Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi 'F', Such difficult decisions to make. Even with lots of information, it is difficult to know what the best route will be. Please know that you and your family continue to be in my thoughts and prayers as you make these decisions. As always, I admire your tenacity and fight for the health of your...

Hello again, Thank you all for your words of encouragement and wisdom. I really appreciate the information. I have contacted Boston (Dana Farber) and we will discuss options. I have also made an appointment with a local doc who will sit down with me and review the scans so that we can make some info...

Greetings ASPS friends, I am sorry it has been so long since my last post. Please know that I check the updates regularly. All of you are always in my prayers and thoughts. It is always so helpful and encouraging to know how all of you are doing. I wanted to ask for some advice. As you know, my meta...

Hi 'F', Thank you so much for your update on 'K'. I am sure things have been very busy around your house with this new change in plans. I just wanted to let you know that I am praying for you and your family. Praying that 'K' will respond wonderfully to his new treatment. Please keep us posted on ho...

Hi Theresa, Thank you so much for writing and sharing your story with us. I am so sorry you are having to go through this. And I am so glad that you have found this website. You will find lots of support here and you will find people who honestly understand what you are dealing with. I, like you, fo...

Hi 'F', I hope this finds you doing well. The ARQ 197 trial has been going well so far. I stared taking the drug on Feb. 12th and so far there are really no side effects. Occasionally there is a touch of nausea, but nothing serious. I am able to keep my regular work schedule and keep up with family ...

Greetings ASPS community, This is Karen Imm. I just wanted to make you aware that I have started the ARQ 197 trial. I am working with Dr. Wagner at Dana Farber. I have been taking the drug for about 10 days so far. No serious side effects. (While in Boston, I fell and broke my kneecap for the 5th ti...

Hi Sherree, Thank you so much for keeping us informed on your husband's upcoming scans. My thoughts and prayers will be with you on the 17th. I hope you are able to let us all know the outcome. I also hope you are able to convince the doctors of the importance of some type of treatment. As I have wr...

Hi Sheree, This is Karen again. I wanted to answer some of your questions. First, I am living in the United States. My primary tumor was in my right thigh as well and I had radiation done to the leg. It was not successful. However, when the tumor by my trachea and heart appeared, it grew pretty quic...

Hi Sheree, My name is Karen. I have been fighting ASPS for 7 years now. I am so sorry for what you and your husband are going through. I know how helpless it can feel. I also wanted to share with you that I have had tumors on my trachea and around it. I had one large tumor that no surgeon would touc...

Merry Christmas, This is Karen Imm writing. It has been a while since I have posted an update. For those of you who don't know, I will give a brief background. I was dx. with ASPS in Jan. 2000. Had surgery, chemo (adriamyacin and ifosfimide) and intra operative along with external radiation. My leg ...

Hi there, I wanted to comment on heart mets. Although, it is rare, APSP can travel to the heart. I have had 2 open heart surgeries to remove tumors. The first one was the size of a lime and the second was slightly smaller. They have had to rebuild my heart and have let it be known that they cannot d...