Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Debbie,
Yes, that's the trial, precisely. It scares me.
My cough, no significant unproven bent. My breathing has improved somewhat.
Miranda.

Hi Olga, So, I send scans to Dr. Aoun and although I've not spoken to him, he related recommended that I see Dr. Littrup as he has an ASPS trial going on...Abscopal 5001 its called. Basically, abating about 10% of tumor in say 3 sessions, each time, also injecting acocktail of keytruda, yervoy and a...

That's great. I already signed a release letter for them to pull my records. My oncologist is okay with it too, which makes it less stressful. I hope I'm a candidate for the procedure.

Hi Olga, I did call his number abs all the prompts, irrespective of which I selected cut the call. I'm waiting for Dr. Aoun's office to contact me on consent to pull files. Hi Debbie, Thanks for the review in Dr. Aoun's work. I feel better about getting in touch. I'll let you know when I'm contacted...

Hi Olga, I'm still on K&A. I did make the unbridled contact with Dr. Hussein Aoyn's office. Yet to discuss this with my oncologist, so we're on the same page regarding this. I'm curious though as to what happened with Dr. Littrop. Heard he's with Ascension in Michigan, but could not get a hold o...

Thank you for the history with Josh, Debbie. I'll request the consult with Dr. Auon. I also want the nodules ablated if possible. The surgeries were VATs and the right was robotic. Yes, it was smaller prior to surgery. I think the biggest of them was about 1cm. Three were removed from right lung and...

Hello Olga and Debbie, The scan was done on 3/18/22. Radiation ended 12/7/21 and a week later, I added axitinib to keytruda, after a 6 month hiatus( had to stop axi for 6 months prior due to lung surgeries). So, it was 3 months after Radiation and the start of axitinib that the scan was taken. There...

Hi Bonnie, Did cryoablation kill Brittany's lung mets? I have a 1.5cm lung met that's growing and 2 others, below 5mm that are stable. I'm on keytruda and axitinib. Currently looking at radiation to the largest met and starting on treatment, or stopping treatment and going on anlotinib trial. I'm wo...

Hi Debbie, No worries. I don't mind the questions at all. The primary was under 5cm in the right thigh. Was removed in 2017 prior to identification as malignant. It was radiated, tumor bed resected, and again later due to infection. It's been clear ever since. The radiated tumor is at the very top ...

Hi Debbie, No worries. I don't mind the questions at all. The primary was under 5cm in the right thigh. Was removed in 2017 prior to identification as malignant. It was twisted, tumor bed resected, and again later due to infection. It's been clean ever since. The radiated tumor is at the very top( a...

Hello Debbie, Olga...any admin or ASPS worrior I had about 4 visible lung mets from a November scan. All other areas are clear so far...brain, original met site(thigh) etc.. Did radiation(SBRT) of a 1.9cm nodule. here are March scan results post radiation and back on keytruda/axi A 1.9cm one that wa...

Thanks, Debbie, for an interesting read. So, is there maybe benefit in dropping some sodium bicarbonate in water to neutralize ph?

Hi Debbie,
I found this article very interesting. On my 4th SBRT treatment and have a pembrolizumab infusion the day after the last radiation. Hoping for this effect on my immune system's efficacy.
Miranda.

Hi Debbie, From my experience, after having surgeries to both lungs(robotic and VATs) 7 weeks apart, I was on O2 for almost 2 months post second surgery. 3.5 months post first surgery, I still feel tightness in my chest, stabbing pain from time to time on incision sites. Itching is common. I can onl...