Just a blip of my story (update)

Patients who have no evidence of disease (NED) or stable for decades
Post Reply
Amandafromcanada
New Member
Posts: 3
Joined: Wed Jun 06, 2018 1:36 pm

Just a blip of my story (update)

Post by Amandafromcanada »

Hi everyone!
I'm Amanda from Ontario Canada!
I was diagnosed with ASPS in 2001 at the age of 17.
My primary tumor was in my right upper inner thigh,
Metastasized to my lungs.
I had my primary tumor removed along with 2 thoractomys on both lungs, where they resected over 50 mets. This was all done within the first year of being diagnosed.
I underwent over a year of celebrex and vinblastine (clinical trial) at Toronto sick kids,
I Became septic and came off the clinical trial.
My parents were told to take me home and give me quality of life at that time.
My parents reached out to Dr.Kellar in Ottawa,
He put me on traditional chemotherapy,
Doxrubicin and Ifosfamide.
I only did a couple rounds before I said no more.
I am now 33, almost 34,
With no sign of disease,
I have 2 beautiful boys who are 11 and 12,
I was told I would never have children.
Life is good!
I go for scans yearly but have since been thinking maybe every 5 years would suit me as there has been no sign of disease for so long.
Just wondering what your thoughts are.
I don't think the oncologist I have now has ever seen, or experienced anyone with asps,
Would be nice to hear everyone's thoughts on how often I should be seen, and scanned.

Xo
all
New Member
Posts: 9
Joined: Sat Apr 28, 2018 2:44 am

Re: Just a blip of my story (update)

Post by all »

glad to hear, seems your disease was gone.
Did u take a pet-ct scan for all your body?
Post Reply

Return to “Success Stories”