Kirt’s Story: How a Clinical Trial for a Rare Tumor Gave Me a New Lease on Life

Kirt Robinson

After participating in a clinical trial, Brooklyn resident Kirt Robinson has been able to resume his normal life. One of his favorite events: the annual West Indian Day Parade.

Summary

Thanks to a clinical trial at MSK, college administrator Kirt Robinson was able to receive targeted therapy for an inoperable desmoid tumor.

When Kirt Robinson, now age 43, started feeling pain in his neck about three years ago, he thought that he’d pulled a muscle while working out. After three months of increasingly severe pain, he noticed a large bump near his collarbone and finally decided to see his doctor.

“I’m very stubborn. It took me a while to admit how bad it had gotten,” says the longtime Brooklyn resident and native of Guyana. “I couldn’t raise my arm over my head to put on a T-shirt. I couldn’t turn my neck. The pain was sometimes excruciating.”

His doctor ordered a needle biopsy of the tumor. When the results were inconclusive, Kirt was referred to a head and neck specialist for a surgical biopsy. His tumor sample was then sent to pathologists at Memorial Sloan Kettering for analysis.

Diagnosed with a Rare Tumor

The experts at MSK determined that Kirt had a desmoid tumor. Desmoid tumors, also called aggressive fibromatosis, are rare growths that usually occur in the arms, legs, or torso. Fewer than 1,000 cases are diagnosed every year in the United States. Most people who are diagnosed with a desmoid tumor are in their teens, 20s, or 30s, and the tumor is more common in women than in men, although experts don’t know why.

Desmoid tumors are a type of soft tissue sarcoma. Unlike most forms of sarcoma, they are not considered cancerous, as they don’t spread to other parts of the body like the lungs, liver, and other organs. They can, however, cause severe pain and other symptoms and may be life-threatening depending on their location.

It's by the grace of God that I found MSK and Dr. Gounder.
Kirt Robinson
Kirt Robinson

When surgically removed, desmoid tumors often come back. If surgery is not possible or requires something drastic, like an amputation, a variety of treatments are used. These include hormonal therapies and traditional chemotherapies. Because desmoid tumors are so hard to treat, MSK researchers have focused on new approaches, such as targeted therapies.

After the diagnosis, Kirt first saw a surgeon at MSK. He learned that his tumor was not operable because of its location next to critical areas, like nerves and blood vessels in his neck. His surgeon told him that he might be eligible for a clinical trial. After that, Kirt went to see MSK medical oncologist Mrinal Gounder. Dr. Gounder is an expert in desmoid tumors and other types of soft tissue sarcoma.

Back to top

The Opportunity to Participate in a Groundbreaking Trial

Kirt was concerned about having chemotherapy, so he was happy to learn that Dr. Gounder was leading a clinical trial for a different kind of drug. The trial was the first to evaluate the use of a pill called sorafenib (Nexavar®) to treat desmoid tumors. Sorafenib is a targeted therapy that was originally developed to treat kidney cancer, but it is also known to block proteins that frequently drive the growth of desmoid tumors. Targeted therapies tend to have fewer side effects than chemotherapy because their activities in cells are more specific.

Kirt was one of 87 people to participate in the trial, the results of which are now being published in the New England Journal of Medicine. The phase III study reported that there was a benefit of more than seven-fold in people who took sorafenib compared with those who didn’t. The drug helped stop tumor growth for an average of nearly two years. Many of the patients had their tumors shrink significantly, including Kirt. People who didn’t get the drug in the first part of the trial were able to later receive it, and many of them benefited as well.

“Until now there hasn’t been a standard way to treat people with desmoid tumors, and there haven’t been many studies on them because it’s such a rare disease,” Dr. Gounder says. “As it’s become increasingly clear that surgery is not the best way to treat these tumors, the need to find different approaches has become more apparent.”

Dr. Gounder’s trial came about in an unconventional way. After he published a paper in 2011 describing a few patients with desmoid tumors who had been given access to sorafenib under a compassionate use program, he was contacted by the Desmoid Tumor Research Foundation, a patient advocacy group. The group’s leaders encouraged him to conduct a phase III trial and assisted with recruiting participants. The trial ultimately included people treated at nearly 25 hospitals in the United States and Canada.

Until now there hasn't been a standard way to treat people with desmoid tumors.
Mrinal M. Gounder
Mrinal M. Gounder Medical oncologist

Dr. Gounder says it is now up to Bayer, the company that makes sorafenib, to decide whether to apply to the US Food and Drug Administration to get the drug officially approved for desmoid tumors. Since its approval for kidney cancer, the drug has also been approved for liver and thyroid cancers.

Back to top

A Return to Normal Life

Kirt is feeling much better since going on the drug, which he still takes. He needs some physical therapy to regain full mobility of his arm and hand, but he no longer has pain and is able to get restful sleep again.

The side effects from the drug have been minor and manageable. They include occasional rashes, high blood pressure, and diarrhea, all of which affected many other people in the trial. He has also experienced tingling in his hands and feet and changes in skin pigmentation.

He has returned to many of his regular activities, including participating in New York City’s annual West Indian Day Parade, of which he has been an active participant for many years. He’s even grateful to be able to do mundane chores again, like cleaning his bathroom.

“It’s by the grace of God that I found MSK and Dr. Gounder,” Kirt says. “It was really by happenstance that I stumbled upon the opportunity to participate in this trial, which has impacted me in such a positive way.”

Back to top

This research was supported by National Cancer Institute grants (P30 CA008748, U10CA180821, U10CA180882, U24CA196171, U10CA180833, U10CA180838, U10CA180857, U10CA180858, UG1CA189850, UG1CA189957, U10CA180820, U10CA180868, U10CA180888, and U10CA180826). It was also supported by funds from Bayer Pharmaceuticals, an American Society of Clinical Oncology Career Development Award, the Desmoid Tumor Research Foundation, and the FDA Orphan Products Clinical Trials Grants program. Dr. Gounder has received advisory board and consulting fees from Bayer.

Comments

My wife has an abdominal desmoid attached to her small bowel. It grew to the size of a football (Aussie rules) similar to a gridiron ball. We went to Melbourne in Australia to see D4 Dobrotwir who performs High Intensity Focused Ultrasound. This treatment as painful as it was for my wife worked amazingly to reduce the tumour size by 33% in 6 months. Dr Dobrotwir also suggested Sorafenib to support his treament, unfortunately at $6,000 a month it was way out of our financial capacity to do so. On the other hand our oncologist managed to supply us with a drug called Pazaponib (Votrient). This drug is similar in price to Sorafenib, but we were given 2 months supply to help us out. So far Pazaponib seems to be helping, but once we run out, we will have the same issue of not being able to afford it. I am thinking the only way to keep her going is to start a go fund me page. Such a shame that a drug is available for some cancers and not for others, and that costs put it out of eeach for those who need it.
Kind regards

Paul Carter

Dear doctor
I have desmoid tumors since late 2014, and used to do surgery 3 times.
Now it still reoccur, please advise where can I find the treatment?
Best Regards
Sokly
Phnom Penh, Cambodia.

Dear Sokly, we recommend you discuss this with your doctor. Thank you for your comment and best wishes to you.

Certainly my experience was that surgical excision meant another one returned very close to the same site but ablation stopped the tumor and have now got the all clear earlier this year.

Dear Toby, we’re glad to hear you’re doing well. Thank you for sharing your story and best wishes to you.

Hi. I am from Holland. I have also just like kort since August a desmoid in my neck as big as an egg. Glad to hear from sorafenib. I have pain in my neck and shoulders and tintels half my left body. Still wait and see but when psi killers like ibuprofen and paracetamol does not work enough I will ask my doctor for sorafenib. It's growing fast and non operable I think. Kirt I hope you are fine now and be in peace in what you have. Regards Monique

Dear Monique, thank you for sharing your story and best wishes to you.

Is iT possible to come in contact with Kirt Robinson? I’m the sister of Monique from Holland, see comment above. And she needs help. Is sorafenib already available in the Netherlands.
It is important to come in contact with someone who’s has desmoid on the same spot in the body, the neck.
IT is very rare.
I hope to hear from you because My sister needs a lot of hope and possitivity in her life right now.
She’s afraid for the future.
With kind regards,
Nicole Brouwer

Dear Nicole, we are sorry to hear about your sister. We recommend that she speak with her doctor about the possibility of getting access to this drug. It is approved in the EU for other types of cancer, but not for desmoid tumors. If she is interested in arranging a consultation with a doctor at MSK in New York, she 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 both of you.

Hello,
In january i posted a comment,
My sister is starting this friday with
Caelyx therapie.
But i want Some advice about this medicine. Do you know Caelyx.
The desmoid in her neck is about 7 centimeters and her first chemo with pill doesn’t have any effect. Now starting with Caelyx.
The tumor is growing around her artery. Is it wise to pay a visit to MSK?
Of that we send her medical file.

We are all afraid also she’s the only one in the Netherlands.
With kind regards,
Nicole Brouwer

Dear Nicole, we’re very sorry to hear about your sister’s diagnosis. If she would like to arrange to get a second opinion from MSK by mail or email, she can contact our International Center at international@mskcc.org. Thank you for your comment and best wishes to both of you.

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.