Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hey all,
I just had my scans last week and I am happy to report that despite being off Axitinib since 4 months nothing changed, no new mets or growth (even some regression in the irradiated lung met). So we decided to stay off Axitinib and also start with 6 week intervals for the Pembrolizumab next ...

Hey Debbie

The mutation my sister has is the UGT1A1*28/*28 instead of the *6 variant, though both are loss-of-function mutations I guess.

For my sister it was a blood test and they sent it to the lab, no idea if there are other ways to test it.

Quick update about my latest scan reports:
Everything is stable, so I am allowed to stay off Axitinib. Only the irradiated lung lesion/fibrosis/inflammation grew which was expected (~6x2cm).

Also my sister was diagnosed with a germline UGT1A1 mutation (Gilbert's syndrome). I also had a somatic ...

Hey, another short update before my scans in one month.

I talked to my oncologist about the Axitinib therapy and they were actually surprised that while on therapy I never had a measurable response. The tumor board mostly checks radiology reports which never really mentioned explicitly which tumor ...

Yes

Hey Debbie, this is the one that was resected in September. It had a size of 31mm.

Hey, another update. I had new scans after 4 months and the results were kind of mixed. So the brain is mostly stable except the left occipital lesion seems to have grown just a bit (<1mm). This is the same one that showed growth together with the large necrotic one.
Also the MRI showed a lesion ...

Hey all,
I had my 3-monthly-scans and most of them came back fine. Only the suspected radiation induced inflammation in the lungs grew slightly. The other scans didnt show growth or any new mets. They also did another MRI of my leg, but the lesion was still the same as two years ago.

In November I ...

Hey Debbie,

my bilirubin values are in the norm, usually around 0.2-0.4 mg/dl. And no, not that I would know.

Hey Debbie,

yes it was pretty weird to be sent to the ER without any specific reason 😅 I was also researching about the possibility of LITT, but iirc it can cause an increase of the lesion of up to ~300%? which would have definitely been too much for my 3cm lesion, but maybe it will be an option ...

Hey everyone, it has been a while since my last update. I have been on Pembro and Axi for over one year now and the response has been mixed.

The 3- and 6- month update scans showed one new brain met each (~5mm) and both have been treated with SRS. Also the nodule in the lung increased by about 1mm ...

Hey, just wanted to give a quick update. Last scans revealed two lesions, one in the right lung and one in the brain. The one in the lung was a pre-existing node that showed a growth of about 2mm (so now ~4mm) and the one in the brain was a bit bigger, 8x7x5mm in the left frontal lobe. Unfortunately ...

Hey Debbie,
thank you for your wishes :)
My oncologist told me I should recover from my cold that I have right now and just start axitinib after that.
I can't tell you anything about the brain tumors, as I did not have any scans for them so far, they decided to just go with my regular schedule and ...

Hi all,
I have had discussions with my oncologist the last few weeks regarding the possibility of pembro monotherapy and the side effects of axi/pembro therapy. She understood my concerns and consulted again with the head of the sarcoma center. However, she also concludes that combination therapy is ...

Hi Olga,
thank you, this forum and all the members contributions have made it much easier to dive into the important points of the disease.
Yes, I am aware of it, also psyllium husk looks like a great addition. Judging by a quick search it looks like it is increasing those bacteria cultures that are ...