Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello dear asps patient, In case you need to travel to Germany for any treatment, e.g. to see Saphir Radiology Uniklinik for cyberknife or ablations, I offer to stay at my house. You can reach the clinic by taxi within 30min. Airport is also very close, around 20min. Pls contact me by email t_wever@...

Hi Geeta, But especially Olga and all the lovely helpful people of this organization. I talked to Geeta several times already and offered my help to her according the option of ablation and want to do so to anybody in this forum. @Olga: where do you want to place my offer to help? If anybody worldwi...

Dear Olga, Debbie and Bonnie, Saskia grew the most wonderful wings last Sunday evening surrounded by family and friends at home in her room as she wished..... And did never wish as well because she so wanted to win this fight and live. She already sent us a shooting star. We know we will always be s...

Dear Olga, Debbie and Bonni, We have lost time and I'm devastated completely about faults we have been made eventually. I was ill myself in June and quiet haven't been myself, not been able to hold track and make good decisions. Usually keen on doing what you suggest because it is right. We had a di...

Hello friends, After a while I'd like to post an update of Saskia as we had the scans and now wonder how to continue. I'm absolutely clueless at the moment. Everything still seems to be progressive. Cyber knife worked on her biggest brain met well and it shrinked. 5 more little brain Mets seem to be...

Dear Debbie and all Thanks for having us on your mind. We've been pretty busy organizing every day life but is working better and better. Saskia is walking much better now. Not completely alone.... But wonderful. Her right hand is still paralysed... We need to be patient. Sutent 25mg/d plus D, L met...

Hello and happy Sunday, Saskias's 3 sessions of cyber knife against 6 brain Mets last week are done. 1st session was 2,5 hours, 2nd and 3rd 30 min each. She has not side effects and feels wonderful and very positive. We decided against radiating the tumor Ed as there is nothing showing up there at t...

P. S. We still don't have a more detailed report about the brain Mets nor skin met removed except the fact it's asps. I also think this is ridiculous and not enough. I have the feeling that there's nothing known at pathology about testing any biomarkers of immunotherapy or anything you mentioned. Mm...

Hello lovely people I'm always so pleased to hear or read how long you guys stick to good treatment with success and love your lives and enjoy. We know how hard this is. On Friday we had all preparations for cyber knife this upcoming week for saskias remaining brain Mets. Latest update we had were 6...

Thx Olga for the reminder. We'll keep this in mind and will hopefully work out.
We'll have bone met radiation sometime later anyway which is also a second chance for combination.

Tanja

Hello We had an appointment on monday at UCT Frankfurt and Saphir Radiology. UCT recommended WBR plus boosts on visible Mets but with no further reports, studies etc for success on asps brain Mets. Decision from their side to stop growth, sometimes reduce. Nobody was aware of radiationresistable asp...

Hello you lovely people, Just wanted to let you know we are happily home from hospital since wednesday. Everything works fine. Doing physio to get more and more rid of paralysis of saskias right side and are relaxing and sleeping to be prepared for Monday to discuss radiations. Keeping thumbs up to ...

You're the only ones giving hope :( Thanks so much :) Saskia is supposed to come home on 5th and I need to order some things before like special bed, toilette and wheelchair. She s having physio and massages right now and is in good care at palliative department at the moment. Decision of Tumorboard...

Yes I saw the MRI and CT after surgery of head. Removed areas looked clean. I'm most scared of the mentioned multiple remaining Mets and hope they can be treated by gamma knife. How many could be done in one session? Is this depending on the locations? Most scaring is also that we have to fight for ...

Hello, need to be short as for really less sleep, but I'm thankful for your warm and helpful words from the bottom of your hearts. This so helps to calm down a bit in all this struggle. Surgery report is not yet written but we've been told all was successful. So I guess removed with good surrounding...