Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello, Hope everyone is doing good.Just wanted to update on my treatment changes.So basically I had my MRI Brain and Bone scan in July and they came out clear.But the CT chest post VATS showed multiple nodules including some new tiny mets.So the VATS didn’t give the outcome we were expecting and sys...

Yes the MRI is with contrast

Thank you Debbie. Im doing better.The incision under my armpit still hurt at times.Im trying to walk at least a mile daily but walking fast still does make me short of breath.Hoping it gets better with time. I had one question regarding MRI Brain and Bone scan scheduled for same day.Actually they ha...

Thank you.Had my VATS 10 days ago.They made 3 incisions and well it was painful initially.The discomfort,pain,shortness of breath all occurred and still does at times.They tested the mets and came out as expected i.e Asps.Now Im gonna see my oncologist after a month,after the CT scan,bone scan and M...

Hello, Its been a while that Im off social media and also treatment.Basically,I had no new updates except of being off treatment and waiting for VATS.I asked all the questions discussed on my thread regarding VATS.The surgeon,oncologist and Dr Breelyn all recommended having these mets remove surgica...

Hello, Glad to hear from you.Yes,I’ve been referred to a cardio thoracic surgeon at UT Southwestern as Im living here in Dallas.Will see him next week and ask all Dr Wilky suggested VATS for that met considering it’s location(lower left lobe).As it will resect more precisely,if the location was not ...

Hello, So I met Dr Breelyn Wilky finally.What an amazing lady,so compassionate.After seeing all things,she suggested that I should get VATS done for that 1cm met b/c of it’s location.It’s in lower left lobe which she believes can be easily resected.While ablation might damage more area of lung.After...

Hello, Hope everyone is good.I know it’s been a long time here.A lot of successes for fellow asps warriors n some losses too.Well,as known it’s been 6 years that Im on Votrient(tki),which had been showing stability.But a lot of things changed meanwhile.Well few ppl might know my journey but would ju...

Hi everyone.Hope you all are doing good. Sorry,just had been off this forum due to my dad being hospitalized.Well I had my yearly bone scan,MRI brain is due next week.Well the bone scan didn’t show bone metastasis thankfully but it states mildly increased uptake in my surgical site.Basically last ye...

Thank you Nhi.I read about the unfortunate new mets found in your scans.But I hope that the keytruda bring good news for you and show great shrinkage.
Well yes for now I don’t have any other option except votrient so Im on it.However,you know that the side effects disturb me a lot quite often.

Hi, So my Ct chest+abd+pelvic scan showed stability.Surgical area is clear.The lung mets are present though and didn't show shrinkage like last time but also there isn't any growth anywhere thankfully.The lung mets measure the same size except of 1 met which decreased like 1 or 2 mm max.I'll send th...

Thank you all three of you for explaining well like always.I got the immunotherapies vs other treatments different aspects now.The unavailability of immunotherapies in my country is such a dilemma which keeps me at risk of shortage of treatment options.Thats why I keep trying to learn more about the...

Hi Nhi.Just read your post today after posting the exact same issue on asps fb group.Our situation is quite similar being on targeted therapy.Yesterday,on my visit to oncologist.He said exact same thing that votrient is working and showing stability but surgery can give me a chance towards cure.Even...

Thank you for the information.Baiscally,just like immounotherapy,cryoablation is also not available in pakistan.But RFA is available.Well I did see this link of Seth and the cost he wrote is gonna be too expensive for me.You guys have an idea that other than disease,money has to be managed too.I wil...

Hello everyone.Sorry for being late in updating as I was travelling back to Pakistan.Well the CT (chest+abdomen,pelvic) showed stability.Thankfully there is no new growth or increase in lung mets size.My oncologist in Houston says to remain on Votrient as long as its working.While,my oncologist here...