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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We welcome your questions and comments. While we share many of them with our world-class doctors and researchers, we regret that in order to protect your privacy, we are not able to make personal medical recommendations on this forum, nor do we publish comments that contain your personal information. If you would like to consult with an MSK doctor, we encourage you to make an appointment at 800-525-2225 or request an appointment online.

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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.

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.

 

Happy Birthday precious boy…

 

January 21, 2018

Tania Rice-Brading & Colin Brading

Waking up this morning, 22 January, 2018, is reminiscent of Christmas morning last year.  There is that overriding air of something special that requires celebration, combined with that aching pit in our stomachs that will not go away.

Every parent wants to mark their child’s birthday each year with something special, irrespective of age, or even when they aren’t physically with you.  The idea of a celebration today however, is far removed from each of our thoughts.

I guess it is the day we have all been dreading for the past five months, and yet here it is, and as with each of the milestones to date, we will attempt to all put our best foot forward, and make the most of it.

Without Cooper, our family exists in a highly- altered state.  We appreciate what we have, and we truly appreciate those around us, but his absence is, and I suspect, always will be , such an overriding force in our lives. For eighteen years, his larger than life presence, beautiful smile, wicked sense of humour, willingness to debate anything and everything, his innocence, and his humility, has blessed our lives, and the void he has left defies words.

There is so very much to miss about our precious son and brother, but we are not alone.  So many feel his absence in so many different ways.  I hear the comment so often, that he used to make others laugh – usually at someone else’s expense, and how much that is missed amongst sporting teams, school friends alike. I was usually the butt of his jokes at home, so I understand this.   Loyalty  to his friends was also a big part of who he was.  He would never let a friend down. As his family, we miss his courage, bravery, and determination in the face of adversity, and we miss his dominating physical presence in our lives, despite it being very different for each of us.  When you lose someone you love, you lose the physical essence of who they were, and it is something that can never be replaced.

The Foundation that proudly bears Cooper’s name will today, celebrate several milestones without him.  He would have been so touched to see the CRBF 1st X1 play the CRBF All Stars at Trumper Park, an oval where he spent the majority of the last decade playing AFL for East Sydney Bulldogs.  After all, sport was his life.

 The  ABC 7.30 Report last week showcased Coops Foundation, and the last twelve months of his life, a piece lovingly compiled by journalist Lesley Robinson, which has been a work in progress for the past year. We announce today that Cooper’s long held hope of CRBF operating as a registered charity, is one step closer, with our application to the ACNC – the final step in registration. We will continue to  support our long held partnerships with Chris O’Brien Lifehouse, and the Australian Cancer Research Fund, whilst diversifying with some funding directly to pipeline projects through our most recent partner, the Australian Sarcoma Group.

So today we all join in Cooper’s long held dream of making the world a better place for those young people facing this unspeakably difficult journey-   one step at a time, one determined foot in front of the other…

Never be in any doubt as to how much we truly appreciate your love and support throughout this unspeakably difficult journey.

 

Two sides to every story…

January 20, 2018

How many of us witnessed the beaming smile on Nick Kyrgios face last night when Hollywood A-lister, Will Smith acknowledged him with a thumbs- up for being “cool”?   The crowd were on their feet celebrating his win over Jo Wilfred Tsonga, his childhood idol, and it was a truly lovely moment for a young man who has been judged quite harshly, over past years.  Wonderful, but largely buried memories came flooding back to me about an encounter Cooper had with Nick Krygios four years ago.

We have for the past decade, gravitated to Melbourne during the Australian Open, and have taken in many games over that time.  It was Father/Son time for Colin, Mitch and Cooper. Unbeknown to us, The Grand Hyatt Melbourne which is our home away from home in Melbourne, is also home away from home to some of the world’s most prominent names in tennis, and the hotel is under siege in January of each year with familiar faces from the tennis world.   I remember the excitement after Coop took the elevator with Jo Wilfred Tsonga in 2012, who took the time to say ‘hi’, accompanied by a disarmingly warm smile.  At the time he was ranked no.5 in the world.

But this story is not about the personable Jo Wilfred.  It began with Coop and Colin having an impromptu game basketball at the hotel.  They hadn’t bothered to book the court, and took their chances.  After half an hour of exhaustive competition, they were approached by a young man with a very familiar face, asking if they would like to join he, and his friends for a game of basketball, as it turned out – he actually did have the court booked.  Colin, noticed a familiarity in this very friendly, exceedingly polite and uber fit young man.  For Coop, the penny dropped immediately.  This was the highly talented and often misunderstood, Bernard Tomic, and amongst his “friends” was the very young Nick Kyrgios.  For over half an hour, (because that’s all Colin could manage…) they engaged in a spirited, fun and very friendly match up, or as Colin put it – “They took it easy on us”…

Both Nick and Bernard have been surrounded in controversy over past years, and each time the media portrays the pair in an unfavourable light, we often think of that day in 2013, the chance meeting with the two young men, and the sheer joy and excitement it brought to Coop’s life, and may I add, to Colin’s also.  Coop was not visibly unwell at the time, and was highly competitive, and he was never going to allow Nick Kyrgios and Bernard Tomic clean the floor with him on the basketball court.  The two young men embraced him so warmly – despite the fact it was them who had booked the court for them and their friends.

We all dabble in duplicity from time to time, and I use this word in its meaning of “being double”.  We often have one persona that is not necessarily the one that is seen by the outside world. We know from first-hand experience with Cooper during his illness, what you see is not always what you get…He was a master in the art of masking how ill he truly was to the outside world.  There is most often, two sides to everyone.  It is hard to know how often these boys engage in these random acts of kindness, but I suspect a little more often than we might think – without cameras, and without media to record it.

Last night Nick Kyrgios posted on Instagram, “Tonight was special.  You will always be someone I look up to @Tsongaofficiel. Was an absolute pleasure to play out there today”… With a little tweaking here and there – it could easily have been posted by Coop.  There are always going to be times in your life when no matter who you are, and how good you are at what you do, you will find yourself in awe of another.  For Coop, it was that 30 minutes on the basketball court with what would turn out years later, to be two of Australia’s most promising tennis prospects and their entourage.  Over the years, he never waned in his support of either despite the tumultuous media representation.

Next time the media take a swipe at Nick Kyrgios or indeed Bernard Tomic, I would ask you to remember this story, and remember the huge heart, and generosity of spirit, they both showed our precious boy, and his dad, and the wonderful memory they created in the process.

The team at CRBF would like to extend our congratulations to Nick for a great game last night, and we cannot wait to see him take out his first Australian Open, on January 28, 2018.  Bernard, we hope you are back again next year!

 

Using your currency wisely…

January 6, 2018

Using your currency wisely…

December, 2004, saw two cricket obsessed five and eight year olds, transfixed to the television, watching Australia’s Glenn McGrath, tear through the Pakistan batting line up in Perth, finishing with a career best 8/24 off sixteen overs.  For those of you who know nothing of cricket, an eight- wicket haul is something every bowler dreams of, but rarely achieves, much less at Test level.  It is akin to winning, the Melbourne Cup, the Sydney to Hobart or the Australian open.  It takes huge talent, courage, an enormous heart, and a touch of mongrel to do so.

During commercial breaks, there would be the mimicking of each wicket taken, in our lounge, and my incessant nagging about taking the game outside.  Coop would practice his “air bowling” and after careful analysis, adopting every finite move of the cricketer he idolised.  The moment the game was over, it would be straight to the nets, to practice with a tennis ball. His brother, a willing and very able participant with the bat, and an accomplished leg spin bowler.

The boys would spend hours honing their self- taught techniques, while Coop continued to mimic Glenn Mcgrath, and Mitch, Shane Warne, to the point where a number of Masters in his first year at Sydney Grammar, who did not know him by any other name than Warnie.  The boys would find any excuse to play in our back garden, the laneway, or the nets at the local school, wherever there was a space – the bat and ball would emerge. Coop was annoyed he was deemed too young for a team at six, but eventually burst onto the scene playing local club cricket aged eight.  This had given him two years to analyse and mimic the bowling style of his idol, and he embraced the challenge.

Coop’s first game caused one of the cricket tragic dads on the sidelines, whilst watching Coop deliver his first few balls, to remark…”I think we have just discovered our next McGrath”…  Possibly the highest order of compliment to Coop at the time.  Needless to say, after a succession coaches had moulded his style in later years, his likeness to his hero changed dramatically, but for a brief moment in time, he dared to dream.

Fast forward four years, and Cooper had been given the unexpected honour to captain the Scots College prep 1st X1.  His first fixture resulted in the revelation his idol had returned to the game, only this time as a school cricket dad. The ensuing nerves when he was around, proved to be problematic for Coop. Glenn would not have even noticed the uncharacteristically nervous young boy, as he treated all the boys in the same understated manner, and seemed to understand the impetus he had on each.

Last year, when Coop was struggling with the side effects and the endless disappointments attached to his treatment, he quite unexpectedly received an email from Cricket Australia, and attached were two videos, one from Glenn, and the other from Steve Waugh. Cooper had trialled at representative and state level with Steve’s son Austin who has gone on to become a force to be reckoned with as a national u19’s cricketer. I am certain neither dad would remember the gesture, nor had they remembered Coop, yet both had taken the time to record a special message for him, a message that would elicit joy at one of his lowest points. This gesture was completely unsolicited, and put simply, a very pure gesture by both, and one that brought a smile to Coop’s face when reasons to smiles were few and far between.

I have learned so much from my son over the past years – we all did.   We learned from his ever present humility and the grace during times of extreme adversity, and we learned from the way in which chose to help others by the inception of his Foundation, especially when his work would be unlikely to change his trajectory in any way. Cooper chose to use his currency wisely.  He chose to rise above the feelings of uncertainty, angst and fear, which went hand in hand with his cancer, and attempted instead, to make his very brief life count.  In doing so, he unwittingly began to once more, follow in the steps of his cricket idol.  Glenn and his equally impressive family, have used their currency wisely for many years, having risen above the grief, the adversity and the tough times, and have made the world a better place for those walking the path of the inspirational Jane Mcgrath.

As our family is left to contemplate life each day without our precious son and brother, together with the void his absence has left in our lives, it is always good to look at those, such as the Mcgrath family, and what they have managed to achieved for the greater good, rising above all else.

  Congratulations on your ten-year anniversary today. The team at CRBF are greatly inspired by your work, and your success.  We aspire to significantly improve the lives of young sarcoma patients over the next ten years, as you have done for those suffering from breast cancer.

 Photo courtesy of  The Telegraph

Truly appreciating the moment

December 25, 2017

25 December, 2017 seemed to be a perfect forum to put pen to paper, and to share what I have been secretly dreading for months – facing the reality of waking on Christmas morning without one member of our very small, but close knit family. Not because he is exploring the world, or at his new partner’s home for the Festive Season, but because medical science failed to find the answer to one particularly rare, and aggressive cancer.

Waking this morning, was like no other Christmas morning as the magic had disappeared. Despite the boys this year being 18 and 21, Colin and I had always attempted to provide an element of childhood magic, for every Christmas. With each passing year, this attempt ran the risk of falling horribly flat. Stockings full of random filler gifts which were deemed to be underwhelming, the forced expressions of appreciation, the odd humorous aside to one another after opening these gifts, family breakfast, and then the fun really began. The onslaught of sheer madness that came with the quest for that perfect day. I was always hell-bent on overseeing the perfect Christmas Day, while ensuring some Christmas magic along the way.

Today, it is difficult to say how I truly feel. I have not known the answer to this question for four long months, and I’m almost too afraid to explore it. What I do know is today for Mitch and Colin, must feel special as it has done for the past 21 years. I do however, think the usual mayhem might serve to ease some of the pain. So, today I must put my best foot forward, as Coop did for almost two years, whilst facing his own adversities. He taught me so very much about humility and grace.

For the three of us left behind in the wake of Cooper’s recent passing, nothing will ever be the same. We navigate life daily in a heavily altered state, and there exists an unspoken daily balance, to ensure no-one in our inner sanctum is left feeling second best, disenfranchised or alone. This is the first Christmas Day without our precious brother and son, so this is unchartered territory. It simply does not feel in any way right, and my aching suspicion is, it never will.

When you lose a child, your world changes irreversibly, as it does when your little brother is no longer by your side. Things that were once important, are no longer. Christmas has always been a challenge for me, since both my mother and father passed away on either side, and I harboured an internal sadness which I fought hard to ensure was never evident to my family nor to the outside world. To compensate for this, I, like so many others, strived for the perfect Christmas day for those around me. With the benefit of hindsight, all who choose this path, set themselves up to fail. I am the first to admit, I am no Martha Stewart, nor am I particularly good at choosing “the right gift”, to add to this, my skills at decorating are severely lacking, but that didn’t stop me from trying. With each passing year came the challenge of doing better than the year before.

I look back on those Christmas days and marvel at the degree of mayhem one mother can cause, in the quest for the perfect day. I suspect however, I was, and am not alone. I have few regrets in my life, but right at a time when my world as I knew it has changed forever, I so, so wish I had just enjoyed the moment more, and ceased driving my family to distraction with the perfect menu, the perfect gifts, and the perfect table decoration. At the end of the day, as Cooper would always say, “nobody cares”, and after a few glasses of Christmas bubbly, nor do they remember.

I have selfishly chosen not put up a Christmas tree this year. Previous years, have seen the boys, admittedly under duress, choosing a colour scheme for our tree, and it would be decorated on December 1 as a family. The expectation was for everyone to clear their diary for our family tradition, and one I so looked forward to. December 1 came and went this year, and yet it somehow just didn’t seem right to do what we have enjoyed as a family for 21 years. Apart from fairy lights on the balcony, there is not a hint of Christmas in our home, because the idea of December even remotely being, as Andy Williams so aptly put into song, “The most wonderful time of the year… “ is so far removed from the place we find ourselves this year, and I suspect, each year hereafter. I have a pile of unopened Christmas cards in a drawer which I cannot bring myself to read, and the selfishness of this act is not lost on me, as I know each person who has taken the time to send these, did so with the purest of intentions. I do know however, there will be cards in that pile from those who do not know Cooper is no longer with us, and confronting those well- meaning words at Christmas is far too painful.

This year, there will be the three of us for Christmas Day in Melbourne, which is the way we want it if Coop cannot be with us. We have sensibly opted to work with disadvantaged members of our community, where no one knows us, and we can channel our grief into something more positive, whilst being together. Perfection will not be something I am personally seeking this year, but just maybe, some peace of mind will come in the form of helping others less fortunate, through this impossibly lonely time of the year. The meaning of joy is now something which for the greater part eludes me, but what I do know is, it is always associated with my family, helping someone who is in need, being with close friends, and very little else.

Cooper is forever present in our memory, and I speak for the three of us when I say he is in our thoughts from the moment we wake, to the moment our heads touch the pillow, and Christmas Day will be no different. He is and always will be, that larger than life part of our lives, that will never fade. My guess is however, for a great number of you reading this, you may also feel his absence in your own way.

I am so very grateful I have Mitch and Colin by my side today, as so many people are forced to negotiate these life -altering tragedies solo. I am acutely aware of the fact so many family and friends this year, have also walked the road, Colin, Mitch and I find ourselves traveling. My nephew was tragically taken from us in an accident earlier this year. He was only four years older than Cooper. Colin’s mother passed away suddenly weeks prior to Cooper’s passing. We understand all too well the pain associated with this time of the year, when you are desperately missing someone you love. So today our extended family unite with others in the commonality and brutal acknowledgement of that empty seat at the dinner table.

This Christmas day, I would urge you to make a stand to push back from the festive season madness and get back to basics. Put down the turkey baster, and take a moment to look up from the Donna Hay Christmas recipe book. Yes, your university aged kids look like they have spent the night in a wheelie bin, but hey, they are there with you, stop readjusting the table decorations…they are just fine. Take time out to stand back and savour the moment with a glass of whatever takes your fancy, and learn from my mistakes. The family you see before you is perfection, in whatever form it takes, and it is not until one of those you see before you is no longer there, that you will truly understand the gravity of the moment.

I would like to thank you from the bottom of our hearts for the outpouring of love and support you have provided our family over past years and months, and I can assure you, your generosity of spirit has not gone unnoticed, and for each of us, has made a world of difference. These individual gestures have provided us with great comfort in knowing we do not walk this unspeakably difficult road alone.