Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi-

Many of your names are familiar from years past. I am Jill K from Los Angeles and have been fighting ASPS for 18 years!! Things are good now...I can share more later (late for a dinner meeting...) but I am writing with a quick question.

What's the consensus for PET/CT scans? After years of having a PET scan (and I get the purpose of a PET scan = highly active cell activity which can contradict ASPS) but it's always been on my schedule of testing.

As of today, my insurance is denying PET. They'll approve the CT but not the PET. I have what I think is good insurance but in this day and age, everyone is examining cost saving approaches.

I'd like to know what others are being prescribed as tests for on-going follow-up (undetermined tumor and/or scar tissue remaining in lungs). Just a CT? CT and PET? I am willing to fight for the PET if others have docs suggesting their importance. Then again, if the value seems low, I'll let it go. It's just hard to swallow a change in my tests that have become routine.

Thanks in advance. I am glad to see this group still exists.

Best to you all,
Jill

Jill,
hi, it is good to hear from you again and that you are doing good. Would you be able to open a new topic in the Personal Updates with your name and post your story for the people that don't know you from the former board (and for the overall collection and sharing of the ASPS information which is essential goal of this board). I am glad to see that you are obviously in a good spirit!
Re.PET in ASPS surveillance. Last week we discussed this subject with our oncologist and she confirmed what I was already thinking about it in ASPS - it can not detect any small (less then 10 mm) ASPS lung or liver mets as they are slow growing and low metabolic so they do not lit up on the scan. It seems that ASPS bone mets are easier detect by the PET but they are very symptomatic and painful, no scan is needed to find them... Bigger ASPS tumors do lit up on the scans but they are obviously very well seen by the other scans, so may be it doesn't make a sense to have PET for the follow-ups, especially since according to our oncologist there are significant side effects cased by its tracer. Its role in estimation of the possible response of the ASPS tumors to the treatment is unknown to. The bottom line is that it might be the right decision not to have PET but instead to have CT of the chest/abdomen and the MRI of the brain at least once a year if there is no history of the brain mets...

Hi Jill! I think we may have corresponded before. Great to hear from you.

The main setting where it may be helpful is if there is a large actively growing lesion and a question is raised about whether a drug is effective.

Our insurance (Blue Cross) paid required our daughter to have a PET before they agreed to give her a course of Sutent (expensive) - the idea was that they could see if there was a PET response for efficacy - in her case though, the baseline was too low - so only 1 PET was done.

The insurance company like PET if they are having to pay for an expensive med that might be hard to monitor benefit ; patients like PET in the appropriate setting because they may be able to see if the stuff is working or not earlier than a change in tumor size. Many of the new targeted agents don't cause much tumor shrinkage, but can turn off PET signals and further growth.

Is there any update from Jill?
What's the course of his treatment? How did he become NED?

It will be highly appreciated if someone can share us with Jill's experience if he doesn't visit our community now.

Hi Jeorge,
She from what i know is well an ... I think she has tumors yet they are asleep... ASPS in some just stop.. for no reason an be idle for a very long time!

I live in Los Angeles as she does an i asked my Oncs about her an though they cant tell me they are or were following her it seems from hints they maybe! I was told ASPS can start and stop an at times...

I think Olga will know or Bonnie

Thanks Amanda for the update.
We're so glad to hear she is doing great and feel pity that her treatment didn't get published for us ASPS for a reference.