Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thanks for the replies, I will try to give the updates more frequently! However life is keeping me busy and it's also nice to have a sort of vacation from being busy with the disease..;) I visited the forum a couple of times last two years, so I was a bit aware of the good results of the PD-L and PD...

It's a long time since my last post so I thought it is time for an update:) I did the ILP to the primary tumor in the leg in January 2016. I got an MRI for the results of the ILP a couple of months later. The MRI scan showed that the tumor activity was very low. I also could feel that very well, the...

Hereby an update from the investigations done last weeks. Unfortunately Dr Rolle thinks it makes no sense to resect the lung metastases. Also if the primary would have been removed he thinks there are too many spots in the lungs. The two biggest sport in both lungs should have been removed by lobect...

@Olga, I just send my latest CT-scan to Dr Rolle, he was willing to look at it, so I'm curious about his opinion! My current treating hospital is LUMC in Leiden. I will check the possibilities in Erasmus MC. Furthermore I think I'm going to ask for a second opinion in AVL Amsterdam, recommended by M...

Unfortenately I got bad news from the surgeon, they think it is to risky to resect:( Espescially because of the nerve and the bone. And they think surgery without resect everything is not a good option because of possible faster growth after the surgery and worser healing of the wound. Cryo-ablation...

Thnx Debbie. Another question is the use of radiation before surgery, the surgeons (and other specialists) are thinking about that. I saw some topics on that on this site, with not so much responds:) Is there any experience about the effect of radiation of the primary? Furthermore my onlologist will...

Hi Debbie, The surgeon is indeed an oncologist, he is a specialist in bone and soft tissue sarcomas, so I think he seems the right surgeon. However he never treated someone with ASPS. We didnt especially talk about the vascularity, do you mean he has to be aware of bleeding? We didn't talk about ret...

This morning I had the first meeting with the orthopaedist. He told us about the risks and the profits from a resections of the lump in my thigh. The lump has grown around a big blood vessel and is lying next to an important nerve. Also it has grown against a bone. Resection is a possibility, but th...

Thnx for your reply Bonni Hess, it gives me even more the conviction that I have to remove the primary. The maximum diameter of the primary is now measured to be about 10 cm. It has increased with about 2 cm in the last two years.

Thank you all for the useful advises! I will propose it to my doctor. And I'm going to send the scan results to dr Rolle. I'll keep you updated about further developments.

Hello, my name is Willem, 28 years old and I am from the Netherlands. Two years ago I went for the third time to the doctors with my lump just above my left knee. The last two times they told me it might be a lipoma. They didnt get me as concerned that I went for further research (I had to plan it m...