Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thank You for sharing your knowledge with us 'F'. It's been clear, that in june we were put to sleep by positive news from CT scans about the regression of primary. We were not carefull enough to ask and read, and stay allert about what PET results said. I am angry we agreed so easy that surgery was...

color didn't work in above post. I ment lymph nodes ('F' how did you know?) poorly accumulating FDG.

Bonni and 'F' thank You for your comforting words. 'F' you are closest to how facts are. We went through previous descriptions of imaging scans and in PET from may I found that Multifocal lesion of 97x86x88 mm in size with peripheral uptake of 18F-FDG SUVmax. FDG=2.0 in the right iliac ala and in th...

So here I go with an update after Ct scans. yesterday's Ct scans showed 1 nodule (about 3mm) in right lung. Primary stable, no change since june. But...: AROUND RIGHT HIP VESSELS - AN ABNORMAL SOFT TISSUE OBSERVED, OF THE SIZE OF 87 X 32 MM, COVERING THE RIGHT PARAMETRIUM. THE COMPUTER TOMOGRAPHY IM...

Amanda
thanks it is very supportive to read from You.
I look and regulary here all the personal updates, I just don't write so often, never on other's people's subject. But I cheer for everyone, and I'm very happy to find You all here in such well organised and full of ino forum. Write You soon
Mania

Hi Finally, after completing administrative/financial procedures we have surgery date at General Mass in Boston. It's scheduled on 19th of august! I will post the results of preoperative scans we are about to do soon, and see how everything looks. Paula is doing ok, a bit tired lately, but happy and...

Paula was put on Sutent about 1 month after her diagnosis, before resection of her primary (her primary was called unresectable in her homecountry) Receptors (marker) result showed cKit were negative and EGFR was positive. She started with 50 mg of Sutent per day. After 28days she had 2 week break d...

Hi! Paula had CT scanc checking how Sutent is working. Well it is working excellent! 15% of shrinkage in her pirmary, and ct scans showed only 2 mets left in right lung (abut 3mm big) This is very good news! We are very encouraged. I believe it is not only sutent working but also diet, reflexotherap...

HI thank You for your great advices! Olga, You are so right. I am trying to get in touch with dr Eilber from CA recommended by 'F' here on this forum. But it is very difficult. I use phone, fax, emails, but unfortunately no answer. I sent scans of Paula in march there and still silence. And dr Eilbe...

hi there we have another rescheduling our paula's surgery. first we have to get all of the financial things in order to have the treatment started out of our country. i hope it won't last for too long, and next week we have another date for surgery. we are fund raising and waiting for our government...

Hi all, Now the date of our surgery is rescheduled for 9th of june, according to difficulty securing the 'special' operating room required for intraoperative radiation that Paula is souposed to have. So Paula is back on Sutent again and she will need to interrupt it for surgery. the question is when...

Hey Amanda thank you for nice words. here is description of surgery that our surgeon from General mass made for us: The type of surgery that is planned is a "radical resection of the right iliac wing, hip abductor muscles, and iliacus muscle." Before that is done a Urologist will place a c...

Hello! We are in boston now, and it was so good to hear that doctors want to do the surgery. just to remind polish surgeon attempted surgery, but failed saying tumor is unresectable. i'm very impresed by how medical system works in hospital. we felt we were taken with respect and great care. The sur...

HI THERE! Olga, 'F', thank you for information - this is really amazing of You, you are being very helpfull in this hard process of gathering information before Paula actually decides what treatment options to use. We will show it to any doctor we talk with. I feel this site is such a big info place...

Hello We have a big question: Here is shortly the situation We need for our polish doctor resulst of VEGFR, PDGFR, C-kit, EGFR. Since all of the tissue from biopsy is in Mass General, we are asking for Results of these receptors to be made at Mass. It took some time to find out that: GeneralMass doe...