Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Cass, as I understand the biopsy was taken from the suspected primary tumor in the abdomen, from the right iliac fossa. Who is your oncologist? Dr.Simmons is Ivan's oncologist there and we like her so far, and the decision to start Pembrolizumab is a very reasonable one. We had to fight to get Iv...

Thank you for an update. The understanding of your situation improves. It seems that the location might be an issue with the radiosurgery. The advice to wait till May and rescan is reasonable. The best size for any ablation modalities is between 10 and 15 mm, large enough not to miss but small enoug...

Hi, thank you for an update. Acute immunological toxicities are signs of the overreacted immune system and usually when the patient on immunotherapy gets to this stage, his immune system is able to find and kill sarcoma cells all over the body. Ivan's immunotherapy was stopped 2 years ago by the sam...

The article is about the neutralization of tumor acidity not the body acidity. I personally have no idea how to lower the intra-tumor acidity.

In general radiosurgery has excellent results in small ASPS tumors. The same as the cryo or surgery, when done by the very experienced drs using the best technology in their chosen field.

Saphir in Germany, they do a radiosurgery, high end, dedicated. They do not do cryo. One cryoablation should not complicate the following surgery if needed, but with the cryoablation you should be very careful to choose the right doctor. One of the most dangerous complications of the cryo is pneumot...

What about cryo dr? Try to find a good one in the area, skilled in lung ablations specifically. Just to have one more opinion on hands. Basically you need to find out if this growing met location would allow to ablate it easily. I would not leave a growing met untreated, regardless of what oncologis...

https://cureasps.org/forum/viewtopic.php?f=76&t=1482&p=11514#p11514 but it comes at the cost of the significant toxicity for some ppl such as autoimmune effects. But surgery also damages lungs. If you have a surgery first, it is unlikely they will give you Keytruda before there is any progre...

We usually evaluate multiple options with Ivan and the choice is very stressful because there is no real answer to many questions. Dr.Rolle told to us in the beginning that this is a chess game, you need to think very hard over the next move and how it affects things down the road and how not to mis...

to add more questions for Dr.Drewes: 1. If he is planning to remove this one growing nodule during exploratory VATS surgery, using laser, does he expect that its histological structure will be preserved well enough after the laser? Usually it burns the tissue to a point it evaporates. 2. Are there a...

Is this the cost for the video-assisted laser-assisted metastasectomy that he proposes now, to remove one met?

Everything about ASPS is traumatic. Any cancer diagnosis and treatment are traumatic. But I have to say that ASPS has its advantage, as it usually gives us a time to find the tool to destroy it, and in your case it grows slowly and it is a huge advantage. Your case looks to be very different from Iv...

Our contact at Saphir was dr. Oliver Blanck, but he is the lead physicist there, not the med dr but you can ask him, he is a very kind person oliver.blanck@uksh.de ask Tanja, she is the mother of our late pediatric ASPS patient Saskia for more info she was there. https://cureasps.org/forum/viewtopic...

It seems that Dr.Drewes is not sure the nodules are ASPS and want to get the firm proof before subjecting you to a full size thoracotomy. Which is a very painful surgery. What size is the biggest one he can see (the one that grew?). Can you copy-paste this part from the answer. How expensive is it. ...

Tanja, your offer is very generous. But perhaps it is not safe to post your e-mail in open and instead ppl should contact you via Private Messages option we have on the board.