Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Wow. Thanks for the support Ivan, Olga, and Bonni! It means a lot for me. The amputation do make my body feels better by a lot. Before the amputation I always feel cold. Wear thick jacket all the time. Now after the amputation, I'm back to normal. And now after taking 1 week of 25 mg sutent, I feel ...

Sorry it's been so long since the last time I updated. After the scan, I ask my doctor for amputation. And after break on sutent for 2 weeks, I had my right leg above knee amputation on 28th of March. Currently I'm back resting at home and starting sutent 25 mg without break. The differences between...

the scan

I just did some browsing, i think we have pazopanib or votrient here.. will check again in the afternoon. Hopefully they have a donation program...

Today is my 6th day of sutent.. will arrange the surgery 1-2 weeks ahead.

As for TKI there's sorafenib here.. nevaxar by bayer if im not mistaken... will find info about it..

Olga, what about the anaesthetic? Can i go local anaesthetic?

Olga - will do your advice... about the scan i will found more info. Maybe the other hospital has it. Or i go to jakarta which is the capital oh indonesia and only 2 hours away by car Bonni - i havent consult about the amputation, so still no surgeon.. if sarcoma surgeon needed, i will go jakarta.. ...

Hi Bonni, have you seen the pic i attached? The blood vena and arteri is in a very bad condition of av shunt.. Its not possible to only resect the met especially the bone is badly destructed.. I think i will do amputation as it remove the main tumor, the av shunt and the destructed bone.. Im so read...

The lung biggest met is -36 x 30 left lung -40 x 30 right lung.. I suspect its not a tumor because: - i never had any symptoms since i had my first stroke maybe because i consume sutent and sutent always shrink and calm the main met in my right calf. - i dont experience paralisis or headache althoug...

The scan is out.. btw when i was going for MRI it happened that my city don't have the technology. So I did ct scan instead. The result says that my lung is getting worse.. so do my calf. But both of humerus shrink by a lot.. about the brain, the doctor here said it's an abcess not tumor... the abce...

I'll get the result latest by tomorrow.. will post the board the result and upload the scan if possible..

Btw I'm curious. What diet I suppose to do? People are saying that I shouldn't eat meats, but when I ask doctors, they said it's ok. The doctor only ask me not to eat star fruit, grape fruit l.

Thanks for the reply bonni and olga.. the scan is not out yet. Hopefully its resectable.

If im going to do both surgery, is it suppose to be at the same time?

Hi all.. would like to ask the board opinions. Im currently on 37.5 / 25 sutent just what like you guys suggested. And I still have the side effect. So I was thinking I want to take efficient break. What I meant is, I wanted to do surgery.. while taking a 2 weeks break before the surgery, I can reco...

Ivan - yes I've consult with my doctor and she prescribed a mouth rinse and some medicine. Olga - I've consult with my oncologist and he recommended me to take a short break. Then continue with 25.5 mg nonstop. Cindy - thanks Cindy for the input, I asked my doctor for mouth rinse and so far its good...

Dear Olga, I'm sorry I didn't read your post. I had ct scan back in Singapore. Currently I'm suffering because of the sutent's side effect. My mouth is very painful that I barely able to eat. Should I break sutent first? If yes, how long? Ive been taking sutent 37.5 mg without break (just as what th...

Im going to do leg and humerus mri with contrast.. then brain ct and lung ct. The lung ct is is needed for anaesthetic purpose the doctor said. I was wondering, can sutent shrink my brain met? If yes, is it possible my brain met shrink until its operable with gamma knife? Thanks for the concern, Rhe...