Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thanks for your kind words and suggestions. We are in the process of getting an evaluation from Dr.Littrup, apparently he's one medical leave himself.I don't know how long we should wait to get the cryo.In the meantime we had a discussion with our doctor at the University of Michigan and the doctor ...

Wanted to add one more thing... The pazopanib + ARQ197 trial which is expected to start at NIH sounds like a good option, Dr.Kummar told us that they are talking about a 3 months washout period for people coming off other anti angiogenic drugs like cediranib or sutent. So that might be a good time t...

Hi Mario,

Thanks for the update. Its good to understand your options and be ready with an alternate plan, hope you will not need it now, we hope the stability continues for a long time.

Best wishes.

Arch

According to a study in RCC, patients who switched to sutent from another VEGF inhibitor responded better if there was atleast a 30 days washout period. Thought of sharing this as many people here are trying different VEGF inhibitors sequentially. I thought it was best if there was no gap, so that n...

Dear Wendy, Its so difficult for us to accept such a setback. But maybe some thing else will work even better. Maybe sutent will also induce some stability and since its not a trial drug, we would also have the flexibility to have surgery/cryo/rfa and be back on it. I am right now praying for guidan...

Hi Amanda, There are a few people who have been on cediranib for longer than a year, I was checking if anyone on this trial at NCI have stayed for longer than a year. Clare,Paul and even Brittany started with 45mg cediranib and I guess they were/are all part of phase-1 trials which probably allowed ...

Sree got home from NIH late last night and this is what I understood from him. The radiologist compares a scan with the previous scan(taken 8 weeks ago), changes of 1-2mm are still reported as stable because its within the realms of error. Its difficult to report a 1 mm change as a growth, because i...

Dear Friends, Here's our update- Sree is out of the trial after 10 cycles of cediranib(30mg). He had his scans today, the radiologist's report says that the lung mets are stable, but Dr.Kummar thinks that after the initial shrinkage(during the first 8 weeks), Sree's mets are slowly growing. They are...

Wonderful news! We are so happy for you.
Happy holidays!

Arch & Sree

Thanks for this update curesearch. Good to hear that your daughter is doing well. When I searched for interferon and ASPS on the internet, I found only one report published in 2003 where interferon was successful. Your update reinforces the fact that interferon might have an activity in ASPS. Have a...

Hi Mania, I'll share what I know about the cediranib trial at Bethesda, hope its of some use to you or any other person reading this post. We first contacted the NCI referral nurse(contact information is available on the clinicaltrial.gov website) and soon were introduced to Agnes, she's the researc...

Dear 'F',

Glad to hear that the surgery is over...We wish 'K' a quick recovery. Do let us know when more information is available.

Arch

Hi, I'm sorry to hear this. When we consulted at the University of Michigan(they see quite a few sarcoma patients) before starting cediranib, the options that they discussed in addition to cediranib were interferon and trebectedin. There is a trial of RAD001 in sarcomas and is available in Europe an...

PET picks up a lot of things, not all are indicative of malignancy and many small ASPS mets don't lit up on PET at all. But what we get at NIH is a PET CT, a CT is done along with the PET. So when they see a lesion and a PET acitivity, that becomes relevant information. I went thru all his reports a...

Dear All, Thanks for all those suggestions. Sree's local oncologist had suggested some drugs to help increase appetite and weight gain, one of them is a hormone and the other is a marijuana based stuff. Sree discussed it with his doctors at NCI and has decided not to pursue any of that at the moment...