All patients and caregivers dealing with this disease understand how difficult it is to treat DSRCT. The following information will not happen to every patient. Every patient is an individual with their own medical needs. Please consult your physician. The following observations are in general terms only but based on information from patients past and present.

This is not a complete or all inclusive list of observations. Some of the observations may apply to only a certain subset of patients, while other observations will be common for everyone.

Again, these are only observations for patient information only. Check further with your physician.



1. In Stage IV disease a Cat Scan and Pet Scan often fail to reveal the extent of the disease. CT and PET are not good indicators of how many DSRCT tumors may be present. Only surgery can verify how many tumors a patient may be dealing with.

2. Not all patients respond the same way to chemotherapy. Some respond better than others.

3. (Disclaimer: This does not happen to all patients, but it has happened to enough of them that all patients need to be aware of this possibility.) Be aware that a CT or PET scan may be deceptive when it comes to 'no evidence' of disease. Patients that have stopped treatment due to 'no evidence' of disease may relapse in 90 days or less. Progression of disease after relapse is aggressive, tumors can spred and double within 23 days.

The above observation may entirely depend upon what type of chemotherapy, surgery, or other treatment that a patient has had.
The above observation may also indicate patients who have also had other health problems that have delayed treatment.

4. Surgery with the aim of 90-100% removal of all visible tumor(s) is the best treatment for DSRCT.

5. The following chemotherapy protocol seems to have the best response:

P6 protocol
Ewing's Sarcoma protocol
HD-VAC (Vincristine, Adriamycin, Cytoxan) cycled with

Etoposide & Ifosomide with Mesna.

6. It is important to stay on schedule for chemotherapy treatments since this is an aggressive, fast growing cancer.

7. More research is desperately needed.

8. More treatment options need to be explored.

9. The DSRCT community needs more advocatcy to generate more interest in the medical community in solving the treatment issues of this aggressive disease.

Although baby steps have been made in novel treatment, there is still little consistency of protocol followed.

10. The public needs to be educated about the existence of this disease.

11. DSRCT needs research to locate a 'marker' to help identify the presence of the disease.

12. There is currently no 'maintenance drug' to prevent the reoccurance of disease. Low dose VP-16 has been mentioned as a possible drug to use.

The problems with the 'maintenance drugs' is that the cancer may become resistant to the drug, and come back anyway leaving the patient with few other drug options.
It is also possible to develop a secondary cancer or other health problems.


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