Sarcoma included in new Aus data …

Cancer Australia has released initial National Data on Australian paediatric cancer stages at diagnosis, including the rare and aggressive Sarcoma cancers.

This data covers sixteen major cancer types, which represent approximately three-quarters of all childhood cancers diagnosed in Australia. To see more please see ASSG’s press release or visit

https://childrenscancer.canceraustralia.gov.au/stage-diagnosis-data

Amazing people doing amazing things….


Heide Middleton and Sarah Jane Clarke are not only the founders of the highly successful Australian fashion label Sass and Bide, they have also lent their highly credible names to improving survival outcomes for sarcoma patients, with their fundraising and awareness initiatives.

It was while Heidi Middleton was staging her own battle with breast cancer, that her friend Kate Boyson was also staging a valiant battle with a Ewings Sarcoma diagnosis. Ewings Sarcoma is a highly aggressive and rare form of primary bone cancer.

Kate passed away in October of 2007, five months after her diagnosis, leaving behind her husband Marcus who now chairs Rainbows for Kate, the Foundation that proudly her name.  Kate and Marcus also had two young children.  Heidi was understandably devastated by the tragic and unnecessary loss of her friend at the age of 32.

Sass and Bide presented a tribute to Kate at New York Fashion Week, 2008, titled ‘Rainbows for Kate’ . This collection was inspired by a bracelet Heidi made for Kate, which contained coloured beads representative of different emotions, which today forms the basis of the Foundation logo. When addressing those at the Sass and Bide show, Heidi’s poignant words remain a strong reminder of all the qualities she admired and missed in her beautiful friend Kate Boyson.

My beautiful friend, tonight we celebrate your incredible spirit… your unbelievable courage, your shining heart…your ‘light any room’ smile…you burst into my life like a beautiful rainbow…” 

This story is a powerful reminder that sarcoma, like most cancer, does not discriminate.  It can affect all ages, despite disproportionately affecting young people.  Kate’s story, put simply, is heartbreaking.

Kate’s story also serves to remind us of the strength of the human spirit.  Her husband Marcus, their children, and her dear friend Heidi Middleton, all worked through their  unspeakable grief, to help spare others from traveling the same road.

The highly successful Rainbows For Kate, (RFK) funds ‘critical research that will bring hope, time and more treatment options to those diagnosed with Sarcoma cancers.’

RFK has contributed more than a million dollars to sarcoma research, and last Saturday night marked their ten -year milestone at The Swifts, Darling Point.  We are in awe of what this Foundation has achieved over a decade, for sarcoma research, and ‘grass roots’ awareness, and their outstanding resilience.

Please go to the website www.rainbowsforkate.com.au to donate or press the link below

 

http://www.rainbowsforkate.com.au/donations.html

The unstoppable Imogen Atkins…

Imogen Atkins is an extraordinary young lady by any standard.   Imogen’s sarcoma diagnosis was made at the tender age of  15.  Her life was immediately turned upside down, undergoing a rigorous treatment regime  including major surgery,  but she like many other sarcoma patients, has chosen not to allow this cancer to define her life.

Prior to her diagnosis and the subsequent commencement of her treatment Imogen had the most beautiful long hair, which most teenagers (and adults) would envy. Knowing she would lose her hair throughout chemotherapy, she instead had it cut, and donated it to ‘Hair with a Heart, raising in excess of $27,000 in the process.  Her magnificent hair was then used to make wigs for patients with medical conditions causing alopecia, and many patients benefitted from her huge heart, and enormous generosity of spirit, when she was going through so very much herself at the time. Her capacity to think of others at such a young age is truly remarkable.

Imogen, now days away from her 17th birthday, defies the cancer she has battled, by resuming the sporting activities she loves, and selflessly helps others through her work with the Queensland Youth Cancer Service.

Imogen continues to embrace life to the fullest, and is a constant reminder to those around her how to rise above adversity and find meaning in your life, despite the hurdles that may come your way.  She is wise beyond her linear years, and we extend our heartfelt thanks to her, for sharing part two of her journey.

We cannot wait to see where life takes this inspirational young woman.

Imogen Atkins – in her own words…

 
After going through 8 months of chemo, it is amazing to be able to be back doing more normal things.  I still face regular check ups, and ongoing rehabilitation, but in no way have , or will I, let that stop me from trying to do and achieve what I really want.

Let’s start with school.  At the moment I am halfway through my final year and on track to get a good OP. even though many people encouraged be to , a) repeat year 11, and b) to go down the path of getting a Rank instead. I have experienced a lot of times when I really had to push for what I wanted, and I’ve learned that if I know I can achieve something, I should push and achieve it.

Prior to the cancer, I was a very avid rower.  It was truly heartbreaking and difficult when I was told I might not be able to row again, but being the persistent and slightly stubborn person I am, I refused to take that as a never.  As soon as i was able to, I worked at regaining my strength and bend in my knee.  So now I train several times a week, I am part of a crew, and it is amazing to be back on the water.  Despite the cold mornings of training, being on the water is one of the most important things to me, and brings me so much joy.

I have also found out that I like having a voice.  I am now part of the Queensland Youth Cancer Advisory Group.  In this group I, and several others, advise Queensland Youth Cancer Service on health service planning, delivery, evaluation education and training, together with developing spaces and facilities for young patients and their families.  We talk and discuss with people who are looking to improve their services.  I am basically a voice trying to make another young person’s cancer journey or experience, just that little bit better, and a little bit easier.  I feel this is really good and important.

After my cancer experience, I realised that I have to step into life, find ways of doing things, and never give up on my dreams.  I can no longer ski, so I’m learning to snowboard.  Recently I sat on a panel of people at a medical conference. I travelled to London and Finland with my family, and this month I’m going to be bridesmaid at my sister’s wedding.  I am about as happy as i can be having gone through a year of cancer...

Elliott Miller. In the words of his mother…


To mark global sarcoma month, CRBF will be conducting a series of interviews, and publishing tributes to patients and loved ones affected by sarcoma, in an effort to portray the human side of this insidious cancer.

I met Henrietta Miller late last year, after she took the time to reach out to me, when I was in the depths of despair after Cooper’s passing.

Henrietta is a gentle and quietly spoken woman, with a huge capacity to give to others.   I was pleased I had accepted her invitation to visit, as she is one of the few people who can say they deeply understand the myriad of emotions, and the never ending wall of grief you experience after the loss of a child.

Henrietta’s son Elliott had tragically passed away prior to Cooper, and was treated within the confines of Chris O’Brien Lifehouse as Cooper was, and treated by many of the medical team who had also treated Cooper.  It was indeed not lost on me our commonality was borne through deep seated tragedy, and at times throughout our conversation, and through the tears, I found myself wondering why it was we were brought together by circumstances that really should never be?  Our boys were bright shining lights at the very beginning of the wonderful lives ahead of them.

I will never forget Henrietta’s serene manner, and the selflessness, and kindness she showed our family, by reaching out to us at a time when we were at our lowest ebb.  It must have been very difficult to do so, knowing that it would undoubtedly open wounds of the past, yet this amazing woman put her own emotions aside to help others.

Today we celebrate the essence of Elliott Miller, in Henrietta’s words…

 

 

Elliott John Miller 27/12/94 – 01/03/16

 

Elliott was a second year arts student at Sydney University majoring in performance studies. His was a fairly typical lifestyle for such a student, many late nights with the occasional burst of essay writing to just about keep things on track. Taking every opportunity to perform, he spent the better part of 2014 concurrently rehearsing at least five shows and dedicated 2015 to his burgeoning career as a director. The only complaint anyone could ever make about Elliott was really a complaint about a lack of hours in the day in which to gain an audience with him.

In August 2015, Elliott had been complaining of a sore jaw when he ate, but trips to his dentist and x-rays had not shown anything untoward. In mid September though, a specialist dentist finally ordered an MRI scan which revealed a tumour. Following a biopsy his initial cancer diagnosis was Ewings Sarcoma, but this was later changed to an embryonic Rabdomyosarcoma; an incredibly rare form of childhood cancer, one that only affects about seven adults a year worldwide.

In October 2015, with all our lives inextricably changed forever, Elliott began chemotherapy  and radiotherapy at the Chris O’Brien Lifehouse, under the care of Professor Tattersall. Unfortunately, despite everyone’s best medical efforts, nothing could halt his tumour rapidly spreading from his jaw to his lungs where it continued to grow.

Elliott died on 1 March 2016, a little over four months after his diagnosis. He was 21 and on the cusp of an incredible future. Elliott performed right to the end, and never lost his sense of humour or the ability to saunter onto any stage, own it and make people laugh. Whether as a stand-up improv comedian, actor or director, Elliott never failed to impress.

He and his enormous potential are deeply missed by all his family and his extraordinary number of friends.

July – Global Sarcoma Awareness Month


Yesterday marked the first day of global sarcoma awareness month.  A month where we  take the time to remember and to honour the memory of those who have needlessly lost their lives to this cancer;  provide unconditional love and support to those you may know going through gruelling treatment regimes; and to provide hope for the future for those who are yet to walk this road, and those undertaking the battle of their lives, by talking about this cancer, and donating to sarcoma research.

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…

 

 

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.

Back to top

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.

Back to top

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.

Back to top

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.

Back to top

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.

 

Back to top

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.

Add new comment

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.

Your email address is kept private and will not be shown publicly.

 

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.

Back to top

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.

Back to top

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.

Back to top

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.

Back to top

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.