Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thank you all so much for your condolences. Each post meant a lot to me. It has been 2 years and 2 1/2 months since Patti left us, and we are approaching our 3rd Christmas without her. It's hard. She is still very much missed as a wife, mother, daughter, aunt, friend.... etc. Those who have experien...

MD Anderson is a good place. I sent you a private message.
Trixi

Prayers for successful surgery on March 12 with optimal results.

Hello Josh,
I'm so glad your case of ASPS was detected and diagnosed and you have options for treatment. I'm also glad you found this board where so many concerned and caring people have a lot of experience with dealing with ASPS and are willing to share.
Prayerfully,
Trixi

Dear Miller, I'm so sorry about your friend's latest diagnosis and I do hope that she can be treated effectively and overcome this latest hurdle.... like so many others whom we read about here in this forum. As for the children and how or how much to tell especially the older child.... Well, that's ...

Thank you for your kind words, Miller & everyone else.
We miss Patti so very much.

Thank you Amanda. I have let my friend know how strongly you and Bonni feel about this - coming from where you have been in your research and personal experience - and I certainly hope they will follow through... and I hope they will find that the lump in back of little Wyatt's knee is indeed harmle...

Thank you, Bonni. You bless and help so many people with your committment, deep and genuine concern, and your personal research and sharing of knowledge gained through Brittany's journey with ASPS.
God bless you,
Trixi

Wow... reading this report is overwhelming. I will keep Brittany covered in prayer for health/healing and well-being in her body... and the doctors for wisdom in making the correct decisions concerning Brittany's continued treatment plan.
Trixi

Thank you for your explanation. I hate both types - if in fact there are two different types. And I hate that doctors do not put more effort into diagnosing. Just today I spoke to a friend whose 6 year old grandson has a lump in the back of his knee. The pediatrician is totally unconcerned ... "...

Dear Keola, Your story is so sad, and so scary, because it seems many times ASPS goes undected for too long, or is misdiagnosed. Doctors unfortunately just do not seem to grasp what they are dealing with early on. It's such a rare disease. I certainly hope and pray there is a good treatment option f...

Dear Amanda and Bonni,
First off, I am so glad to hear Amanda's good report and all the good reports about folks who have NED. I'm so thankful that NED status is possible with ASPS. You both mentioned the possibility of two types of ASPS. Please explain.

Thank you so very much for your sweet lines, Bonnie. We are still so stunned and the grief is nearly unbearable at times. It is incredible how in just a few months time ASPS has attacked and hurt our family and circle of friends. None of us had ever even heard of it until Patti's diagnosis. Patti wa...

Thank you, Amanda.

We collected pretty much all of Patti's health records from the various procedures done by various physicians in the Houston area in the past 30 years and provided everything to Dr. Patel's office in the sarcoma department of MD Anderson here in Houston. I don't know if these records would be of ben...