ATC

What might my experience with synovial sarcoma look like?

Your journey with synovial sarcoma might be frustrating, and may involve challenges with diagnosis and treatment

For many reasons, you may notice or have noticed many challenges even beyond what you might expect. Synovial sarcoma, especially in its advanced stages, can be challenging to treat and have varied outcomes. The journey can be long and emotional, but you are not alone. See our Resources and Support Groups page for resources that may offer help, comfort, or understanding to you and your loved ones.

If you have any questions about your condition or diagnosis, connect with your doctor or care team dots

You may have experienced frustration or particular difficulties during your journey with synovial sarcoma due to: Select any of the words or phrases below.

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Delays

Getting a diagnosis early is important, but may be difficult. Synovial sarcoma can grow slowly or the symptoms may be easy to miss, as it can present as a painless lump. Life's hurdles—be it time, money, or stress—can also make it hard to seek help. On average, it can take up to 2 years from the start of any symptoms to diagnosis, and this can make it more likely for the cancer to be advanced when it is eventually identified.

Misdiagnoses

Diagnosing this disease can be a complex process as the cancer can look like other illnesses. It also does not always look like other types of sarcoma. Some tumors can appear harmless to doctors, or symptoms—like pain or swelling in a joint—may be initially misdiagnosed as something less serious, such as an injury, bursitis, or tendonitis. If your diagnosis was unclear or if you struggled to get a diagnosis, it may have led to feelings of uncertainty and frustration.

Presentation at diagnosis

Your prognosis, or expected outcome, can depend on many factors including tumor size, the location or depth of the tumor in the body, whether the tumor has spread to other parts of the body (metastasized), and if it can be completely removed by surgery. Some of these factors may be due to chance, but could also be affected by any delays or misdiagnoses you may have had, leading to more frustration.

Nature of the disease

Synovial sarcoma can be slow-growing but can also be aggressive. It can metastasize (spread to other areas of the body) or come back after treatment. Every case is different, and you may find yourself wondering whether your cancer will return or progress, which can be incredibly stressful.

Limited treatment options

Synovial sarcoma is a rare disease, and there are not many therapies that are proven to treat it. Aside from initial surgery and radiation, systemic therapies like chemotherapy are most commonly used. These therapy options you may have tried include ifosfamide, doxorubicin, pazopanib, trabectedin, dacarbazine, and gemcitabine. Systemic therapies like chemotherapy can be hard on you, physically and mentally, and may not always stop tumors from growing.

Multiple treatments

Many people try several treatments because the cancer can come back or spread. This can feel like a roller coaster—physically and emotionally. You might start with surgery, move on to radiation or chemotherapy, and each time hope that this is the one that works. It's tough when treatments don't keep the disease from advancing, and the pace can seem relentless.

Speaking with a sarcoma specialist is important for your treatment journey. Find one at a Sarcoma Center of Excellence near you dots

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INDICATION and IMPORTANT SAFETY INFORMATION

What is TECELRA?

TECELRA is a medicine, called a genetically modified autologous T cell immunotherapy, that is used to treat synovial sarcoma. It is used when other kinds of treatment do not work. TECELRA is different from other cancer medicines because it is made from your own white blood cells that are made to recognize and attack your cancer cells. Your healthcare provider will perform tests to see if TECELRA is right for you. TECELRA is approved based on patient response data. Additional data are needed to confirm the clinical benefit of TECELRA. It is not known if TECELRA is safe and effective in children.

Please see Medication Guide, including Important Warning.

IMPORTANT SAFETY INFORMATION

Important Warning: You will likely be in a hospital before and after getting TECELRA. TECELRA may cause side effects that can be severe or life-threatening. Call your healthcare provider or get emergency help right away if you get any of the following: fever (100.4°F/38°C or higher); chills/shivering; difficulty breathing; fast or irregular heartbeat; low blood pressure; fatigue; severe nausea, vomiting, or diarrhea; severe headache; or new skin rash. Tell all your healthcare providers that you were treated with TECELRA.

After getting TECELRA, you will be monitored daily at the healthcare facility for at least 7 days after the infusion. You should plan to stay close to a healthcare facility for at least 4 weeks. Do not drive, operate heavy machinery, or do other activities that could be dangerous for at least 4 weeks after you get TECELRA. Your healthcare provider will do blood tests to follow your progress. It is important that you have your blood tested. If you miss a scheduled appointment for your collection of blood, call your healthcare provider as soon as possible to reschedule.

Before you receive TECELRA, tell your healthcare provider about all the medicines and supplements you take and your medical conditions, including: seizure, stroke, confusion, or memory loss; heart, liver, or kidney problems; low blood pressure; lung or breathing problems; recent or active infection; past infections that can be reactivated following treatment with TECELRA; low blood counts; pregnancy, you think you may be pregnant, or plan to become pregnant; breastfeeding; or taking a blood thinner.

The most common side effects of TECELRA include nausea, vomiting, fatigue, infection, constipation, fever (100.4°F/38°C or higher), abdominal pain, difficulty breathing, decreased appetite, diarrhea, low blood pressure, back pain, fast heart rate, chest pain, general body swelling, low white blood cells, low red blood cells, and low platelets.

You are encouraged to report side effects to the FDA at (800) FDA‑1088 or www.fda.gov/medwatch or to Adaptimmune at 1‑855‑24MYADAP (1-855‑246‑9232).

Please see Medication Guide, including Important Warning.

INDICATION and IMPORTANT SAFETY INFORMATION

What is TECELRA?

TECELRA is a medicine, called a genetically modified autologous T cell immunotherapy, that is used to treat synovial sarcoma. It is used when other kinds of treatment do not work. TECELRA is different from other cancer medicines because it is made from your own white blood cells that are made to recognize and attack your cancer cells. Your healthcare provider will perform tests to see if TECELRA is right for you. TECELRA is approved based on patient response data. Additional data are needed to confirm the clinical benefit of TECELRA. It is not known if TECELRA is safe and effective in children.

Please see Medication Guide, including Important Warning.

IMPORTANT SAFETY INFORMATION

Important Warning: You will likely be in a hospital before and after getting TECELRA. TECELRA may cause side effects that can be severe or life-threatening. Call your healthcare provider or get emergency help right away if you get any of the following: fever (100.4°F/38°C or higher); chills/shivering; difficulty breathing; fast or irregular heartbeat; low blood pressure; fatigue; severe nausea, vomiting, or diarrhea; severe headache; or new skin rash. Tell all your healthcare providers that you were treated with TECELRA.

After getting TECELRA, you will be monitored daily at the healthcare facility for at least 7 days after the infusion. You should plan to stay close to a healthcare facility for at least 4 weeks. Do not drive, operate heavy machinery, or do other activities that could be dangerous for at least 4 weeks after you get TECELRA. Your healthcare provider will do blood tests to follow your progress. It is important that you have your blood tested. If you miss a scheduled appointment for your collection of blood, call your healthcare provider as soon as possible to reschedule.

Before you receive TECELRA, tell your healthcare provider about all the medicines and supplements you take and your medical conditions, including: seizure, stroke, confusion, or memory loss; heart, liver, or kidney problems; low blood pressure; lung or breathing problems; recent or active infection; past infections that can be reactivated following treatment with TECELRA; low blood counts; pregnancy, you think you may be pregnant, or plan to become pregnant; breastfeeding; or taking a blood thinner.

The most common side effects of TECELRA include nausea, vomiting, fatigue, infection, constipation, fever (100.4°F/38°C or higher), abdominal pain, difficulty breathing, decreased appetite, diarrhea, low blood pressure, back pain, fast heart rate, chest pain, general body swelling, low white blood cells, low red blood cells, and low platelets.

You are encouraged to report side effects to the FDA at (800) FDA‑1088 or www.fda.gov/medwatch or to Adaptimmune at 1‑855‑24MYADAP (1-855‑246‑9232).

Please see Medication Guide, including Important Warning.

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