Cure Alveolar Soft Part Sarcoma International (iCureASPS)

First gamma knife —- 2 areas where tumors excised and 2 more small ones
Second——- 3 small ones
Headaches, Drs saying may be from the radiation, losing hair at areas of treatment, otherwise doing pretty well

Good to hear of tolerating the gamma knife treatments.
The docs discussed the possibility of brain inflammation and how to let them know of headaches that are intolerable?
The brain is a relatively small area that doesn’t adapt to the side affects of radiation, ie swelling . With that being said , seizures can happen if the swelling isn’t under control.

Is your daughter on any steroids to reduce cranial swelling ?

She has been on steroids, thanks

After 2 cycles of Tamador they did scans and the abdominal tumors have increased significantly, now the plan is to start Doxil next week —- anyone have experience with the efficacy of Doxil with abdominal and pelvic tumors ?
We are at a point where we are searching for something to work. Thanks

Hello
If the goal is to stop progression I’d personally suggest immune check point inhibitors.
It sounds like your daughters immune system is not at a level to fight the metastatic spread that is apparent in your daughters body .😞

Hello
If the goal is to stop progression I’d personally suggest immune check point inhibitors, as has Olga previously.

It sounds like your daughters immune system is not at a level to fight the metastatic spread that is apparent in your daughters body .😞 the doxi will cause only more immune suppression .

Olga wrote: Sun Dec 11, 2022 12:02 am I would advocate going back to immunotherapy. It is often effective after the restart. Egg harvesting procedure is done on the pretty high hormone dose and that might have been the reason for the following progression and reduced sensitivity to immunotherapy treatment. As the hormonal level is back to normal now, immunotherapy might work again. Find out what immunotherapy drug she had before, let us know. Evaluate that 5cm near kidney met, if it is in the adrenal gland. What country are you from?

The plan has now changed and rather than Doxil, they want to start Yondelis, which is given as a 24 hr infusion, it has been used with leiomyosarcoma —- is anyone aware of its use with ASPS ?

Hello Illini
What are the oncologist giving you in the way of studies to suppport the use of yondelis for your daughter ?
Has a molecular profile been performed on the primary removed ?

Immunotherapy in soft-tissue sarcoma

“At a median follow-up of 14.7 months, the 6-month progression-free survival (pfs) was 47% (95% confidence interval: 29.2% to 62.8%), and the 12-month pfs was 28%. Best orr was 25%, demonstrated in 8 patients. Of those 8 patients, 6 had asps; an orr of 50.4% was demonstrated in the 11 evaluable patients with asps.Feb 1, 2020”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7050043/

Thanks for the Journal article, when the primary was removed from her thigh 9 years ago no molecular studies were done.
We are speaking with the Oncologist Tuesday about Yondelis, given the rarity of ASPS I don’t expect there will be any studies specific to ASPS , maybe some use in sarcoma in general, although we know sarcomas are different
Again thanks for the info/ comments

Illini,
Atezolizumab has been fda approved for ASPS as of December of 2022.

https://cureasps.org/fda-grants-approva ... t-sarcoma/

Thanks, she started her first infusion of this on January 30, we’re hopeful

Illiniparent,

Thank you for checking in.
We are all so hopeful as well. ❤️

Please read Olga’s and Ivan’s post , on increasing the success of the immune check point inhibitors.

https://cureasps.org/forum/viewtopic.php?p=13425#p13425
Please keep us posted .

Unfortunately she now has two new brain tumors, one of which is causing a midline shift, the plan is surgery, followed 2 weeks later by resuming the chemo, which is hopefully going to shrink the abdominal tumors and then radiation where the brain tumors are going to be removed, her left upper extremity is not functioning well, the neurosurgeon thinks it is due to the brain tumor, MRI on shoulder is today
She remains the only patient at this tertiary medical center that has ASPS.
We are getting to the —- we’ll try anything stage

Illiniparent,
I'm sorry to hear of the additional brain tumors.
Is your daughter still on Atezolizumab ?
Wasn’t sure “the chemo “ you were referring in your above post .
Is your daughter on steriods for the midline shift ?
Please be mindful that sometimes performing minimal treatments is sometimes better than trying anything.
I totally understand the sense of urgency especially with brain Mets appearing.
Hugs coming your way.

Love ,

Illiniparent,
may be after the local treatment are done and she is well recovered, she might try Keytruda (pembrolizumab).
Although it is the same class of the immunotherapy as the atezolizumab, it is a less specific one and there are the cases when one works when the other wouldn't.
Ask for a referral to a place where they see more ASPS cases.