Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear ASPS Community Friends, I am so sorry that I have been so absent from participating on the Forum the past several months, but I have been immersed in severe post op pain, complications, and a very difficult recovery from a flawed L4- L5 lumbar laminectomy in April. As I continue my recovery I w...

Dear Sharmaine, As I expressed to you on the ASPS Facebook site, I am so very sorry for your disease progression and new challenges, but I a grateful that you now reached out to the CureASPS Board for information and input. As always, Olga has provided some excellent and very knowledgeable informati...

Dear Tanja, Thank you for your thoughtful update. I am grateful that things are moving forward in a positive direction to treat dear Saskia's multiple brain mets without the concerning use of unproven WBR. It is very frustrating, although given the rarity of ASPS, not surprising that the doctors wer...

Dear Debbie, Thank you for all of the updated information, and best wishes that the lung biopsy results that you are scheduled to receive today will provide some helpful information to help guide your treatment decision to address and resolve dear Josh's chest inflammation. With special caring thoug...

Hello again dear Tanja, I am so grateful that dear Saskia is receiving good care and that she is recovering well enough to come home in a week :) There is truly no place like Home for healing ;) I am sorry about the obstacles that you are encountering in your efforts to obtain the best brain met tre...

Dear Tanja, Thank you for your thoughtful detailed updates in the midst of what I know must be your complete emotional and physical exhaustion. Olga and Debbie have provided you with some very good information and input which I agree with. It will be important to discuss with the neurologist and rad...

Dear Tanja, Thank you for your faithful updates in the midst of all that you and dear Saskia have been through. I know FAR too well how extremely physically and emotionally exhausted you must be. I am deeply grateful that you are so pro-active and knowledgeable, and that you are providing so much st...

Thank you for your thoughtful update dear Debbie. I am so sorry about dear Josh's chest inflammation and pneumonia, and Hope that a benign and easily treatable and resolvable cause can be found. I am personally not an advocate of needle biopsies due to the risk of spreading tumor cells through the b...

Thank you for your thoughtful update dear Debbie. I am so sorry about dear Josh's chest inflammation and pneumonia and Hope that you will get some benign easily treated and resolveable answers. I am personally not an advocate of needle biopsies because of concerns about spreading tumor cells into th...

Dear Tanja, I am so sorry for having not been able to respond to your posts the past several months, but have been immersed in personal family health and other issues, and am very grateful for the very good advice that Olga and Debbie have been providing for you. I am deeply sorry for all of the inc...

Dear ASPS Community Friends, I Hope that the New Year 2020 will bring you all happiness, good health, and healing Hope. Our New Year has begun with Brittany's January 16th VERY GOOD four month Clinical Trial chest CT and abdominal/pelvic MRI scan results which VERY thankfully showed continued sustai...

Dear Kathy, I am so sorry about Tom's recent diagnosis of possible sacrum and rib mets, and my heart and most caring thoughts are with both of you and your family. Since I don't have any direct personal experience with any of the Immune Checkpoint Inhibitor drugs like Atezolizumab, I am unable to of...

Welcome to your new Home in California dear Nhi, and thank you for somehow finding/making the time to update this Board. I am humbled by your ability and energy to make so many major Life transitions while continuing to courageously battle your ASPS. I Hope that you have been able to find a good ,kn...

Dear Debbie, Thank you for your faithful caring concern, strengthening support, and valued input. Brittany's TSH levels are always checked through her blood work when she has her Clinical Trial scans in Edmonton every four months. I think that your idea of having her see an endocrinoligist is a very...

Dear Olga, As always, your special caring and your very knowledgeable response is deeply appreciated. Brittany has not (yet) been treated for migraines, so the triptan issue would not be relevant, but it is certainly valuable information which may be helpful to us in the future. I am very sorry that...