Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear Janice, Thank you for your thoughtful update I am very grateful that Alex's brain MRI and scan of his primary tumor site were clear. I am sorry, but unfortunately not surprised given the metastatic nature of this disease, about the two small lung mets. It is very frustrating that the doctors di...

Dear Nhi, I am sharing rhe great relief of your clear brain MRI results with greatest happiness, and am very grateful that you will be starting your Keytruda treatment this week to try to stabilize your disease progression and shrink/destroy your existing mets. I Hope that you tolerate the Keytruda ...

Dear Olga, Thank you for your very caring response, and helpful suggestion. We will share your intriguing idea with Brittany's excellent long time radiation oncologist who is very familiar with all of Brittany's brain treatments and procedures. We are deeply grateful for your highly valued and respe...

Dear Johannes, It is so good to hear from you and especially good to hear the very good and encouraging news of dear Elisa's very successful response to her combination Keytruda and Inlyta (Axitinib) treatment with lung met shrinkage, stabilization of her disease, and the dramatic shrinkage of her v...

Dear ASPS Community Friends, I am very happy to report that Brittany's yesterday's 5 month brain and spine MRI's at the University of Washington in Seattle VERY gratefully and relievingly showed no new brain or spine mets and continued disease stability in those areas. Based on these continued very ...

Dear Janice, Thank you for your very thoughtful response. I am grateful that you are moving forward with pursuing my scan scheduling recommendations. Unfortunately,, with ASPS, ignorance is not bliss, and being as well informed and knowledgeable as possible is one of our strongest weapons in fightin...

Dear Janice, My name is Bonni Hess, mother of now 36 year old Brittany who was, like your dear son Alex, diagnosed at age 19 with the primary tumor in her thigh. She has courageously battled this insidious disease for the past 17 and a half years through 23+ surgeries/ablations/radiosurgeries and 3 ...

Thank you for your explanation regarding your manubrium met biopsy dear Nhi. Frustratingly, many doctors automatically order biopsies for their ASPS patients which seems an unnecessary procedure given the well known nature of this disease to metastasize to many areas of the body, and the almost cert...

Dear Jussi, I am so sorry about your seizure and the ongoing challenges in your courageous ASPS battle. Has a cause for your seizure been determined (we are still waiting to meet with Brittany's neurologist this coming week to find out if Brittany's February EEG provided any information about the ca...

Thank you for the updated information Nhi. I am perplexed as to why a biopsy was done of the manubrium met since with the well known nature of this disease to metastasize, an invasive biopsy to confirm that it is ASPS seems like an unnecessary procedure that risks dissemination of the tumor cells th...

Dear Nhi. I am thinking about you and sending best wishes and most positive thoughts today as you have your PET scan and meet with your oncologist to discuss treatment options. Based on my extensive personal experience, observations, and research, I disagree with your oncologist about a PET scan bei...

Thank you for the additional shared information Olga. I assume that Ivan's blood glucose level is also being monitored since diabetes is a reported side effect of Keytruda. A Keytruda patient on the Facebook ASPS site is having a successful response to his Keytruda treatment with shrinkage and disap...

ALL GOOD NEWS Ivan!! Thank you for sharing and providing strengthened Hope to those of us in the ASPS Community. CELEBRATING with you and your family, Hoping for continued good scan results with more met shrinkage/disappearance and stable disease. and reaching out to embrace you with happy hugs, spe...

Hello again dear Nhi, Thank you for your very prompt response and the additional shared information regarding the time frame during which you took hormones for egg retrieval. I am grateful that you are aware of the concerning effect of hormones on cancer. I am grateful too for your knowledgeable and...

Dear Nhi, In thinking about your disease progression other than just the known nature of this disease to eventually progress, and knowing that Sutent has unfortunately not been shown to provide long term sustained disease stability for the majority of ASPS patients, and since your new mets apparentl...