Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I'm 29 now and had a +/- 4cm ASPS tumor in my left thigh (about 11 months ago) No signs of mets yet on CT (lungs) and brain (MRI)

I’m getting a 4 monthly checkup (Xray only) (they got that suggestion also from the MD report)
I know some members would do it different but I feel good about it . It took me about 4 months to get my life back on track after the first diagnose. It’s still always in the back of my mind.
In the published reports from for example MD Anderson they found NED (no evidence of disease) for around 70- 80% of the patients after 5 years and longer.
So if no mets at presentation you and I will have a good chance. If it spreads it will likely do it in the first 18 months. Most of the times even within 7 – 9 months.
But It's likely that the results are even better because in the reports they didn't always use CT or MRI for diagnose.

http://cureasps.org/library/12_Texas_Review_1999.pdf

http://wjso.com/content/6/1/71 (latest one 2008)

All the best
Martin

I post this message for the stats.

After 2years and 4 months no sign of any mets. Based on CT.

All the best to all of you!
regards
Martin

Dear Martin,
Thank you for posting this update with the very good and encouraging news of your continued disease stability with no new tumors two years and four months following your ASPS diagnosis. I am not clear from your original posting if you had your primary tumor resected or not, so could you please clarify this for us? In the meantime, please know how very happy I am for your good scan results and that my best wishes for continued stabilization of your disease are with you. Take care and please keep the Board updated on your next scan results.
With special caring thoughts and continued Hope,
Bonni

Hi Bonnie
I think he is just posting his info for everyone as we have asked and not really active in the forums for now If i remember right his primary is out and i think it was about 4CM :/ He posted to me in my folder about a year ago to give me hope and said alot there

Bonni Hess wrote:Dear Martin,
Thank you for posting this update with the very good and encouraging news of your continued disease stability with no new tumors two years and four months following your ASPS diagnosis. I am not clear from your original posting if you had your primary tumor resected or not, so could you please clarify this for us? In the meantime, please know how very happy I am for your good scan results and that my best wishes for continued stabilization of your disease are with you. Take care and please keep the Board updated on your next scan results.
With special caring thoughts and continued Hope,
Bonni

Happy Birthday Martin!

Hello
After dx in 2008 i'm on a yearly ct schedule.
ASPS is not on my mind every day. I'm checking the boards on a regular bases.

march 2008 dx right tigh 4cm no metastases at presentation
april 2008 removal primary
May 2008 NED
April 2011 Now going to a chest xray schedule on a half year bases. It gives less stress and is based on the MD anderson report for patients with no mets at presentation. I'm fine with it.

regards
Martin

Hi Martin

Very happy to hear that you are doing great I hope you will continue having NED.

Hmm, do you know what is the smallest size met they could see on a chest xray? I would be very uncomfortable with that follow up schedule if it's bigger than 1 cm. ASPS is an unpredictable disease.

Hi Martin

Debbie here. Josh is my son. Our GP told us of someone in our area with your same case..removal of primary and still disease free.
So happy to hear the good news
Do you still get PET whole body scans, brain MRIs ?

Keep us posted
Nice to meet you

Debbie

Hello there,
I'm doing fine overhere.On paper its still Ned.
We are still on the x-ray path after having the the full package the first 24months.
Its a different approach but i'm totally fine with it.
This website is a very good source.
Thank you all for contributing.
All the best
martin

Martin, thanks for the update. I am glad to hear you are NED as of now Please continue to remain vigilant in your follow up!

So glad to hear your news, Martin
I second Ivan's comment. Be always alert but thankful
Sincerely
Debbie
We are almost at our 1 year mark and looking to well into the future with Joshua at our side
Much love to all going on this ASPS path in life