Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Louise - I understand that there are differences in treatment advances in different countries, but for ASPS there are very few approved treatments and it does not matter what country you are at - what matters is- if the drug available and permitted (and I am sure that big pharma companies are present in your country) and if the insurance agrees to cover it. We live in Canada and Keytruda was not initially covered for my son and we had to flight hard to get it approved for him. We even paid for two periods ourselves initially.
Keytruda and Opdivo are produced by some of the biggest pharma companies and they sell their drugs everywhere.

Dear All,

I hope everyone is doing fine despite the pandemic.

I am sharing my doctor's message to me which I received today regarding my scans yesterday:

"Hi, Centris Makati sent me the results of your PET-CT scan and I am actually very pleased with the results. For one, the forearm lesion has a much lower SUV uptake compared to the previous study. Also, your liver lesion has practically no uptake and the same seems true with regards to your lung lesions. The only problem is the retrocardiac mass. Located just behind your heart, this one increased in size. The good news is that it shows no uptake and is practically cystic rather than solid in appearance which means it is responding to pazopanib. But because it is necrosing, it accumulates inflammatory fluid and this is what causes it to increase in size. Over time, this fluid will be re-absorbed by the body and the cyst should start getting smaller. But I think its size and location are the main reason why you have been having chest and shoulder pain of late. So for now, I recommend you continue your pain meds and we can probably add an anti-inflammatory drug like Celecoxib to help control any inflammation in the area of the cyst. But overall, these are far better results than I expected."

Any thoughts?
Thanks and regards,
Louise

Hello Louise,

How big is the retrocardiac mass currently ?
How much has it grown from the time it was first seen?

It’s good to hear from you !😊

Hi Louise.
Few questions for your doctor:
- has the SUV uptake changed since the previous scan for the liver and lung lesions? The doctor might have never seen a case of the ASPS before (most of them haven't) and might be not aware that smaller ASPS mets show no SUV uptake at all
- re. pericardial tumor. Can you ask for the cardiac MRI with the contrast? That would clarify the nature of what is seen - the scars, fluid from the smaller tumor that might be there but is not showing etc. The heart would need to be evaluated. If this is a fluid it might be drained if needed but they should be prepared to do so if it increases in size, so if they knew it is a fluid for sure they would be better equipped to treat any possible complications. In case they are unable to perform the cardiac MRI, the simple ultrasound is also a source of the information.

D.ap wrote: ↑Tue Aug 18, 2020 9:09 am Hello Louise,

How big is the retrocardiac mass currently ?
How much has it grown from the time it was first seen?

It’s good to hear from you !😊

Hello Debbie,

It is now 3.8 x 5.4 x 4.7 cm from 2.8 x 3.4 x 2 cm.

Thank you!

Olga wrote: ↑Tue Aug 18, 2020 2:56 pm Hi Louise.
Few questions for your doctor:
- has the SUV uptake changed since the previous scan for the liver and lung lesions? The doctor might have never seen a case of the ASPS before (most of them haven't) and might be not aware that smaller ASPS mets show no SUV uptake at all
- re. pericardial tumor. Can you ask for the cardiac MRI with the contrast? That would clarify the nature of what is seen - the scars, fluid from the smaller tumor that might be there but is not showing etc. The heart would need to be evaluated. If this is a fluid it might be drained if needed but they should be prepared to do so if it increases in size, so if they knew it is a fluid for sure they would be better equipped to treat any possible complications. In case they are unable to perform the cardiac MRI, the simple ultrasound is also a source of the information.

Hello Olga,

These are my worries too. By the way, I am currently in contact with the NIH regarding their Atezolizumab clinical trials. Any thoughts on this?

Thank you!

Please find out exactly if the SUV reduced for the liver and lung lesions or it was low to start from - you need to know exactly what is going on with your treatment, if it works at least now by reducing the metabolic activity of the tumors, it often precedes the reducing in size. Basically since you have started the TKI treatment already, it would need to be proven ineffective before you are accepted in to the trial, at least it is usually the case and in your own interests to use the option till it works and then to proceed to another. Besides there is a mandatory wash out period before you enter any trials.
Atezolizumab trial is a good option, see their inclusion criteria re. previous lines of treatments time reqs.