27th, she had the 17 cm mass removed from her upper left leg. We recently were informed that the cancer metastasized to her lungs. She has no comorbidities and prior to her diagnosis she was very active and healthy. I am wondering what clinical trials may be currently available for her.

Thank you!

 

Stephanie, we’re sorry to hear about your mother’s diagnosis. If she would like to learn about clinical trials at MSK, she can call 800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment for more information on making an appointment to discuss her options. If your mother is not in the NYC area and not able to travel, you can go to www.clinicaltrials.gov to look for trials at other hospitals that may be more convenient for your family. Thank you for your comment, and best wishes to you.

 

My friend was dxd with stage iv endometrial adenosarcoma with sarcomatous overgrowth. Is there any targeted immunotherapy that she could try? She is being followed at MGH in Boston.

 

 

Do you have any trials for immunotherapy in Angio sarcomas?

 

Hi Stephanie, we do have trials looking at the use of immunotherapy for patients with a number of different kinds of sarcoma. If you would like to learn more, you can call 800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment for more information on making an appointment. Thank you for your comment.

 

Hi my 13 yo daughter with autism has been diagnosed with osteosarcoma stage I , no mets.
I would like her to do immunotherapy first prior to chemotherapy. Do you have studies for this . She has a distal femur fracture as the result of the osteosarcoma. Please get back to me asap.
Many thanks Dr. Siddiqui NJ

 

Dear Asma, we’re sorry to hear about your daughter’s diagnosis. If you would like to consult with a doctor at MSK about your daughter’s treatment, you can call 800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment for more information on making an appointment. Thank you for your comment.

 

I appreciate the hard work you do keeping up with these blog comments. A loved one has sarcoma and has been trying to reach a clinical trial doctor through the published contact information with no success. Is there any direct way to do so?

 

Dear Daniel, we’re sorry to hear your loved one has had a hard time getting through. If he or she is not already an MSK patient the best way to reach our doctors is through our Physician Referral Service. You can reach them at 800-525-2225. Thank you for your comment, and best wishes to you.

 

My mother received radiation and then surgical removal/resectioned for a roast size liposarcoma tumor in her retroperitoneal cavity four years ago. it has returned in the same area. She has received 4 Xweek long chemo treatments and awaiting a PET scan. Very healthy otherwise. Is there a immunotherapy program she should be asking about ? thank you for the work you do.

 

Dear Melissa, we’re very sorry to hear about your mother’s recurrence. It’s possible that she may be able to participate in a clinical trial involving immunotherapy or perhaps instead a targeted therapy. This is something you should discuss with her doctor. If she is interested in coming to MSK for a consultation, you can call 800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment for more information on making an appointment. Thank you for your comment, and best wishes to you.

 

Any benefits seen in high-grade Undifferentiated Small Round Cell Sarcoma with CIC translocation?

 

These therapies are still being evaluated in clinical trials, and it is too early to know which types of sarcoma they will be most effective against. If you are interested in participating in one of these trials, you can call 800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment for more information on making an appointment. Thank you for your comment.

 

My wife has high grade spindle cell sarcoma tumour(more than 10 cm) in left lung and now metastased to right lung.As per doctors here surgery won’t help as it metastased.Pl indicate if immunotherapy will work for my wife and can I take treatment in India through MSK or what is the option available for treatment

 

Dear Mahesh, we’re sorry to hear about your wife’s diagnosis. Immunotherapy is still in the early stages of being tested for sarcoma, and it’s too early to know which types it may be effective against. If your wife is interested in coming to MSK as an international patient, you can contact our International Center at international@mskcc.org or go to https://www.mskcc.org/experience/become-patient/international-patients for more information. Thank you for your comment, and best wishes to you and your family.

 

I was diagnosed in july 2015 with a dedifferentiated retroperitoneal liposarcoma and had a recurrence in nov 2016. I lost already my spleen, left kidney, tail of pancreas, piece of colon and diafragma. Are there clinical trials with immunotherapy for my tumor I am from Belgium in Europe

 

Dear Alice, we’re sorry to hear about your diagnosis. We recommend that you to go www.clinicaltrials.gov to look for trials in Belgium. This database maintained by the US National Institutes of Health includes trials from all over the world. You could also ask your current doctor about referring you to a trial. Thank you for your comment, and best wishes to you.

 

Hello I was wondering if you have any trials going on for PNet or Ewing’s Sarcoma Family soft tissue tumor, my 20 year old daughter was diagnosed with

 

Dear Laurie, we’re sorry to hear about your daughter’s diagnosis. We do have trials. If you would like to make an appointment for her to have a consultation with one of our expert, you can call 800-525-2225 or go to https://www.mskcc.org/experience/become-patient/appointment for more information. Thank you for your comment, and best wishes to you and your family.

 

hi.my sister is 37 years old. she was operated at MSKCC in 2014 nov for synovial sarcoma of right shoulder after neoadjuvant radiation. she had a local recurrence now in may 2017, a 7cm lesion which surfaced suddenly and grew rapidly to 7cm size. she has undergone excision with wide margins in india this time.She has never taken chemo and doesnt want to go for it. are there any immunotherapy options for preventing recurrence in this case.

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Summary

Soft tissue sarcoma, a diverse group of cancers that arise in the body’s connective tissue, is difficult to treat after it has spread. MSK clinicians are investigating the use of immunotherapy to treat this disease. The main approaches involve checkpoint inhibitors and adoptive T cell therapy, which have shown effectiveness against several other cancers. A few clinical trials have already started at MSK and many more are planned to open soon.

Update: This story was originally published on July 28, 2016, and has been updated with new information.

Immunotherapy, which harnesses the power of the immune system to fight disease, has recently shown impressive results in the treatment of multiple cancers. The Food and Drug Administration’s approval of a class of drugs called checkpoint inhibitors has dramatically improved therapeutic options. People with melanomalung cancerkidney cancerbladder cancerleukemia, and other cancers may benefit from these drugs.

Researchers at Memorial Sloan Kettering are hoping that this immunotherapy success can be applied to the treatment of sarcomas as well. These rare cancers grow in the body’s connective tissues, including fat, blood vessels, nerves, bones, muscles, and cartilage.

We spoke with MSK medical oncologist Sandra P. D’Angelo about the current state of research, including which clinical trials at MSK are under way or planned to open soon.

Why use immunotherapy as a treatment for sarcoma?

Sarcoma is a devastating disease for which we need more-effective therapies. Sarcoma has more than 50 distinct subtypes, and the threat of metastasis can be high. Depending on the type of sarcoma and its initial size, the disease can spread in some patients who are diagnosed. Men and women whose cancer has spread to other parts of the body often respond to treatment but the duration of benefit can sometimes be short and the side effects can sometimes be tough.

With conventional treatments such as chemotherapy, or even newer targeted therapies, we try to treat the tumor. But it will likely prove difficult to develop a single therapy that would work across all of the sarcoma subtypes. Each of these diseases may behave differently and require distinct treatment approaches.

Immunotherapy is an appealing option because it’s designed to empower the immune system to fight many different types of cancer, not just one. My colleague Jedd Wolchok and I worked on immunotherapy treatment for melanoma. He takes the view that it’s often better to treat the person and let their own body treat the tumor.

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What types of immunotherapy are now being investigated for sarcoma?

The main approaches involve checkpoint inhibitors and adoptive T cell therapy. Checkpoint inhibitors are drugs that block specific proteins on the surface of immune T cells. This releases a natural brake on the immune system, allowing it to attack the cancer. Adoptive T cell therapy involves removing T cells from patients and modifying the cells in a way that enables them to recognize and attack specific molecules on the surface of cancer cells. MSK has led the way in using both of these approaches to treat cancer.

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How is checkpoint inhibitor–based immunotherapy being tested against sarcoma at MSK?

The checkpoint inhibitors we are investigating include the drugs ipilimumab (Yervoy®), nivolumab (Opdivo®), and pembrolizumab (Keytruda®), which we’ve already seen be effective in multiple cancers.

Ipilimumab targets a protein called CTLA-4. In earlier clinical studies, it seemed to have a very minimal effect when used alone against selected sarcomas. The latter drug, nivolumab, targets a different protein, called PD-1. We were struck by the deep and rapid responses in people with melanoma when ipilimumab was combined with nivolumab. We think combination immunotherapy will benefit more people with sarcoma. Much of our efforts are focused on identifying the best drugs to combine for patients.

I led a national phase II clinical trial testing the combination of these drugs in people with metastatic sarcoma. We found that nivolumab and ipilimumab are effective in certain sarcoma subtypes. These include undifferentiated pleomorphic sarcoma and myxofibrosarcoma (both types of liposarcoma) as well as leiomyosarcoma, and angiosarcoma. The tumor responses appeared to be similar to those seen with standard chemotherapy. In addition, the combination of these two drugs was found to be very safe and tolerable. The findings were published in January 2018 in the journal Lancet Oncology. They support future studies of this drug combination for people with specific metastatic subtypes. We are continuing to focus on identifying sarcoma biomarkers that allow us to predict who will respond well to this type of immunotherapy.

Sarcoma expert Ping Chi meets with research technician Makhzuna Khudoynazarova
Soft Tissue Sarcoma Clinical Trials and Research
Our doctors and researchers are constantly seeking new and improved treatments for head and neck cancer through our program of clinical trials.

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We’re also exploring therapies that combine checkpoint inhibitors with new drugs that boost the immune response in other ways. For example, there is an ongoing effort combining nivolumab with NKTR-214. This drug is a modified form of a protein called interleukin-2, which is made by the immune system. NKTR-214 is designed to trigger other cells in the immune system to attack cancer cells. The goal is to see if this combination will increase the likelihood of an immune response for metastatic or locally advanced sarcoma.

In addition, there’s an upcoming study combining pembrolizumab with a drug called epacadostat that will be conducted in collaboration with medical oncologist Ciara Kelly. Tumors often can produce an enzyme called IDO1 to avoid the immune system. Epacadostat blocks this enzyme to help the immune system hit the tumor with its full force.

Most recently, in collaboration with Dr. Kelly, we conducted a clinical trial utilizing TVEC, an attenuated herpes virus injected directly into the sarcoma tumor, in combination with pembrolizumab. This trial just completed patient accrual, and we are currently analyzing the results.

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What about the use of adoptive T cell therapy for sarcoma?

We have been collaborating with a company to engineer T cells to fight synovial sarcoma. This type of sarcoma has a specific protein called NY-ESO-1 that is not on other cells. Because of that we are able to target the cancer cells selectively. The treatment is being tested in a pilot study at MSK. The trial involves removing T cells from a person with synovial sarcoma, engineering the cells to recognize the NY-ESO-1 protein, and then giving them back to the person in large numbers.

As of November 2017, 37 patients have received these modified T cells in multiple groups with variations to the treatment approach. Overall, the response rate has been promising. There are ongoing efforts to optimize this treatment approach and determine the best strategy moving forward. We are now in the process of leading a similar effort for people with myxoid liposarcoma. Their tumors also express NY-ESO-1. This trial is actively enrolling patients.

Beyond this specific approach, we are working with MSK investigator Michel Sadelain on a type of adoptive T cell therapy called chimeric antigen receptor (CAR) T cell therapy. CAR T has demonstrated remarkable results in people with chemotherapy-resistant leukemia. We are trying to develop CAR T cells that will target a protein that’s on the surface of many sarcomas. That’s a big project that we’ve been working on for several years. We hope to launch a clinical trial testing this approach in the near future.

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What is the biggest challenge for using immunotherapy against sarcoma?

The major hurdle is identifying the right strategies for specific subtypes. It’s difficult to know what will work in a particular sarcoma. The cells all look different under a microscope and have different mutations. There are ongoing efforts to identify sarcoma biomarkers that can help us predict whether a therapy will be effective.

The important point is that there is great potential and hope for immunotherapy to have some effectiveness against sarcoma. Both checkpoint inhibitors and CAR T cell therapy have demonstrated success in other cancer types. We hope to continue to figure out ways to extend this benefit to people with sarcoma.