Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear Olga, Thanks for following up - what you say all makes sense. Trying to control the bone met (13cm long) with cryotherapy would seem difficult though, and radiation is not an option anymore. Elisa did start the Nivolumab + Ipilimumab combination and has received three rounds so far, which she i...

Thanks, Debbie.
The latest MRI was compared to an MRI from last year (we know that comparing CTs and MRIs would be difficult!).
Johannes

Hi again, Quick update: radiotherapy is not a good option, because the area where the growing lung met is has already received a lot of radiation, so the risks would be too high. Moreover, the lesion in the femur has grown as well (visible on the MRI that was done last week, not on the earlier CT). ...

Hi Debbie, Thanks for your prompt response and encouraging words! I don't think the lung met could be surgically removed (probably too central and close to the heart). Elisa did respond well to the obviously a lot less invasive stereotactic radiotherapy in the past, so in principle it would not seem...

Continuing here: https://cureasps.org/forum/viewtopic.php?f=83&t=2082

Hi everyone, Here is another update about Elisa. Last year was difficult: Elisa had been off treatments for almost a year, and since some of the tumors had slowly started to grow we were thinking about the next possible treatments. Then she had a cardiac arrest caused by the metastasis in the heart,...

Makes sense - thanks, Olga!

Hi Olga, Elisa usually has the blood tests every three weeks, which is why it was easy to figure out that there was actually a sudden drop of the hemoglobin levels. She has already received a lot of radiation therapy to the thigh/femur, and it's pretty clear that more won't be possible. Or were you ...

Hi, Just a quick update to share the good news that the surgeon managed to remove the tumor with negative margins! Otherwise, Elisa still tends to get more migraines than before the surgery (Debbie, to respond to your question: it's true that she has not had an MRI of the brain in a while, but the s...

Hi Olga, Thanks so much for your prompt response and for sharing your opinion - very useful, as always. Elisa underwent the surgery about 10 days ago; it became clearer and clearer that this subcutaneous mass had to come out. The surgery seems to have gone well. Although the incision was fairly larg...

Hi everyone, Here is an update about Elisa’s continued experience with Pembro + Axitinib. She has been doing well overall, with basically no side effect, but the last scans unfortunately showed a mixed response. The fairly good news is that the three lesions in the lungs are stable (or have perhaps ...

Hi,

In fact, we are not thinking about this trial at the moment. I just came across it, and since it specifically mentions ASPS (which is rare), I thought I should share the link here.

All the best,
Johannes

Is anyone aware of (or even enrolled in) this trial?

https://www.clinicaltrials.gov/ct2/show ... w=2&rank=1

Thanks for your tips, Ivan! Re 1) Trying our best - as vegetarians, we eat lots of legumes, vegetables, whole grains, nuts, seeds, etc! Re 2) 1000 IU per day. Re 3) Aware of the importance of lots of sleep (and it usually works...). Re 4) Aware of that importance too; with the leg being better, Elis...

This is not someone who has posted on the forum (as far as I know). But since we seem to be a bit short on real success stories these days, here is the link to this encouraging case report in the publication section:

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