Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello :) I am so glad no traveling for him an he can stay put! I am still confused why the radiation but i am sure he wouldn't allow them to do something stupid to him! How is the wound? Wow do i know how he feels with this dam pain!!! Are they going to give him also injections? I cant believe you w...

Hi <3 Thank you for thinking about me! I am going tomorrow an thats the plan i think the pain Dr said was shots... The muscle spasm seems to be messing a lot with tendons and ligaments :( the pain is horrid! I think it is cortisone an lidocaine? I could be way off though... I forced myself to take a...

Hi Deb :) Its normal to bring some stuff up after this happens an no its not infected :) Yes, other than my dam neck shoulder i am almost 90% now.. but, its healing slow i am sure all this other pain is not letting up an today i am calling an getting injections! I am sick of this sh&&! I had...

Hello Bonni <3 The tumor on the bronchial right lower lobe was 2.6 about. an he froze a 4 cm area to kill the field. He did say that because of the size he may have to do some re do on some tumors. But, he feels confident he will slowly kill them all :) This was said before we did this an now he fee...

I know of a patient that did this.. They didn't have asps though.
They are fine now as far as i can remember.
I wish i could remember what they had an stage :/

Hello i am home :) It went amazing! Very little bleeding if at all! An it was a 4cm ablat area he wanted margins :) My doctor is amazing!!!!!! we now have a west coast doctor that can do this !!! This was managed better than almost any thing i have ever had done! I have NEVER had a doctor manage eve...

Olga, he said it could go bad an they may have to take my right lobe.. but he said they have to tell you the bad stuff also an that he felt this wouldn't happen :( Does Dr L tell you that stuff also? WHY AM I SO FRIGHTENED!!! its ridiculous! I keep thinking it will be like my other surgeries.. i am ...

Hello Debbi <3 I just saw your question about insurance covering this procedure an i was covered by Cigna. Now it maybe the type of coverage i have but that would be ridiculous and i'm also thinking illegal for an insurance company to deny treatments because of the type of coverage a patient has. So...

Bonni
::snoopy dancing:::

I remember when she started! Wow, it has been a long time an this is wonderful <3
How is she feeling?

I am glad all is looking good )

I am going to get my first treatment thursday *sigh* i hate sarcoma lol

I used this cream they gave me it is basically advil in a cream form so it is better on your kidneys an liver an all the other stuff! ITS WORKING already! 30 minutes later an i am at a lvl 3 pain now :))) it is called Voltaren 1% If anyone is having inflammation and pain this is working for me an i ...

OMG! I used the cream they gave me it is basicly advil in a cream form so it is better on your kidneys an liver an all the other stuff! ITS WORKING already! 30 minutes later an i am at a lvl 3 pain now :))) it is called Voltaren 1% If anyone is having inflammation an pain this is working for me an i...

Hello :) Well. for the first time ever i saw a pain doctor.. this pain is soooooo bad! He said nerve and muscle spasms an i agree an omg again soo much pain :( It is from the head an neck surgery. I am taking the norco an i will be starting lidocaine patches where it hurts an also i am going to use ...

Dear Margie :) I am here if you need me an right now i am blessed that i can have the treatments an not surgeries an will be ok an monitored! I will help you in any way i can. I am seeing my Onc for my pre Op on monday an i will discuss this situation with him :) I am SURE there is a sarcoma special...

Ok i think it is time we reach out beyond who he is seeing... Is there anyone in this forums that knows of anyone at the NIH? Or anyone with an rare cancer group that is world wide? Margie can you get him to the USA if there was help? or to another country that would have a doctor to help? I truly n...