Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Update, I'm starting Keytruda today. My last couple scans have shown small incremental growth in lung mets. Each scan they say about half of the mets were unchanged, and the other half grew about 2mm. Then the next scan they say the other half were unchanged, and the other half grew about 2mm. Seems...

I had an appointment with a medical oncologist at Huntsman Cancer Institute. They said the first treatment they would want to try would be Keytruda. However with the minimal amount of growth shown so far they want to wait until at least one more scan showing growth before beginning treatment. My nex...

I really appreciate everyone's guidance and support on here. It's really hard to advocate for yourself when you don't know what to even push for. It's been really helpful. I've now had a brain MRI and full body bone scan. Both came back clean with no signs of mets. I have an appointment scheduled wi...

That is the only part of my pathology report that mentions anything "lymph", and I don't see anything about LVI like in the link you provided. I looked at the thread where you posted Joshua's pathology report, and it seems that his and others may have more detailed info. Maybe the copy I h...

Thanks to the recommendations here I was able to get my doc to order a brain MRI, and full body bone scan so those are now scheduled. Hi Kyle, Have you been able to gain the full functionality with the leg use after the primary resection? It is important to focus on this as there has to be the consc...

D.ap wrote: ↑Wed May 20, 2020 5:50 pm
Ask for your pathological report , as it will tell of possible invasion and mitotic level .

What do you mean by this?

I do have a post surgery pathology report that says "Mitotic Rate /10 high-power fields: 0"

I was 36 when diagnosed, now 37. I'm currently being treated at IHC. Today I reached out to Hunstman to see who best there to get a second opinion from with my specific case, and was waiting to hear back. I appreciate the info about Dr Jones. I'll see if I can get in contact with him.

Hi, my name is Kyle, and I've recently been diagnosed with ASPS. I feel like up to this point I've been able to push my way through the system to receive treatment at a pretty quick pace, but am now starting to feel lost, and don't know where to go from here. I'm so glad I was pointed towards here t...