Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear all, The diplopia was gone after 2 weeks of Pazopanib treatment. Last week bone scan, CT, and MRI still shows the tumor but there is no increase in size, it it still there with almost no change in size. My onco suggest for another 3 months of Pazopanib. Bone scan result still shows same hot upt...

Dear Olga, Yes of course I brought the data and tell both oncologist about K, O, or atezolizumab but both of them said the same thing- the only available drug for this disease on my current condition is pazopanib. I even had some arguing time but in the end, if there is no oncologist prescription I ...

Dear all,

Even the other local hospital only gave me Pazopanib as the only option. No other oncologist even gave me other recommendations.
So I start taking Pazopanib 800mg every day since 12th May and will be monitored again next month.

Best regards,
Daniel D.

Hi Debbie, The diplopia itself was appeared right before neck surgery and keep worsening (before was 3m, now I see things double from 1m distance) since then. Dear Olga, I will visit other hospitals tomorrow and Monday since my current hospital only recommend Pazopanib and my onco said that no other...

Dear all, For the previous left humerus met, RFA was not possible because of the infested area is too wide after another CT scan. So another excision and intramedullary nail insertion were performed. Not my picture but the whole concept is the same: https://www.researchgate.net/publication/312455269...

Dear Olga,

Thx for noticing RFA. I wil surely ask my onco for this possibility next Tuesday.

Best regards,
Daniel

Dear all, We found other met in the middle of humerus on last week bone scan and x-ray. Resection is the best option for now before it breaks, and I will have PET and MRI tomorrow to check if there are other met and for pre-screening. My vision is stay the same but it could go blurry for 10~30 m dis...

Dear all,

Resection was done on March 2nd, they removed 13 Lt. supraclavicular lymph nodes with clear margin, safety margin at lateral 0.1cm.
The tumour size was 7*5*2 cm.
The next scan could be done around the end of this month or next month.

Thank you and keep healthy- stay out of corona.

Yes my onco didn't discredit the current clinical trial, but he didn't give anything positive about the possible outcome neither.
My hospital called today that the resection schedule could be this month instead of the scheduled next month.

Best regards,
Daniel D.

Dear all, After asking about -mab medication, my onco didn't recommend taking anything on this point. He told me to remove the mets in left collar bone lymph since the size is quite stable lately, but with no reduction. Next meeting will be on 20th next month and surgery will be performed after that...

Hi Tanja and Saskia, Is there any chance to stop the treatment temporarily to give the body rest for primary resection? From my experience and another person told me on this forum that primary removal could give the body less tumor burden and could probably slow the met growth speed. However, if the...

Hi Nhi, Thank you for the information! I know one patient who gets Ipilimumab and Nivolumab combo but still waiting for response, as during the treatment there is new met found on his spine. Don't mean to discourage the use of this drug since it could be there before. After discussing with Debbie an...

Hi Debbie, No- not really at all! Thanks for the suggestion, now I have nivolumab added on the list for adrenal gland possible treatment. The systemic treatment will be planned next January, the new met on my right skull is still small and my onco. definitely wants to remove it while it is still sma...

Dear Olga and Debbie, Today my onco found another skull mets on right side after last month's MRI. The met is still small so he recommends surgery within this month. Attached images are comparison from May skull mets and this month mets. May: https://ibb.co/4TxRKcL November: https://ibb.co/r45SM7h B...

Hi Olga, The clinical trials are not offered for me, it's just what available right now for sarcoma type cancer in here. Unfortunately, I still haven't found clinical trial for K in here, I still have to ask my onco regarding its availability. Understood about the immunotherapy compatibility test an...