Devising a Plan

Things may just be moving at my pace again. We are being fit in with another medical oncologist concerning a trial, and hopefully with an interventional radiologist to discuss doing a biopsy.

We met with Dr. Tap briefly. Due to the uncertainty of what is going on, we are pretty set on doing some sort of biopsy. If it weren’t for the brain hiccup, we would have done this a long time ago to just know what we are up against. If I not had AS, these PET findings would be post-inflammatory. With my case, you just never know.

As far as treatment, Dr. Tap isn’t too fond on doing IL-2 alone, and we tend to agree. The problem is doing any combination would be a hard sell even though we know the efficacy would be much greater. PD-1 trials are almost non-existent for AS, and if one is there (which Yale has one), the inclusion criteria (tumor expressing PD-1 ligand) are not prevalent in AS. This doesn’t mean the treatment wouldn’t work. In fact, it doesn’t mean that at all, but the trials need some sort of marker to test against for inclusion/exclusion.

With that said, it would seem targeted therapy may be the best bet for now. In the past, I tested my tumor for any abnormalities through Foundation One, and it came back with RPTOR overamplification. This is a drug treatable by mTOR inhibitors.

Dr. Taps line of thinking is to start down a trial they are having here at MSKCC which involves mTOR inhibitors. This would entail a biopsy of some/all of my worrisome areas, staining for disease, AND sending out to MSKCC labs for a more sophisticated and specific genomic testing – in other words, confirming the RPTOR findings from Foundation One.

He wasn’t against using other targeted therapies such as Sorafinib. He did state he is very intrigued in using the mTOR pathway because patients with AS have responded very well with this treatment IF they tested positive for the abnormality.

In short, we have an appointment with Dr. Gounder (sarcoma medical oncologist), in a little less than an hour. He is the PI for this study. Furthermore, we are hoping to get an appointment with an IR (interventional radiologist) specialist to decide how/where/when to do the biopsies. They know we can do them ASAP and want, so lets hope it can be done today or tomorrow. Ideally, I would like to biopsy every area of concern.

Hopefully things move quickly so please voice your opinions as soon as possible before it’s too late. This may not all make sense or seem like much, but we are at the very least making some progress in doing something..anything! Please, if you have questions, let me know.

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