Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello Olga, I will send my CDs to SAFIR Germany for review this week, last time they have said that 10mm is still small and there is probability to miss it. If they tell me that this time it is possible to do it I will do it without any further waiting for a next scan. in 2022 dr. Drewes saw the sam...

Hi Ivan and Olga Keytruda is available but none of the oncologist I have talked is willing to start Keytruda looking at my case since begging. it will be almost impossible under my insurance. If needed I will have to finance it on my own. I did full scan this year, lung, Brain, Abdomen, pelvic. all ...

Hello everyone, Some time since I last posted. I just picked up the result from my last scan chest abdomen pelvic and brain. New growth was noticed on one of my lung nodules from 3mm in Dec 2022 it has grown to 10mm Dec 2023. I have 5 nodules and now 2 are 10mm. I’m very worried and not sure what th...

Great news, i was wondering are you still on Cediranib for such a long time?

Hello Debbie,

As far as I know last one is done with 1mm, November 2021 3mm.

The one in 2019 is also 3mm but when they scroll over the image, seems like the jump from one to another view is bigger.

Hello everyone, I’ve done a control CT scan 2 weeks ago and this week Ingot the results. After detailed comparison of my last scan in November seems that all is the same. First I picked ip the results on the radiology clinic where the result was a mess. Reported growth pf nodules and New nodules. So...

Hello Ogla, somehow I missed to answer on the last post. The reason for removing vs destroying is to verify if it is asps. if destroyed they would now know in case all rest remains stable and no other nodules occur. Currently I have scheduled a CT scan in beginning of May and after that I will make ...

Hello Sandra I had 2 surgeries, one to remove the primary tumor and that was used for diagnosis in 2015. Afterwards I had more radical surgery and because more tissue was removed there was some kind of fluid in the area that remained empty, this lasted a month or more. I was going twice a week at th...

Hi Olga, I'm still searching for Cryo options. Also will see after the scan in May if RadioSurgery would be the option. I think fro radio surgery the bigger concern they have is that fixing the nodule for cyber knife is problematic because of the small size, if size gets bigger its easier to have a ...

Hello Everyone In the last week I've had separate discussions with Experienced oncologist from Vienna University which specializes in Sarcoma and Saphir Germany. Oncologist opinion - After review of my results scan and pathology report he is suggesting that I do another scan in May to review the gro...

Hi Debbie, My current oncologist is the worst part of my story. I’m the one treating my self and seeking all what I need based on what I have learned here In the last 7 years. Unfortunately on the Oncology Clinic here she is the only one dealing with sarcoma. If I was on her place, doing what she do...

Thank you olga, I will have that in mind, however Dr. Drewes has said that colapse of the lung is also possible complication with his procedure also so I guess this is always one of the risk factors with lung surgeries, I will definitely try to find experienced doctor. I will write to Dr. Vogl again...

Yes I’m definitely thinking about cryo lately. I might have more details this week regarding cryo in the region. If not Saphir in Germany is an option.

I was wondering if I do cryo is it possible later if meeded to do the laser surgery ?

If I have the surgery definitely i will hold on till something new comes up, i will mot even seek Keytruda afterwards. Also with the current situation with one growing nodule it is really hard that I will be able to enroll for Keytruda. I will discuss with more experienced oncologist and than I will...

Today I had video call with Dr Drewes. He has explained to me the complete procedure even more details that I need to know. His plan is to do complete surgery on the left side where he sees the growing nodule and do the analysis afterward. He said that he would not burn but cut around with laser so ...