Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Very meticulous thoughts, Olga!

Hi Sam and Olga,
Steroids may not be needed if the brain swelling is not fierce and have the side effects like headache, dizzy or sick. And as to my experience and the experience of other Chinese patients, mets small like this wouldn't cause much side effects after Gama Knife.

Lynette

Hi, It's really been a while since my last update! Thanks Ivan, Debbie and Olga for answering for me. George is lucky, he is doing very well since stopping Keytruda in Apr 2016, after totally 7 dose (8*100mg, 200mg at the first time). He just had the latest scans half a month ago--chest CT and head ...

Mikko,
I'm sorry for your lost...
Jussi is such a brave and proactive fighter. He will be missed...

A case of PD-1 targeting drugs + radiation of A Chinese patient. Here is the info of this case: before PD-1: lung 6cm, Liver 5+cm, pancreas 6cm Best response: Lung 0.7cm, Liver 1cm. Developed resistance to PD-1, Oct ~Dec 2017: lung 20% increase. pancreas 5cm (intensity modulated radiation therapy, 4...

Yes, I know Fuda hospital. George had 2 cryoablation there. Dr. Niu is director of that hospital. They have rich experience of brachytherapy as well. If you're going to consult him, ask in what degree can the met be ablated--completely or like 70%. There was a dangerous complication in the course of...

Hi, George did had brachytherapy to the lung mets, but the mets were less than 2cm. If your mets are 4cm, that means it need 8 times of the seeds than the 2cm mets! So the radiactive damage is a big concern. Many Chinese patient have Cyber knife to treat the lung mets, most of them get radiation pne...

Hi Jussi,
I recall radiologist prescribe some kind of cream to use on the skin before radiation, but I don't know the exact name. You can ask your radiologist or dermatologist for it and prepare for how to protect the skin after radiation.

Good luck,
Lynette

Such a great news! We're so happy for you!

I'm so glad to hear there is no progression! Happy for you! As for the scan accuracy, it is complicated to non-professionals. I try to learn about the resolution of the MRI scan, but still not very clear about it. My concern is if the regular scans are done in high resolution (thin slide thickness a...

Hi Jussi,
I'm very touched you're so brave and determined!
I wish with the success of the 2 surgeries, the doctor will be more open to the positive treatments in the future. And this will help you very much to contro the desease.

Wish you a speedy recover!
Lynette

Hi Jussi, Agree with you that the mandibular met must be treated soon or the problem will be harder. Have you consider Cyber Knife for the mandibular met? Seems like your treatment schedule would be very tight. The brain mets need to be treated ASAP to reduce the side effect from Gama Knife. And you...

Glad to know the surgery went well.
Wish you a speedy recover!

Sorry to hear about the progression on the treated met.The neurosurgery must be scheduled soon, or the regrowth can be very fast--My huasband experienced regrwoth from a failed Gama Knife treated met before. The met grew from ~1.4cm to over 3cm in 2 month. I'm shocked to see "doctor already men...

Jussi, I understand you concern and I would be very anxious in your situation. If you're determined to do the SRS, do you consider the hospital in China? China has a great polulation, so the doctors here have much experience with some radiosurgery--Gama Knife and Cyber Knife. If you're interesting, ...