Cure Alveolar Soft Part Sarcoma International (iCureASPS)

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 mets in the lu...

Seems you’ve had great response so far but I would agree to maybe plan to remove the primary tumor? Maybe they can do some RT to it as well to shrink it even more and help the immunotherapy work better at the same time before removing it. Olga has already discussed the resistance issues which is ve...

Absolutely. I had hundreds of metastases at some point in my lungs and I ran without any issues. They were always asymptomatic.

Cardio should improve immunotherapy outcomes.

The report shows the lung nodules are still there, but have not grown or shrunk in size since the last CT from 3 months ago. Any ASPS metastases which are slowly growing will be "stable" over a 3 months time period. Over a 1 year time period is more interesting. You should request the rad...

Ivan, Your progress is amazing and so glad to hear all scans have come back with no concern. What an amazing feeling that must be. Thank you for keeping us updated, it gives hope to those in the thick of it. It's been a long road. Your odds of making it today are so much higher than 18 years ago wh...

Well, I need cortisol to rise while I'm asleep and I can't readily accomplish that. My sleep has been improving and I hope it to be back to normal in the next few months.

Hi all, My oncologist decided to hold off on referring me for cryoablation last time. The plan was to change systemic treatments if the lung Mets are still growing during these scans. I am happy to report that I just had 2 month scans a few days ago and for the FIRST time in almost 2 years, there i...

Hi Ivan, Yes non enchancing, and no bloodstream but this is only ultrasound. I will see another doctor tomorrow and will also ask for MRI ASPS is very vascular, so.. I'm not sure if the MRI will give any actionable data. If it can give a higher resolution in soft tissue (it very well may), you can ...

Hello Regarding the comparing scans since the start of my control scans I talked with the radiologist and the result is the same she claims that she does not see any visible growth or change in these 2 nodules. When I asked why the difference in size in some results, she said depends on the magnifi...

Hello Ivan, Truly glad to hear of your scan reports ! Do you feel the lymph node is probably the result of the Addison’s disease ? How hard is it to control your cortisol levels ? I’m sure glad to hear of your feelings of the worst is behind you.😊 Take care . Love, The only real issue is replicatin...

Hello, ASPS friends The last round of scans MRI: brain, cardiac, abdomen and CT: lungs were completed in January-Feb. I have now received word that everything is excellent, and there are no concerns. There was a note on the CT scan about one enlarged lymph node in the mediastinum, but it's not conce...

So an update on the second generation of immunotherapy. A reminder, you need subcutaneous lesions to be able to do this treatment https://i.imgur.com/ao1Id7Y.jpg The data above is for melanoma. I highlighted the important parts above. I am not aware of anyone with ASPS having tried this, but if I ha...

Thank you for sharing this wonderful and VERY good and encouraging news dear Ivan :) Brittany is also on a four month schedule for her chest/abdominal pelvic scans which she just had done yesterday at SCCA in Seattle since she can't go to Edmonton for her Clinical Trial scans due to Covid. She is c...

It's been a pretty good summer for me. The latest abdominal & pelvis + brain + lung CT are NED. The heart tumor is now reported as 1.1 x 0.9 cm on the cardiac MRI, which demonstrates a slow but steady shrinkage since I stopped Pembrolizumab. I intend to reduce the scanning intervals a bit from 3...

I had mild symptoms of adrenal insufficiency back in the summer of 2017 for sure (ie postural hypotension, a symptom of insufficient Aldosterone). It is not at all clear whether my adrenal problems are ultimately caused by immunotherapy or not. Either way, it's a tricky thing to manage. For example,...