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An anecdotal report on the use of chemotherapy by members of the Chordoma Support Group
An online survey was prepared by a manager, in May 2009, to report on the use of chemotherapy by members of the Chordoma Support Group. This format was used so that information could be shared while respecting the privacy of individuals.
This survey merely reports on the declared use of certain medications. There is no endorsement of a particular medication and none should be implied. Patients must consult their own doctor for treatment.
Overview
Thirty five people responded to this survey. There are 100 members of the group at present. This survey was not publicised beyond the Group. The response breaks down as follows:
28 adult patients
6 caregivers. on behalf of a patient
1 adult, on behalf of a child patient
Responses reported diagnosis dates from 1975 - 2009. All reported one or multiple surgeries.
These chemotherapy medications were reported:
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Countries
The home countries of patients reporting chemotherapy treatments are USA, Holland, and Italy.
The large majority of these patients were from the USA [Note: the large majority of Group members are from the USA.]
Chemotherapy and Discussion with doctor(s)
11 people reported that chemotherapy is or has been part of their treatment.
· 4 people had one sort of chemotherapy treatment
· 2 people have been treated with two sorts of chemotherapy medication.
· 5 people have been treated with three, or more, sorts of chemotherapy medication.
16 people report that chemotherapy was never mentioned in discussions with their doctor(s).
6 people reported discussions with their doctor(s). The outcomes of these discussions were reported anecdotally as follows:
· [chemotherapy is] "possible if the disease returns after surgery"
· "I was told firmly that there was no chemo for chordoma. [2002]"
· "Discussed but doctors say not sure if it will do any good."
· THe tumor has started to progress. We are investigating possible options for the future, and targeted therapies are a part the treatments we are investigating.
· "I was advised Chemo was not an option"
· "told there was no chemo which was effective for clivus
Note: Some patients did not answer all questions.
Our thanks to the members of the Support group who shared their experiences.
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Report prepared by Ann Wood, May 31st 2009
Contact: chordomamanagers@gmail.com
Website: http://ca.groups.yahoo.com/group/Chordoma_Support_Group/