Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Jussi Aro
30.3.1991 - 23.8.2019
R.I.P.

Last time culture was taken infection was basic moth bacteria. Cant treat, that without collateral damage.

So any positive experiences with probiotic supplements and or jogurt after or during antibiotics course would be helpfull.

So had to had iv-antibiotics for my jaw. I am not very optimistic, that expensive jogurt would help my gut microbiome heal faster. My dad strongly disagrees.

Antibiotics gonna be 2 weeks -2 moths after almost half of my mandible was resected. After that chances of my immune system recognizing cancer again are low. I had to re-start cediranib already as my dad was worried about brain swelling well subcutaneous met started shrinking immediately. Most likel...

Well edges of the tumor received less radiation than center. In theory even if lower edge and upper edge received same dose it is possible, that cells in upper edge of the tumor survived, while cells in lower edge died. I was using cediranib, one dose of opdivo and one dose of avastin during radiati...

Few weeks ago my dad tried to scrape of necrotic tissue himself (dentist) if it would have been living asps I would have bled a lot. I hardly bled at all. So at least middle of the tumor is dead. But in theory there might be living tumor higher. Interestingly this tumor wasnt visible when radiation ...

Need surgery to remove necrotic tissue ftom manidibula. with this comes doxycycline 100 mg a day.

Well my breath smells bad (not as bad as my brother`s but still bad. )Well mucositis naturally smells bad. And there is huge hole where I had radiation. That hole will naturally collect all kind of crap. My dad is very scared and wants to start antibiotics. Luckily dental surgeon disagree with him. ...

first I had traditional radiation, because met was too close to surface of the skin to be targeted by stereotactic radiation. This most likely failed to achieve abscopal effect. So early this year I had stereotactic radiation for mandibular met and based on my other subcutaneous met this time abscop...

There was member here, who had amazing success with cryoablation continued with keytruda. I think it was George from China. So cryoablation is good option for abscopal effect.

Second option might not be less aggressive, than first one. If they radiate larger area smaller radiation dose might actually do more damage than little higher dose for smaller area. It is most likely impossoble to kill all cancer cells in bones with radiation alone, so getting immunesystem to regon...

This was in private hospital. That couldnt have worked in public hospital.

(Sorry I think I accidentally wrote 9 gy 4 times, when dose was 9 gy 3 times. I corrected that already.)

This is difficult question. For abscopal effect I would use 6-8 gy fractions 3-5 times. So 9 gy 3 times is little high dose, but 5 gy 4 times little low, but there is no definitive answer, to what dose is ideal and starting to agrue about wanting 6 gy instead of 5 can just pointlesly irritate your d...

I am more or less in hospice again. Immunotherapy wasn't working based on scan early this year. Cediranib is continued, because it gets my blood pressure and heart rate normal. So basically I am hoping for abscopal effect, from radiation to mandibular met to achieve miracle cure.