Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thanks for the info, I just found an article that says Anlotinib crosses the blood brain barrier:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7216446/

Hi Debbie, I just checked my genomics testing report and I see that it did test for the EGFR - mine is not elevated. I've never performed a blood biopsy, that sounds interesting and I will check with my oncologist about that. They did a lung biopsy and confirmed it was ASPS. May I ask where your son...

Hi Debbie, no problem happy to help. I stopped taking Axitinib at the end of 2021. I am not familiar with how long the wash out period needs to be, that needs to be consulted with the Radiologist. When I got the procedure done, it has already been so long since my last treatment that the wash out pe...

Hi Debbie, Yep I've been in touch with Ivan. The procedure was high dose brachytherapy. For the bigger tumor, they left the radiation catheter in the tumor for about 25 minutes (they used 1 radiation catheter for the procedure and placed it in the middle of the tumor). I was conscious the whole time...

Hey guys, wanted to give you an update. I did some "CT Guided Brachytherapy" procedures to remove 2 tumors that were located in inoperable and troublesome places (one by the heart which was 3 cm, and another one by an artery leading to the heart also 3 cm). My experience has been great, qu...

Hi Jack, Seems like your lung Mets are growing slowly at around 1mm a month on average and did seem to be slower growing after the addition of axitinib. My thoughts are if it is too soon for you to give up on Pembro and axitinib since you have been working on lifestyle changes which may then allow ...

Also from my understanding, your case of Keytruda starting to work after 9+ months into treatment is statistically rare.

Hi Jack, Seems like your lung Mets are growing slowly at around 1mm a month on average and did seem to be slower growing after the addition of axitinib. My thoughts are if it is too soon for you to give up on Pembro and axitinib since you have been working on lifestyle changes which may then allow ...

My primary tumor was pretty big (located in my lower right back). It was 5.8 cm x 4.7 cm x 8.4 cm Yep I am almost 7 months post surgery, and 6 months into Keytruda. But I've only taken Axitinib for 3 months. The 2 largest tumors grew by ~40% when comparing the first PET-CT to the second Regular CT ...

Hi Jack thank you for the update. Perhaps your oncologist should revisit the idea of trying to trigger the immune response by some local treatment to one or few bigger lung mets - radiosurgery, cryoablation. You need to start treating them anyways as they grow. Ivan had to have 5 open lung surgerie...

July 2 2021 “Hello, I'm Jack from Los Angeles. I was diagnosed in February of 2021. Had surgery to remove the primary tumor from my lower right back at the beginning of March. Tumor size was 5.8 cm x 4.7 cm x 8.4 cm. Lucky MRI from March showed no visible mets in the brain yet. There are a lot of m...

Sooo I've just had my 2nd CT Scan, here's my timeline and latest update: March 03, 2021 - PET CT Done showing mets in the lungs. April 08, 2021 - Started Pembrolizumab 200 mg, once every 3 weeks June 22, 2021 - Regular CT of Chest and Pelvis showed the tumors grew in size compared with the PET CT do...

Did the oncologist get back to you about a radiation target? The idea is to stimulate PD-1 response. This is the best long term strategy. Ya I asked my oncologist about that, he said he doesn't think it's a good option because generally the success rate for radiation induced PD-1 response is small.

Hello Jack , Welcome . 😊 I was reading your introductory post and was wondering if your primary was considered to of been located deep in your lower right back area .. were ribs involved or where was the primary tucked into ? What kind of symptoms alerted you to the tumor being there? Are you recei...

Jack, you are doing great esp. in physical activity! But what is the rationale for giving up the coffee? Coffee, tea and chocolate - they all contain very valuable polyphenols - such as catechins and chlorogenic acid etc. with the longer antioxidant activity for coffee, followed by the cocoa, green...