Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I wasn't there with Paula so I didn't see the procedure. But I write what I know from her telling me: dr Vogle starts through the vein in thigh, and on monitor he watches how the chemo is going where he planned it to go. That's basically it. THen Paula had to wait still for 3 hours. After these 3 ho...

Hello hello thank You for Your warm thoughts. Paula is doing very well. She was taken care of by our brother (her twinbrother) while in Frankfurt. Procedure went fine "infusion with 8mg Zofran und 20mg Fortecortin the transarterial Chemoembolization was performed with the application of 9.84 mg...

He'll do his best- that's what I know.

Paula prebooked an apointment for this thursday to chemoembolization procedure. At the same time her leading oncologist is trying to reach dr Vogle to talk to him and give his perspective (which is crucial to Paula). It is difficult with their busy schedules and time difference. She has tumor in lun...

So, I have some more news but I wish I knew much more: dr Vogle suggests chemoembolisation (which is Localised Chemotherapy" - minimal-invasive treatment of lung tumors) and abaltaion as a treatment option using either mirkowave or laser. I didn't understand it before. From what I found on dr V...

Exactly Olga, this is it. On monday we will email and call,
and I hope at the end of the day I will report the news here.
Have a good sunday.

Mel my heart clutched when I read about You girls. I immidiately felt close to You since I'm also an older sister of an ASPS patient. I'm very sorry the ASPS just crashed in Your life so rude, and when You wrote about Jo leading such healthylifestyle I saw a big question mark. SInce You contacted ev...

Dr. Vogl confirmed possibility of ablation over the phone talk with Paula. Unfortunately I didn't hear what he said. Paula did have a feeling there were some communication problems, so there is no big hurray here. he didn't want to talk to her so much, and didn't answer her questions regarding ablat...

Hi, Olga thank You for keeping things in order, Bonnie thank You for Your comforting words. We are still in a process of waiting to confirm ablation possiblities in Frankfurt. Paula ask me to post here her big favour for Your suggestions how to search ARQ trial, or regular treatment (is it already i...

Here is exactly what dr Vogle wrote us: "i would consider local chemoembolisation and abaltaion as a treatment option using either microwave or laser" THe CT scans will be at his office thursday the latest. So hopefully we know by the end of this week if crio is an option. Olga, we didn't'...

We contacted dr Vogl from Frankfurt, he has to see the CT scans to confirm his opinion, but after looking at some imaging we had and could send via email plus latest reports, he said it would be possible to cryoablate Paula's tumors in lymphnodes. He mentioned something else as a form of surgical tr...

Amanda, Ivan, Bonnie thanx. Ansswering Your question Ivan: the difference in growth of the lymph nodes is from 2.6cm to 3.1 and from 1.8 o 2.4 It means that Paulinas' progression is 25%. The tumors in the lymphnodes are unresectable. Our oncologist Dr Butrynsky proposed 2 options: 1.arq197 or crizot...

well...disappointing news. Todays' Petscan showed small progression in Paulas thoracic area and she was told by NIH doctor that she needs to go off the trial. It is very fresh news, based only on Petscan,she is still before CT scan results. I'm wondering if she should push things around NIH to have ...

LCMA,
I can imagine You are going through difficult time right now!
I'm very sorry to know that.
I send You strong polish hugs to support You,
take care girl.
M

As always we are very greatefull for your warm words. Dotty, hello, nice to hear from You. I sighed when You mentioned Insomnia, Paula has it sometimes as well. Sometimes she gets very sleepy during the day. I tell You she is so so so great and brave! She is getting ready for her checkup trip to Bet...