Hello I just wondered if you have any information about the protocol for the clinical trial on Synovial Sarcomas at the Christie - or anywhere really.
I have my treatment meeting on 18th May - they are suggesting Doxorubicin and Ifosfamide and surgery. Also using a portacaf.
Do you have any idea how functional my leg will be through this route? Also I understand the portacaf has a risk of infection.
The lump is 14cms across.
Thank you so much for any insight or pointers
Pam xx
Dear Aunty Banunu,
Thanks for getting in touch with us at the online community. My name is Penelope and I am one of the Cancer Information Nurse Specialists. I can see you have also joined the soft tissue sarcomas forum. I hope you are finding it helpful and supportive.
I have been unable to find any information about a trial for synovial sarcoma at the Christie or any other hospital. There is a database of all available clinical trials, but I did not find any results specific to your query. The database is called Be Part of Research. You may also like to look at general information on clinical trials from Cancer Research UK.
The drugs that you mentioned are commonly used in the treatment of sarcoma. This link about doxorubicin and ifosfamide is only general information about the drugs and may not be relevant to your individual treatment. Sometimes a trial looks at the benefits of established treatments being given in a slightly different way. As we do not have access to any of your medical information, we would suggest getting in touch with the sarcoma team to find out more. You can do this before your appointment on the 18th May. The more you are able to find out about possible treatment options the more you will be able to be involved in decisions about your care. The Christie has a specialist sarcoma nursing service. The information in this link contains contact numbers and states that any patient coming for assessment or treatment for sarcoma at The Christie can contact the nursing service. Sarcoma UK may also be able to provide you with further information and support.
In general treatment for sarcoma will aim to preserve as much of the function of the limb as possible whilst treating the cancer. As everyone is different it is important that you get information from your own clinical team as to the possible impact of the treatment on your mobility. There should also be services available such as physiotherapy to support you in preparing for any surgery and maximising your recovery.
It may be that you are referring to an implanted port or portacath as the way the treatment will be given. Please also ask the sarcoma nurses involved in your care more about this. Whilst there can be an infection risk with any device that is used to give chemotherapy a recent trial published in The Lancet confirmed that an implanted port has the lowest risk of complications. This is partly because when it is not in use it does not have any external connections outside of the body.
I hope that you are able to find the information that you need from the sarcoma team and wish you all the very best with your treatment.
Best wishes
Penelope, Cancer Information Nurse Specialist
You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.
Ref/KD
