Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I'm so happy to finally see 'K'! she's very beautyfull and so gentle! You were soooo brave! I'm late with reading Your and others' updates, please forgive me, and keep in mind that I think of You and walk with You. Now I'm sending You special sunbeam :) I hope You are all well. Send big big big hugs...

I know there are some people here waiting for update about Paula. My beloved sister, great cancerwarior passed away. She died in the lunghospital. She fought a very very very long and awefull battle, especially during last 4 weeks. Now in a deep sadness I'm writing You to give You my biggest respect...

Hello Paula went through surgical intervention yesterday aiming to reopen left lung (which had collapsed). They managed to clear the airway to the left bronchus, so that the lung has started to work. Partially. The procedure will be repeated next week (scheduled Monday), but much depends on how Paul...

Paula is now in Lung specialised hospital in Poland, not feeling down, still dreaming of going to the US and being taken care of by miraclemakers. On tuesday local doctors will perform bronchoscopy, we will see where will we go from there. I consulted PDT procedure (which J _ Amanda's friend had) wi...

Hi Paula is feeling so... so. Still making jokes, but also in pain, and in breathing problems. Talking morphhine 1.5 ml/h and oxygen. Not all the time. Amanda J didn't answer. Thank You for your great words. what a spirit You have. This really helps You know :) Huge thanks for replies. Olga - You ar...

CT raport translation: CT scan of the chest toward the pulmonary examination technically difficult to perform because of atelectasis left lung and mediastinal displacement to the left. The angio-CT study does not indicate filling defects in pulmonary trunk and right and left pleura assessment of the...

Amanda it is great to feel Your spirit. I tottaly agree -never let hope leave!
Big Hugs to You!

I'm writing to update a little bit. Paulina wanted to fly to Boston this week to see her oncologist there and feel safe in good hands and decide what steps to take next. She has been of any drugs since april, (went through 3 chemoembolization procedures whithin these 3 months). She had difficulties ...

Ivan, thank You for writing. I have to say I admire Your spirit, and how You are dealing with Your own ASPS. I will try to answer Your question when we get to see the rapport. Dr Vogle didn't explain exactly how Paula is benefiting from his procedures, he was saying what he is willing to do and how ...

We are back in POland. I could see that yesterdays dr Vogle procedure helped Paula, she started breathing better right after few hours, and had a good sleep at night. Caughing remains. Olga, thank You for Your reaction. I admire Your knowledge, and I'm very gratefull You choose to share it with us. ...

So we spent all the day in the Clinic where Dr Vogle works in Frankfurt. It looks that lymphnodes are still our biggest problem. Today dr Vogle said he tried to 'shoot' tumors which are making biggest compression and are causing Paula's problems with breathing. I didn't like his approach to the pati...

Hello I'm assisting Paula during her third chemoembolisation in Franfkurt. Tomorrow we are seeing dr Vogle, for last procedure of chemo, and in one month he is going to ablate the tumors. Paula overall condition would be excellent accept her caughf. As we arrived in Franfkurt something new appeared ...

Hello I want to update Paula's current situation. She continues with chemoembolization she hasn't been taken any drugs since cediranib , she had her scans on last tuesday (june 14th). Tumors in lymphnodes are stable, mets in lungs showed slight growth, and what's more important brain is clear! When ...

Olga thank You for contacts this is very valuable. We got an answer from dr Rolle " I am sorry to give the statement that the bilateral metastases are now inoperable because they have confluated, show lymphatic vessel infiltration and have also infiltrated the hilum of the lungs bilaterally. I ...

Dr. Butrynski's lack of response continues, I feel very disapointed. Paula feels left out, it sucks. We are looking for another best doctor closer. If anyone reading this knows how to contact prof Judson from Marsden clinic in London please be so kind and share it with us. Bonnie, the time frame bet...