Cure Alveolar Soft Part Sarcoma International (iCureASPS)

hello i'm sorry for being late with an update here is Paula's update from first checkup after 2 motnhs of cediranib "Comparison with the study of Janary 3 : Decrease In size of lung nodules Decreased In size of portions of hilar and mediastinal adenopathy Decrease In size and enhancement of par...

I always have read quietly Brittanys' story till now and I just have to write: Hurray!!!! and Congrats!!!!! and all the happy people jump up high !!!:):):) It had too be soooo tough for Brittany and Bony and their family to go through all of this. What a great news, (and confirmed twice:) ). I hope ...

So it's been almost 2 weeks since Paulina stared Cediranib. She was happier before, that's for sure. Tests CT, PET and MRI done at the beginning of treatment showed very discouraging facts: The worst of them is that there are many tumors around Paula's windpipe and they are surrounding it and pushin...

So Paula is at NIH first day on Cediranib Here is report after CT scans of the beginning of the trial: Multiple bilateral lung nodules, the largest a lobulated 2.8x1.5cm right upper lobe mass. Mild mosaic attenuation pattern in the right upper lobe, possibly relating to vascular compression by right...

Good news! hurray!
take good care LCMA

So, Paula will fly to the US right after the New Year and will have all the tests done to be accepted for Cediranib trial at NCI. she needs to be active and get things done by herself so she asked me to stay kind of away. It was a bit hard, but I see she is very good in taking her of her own businne...

LCMA
It has to be very nice to read all of these words of support You got after You wrote you were scared. I thought that it's good you were so honest and wrote about Your feelings. Paula and I will be thinking of You since she has her scans on the same day Take care girl

Olga thanks for Your suggestion, Paula doesn't want to break the ties. I think I misunderstood her and wrote her my impression. But I will keep in mind to fight our decision and make polish doctors support us. I think it matters big time for other polish people who will be in our situation in the fe...

Olga thank You for Your suggestion. You are really well informed about asps things in the world, I admire that. Lindsey, I wrote you twice during last and a half year I know about. It's good that you are here. So! After getting an opinion from Boston Paula decides to apply for Cediranib in Bethesda....

So my wonderfull friends Our polish medical team stated that disease is in progress and decided to stop sutent now and suggested to go to CHEMO They think of 2 kinds o chemo: - fosfamid followed by dox+ dtic. Afterwards they would put Paula on chest radiation. We don't like their idea at all. Dr But...

Thahnk You Olga and Bonnie for such a quick reply and support. I forgot to mention that we menaged to sent scans from august to dr Rolle and talked with him as he received them (it all took about 3 weeks). He looked at the scans, not very sofisticatedly (these are his own words) for about 10 minutes...

Hi, new update. This time from polish ct, which was done 1 week ago. Doesn't look too great. Paula is freaking out. :( SHe is very nervous as she will be talking with polish oncologist tomorrow. You know, he is very poor in communicating any news, so having him preparing to tell not such great news ...

Hey everyone!!!! I'm writing with an update on Paula situation. Paula is now one year status post resection of a primary and radiation for her ASPS of the right pelvis. Here is the impression from the raport after MRI and CT she just did in Boston this month: "Significantly increased right hila...

On 16th of april 2010 Paula had her checkup and mets in lungs are the same in number but... the largest is 2mm. Hurrah! It means a little regression of a disease which made doctors to keep Paula on 37.5mg daily dose of Sutent with no breaks in between monthly cycles. Blood tests are done every 2 wee...

Hello great people :) On 16th of april 2010 Paula had her checkup and mets in lungs are the same in number but... the largest is 2mm. Hurrah! It means a little regression of a disease which made doctors to keep Paula on 37.5mg daily dose of Sutent with no breaks in between monthly cycles. Blood test...